Children with Disabilities: Children Who Are Born and Live With Disability Labels

Attention High School Students with IEPs & 504 Plans

2012-01-27T05:57:00.000-08:00

Don't want to miss any of the four sessions designed for parents who have students transitioning -- when high school ends and the bus stops coming!

Dates: February 7, February 21, March 6, and March 20th

Time: 6:30 to -9 pm

No fee! No cost!

Where: 5th Floor Conference Room in Children's DDBP Building, 3430 Burnett Avenue, 45229

For more information or to register by phone, contact Barbara at 513-221-4606

Register here pressing "buy tickets" (no charge)

Play ball!

2012-01-20T10:10:00.001-08:00

What I Want For Christmas ...

2011-12-16T10:42:00.000-08:00

We need Gov. Kasich'a leadership to stop HB136 - a house bill ready for vote that allows public funds to be used for vouchers for families making $95,0000 less to pay for parochial and private tuition.

HB136 is misleading voters and will only anger Ohioans down the road when they realize they've been duped and lead astray by a small group of Ohioans and their representatives who have a political axe to grind about unions and public school education. Furthermore, they're using our children with disabilities to pass a bill that will have no impact on their ability to receive special services outside the school district due to current statues and laws.

First of all, it is the Governor's responsibility to clarify for voters that voucher money is not going to fall from the sky, the Ohio Treasury, or out of taxes currently being used to pay for public schools. He is required to be upfront about where Ohio district schools will get the additional money to give vouchers to 80,000 families making less than $95,000 & currently attending private and parochial schools. Last time I checked the census, the majority of Ohioans make less than $95,000.

It is also Governor Kasich's responsibility to inform families who believe that a "voucher" will give them direct access to special education services. That's not true. It has always been the school district representatives & IEP team (parents included) that determine "services" according to current state statutes and federal law. No voucher or state legislation can change that unless they change current Ohio statutes and federal law.

If students require special education services that cannot be provided by the school district due to their disability, federal law requires the school to provide it through "continuum of alternative services." This is how my 17 year daughter is attending a special therapy school operated by HC/dds in Cincinnati since she was school-age ready. I didn't need a voucher to do this 11 years ago because special education rights are guarenteed and protected by current state statutes during Gov. Taft's administration complying with federal law. He actually closed hundreds of state funded MR/dd therapy schools and discontinued contracts with service organizations throughout Ohio because his administration believed there was a duplication of services provided by the school districts.

By supporting and signing this bill, Gov. Kasich will be perpetuating a legacy for increasing property taxes because HB 136 turns the state’s obligation of providing a thorough and efficient “system” of public education into a private benefit resulting in unprecedented levels of voucher expansions that will have a financial impact for every school district in the state! Down the road, tax payers who pay for for public education will eventually see that Gov. Kasich doubled the tax burden. Does he want his legacy to be one where he wasted more tax payer money through repeals, lawsuits, and higher taxes by supporting and signing this voucher bill?

Ohio's Issue 3: The One that Got Away ...

2011-11-29T08:31:00.000-08:00

Issue 3 passed by a much larger margin because voters thought the new healthcare bill the President signed off on last year took away choice? The official language of the issue said it was a proposal designed to "preserve the freedom of Ohioans to choose their health care." What if you didn't have choice before the healthcare bill was signed into legislation? What if the new healthcare bill actually opened the door for children with disabilities?

Elisabeth never had a choice about healthcare through Anthem before the healthcare was signed into legislation. Her parents were stuck paying higher premiums because of her "pre-existing condition." Never mind that that none of the claims we've filed since her birth had a single thing to do with her "pre-existing condition."

A child who survived leukemia didn't have any choice, either. The new healthcare law protected this child from insurance companies who ould hike up premiums because they know they can. Parents of children surviving cancer had no other alternative. They were denied from choosing a healthcare option that would give their child the best care for the little money they had.

Issue 3 actually took away the rights of the individuals choose their health care. The individuals who were paying thousands of dollars in monthly premiums just to keep their health care for their child with disability.

People (who don't have children with disabilities) wonder why we parents who have children with disabilities feel like we live on the margin in our society? We're not asking for center stage or the spotlight. All we want is a system that is fair for our children.

Issue 3 was clearly one-sided with a much broader political agenda under which none of our children ever fit in.

Respite Care Night!

2011-10-14T19:46:00.001-07:00

Respite Care Night
Saturday, October 22, 2011
6-9 PM
... White Oak Christian Church

The Special Needs Ministry of White Oak Christian Church
is offering an evening of FUN activities for children with special needs AND their siblings. Parents can take a break and enjoy a night out!

This event is FREE but you must register. Registration will be open until all spots are filled. Children ages 0-18 are invited to attend.

For more information or to register, visit our web site: www.thewocc.com

Err on the Side of Safety

2011-09-15T16:19:00.000-07:00

So I got this call around 3:30 pm stating in a "matter-of-fact" tone the vehicle transporting my daughter had an accident and that she's okay.

The phone call was not from the police officer or anyone qualified to verify if Elisabeth was okay. The call came from the business office of the transportation service who was notified by the driver. I didn't get any details other than "she's on her way home" and "they had to switch vans" and it's a "fender bender thing" and "I am required to notify you that there was an accident."

No big deal, right?

So I started calling the non-emergency police dispatcher numbers to verify exactly what happened. Elisabeth is non-verbal and cannot communicate if there is something wrong with her. I heard from the police dispatcher there was an accident and no injuries were reported and police officers were attending the scene and someone would get back with me. One hour later, Elisabeth arrived home in a transportation van with a dried bloody nose and blood on her shirt.

So I asked the driver what happened. He identified himself as the mechanic for the transporation company and that the driver from the accident was in the back of the van. The driver who had the accident was sitting on the bench behind Elisabeth's chair.

So I asked the driver if he was okay. And he nodded. Then I asked what happened and if there was anything I should know about the impact. He was unintelligable. So I asked him, "Are you parent? If this was your child and she was unable to tell you what happened, what would you do?"

He just looked at me blankly. The mechanic answered, "Do what you think is best for your child."

So I asked, "How was anyone able to determine if Elisabeth sustained any injuries? Was there a police officer or medic present?"

I was told, "Yes. The police officer wiped blood from her nose."

I asked, "Can anyone tell me if she hit her head or her if her chair tipped or wobbled from the impact or if it was a severe enough impact that she could have sustained internal injuries?"

No answer.

Okay, I get it. This isn't about my daughter's safety anymore. This about their procedure.

Finally, the traffic police officer called and informed me that the van was traveling on the Norwood Lateral and came to a sudden stop, hit the car in front of him, so he steered the vehicle off the road hitting a tree. The police officer stated when he arrived Elisabeth was already off the van. She was taken off the bus by the driver of the van. I asked, "Are you the officer who wiped the blood from her nose?"

He said, "Yes. I asked the driver if he thought she was okay."

So I asked, "How would he know? This was the first time he picked he up. Who was able to determine if Elisabeth sustained any injuries since she cannot communicate what happened?"

The officer apologized and said he the driver stated that knew her and said, "I'm really sorry."

So I asked, "Looking at that accident, the impact, the damage to the van, would you have taken my daughter to the hospital if she was your child? "

He apologized again and said, "I was going by what the driver had told me. I thought he knew her. Is she okay?"

Finally, somebody actually gets it! Thank you, God!

I told him, I'm not really sure. Her Dad took her to the hospital just to check things out. I told him, "You know it's very difficult for us to determine when things are not right with Elisabeth. I imagine it would be very difficult for a stranger to determine if there was something wrong with her. It's a learning experience for all of us, isn't it?"

I asked him, "Did you notice any marks on the wheelchair to see if there was any impact? Any scratches or dents? That would indicate something, right?"

He said that he's becoming more and more aware of the challenges parents face raising kids with disabilities. He said the experience really opened his eyes to the challenges many kids with disabilities have even when we think they are safe.

After I hung up with the police officer, I called the transportation company about their "safety procedure" and shared what the police officer told me about the accident. It wasn't a fender bender. The driver hit the car in front, and drove the vehicle into a tree.

Next, I suggested that in the future should an accident happen involving a child with or without disabilities to please instruct drivers who do not know the children to tell the police, "I do not know this child and cannot determine whether this child is injured or not." It should also be part of the procedure for a police officer to check the wheelchair for signs of impact or stress and also look at the straps and buckles securing the wheelchair to see for signs of stress.

Elisabeth just came home from Children's Hospital. Her nose did have a small cut inside. It's a little swollen. We were told that because they cannot see any of the typical abrasions from shoulder and lap belts, it's really difficult to determine the extent of her injuries. But, if we noticed any changes in her behavior or she vomits or if her nose starts to bleed to bring her back to the ER.

In hindsight, I recognized that at the very least she experienced something that scared her. Her diaper when she arrived home directly after the accident was full and she was soaked. If he lifted her out of the chair, he must have noticed she was soaked which indicated that at the very least, she was scared ...

Buyer Beware ...

2011-05-21T22:52:00.000-07:00

Advice from Elisabeth's Uncle John:

While many of the financial planners are legit, there are similar groups positioning themselves as financial planners, when in reality are thinly veiled product pushers.

Blogging about special interest groups is a broad topic; families have very different needs. Just like Elisabeth, the nuances of each family is very different from others. I am a big believer in the expression how you structure your investments (i.e. trusts, and specific disciplines in investing) is much more important than what you ultimately invest in, whether it be insurance,stocks, mutual funds or annuities.

My advice here - start with the legal side of structuring assets for adult children with disabilities. This is where you need to understand structure. The investments will fall in place from there.

Valerie's Mom

2011-04-27T05:53:00.000-07:00

I was in high school when I first heard her sing and remember the life changing interview she gave after the birth of her daughter, Valerie. Not everyone can do this with the grace and dignity that Phoebe had.

Phoebe Snow dies at 60; singer of 1974 hit 'Poetry Man'

Geriatric Care for Mom

2011-04-12T07:23:00.000-07:00

CARING FOR MOM

Location: The Grove Banquet Hall (9158 Winton Road)

Free Seminar!

Register by calling 522-1154, or register online

Presented by Micki Fehring, RN, in partnership with West College Hill, North College Hill and Springfield Township Senior Centers

Caring for a parent comes with many challenges. Juggling between your child’s soccer game and your mother’s doctor’s appointments - managing to balance it all. Whether you are one of the 42 million people currently caring for an older adult or are just approaching the years when its time to take care of mom, this seminar will held guide you through resources you will need to make difficult decisions easier. Join us at Springfield Township’s Grove Banquet Hall to learn more about the vast options of care and tour through resources available to caregivers. Geriatric Care Manager, Micki Fehring, RN, will cover information on:

The stress of multi-generational care
Understanding the choices in care
How to pay for in-home care
Safety and independence

You will leave this series with a better understanding of the different types of care available and will be given a take-home resource guide.There will also be a series of follow-up sessions introduced that will focus more on one specific topic.(Dates for follow-up courses will be provided at the seminar)

About the presenter – Micki Fehring has been a registered nurse for over 15 years and is currently a Geriatric Care Manager for Care Advisers by Black Stone. Her role allows her to asses a patient’s needs, present them with the best choices of care and arrange for the care to begin.

Wednesday, May 18 6:00 p.m. – 8:00 p.m. **Light dinner will be provided**

Mainstreaming or Warehousing?

2011-03-22T08:12:00.000-07:00

"Mainstreaming theory in some case exempts the student from learning according to their ability, skill level, and developmental pattern. They will never reach their greatest potential."

I've been reading a lot of articles about mainstreaming. What we fail to understand is that there is a river of difference in mainstreaming theory and mainstreaming reality.

In theory, it works only when there are plenty of available resources, time, and finances. In order for it to work for the individual, mainstreaming is a long-term process requiring everyone in the community from the mayor or city manager on down.

Unfortunately today, mainstreaming reality is still in a vision involving coordination from people and organizations most of which exist on the margins of our society in terms of funding and support. In fact most of these organizations that advocate for the rights of people with special needs are not even mainstreamed into our society!

We hope that one day all our children will be mainstreamed into community life where they are embraced and accepted for who they are instead of what they aren't. Planting those seeds requires tapping into the education system. And good luck especially due to all the schools letting go their teachers because the budget cuts at the state level have been severe and steady in Ohio since 1998.

What our government has developed for the schools as "mainstreaming" is a package deal claiming that all kids can be included in the classroom as participants and school related social settings regardless of their disability. In reality, we hope they are, but many are only visible and not included. Their needs are just being "warehoused" until they go home.

Buying into this neatly packaged "mainstream reality" involves developing an IEP (Individualized Education Plan), a 503 plan, or behavior plan. In the IEP, for example, are specific objectives and goals for the child and additional assisting technologies, therapeutic services, and adaptive aids to accommodate the child's needs in the classroom. For some children, an IEP is what separates them from the rest of the class so they can learn according to their "own ability."

For some children who are globally or developmentally delayed, children who process information differently, and children who have have neurological-diverse behaviors emerging, being in the classroom with their biological peers who are on "curriculum track" may be counterproductive or irrelevant. In this case, parents, advocates, and school district representatives should seek out alternative special education environments or services that will match the child's ability. An environment that promotes learning based on the child's ability.

When alternatives are not offered or not available or if school does not support a particular "ALTERNATIVE" service that might greatly enhance a child's special education experience, many times parents and caregivers are forced into accepting the district's school-government "mainstreaming" option. In other cases, parents and caregivers have elected to keep their child at home.

Since I can only go by personal experiences as a mother and by what I have experienced by working in schools, all I can say that most parents and caregivers are absolutely clueless about what goes on in the classroom where the child is presumed to be "mainstreamed. Many parents are clueless because their view of mainstreaming is based on the theory, not the true reality.

Not all children benefit from mainstreaming, but this information is not given to parents during meetings. In some case studies, mainstreaming in the classroom interferes with the child's progress. It might trigger sensory issues a in the case of some children diagnoses ASD.

Unfortunately there are no alternatives in some school districts. In other schools, alternatives exist but it is not supported by the school district so most children settle for mainstreaming theory which turned out to be nothing more than babysitting services or "warehousing" a child's needs until the school day is over.

Sure, once in a while the parents are invited to school-related programs where they see their child "included" with the rest of the kids and everybody goes home happy that the child is "mainstreamed" but this is where the mainstreaming begins and ends for many of our children with varying abilities.

For many of the schools offering packaged mainstreaming where children's needs are being warehoused, all I see are kids being pulled in and out of classrooms and in some cases, roaming around the school or left in "a special resources room."

I see kids who are not expected to develop or learn according to their own ability since they are also exempt from most classroom activities, tests, and given alternative assessments. Sure, they have IEPs and 503s and behavior plans, and the paperwork is getting done, but the kids are not getting any benefit from this situation because in this mainstreaming "reality" created by government and districts schools, children are not expected to do anything. Mainstreaming theory exempts some children from learning according to their ability, skill level, and developmental pattern.

Grant it, I have seen many special education environments that can accommodate a diversity of special education needs for many different children but this is not mainstreaming. This is offering separate, equitable, and equal opportunities for the individual child and I see nothing wrong with this alternative.

On eric.ed.gov website, there are annotated bibliographic records for more than 1.2 million articles about special education that have been indexed since 1966, including:

journal articles
books
research syntheses
conference papers
technical reports
policy papers, and
other education-related materials

I encourage each and every caregiver or parent of a child with special needs to read over the current research about the challenges of mainstreaming in the classroom -- specifically learning what "individualized special education" means and how their son or daughter can benefit from it.

Our understanding of mainstreaming has changed over the years. Clearly, "mainstreaming" is not for every child. We cannot build our our entire education system with a "one size fits all" model when it comes to providing special education opportunities for our children.

"The Father Factor"

2011-03-20T05:35:00.000-07:00

Bobbie B. Fairfax School is presenting Dr. Robert Naseef this Thursday, March 24th at 7 p.m. until 8:30 or so. Please RSVP Diane Ritter by calling 513-559-6719 or email her at diane.ritter@hamiltondds.org

Volcanic Wheels For Wheelchairs

2011-03-18T02:48:00.000-07:00

Just a quick update here for families and friends looking for gift ideas. The volcanic wheels for front wheels draws a lot of attention to Elisabeth. We have a set each on the Metro and her Titelite wheelchair. It also draws in conversations to her directly. People generally ask, "Hey, that's so cool, where did you get those?" We paid around $20.00 for each wheel and $6.00 for shipping. A trip to the hardware store will get you the spacers otherwise the bearing slip out and the magnetic core that triggers the lights to flash will crack & crumble which is what happened to us while on vacation just a short time ago. Fortunately the hotel maintenance crew in Miami were very friendly and found us washers that fit perfectly. The Volcanic Wheels sent us one new magnetic bearing for the one wheel that could not be salvaged.

The grande wheel will fit the front wheel of most wheelchairs. Here's contact info:

DRI Products, Inc. For Orders in US : 1 - 8 - ONLY WHEEL (1-866-599-4335)
1160 N. Central Ave #A209Glendale, CA 91202 USA

General: info@volcanicwheel.comSales: sales@volcanicwheel.comCustomer Service: service@volcanicwheel.com

Éirigh Suas a Stóirín (Rise Up My Darling!)

2011-03-17T08:38:00.000-07:00

Between the radiation fallout, Japan's disasters, and the Danny Hakim's article last Sunday, I wonder if there is any hope for us or is this part of the ebb and flow of a planet spinning.

For any of you participating in that pilgrimage from St. Patrick's Church in Saul, Ireland, to Down Cathedral in Downpatrick, send us a little love to Japan.

In the meantime, I'll be filling up on a little Éirigh Suas a Stóirín myself!

Happy St. Paddy's Day ya'll!

And Deliver Us From Evil...

2011-03-13T07:06:00.000-07:00

This morning in the NYTimes, I wake up to Danny Hakim's story about group homes in New York. I don't know whether to be angry or relieved about what his investigation turned up.

It's "the nightmare" most of us live with and the reason why we hold on to caring for Elisabeth because she is the most vulnerable here.

Instead of crimes like rape being committed against them in institutions tucked away from society, the crimes are being perpetrated right from under our noses, in our own neighborhoods. Maybe it's not where we put them for independent living that is the problem. Maybe it's with whom we put them in regard to "group homes" independent lifestyles.

The issue (unfortunately) will become another political debate about how unions and state funded programs are no longer reliable. The debate will be about how we are wasting our money on government programs instead of looking at ways we can make it safer.

Our voices are never heard and drowned out by politicians who want to wittle away at government funding for our children. The same people who will never be in need of assisted living housing even though we are a nano second from becoming disabled. The same people who will have the financial resources and support to put their loved one's in the best of care. (On the flip side, we figured out that it's cheaper to send Elisabeth on a cruise the rest of her life than it would be for her to live in even the cheapest assisted living home here in Cincinnati.)

Naturally, many people tend to think that privatizing care is the only solution when in reality we just traveled down that road not so long ago in Texas. Remember when we found all those residents living in filth because the housing went unregulated and unsupervised? In fact, privatizing care will only create more inequity in housing options for our family and friends.

Instead, we should be debating the "quality of care" regardless whether it's a private or state funded home. We need to make it easy to get rid of people we suspect are abusing or taking advantage of our family and friends. And we need to do away with this mentality of "out of sight, out of mind." Visiting them once a year? C'mon, we can do better than that! I don't care how busy you are. If we don't show how much we care about our family and friends, why would we expect others to care?

We need to put our money where our mouth is.

When it comes to clothing, toileting, showering our family and friends, there should always be at least one licensed medical professional present to supervise the attendants. Not that the LMP is less likely to do something as horrible as what we read in the article, but that there is at least one person present other than the attendant when tending to the private needs of the residents.

And we have to do a better job treating the attendants and assistants with respect. Maybe we need to be more discretionary in requiring more professional screening and training than what we allow right now. It's a difficult job caring for the adult population of special needs as many parents will tell you.

Maybe the bar isn't high enough in either private or government care. Maybe our expectation isn't high enough. Care for this population is only worth it's weight in gold....

The Big Splash

2011-03-10T12:37:00.000-08:00

Searching for the X Factor

2011-02-22T18:05:00.000-08:00

Most of the time, I admit, I operate on an emotional level when I should be using logic. Through clear deductive reasoning, for example, I would have eventually figured out those sudden outbursts made by Elisabeth were years of frustration building up maybe from not using the potty for the first 13 years of her life.

Yes, I am exaggerating a bit about the potty training because we did try in earnest every year unsuccessfully. The point is that it's never easy figuring out their pace of personal development when all we have to work with is what other children are expected to do. For some it may take an entire lifetime to reach a milestone and for others it takes only a year.

For example, when most children are completely potty trained by 4 or 5 years old, Elisabeth was at at a different level of development. According to the pediatricians and specialists, Elisabeth continued to function as a 5 or 6 month old infant in all areas of communication, fine motor, gross motor, and neurological development. So naturally as parents, we responded emotionally to her needs the way most parents would respond to a 5 or 6 month old infant.

Like most parents, we used this emotional connection to form the basis for her development overall. It made everyone around her feel good meeting her needs because it resulted in favorable responses. We saw a personality emerge. We saw progress in other areas of development.

The flip side is that keeping her in that perpetual "happy state" does not prepare her for the world outside of our home because the world simply does not function at this ongoing "happy state" level. An architect or engineer, for example, is not functioning at our "happy state" level while designing spaces and access that exceed ADA. Politicians and ethicists are not functioning in Elisabeth's "happy state" while debating and defining her quality of life and quality of care.

Are you following me here?

The point I'm trying to make is that all children are unique in their emerging abilities and different areas of development. And for most parents, it's a game of trial and error. We're all searching for that X factor. You know, that X factor. The factor that reveals itself after following the prescribed pathways created by what we see other children doing with similar abilities.

For parents and caregivers with children who are born with disability labels or who develop a label after birth finding that particular child who matches up to their own child in ability and development is challenging. Until we find that one person, all we have to go on is our own X factor. The factor we discovered in hindsight creating that emotional bond that defined for us a fleeting but tangible smile to mean a "yes" or a flinch in eyebrows to mean a "no."

Before you consider IEP (Individualized Education Plan)

2010-12-08T20:14:00.000-08:00

All schools are mandated here in Ohio to provide individualized special education plans for children with disabilities. No two plans should be alike because what is appropriate for one child with special needs may not be appropriate for another child with special needs.

First off, parents need to see what the classroom will look like to get an idea how the child will fit in. Is it the kind of environment in which the student will succeed? Is it accessible and does it have room for all the neccessary adaptions? Who will be assisting the student in the classroom? How are the assistive technologies integrated?

Secondly, the one question parent tend to forget is how the school accounts for the time while student is in the classroom. How will the IEP show how the day is structured if the student needs assistance all the time? What about when they are receiving special instruction? Will they be sharing this time with other students who also have IEPs? What if they see regression while implementing the IEP? Will they wait until the next IEP? How long is it before any changes or concerns will be addressed?

The parents should be asking at the IEP meetings what options or alternatives they have if no progress is being made before the next IEP meeting. What changes can the school make without notifying parents? What changes require notifying parents? Or what happens IF the school environment shows it is impeding the individual progress of a student? How will the school district respond?

These are issues that need to be discussed while the IEP is taking shape, before anyone signs off on any paperwork. Once these questions are addressed and noted, then the team can begin developing a plan designed for the student.

"Pick That Baby Right Up Off The Ground!"

2010-08-04T05:06:00.000-07:00

Everyone has their own story about when their own personal realization of having a child with special needs finally sinks in. The realization that those charts in books and the pediatrician's office are reserved for other children, not yours. The realization that comes after moving through those different stages of human emotion at the deep end of the universe and the euphoria afterward from knowing instinctively that maybe (just maybe)everything's going to turn out just fine.

For some parents, it's one single moment in the course a child's lifetime. For other parents, like me, it's a perpetual event orbiting around and around. It's that moment when you realize that what your child needs most in this life more than money and therapy and adaptive equipment is what most children need - tender loving care.

The challenge for many of us is being in the frame of mind for allowing this love to flow freely without the usual distractions and interruptions. The barriers. The frustrations. The anger. The jealousy. The martyrdom. The hero-worship. The failure. The blame.

Just last week, I found myself thinking about medical litigation again because a very young doctor who was giving Elisabeth her eye exam explained to me that "cortical visual impairment" which is written all over Elisabeth's birth records is a "code" for oxygen deprivation at birth.

Medical litigation? Am I crazy? No, I was angry. Very angry.

Driving home, gripping the steering wheel, I found myself (once again) searching very far, far reaches of the dark universe where the enigma of a pea-sized cyst, dilated ventricles, loosely wrapped optical nerves, and palor-macula suddenly took precedence over my precious cargo of children currently occupying my spaceship mini-van.

The dark universe where the words "agenesis of the corpus callosum" suddenly has nothing to do with my 16 year-old daughter's medical condition, her severe delay in development, or the need for piles (upon piles) of paperwork required for her free and apppropriate public school education.

Then this old song, "Comes A Time" , plays on the radio. WNKU. A song I never payed much attention to until I realized the author was writing from his family's own personal experiences bringing a child with special needs into the world.

He's been there, done that, or so he's singing about it. A simple melody filling the radio waves going out to anyone trapped, lost, or broken beckoning a very special message about hope and seeing that light at the end of tunnel:

"Pick that Baby Right Up Off The Ground!"

It really is a wonder that tall trees ain't layin' down!

Between A Hard Spot and Rock: Cholesteatoma

2010-07-23T05:51:00.000-07:00

We finally have a name for Elisabeth's chronic ear problem. I heard it first from her ENT Charles Myer III yesterday.

Elisabeth's chronic ear infection history goes back to infancy and included several sets of tubes and a history of pediatric visits prompted by blood & pus drainage.

It had nothing to do with allergies, swallowing issues, sinus infections, or other red herrings.

It's called Cholesteatoma. It's a benign tumor. A skin cyst growing on the other side of the eardrum.

From an article I extracted from the internet, I learned about possible causes & treatment:

"One of the main causes of cholesteatoma formation is a eustachian tube that does not function well. Eustachian tube problems tend to run in families or certain ethnic groups, such as Eskimos or individuals of American Indian descent. Other disorders, such as cleft palate, Down's syndrome, or other craniofacial abnormalities that impair eustachian tube function may also have a higher frequency of cholesteatoma formation" - Mark C. Loury, M.D., F.A.C.S. © 2006 Advanced Otolaryngology, PC

Treatment is surgery with a 50% chance of reoccurance.

Click on the title above or go here for more information about Cholesteatoma http://www.advancedotolaryngology.com/Pages/PatientServices/1037.html

Potty Training Children With Disability Labels

2010-07-18T12:40:00.000-07:00

I have an article right here for information about potty training.

If you're interested in my story, here it is:

I found that part of my responsibility raising Elisabeth is overlooking one thing to make allowances for something else. And it changes every day. After realizing I was expending more energy "cleaning her up" as she got older, I figure maybe it would be easier to put her on an adapted chair and let nature do the rest. She already spent a good deal of time keeping herself busy with her "self-stims" so why not put her on safe adapted potty chair while we're cooking dinner or making lunch and just see what happens.

The key to successful potty training, I remembered from training her siblings, was matching "readiness" with the times she was relaxed. It was difficult for us to gauge this for Elisabeth due to her spasticity, poor trunk control, and communication delays.

So I set out to create my own list of "why" and "why not" my child was ready to be potty trained. Each time I saw a greater opportunity for trying vs. doing nothing at all.

First, I considered if we were all up to this as family because it required a lot of time, relaxation, trunk support, patience, and physical transfers on and off the adapted chair which can be very stressful on one's back.

Second, I knew it was going to take time so I created a block of time allowing as much as one half hour for each sitting for the morning, mid morning, after lunch, 3 p.m., before dinner, after dinner, and before bed-time. I realized this was going to be challenging but eventually, down the road, I was able to cut back to only 3-4 times a day.

I always started the training during the summer each time so it didn't interfere with her school schedule. I also started an extra hour early in the morning positioning her in her chair for that first stream waiting on hand with a yogurt or banana to reward her. Sometimes I was too late and sometimes not. When she succeeded, I gave her the "good job Elisabeth!" and hugs. When I knew we had missed the opportunity, I assured her that we would try again.

And third, I allowed time for failure because for the first trial runs in her life, I gave up thinking she wasn't ready. I gave up because I thought she didn't have the readiness or trunk control or physical ability to make this happen.

It wasn't until the summer shortly after her 14th birthday that I started seeing results. The first few times, her sitting time was extended in some cases to 45 minutes to an hour, but each time something little happened. One time, we waited for almost an hour and half. And right when I was about to take her off, the phone rang. So I left to answer the phone and when I returned, she had her very first success story.

Six months later she is staying dry most of the day with few exceptions. As long as I continue to give her opportunities to use the potty, she stays dry. As long as I am consistent in providing opportunities for her to sit and relax, she is always successful.

We also created a new early morning ritual using the chair to dress her sitting up which is a lot easier than lying down. So while she is sitting, I comb her hair, brush her teeth, and I use the time for putting her AFOs on, her pants as far as it will go while she's sitting, and next her shoes. Before you know it, out it comes, and she's ready for breakfast afterward.

The challenge is when we go out because we can't take the potty chair with us. I usually have to allow for abnormal times to be in restroom with her which often times cuts into the entire purpose of going somewhere. When we go on vacation, for example, I allow for time to spend with her. Hopefully there is always a clean restroom available for us to maneuver around. Unfortunately, when there is nothing available, Elisabeth goes without.

Our last few trips, she stayed dry the entire time.

I can't guarantee anything because each child is so different. In hindsight, I can only offer my experience as a suggestion keeping in mind that the actual process of potty training is pretty much the same for typical developing children as it is for children who have who have low tone, spasticity, and who are experiencing delays in communication ability and simple motor skills.

Potty training requires our patience and their readiness. The only difference, of course, is that it's a little harder to read the signs with our children. And it requires special adaptations in the bathroom to meet their special needs.

She's Sixteen, She's Beautiful, and She's NOT Sleeping!

2010-07-15T20:38:00.000-07:00

Last month just before Elisabeth turned 16, she did a 180 degree on her sleeping schedule which is very different.

Elisabeth has been almost clockwork on the sleep cycle since she turned 3. Before that, she didn't sleep at all until we were prescribed a sleep aid to help her develop a sleep cycle.

Typically, she goes to bed by 9:30 without a hitch until we started noticing a few weeks ago Elisabeth struggling with lying down and vocalizing to us that she was not ready to go to bed.

She gets loud, too. And then she starts with the crying, but it's not her "pain" cry. We think it's her "I'm bored and I'm not ready to go to bed."

Tonight for example, she used the potty at 9:00 pm and had her usual dish of ice cream with her Dad while we watch a movie. Typically this is not an issue except that until a few weeks ago, you could brush her teeth, read a little bit, and she would fall asleep.

She sounds and acts like she usually sounds and acts to us when it's bed time but when we put her in her bed, she resists! So back she goes in the swing for about a half hour or the potty and we hope she falls asleep.

Nope, not ready!

At 10:30 we moved her into her sister's room where Dad reads to them both while Elisabeth sits in a bean bag. We sense she's asleep so we put her in her own room in her own bed and she then starts in with the resistence. So I put her on the potty until 11:15 after which I put her in the swing.

So it's 12:10 a.m. and I hear that breathing that I usually hear when she's sleeping. So I look over and she's sound to sleep in the swing.

Time to put her to bed, only it's about 4 hours later than I want to stay up!!!

The "R" Word

2010-02-15T19:17:00.000-08:00

Everyone knows there is no single template under which all disability issues fit for the entire population of people with disabilities. So why pick the very one issue that makes people go crazy? The one issue we have absolutely no control over? The use of the "R" word.

Advocacy is the only thing we have control over!

Advocacy is not about winning an argument about exclusivity rights to the "R" word. Advocacy begins with a personal acknowledgement that all children are valued regardless of their ability or disability.

While I share Ms. Palin's offense to the "R" word, I do not share her view that bringing children with disability labels into world is martyrdom. Neither do I see them as "innocents" or "less fortunate" because it promotes inequity and advocacy is about making the playing field level for all our children.

Trig is a beautiful little boy. His disability label does not make him "less" of anything. How ironic that it took a silly cartoon to point out kids like Trig can be "more" than their disability label.

Caretaker?

2010-01-22T05:34:00.000-08:00

More Special Olympics Fun!

2009-12-18T06:25:00.000-08:00

Elisabeth Bowls 65!

2009-12-06T13:24:00.000-08:00

Yes, that's Elisabeth yawning at her bowling tournament sponsored by the Special Olympics. She got up early Saturday morning putting in a respectable score of 65 which is better than her Mommy ever did.

Can't say enough good things about Special Olympics because it allows our kids to be who they are without being patronized for their disability label. Do you know what I mean? It's ironic, isn't it?

There was this guy I listened to on the radio who was talking about his experiences after his bicycle accident in the 6th grade that left him dependent on his wheelchair for mobility. He was saying that if people would only separate his disability from who he is, the world would be such a beautiful place to live.

HOLD YOUR APPLAUSE PLEASE!

2009-12-03T04:48:00.000-08:00

This morning, my husband and I started talking about that little boy in Florida who was voted "out" by his classmates and what on Earth the adult in that situation was thinking. When did it become okay to use democracy to exclude individual?

We have to think about the messages we send to our children.

In the case of the little boy, even if the message the teacher was sending on that particular day wasn't intended to hurt the little boys feeling or make him feel excluded, it did. She should have known better. The message she was sending to his typical developing peers is that it's okay to get rid of somebody you don't like just as long as you have a majority of people who will back you up which is teaching them what?

Lynching is okay?

Hold your applause, please.

What about the messages we send to our children in social settings. Social settings that have people of all abilities and labels. Remember the "little down chorus girl" who was laughed at during a concert because she was singing off key?

What kind of message was being directed to the younger audience participants. It's okay to laugh at people who sing off key even if she thinks she's singing on key? It's okay to laugh at people who are trying to fit in?

Several times during graduation commencements over the years, I observed how people start clapping for the most ridiculous things. Applauding at what is considered an embarrassing moment for most people. For example, there were chuckles, giggle, and clapping when the wheelchair lift began working after a short delay in getting the graduating recipient to his position with his classmates.

How about clapping for a visually impaired person who was guided back in the right direction after going off in another direction that would have sent her tumbling down.

Huh? Would you clap for your son or daughter after she tripped a little going up the steps to receive her diploma?

It's one thing when a soccer competitor takes out our kid on the field and we clap when they get up, but I don't see the point of clapping for a kid just because the stupid wheelchair lift wasn't working or for somebody who is steered in the wrong direction.

And I don't think laughing at a child who sticks out a little is comedy.
So please hold your applause or laughter for when your own kid does something brilliant or funny.

Thank You, Charles Ballard

2009-09-30T14:21:00.000-07:00

We're in the middle of making our bathroom accessible and while searching for a "barrier free" entry shower pan, we started to get quotes that were in the thousands.

Just for the pan! A 48 x 48 barrier free fiberglass shower plan.

So I started calling the companies that make these special shower floors to find out what the deal was on the cost. At Best Bath in Boise, Idaho, I talked with the representative who directed me to one of their distributors, Charles Ballard, in Indianapolis, Indiana.

He's an honest businessman who sold one to me for under $700 (plus he threw in the barrier strip, epoxy, and drain.) Even he was surprised how high the quotes were when I told him. He runs an online medical supply company so if you see his name, I can vouch for his honesty and integrity.

HC/dd or MR/dd Levies: Fighting a Losing Battle?

2009-08-28T06:06:00.001-07:00

Just yesterday, I read over the above memo about the upcoming tax levy campaign from Cheryl Phipps, Superintendent of Hamilton County Board of Developmental Disabilities or Mental Retardation and Developmental Disabilities.

The very first thing that stuck out was the "no one currently served will be without services" which in the past has been translated as no new students can be accepted at HC/dd formerly known as MR/dd schools. Does this mean that any parent living in Hamilton County looking for a free and appropriate public education for their child with special needs will not find it at the two remaining MR/dd schools even though they are paying for it through property taxes? Aren't parents living in Hamilton County within their legal right to request it as an option if a similar facility, environment, and overall integrated services are not available for their child at the district school?

The next concern I had was reading "asking school districts to share in more of the costs" which from the previous levy has only perpetuated a system of inequity for children with special needs. Children who live in school districts that cannot afford to pay, for example, do not have the same opportunity for a free and appropriate education according to their ability as the children who live in school districts that can afford to pay.

How cannot this be an issue for any county commissioner or anyone determining where children receive their free and appropriate education? Unless they are at an IEP meeting, part of the IEP team, how can they define "services" that ultimately result in how children receive their education?

Once a child is placed into alternative facilities like an HC/dd school, they cannot be transferred without the consent of the parent. The IEP, for example, cannot be "cut and pasted" onto a different location without consenting the parent or caretaker.

The reason why parents and caretakers find their way into HC/dd schools is because the entire facility is dedicated to allowing a free and appropriate education according to a child's special ability and development. It is the least restrictive environment that also enables a child to learn according to their own ability.

What makes HC/dd unique to public school is the physical setting, the special teachers, the all inclusive and integrated sensory therapies throughout the day in general that cannot be duplicated at the district school.

Didn't we learn from the last levy and associated budget cuts which resulted in the closing of Breyer School that school district administrators, county administrators, and HC/dd staff cannot operate in isolation of the families who are only pursuing their child's right to a free and appropriate public education?

What I fear is that we are heading down that road of further narrowing the opportunity to children in our community. What I fear is that parents no longer have control over how FAPE is implemented.

Elisabeth & Edith Cavell

2009-07-27T20:07:00.001-07:00

Promoting Rights of Children with Disability Labels

2009-07-24T07:42:00.000-07:00

My name is Elisabeth and I am 15 years old. While on vacation this year, my mother read an editorial from US News to me written by a human rights activist who was complaining about other people who still don't understand people like her. People like me. People with disability labels.

In the article, she was asking why people still think that her life (or my life) is less valuable just because we look different and depend on a lot of people to get everyday things done.

The point is this. Just because we look different, act different, or cannot communicate the way most people understand does not make our life worth any less than our biological peers.

When I found out that some people would rather die than spend the rest of their life in a wheelchair, it really disheartened me because I will probably be in a wheelchair all my life and it's really not all that bad except when you have to wait for people to make a clear pathway for you. Or when it takes a half hour to get into a building to which most people have direct access.

It's really not that bad when I have to wait for my parents to do things that most people take for granted like using the bathroom, brushing my teeth, and combing my hair. I'm working on that and other things into my own independence, but it would be a lot easier if I didn't feel the pressure all the time to be like the other kids.

I am who I am. Not because of what I can't do but what I can.

I'm pretty happy for a 15 year old. I don't have the peer pressures that most teenagers have my age. I enjoy being around people, listening to music, and dancing. I love to hear jokes and be around laughter. I enjoy being outdoors and backpacking up in the clouds.

This year, when my family was on our annual backpacking trip, I heard them talking about inventing a backpack on wheels for when I get heavier and taller after they read an article about a man whose friends did just that after being injured in a car accident.

This made me happy that people were thinking ahead to include me in the future. I can't imagine any child or adult being excluded from any opportunity because nobody thought ahead. Nobody had room for them.

I can't find the editorial right now but if you come across it, it's in the "Best Hospitals in the US" August 2009 magazine. Even though it echoes Ms. Harriet McBryde-Johnson's concern about how the population of people with disabilities are losing control over their life, she would be very happy to know how many more people are fast on their wheels to dispel all the information and arguments about how our life appears to be worth less because of the way we were born.

Writing On the Wall: Zach Miner's Article "Court Ruling Helps Special-Needs Students

2009-07-20T16:38:00.000-07:00

I live in a school district that respects the individual rights of each child offering a free and appropriate education based on their individual developmental abilities. Unfortunately, many districts do not. Here's what can potentially happen to any school falling short of their responsibilities ...

Court Ruling Helps Special-Needs Students from US News blog ...

June 24, 2009 01:29 PM ET Zach Miners Permanent Link Print

Parents of children with disabilities will encounter fewer obstacles obtaining needed services—and school districts might see themselves go into the red by millions of dollars—thanks to a recent Supreme Court decision that special-education students' parents may seek government reimbursement for private school tuition even if they have never received special-education services in public school, the New York Times reports.

The case before the court involved a struggling Oregon high school student, identified in court documents only as T.A., who was found ineligible for special-education services in the Forest Grove district after school officials evaluated him for learning disabilities. His parents removed him from public school in his junior year and enrolled him in a $5,200-a-month residential school. Only after T.A. enrolled in the private school did doctors say he suffered from attention deficit hyperactivity disorder (ADHD) and other disabilities.

The crux of the case was whether a 1997 amendment to the Individuals with Disabilities Education Act, or IDEA, prohibits students from receiving private-school tuition reimbursement if they never enrolled in special-education services in a public school. The high court's ruling makes it clear that it does not.

The amendment, which now has seemingly been rendered all but obsolete, says tuition reimbursement may be available for students with disabilities if they "previously received special-education" services in public school, but the services were not timely delivered in a free and appropriate manner.

Forest Grove argued that the amendment precluded reimbursement for those, like T.A., who never received special-education services in public school. But in a 6-to-3 ruling, the court rejected that argument.

"We conclude that IDEA authorizes reimbursement for the cost of private special education services when a school district fails to provide a free and appropriate public education and the private school placement is appropriate, regardless of whether the child previously received special education or related services through the public school," Justice John Paul Stevens wrote in the majority opinion.

Before the ruling was issued, disability rights advocates argued that had the court ruled in favor of the district, schools would have an incentive not to identify a student as learning disabled.
But the verdict doesn't necessarily mean that it's all smooth sailing now for parents of children with learning disabilities. Ron Hager, senior staff attorney at the National Disability Rights Network, describes five areas of concern that parents should keep in mind in light of the ruling:

Know Your Rights

"School districts have an obligation to locate and evaluate children to determine if they do have a disability," Hager says. "The IDEA law envisions that the parents are equal participants with the school district in developing the child's program, but parents frequently don't know what their rights are."

"Every state has two different programs that are funded by the federal government to help parents," Hager says. "The first one is specifically funded under IDEA itself. They're called Parent Training and Information Centers. Every state has one. Option 2 is a program called Protection and Advocacy for People with Disabilities. And their mission is not just special ed. The Protection and Advocacy programs cover all areas of disabilities, from birth to death, and discrimination, and include parent training. Many times, the Protection and Advocacy and Parent Training Centers work together. So, parents should try to find somewhere near their home where they can get training on what the school is supposed to be doing, what the parents' rights are, what the child's rights are ... The better educated the parents are, the better able they are to work with the school, and if that school is not doing it right, then they'll know."

Get Involved

"School districts have an obligation to ensure that children with disabilities receive an appropriate education based on their individual needs," Hager says. "It's not one size fits all. The parents should be looking at, 'Are my child's needs being met?' Schools have the obligation to identify children with disabilities, and as part of the process, they're supposed to do comprehensive individual evaluations and look at all possible areas of disability, not just one. There should be a planning meeting before [the schools] actually do the evaluations, and even there, the parents should be involved to look at what types of evaluations might be needed."

Question the Evaluation

"The other thing that's critical for parents to know is when the school has done its evaluations, if the parents disagree with the results of those evaluations, they have the right to an independent evaluation at the district's expense," Hager says. "So, the school kind of gets the first bite at the apple, then if the parents are unhappy or if they disagree, they can request an independent evaluation. So, there's a series of checks and balances built into this process, but if the parents don't know, it's useless. But don't just go willy-nilly and ask for an independent evaluation. If you're looking at the evaluation and you're saying, 'This is just not my child,' or 'I think they're missing something,' then that's a legitimate concern."

Be Wary of Narrow Criteria

"The other thing that happens ... is that the school districts have an overly narrow view of what the criteria are for special-education eligibility," Hager says. "Frequently, with a child with ADHD, they'll look at whether the child is doing well academically. Especially with a kid who may be really bright, he may be able to pass his classes, barely maybe. He might do very well on standardized testing, but he might be getting into trouble all the time. And the criteria for ADHD is an adverse effect on educational performance, not academics. And IDEA has always looked at not just academics as part of education, and it's gone more and more that way over the years since it was first passed. So, school districts tend to be overly narrow and overly restrictive in qualifying children for learning disabilities."

Don't Wait to Take It to Court

"Parents should appeal right away," Hager says. "Don't wait for four years. But many parents do, because they're frustrated, they don't know, or they assume the school is telling them the right thing. So, they go away, then the kid gets worse and worse, and they come back again. They might come back five times before they finally get mad enough to fight. And it shouldn't be that way. It's not supposed to be that way. It's supposed to be a collaborative process. But don't just go ballistic. One of the factors the Supreme Court made note of toward the end of its decision is that when you look at reimbursement, you do look at whether the parents were in good faith working with the school district."

Waivers, Levies, and Universal Design, Oh My!

2009-06-03T07:15:00.000-07:00

One thing I truly value about Hamilton County Developmental Disabilities (HC/dd) formally known as MR/dd is the (tremendous) availability of knowledgeable healthcare professionals, therapists, and special ed. teachers who help parents make those necessary connections to becoming their child's best advocate. And mostly, I appreciate the support and encouragement I receive from teachers and therapists because when I feel like I'm riding a runaway train, they slow you down to take you back on the track.

Just yesterday, I received a home visit from the OT/PT team through Bobby B. Fairfax School to get information about adapting our bathroom to accomodate Elisabeth's growing needs. Later on one of the OT's sent home with Elisabeth a DVD about universal design ideas for our home. (For more information visit: http://hec.osu.edu/ud/ ) It's the first major step we've taken to actually change our homecare to benefit Elisabeth and the rest of the family.

Another program I learned about through MRDD was the "waiver" program offered through the County Board of HC/dd or the County Job and Family Services. The waiver is a way that Medicaid can pay for services to keep your child at home instead of a long-term facility or nursing home. (For more information, visit http://mrdd.ohio.gov/ )

Having a child like Elisabeth comes with so many more responsibilities than with a typical developing child. As her parents and caretakers, my husband and I take full responsibilities financially, emotionally, and physically meeting all her needs. Never once have we ever thought about long-term care for her because we thought we could manage her needs. Never once have we thought about Medicaid.

As Elisabeth is approaching her 15th birthday, my husband are experiencing the limits of caring for her. She is becoming harder to manage carrying her or walking her through the house. Even a lightweight at 60 pounds she requires the help of a strong adult to assist her in every aspect of living.

Emotionally, she is going through changes most kids go through her age, but it's more wearing on me because while I'm trying to comfort her, I can't figure out half the time what's wrong or why she's in distress. Sometimes, she can be up until 2 or 3 a.m. in discomfort or pain or who knows what.

I know parenting is "exhausting" in general. But I'm not talking about "exhausting" as in the hectic lifestyles we lead naturally carpooling here and there, dealing with last minute changes in scheduling, or other surprises we find ourselves in.

I'm talking about real physical, emotional, and financially draining lifestyles of caring for a child with special needs 24/7. The wheelchairs in and out of the car. The transferring. The rocking. The lifting. The dressing. The bathing. The drying off. The waiting. The feeding. The carrying here and there. The lifting and pulling and pushing. Going to Walgreens to get a prescription filled dragging your kids & the wheelchair in and out of car for the 50 millionth time in and out of the store, and back home.

It's amazing we haven't all left for crazyville.

Even though Elisabeths' IEP is geared at developing skill and ability working toward independence, she'll always have to rely on somebody else to do everday, occupational things. Children like Elisabeth are exhausting because they need physical assistance for every aspect of their life from getting out of bed to the school bus to the school and back home again.

It can be financially draining on many families, too, because most of the stuff we need for simple, basic living is very expensive. Prices for adapted dinnerware, seating, beds, bathrooms, showers, bicycles, walkers, wheelchairs, braces, and basic age-appropriate toys are in the thousands. A simple wheelchair converted manual ramped van is the price of a Mercedes Benz. A simple battery operated communication device, again, in the thousands. Adaptions to the home is an ongoing, ever changing challenge, that requires special products that are outrageously prices. A special adapted toilet paper roll for $80.00?

That's why we need to keep Hamilton County Developmental Disabilities and programs, schools, and outreach in our community. We need to keep it fully functional and not let it go like I'm seeing with Job and Family Services. (I just heard about big layoffs there and it scares me that nobody in government sees any value of having outreach coordinators or interventionists or case workers helping families in need.)

We need to keep HC/dd (MR/dd) services, schools, and programs functioning because there's nothing out there for parents and caretakers to help educate us about the expectations of parenting a child with special needs.

And they understand the challenges we face every day. They can point out the horizon line for us when everything looks a little fuzzy...

Homework Assignment: IEP (Individual Education Plans) in Ohio

2009-05-21T19:51:00.000-07:00

"We have to be careful we're not creating special education systems or IEPs by proxy. What I mean is that we're not creating a system of people who are standing in for the professionals."

How different will IEP's look in Ohio now that the changes from the 2006 legislative amendments are trickling down? Click on the title above and you'll be transported into another universe. I promise you. (Like me, you'll never come back!)

Remember parents, an IEP is not just a bunch of papers we sign off every few years to gauge our child's progress and special education for our child is not babysitting time. IEPs are the master plan outlining what your child is working toward according to their own ability. IEPs are the road map for your child's future.

It's unfortunate we have created so much paperwork in developing IEPs because it can take away from time that would be spent with your child. So make sure that somewhere in the design of the IEP is how a student's time will be accounted for while they are at school. More specifically, who will be implementing the IEP with your child on a daily basis. The IEP should identify the players working directly with your child the majority of the time and what they'll be doing on a daily basis.

We also have to be careful we're not creating a special education system or IEPs by proxy. What I mean is that we're not creating a system of people who are standing in for the professionals. What if for example, suddenly we had schools where only one teacher was required to teach other people how to teach in the classroom.

Make sure you know who is with your child most of the time, too. I've been reading a lot about students being found in restraints or left in isolation, for example. The reason why this happens is because children are left in environments where the majority of their time is spent with a well-meaning person who is not trained to be with them.

In some cases, an untrained or inexperienced person who is not familiar with your child's behaviors or needs can actually cause them to become agitated or aggressive. Many times they can enable or trigger behaviors that hinder progress.

It is so important you know the people with whom your child is spending the majority of his or her time. Is there a licensed special education teacher on the premises all the time? Are there licensed speech therapists? Are there licensed OTs/PTs or is one available to them to make the necessary adaptions/changes if needed? If there is a behavior issue, is there a behaviorist or psychologist ready to respond if needed?

The IEP should also identify how the IEP is being implemented. If the environment where all this is suppose to take place doesn't look right, if it looks too crowded or if there is sensory overload or not enough adults on hand, then that needs to be addressed in the IEP meeting. If you're not sure, ask the special education teacher his or her professional opinion about adaptions in the classroom that can be made for your child to help not hinder progress.

Most importantly, make sure you understand your child's medical diagnosis upside down and backward and the challenges it presents for your child. Are there limitations? What is the neurological situation? What is the potential range for your child's ability? What makes your child tick?

Forget about what the other kids are doing unless you think you see a child that matches in ability, current skill level, or developmental patterns. But be careful here, too, because what works for one child may be disastrous for another.

Think this through. IEPs were created for your child, not for what other children are doing. Look at what your child can do and start from there. The "I" still stands for "individual, " the "E" still stands for "education" and the "P" still stands for "plan" regardless of what changes we read.

Get to know the district psychologist and their theories, methodologies, and instruments they use mapping the personalized development chart identifying your child strengths and special abilities. Determine if this clearly describes what your child is capable of in the classroom. If not, find out if there an alternative that will reflect best what your child is capable according to their own ability.

Get to know your district representatives. If you decide the classroom is not beneficial to his or her learning style or pattern of development or behaviors, then talk about creating an environment that will help your child grow in their area of need and ability.

Make sure you have on board during your IEP meetings a board licensed special education teacher who will be working directly with your child making the special adaptions and changes in the classroom because very few teachers have the resources or the time to do this for your child. Most importantly, make sure there are present in the IEP meeting an OT/PT/Speech/Behaviorist/Vision Specialists/Interventionist Advocate and anyone else who can aid in creating a special education plan for your child according to his or her own ability.

They say parents are the best advocates, but I have learned early in the journey, it helps to get to know the experts who keep current with research & studies about your child's special diagnosis. Sometimes they can help explain better what your child's needs are in the classroom. Or if the classroom is not the place for your child, an environment that will allow your child to benefit from a special education based on their emerging skills and special abilities.

May Flowers ...

2009-05-19T10:36:00.000-07:00

I don't know what happened to the first part of May. I recall carrying 50 bags of mulch down a hill and 50 more here and there, but as I look out my window I am almost immobilized by the work I know that's out there this time of year.

I've had my vegetable garden in since late April and the perennial beds look good. I just haven't gotten around to throwing out the flower seed for my annual display of zinneas & cosmos because the beds are not ready.

Eric's death still is very surreal to me. Seeing him wasn't an everyday thing like it was for his family and friends. It was the special occasions to visit the big family that made our trips up to Cleveland seem like a family vacation and Eric was part of the experience. He was part of that anticipation.

We did manage to attend the Mother's Day Indian's game in Cleveland with the big family a weekend after the funeral. Everyone was there. Except Eric. We got through it. We managed. I guess we were grateful to be together even though our hearts are still breaking over his death.

Elisabeth's prom at McAuley was fun. It helped get my mind off Eric until I heard a parent talking about his 20 year old son at college. It seems like every person I've met since Eric died has a 20 year old son in college.

So naturally, when I start hearing these stories, I think about my brother and his family and wonder how they are coping for that minute. Are they finding light at the end of that grief tunnel?

I wonder if the person with whom I am talking ever thought that their son would die from injuries after falling 4 floors?

I am learning how to pray. I am learning how to connect again.

I have a few other things on my mind, too. I want to get a conversion mini-van to transport Elisabeth and her chair without having to rely on lifting her or her chair into the car. I am counting the days until I can leave the house without ever lifting her wheelchair in the car.

One - two - three. It could be weeks or months.

The vans are expensive. It's well over $40,000 for a decent one but I'm told not to worry by a soft spoken well-meaning sale person because I can pay it back over ten years. I hear that it's a special deal they have for people who need wheelchair accessible vans. I don't get it. Am I suppose to feel relieved by paying 9% in interest over ten years?

Tomorrow, I'm going in for tests that every 51 year old woman goes through when she's told she has an enlarged ovary and is overdue for a mammogram. I google "enlarged ovary" every now and then to check in and decide its a coin toss. Just like falling out a window.

Last week, I spent time searching for pictures of Eric that do not remind me of his death. Pictures that remind me of a time when I was motivated to throw my flower seeds in flower beds that I prepared each year. A time in my life when I wasn't worried about mammograms, ultrasounds, or putting a wheelchair in car.

The Boy Who Lived ... Eric Hansen

2009-05-11T11:55:00.000-07:00

I am wrestling with labels again.

I'm wrestling with a "label" because of what I read in the newspaper and in blogs about my nephew, Eric Scott Hansen, the youngest brother of Brian and Andrew.

Eric was so much more than the 20 year old engineering student at Ohio University who died from injuries he sustained falling 4 floors. He was so much more than the consequences in the body I found his mother, father, brothers, grandparents, aunts and uncles & cousin grieving over in the hospital room last week.

His connection to life pulsated with love and energy and was held together by the strong bonds that were established by the faith-inspired family that created him.

Eric was the sum total of each and every life he touched beginning with his brothers and parents. For Elisabeth, he created that unique bond of familiarity, following in Andrew and Brian's footsteps, so he could be a part of her life, too. He made her laugh when he came into her space. He made her smile.

To his grandparents, aunts, uncles, and everyone else in the family, he was the personification of joy. Pure joy. To his coaches, scout leaders, teachers, and employers, he was brilliant, curious, charismatic, strong, and athletic. For his friends, he added light, comedy, and action.

Overnight, he tragically became the young college student who reminded every parent about getting that call from the police station or campus security. For families and friends, he made this reality unbearable.

Overnight, he became the Eric whose mother, father, and brothers reached out lovingly, comforting and consoling every family and friend waiting in line for hours to express their grief, shock, disbelief, and sorrow.

Overnight, he became the Eric eulogized by a very brave priest recalling the enthusiasm we see in every young life, the infectious personality he radiated, and the playful sarcasm that everyone remembers.

Overnight, he became the disclaimer label -- life is "fragile." A reminder for everyone in a wake of tragedy that our actions are consequential. Individually or collectively, good or bad, intentionally or unintentionally, our actions can sustain, save, or erase life in a matter of seconds.

I know, too, there are labels for the endless journey of grief and sorrow we experience when someone so young, so dear, and so precious in our life passes because we also use labels to connect to each other as a humanity. We use labels to heal people.

But I'm not ready to put a label on him or his life or his death or his family. Instead I will be searching for that "candy- coated popcorn, peanuts and prize" label found on every box of Cracker Jacks. It's the only label that has any real meaning for me.

In loving memory of Eric Scott Hansen

In Memory of Eric Scott Hansen

2009-05-06T14:28:00.000-07:00

For Andrew, Brian, and Eric's loving family...

We use labels everyday in our life. Labels for acquiring knowledge and meeting challenges like a teacher in the classroom and a city planner looking for green space to create beauty and recreation. Parents use labels charting their child's physical, intellectual and social development to meet their needs here on Earth.

Hopefully, historians are truthful and honest labeling our human history because learning from our past helps us prepare for our future. We become better people. We solidify our connection to each other as a humanity while also healing. Just ask anyone labeled "genocide" survivor.

Right now, I'm wrestling with the one label describing the wake of our human condition. The one used to eulogize our beloved Eric.

Life is "fragile."

In Memory of Eric Scott Hansen

2009-05-06T04:00:00.000-07:00

Move the article here:

http://elisabethssmom.blogspot.com/2009/05/in-memory-of-eric-scott-hansen.html

Special Olympic Prom Party

2009-05-01T15:45:00.000-07:00

Come join McAuley girls for

A Night of Games, Crafts, and Dancing

May 15th
6:30 to 8:30 p.m.

Dress up in Prom attire or something fun and dressy!

Open to Special Olympic Participants 13 years old and under

Every child will have a McCauley partner!s

RSVP by May 11th to Special Olympics 271-2606

Parents may drop off children or stay to watch the fun!

Learning to Live on Less

2009-05-01T15:33:00.000-07:00

When Life Throws A Curve Ball: Learn to Live on Less Program

with participating agencies Catholic Charities, Consumer Credit Counseling Service, and Nutrition Council

When: May 22, 2009 8:30 am until 12:15 pm

Where: Corpus Christi Church Undercroft 2012 Springdale Road

RSVP to Sandy Keier at (513) 241-7745 before May 15, 2009

Community Resource Information Fair

2009-05-01T15:30:00.000-07:00

Join the Center for Infants and Children iwth Special Needs and the Special Needs Resource Dirctory for this free opportunity to meet with professionals, community agencies and companies specializing in:

Medical Support
Community Programs and Services
Recreation
Home Health
Financial Planning
Plus More!!!

June 1, 2009
10 am until 3 pm
Cincinnati Children's Fifth Third Bank Auditorium
(across from cafeteria)

Transistion to High School and Beyond ...

2009-03-11T06:06:00.000-07:00

Parents are invited to attend "Transistioning to High School and Beyond: Options, Services, and Supports" brought to you by Northwest School District in Partnership with Mt. Healthy Local Schools, Center for Regional Education Services/Hamilton County and Education Service Center.

When? April 2, 2009 from 5:00 to 8:00 p.m.

Who? Students with special needs grades 8-12 (Teachers, Counselors, and others seeking transition information)

Where? Northwest Education Resource Center 331o Compton Road, Cincinnati, OH 45251

For additional information, please contact Reena Fish at 513-205-8725 or Deborah Stroud at 513-922-2300

18 or Older with a Disability Label?

2009-03-11T05:56:00.000-07:00

Do you have a physical or mental condition that prevents you from working and earning a living?

At age 18, Social Security no lnger counts parents' income and resources when determining eligibility for Supplemental Security Income (SSI). If approved, you can receive up to $632/monthly in SSI and qualify for Medicaid, comprehensive health coverage.

To learn more about how you might qualify, Sue Denny, Social Security Administrator, will be holding workshop at Oak Hills High School at 3200 Ebenezer Road, Cincinnati Media Center.

This workshop is designed for parent who have a son or daughter 18-22 years old as of May 2009. During this session, you and your son or daughter will begin the SSI application process with SS representatives.

Seating is limited and advance reservations is strongly recommended by April 24, 2009. To register, contact Sue Denny at susan.denny@ssa.gov or (513) 357-5507

If you have general questions, contact Deborah Stroud, Work Study Coordinator at Oak Hills Schools at stroud_d@oakhills.hccanet.org or 513-922-2300.

Elisabeth's Science Project

2009-02-20T06:56:00.000-08:00

A few days ago, I attended my daughter's science exhibit focusing on the human body made by her classmates at Bobby B. Fairfax. Except for the written descriptions on the wall, it was no ordinary science exhibit. The focus for her wasn't entirely about becoming more familiar with the function of each body part on exhibit there. The focus was to allow her to explore in an environment that challenged her individual area of skill and ability.

Elisabeth's contribution was explaining the "tongue." Instead of explaining the "tongue" through her usual fixation of self-stimming, her teacher gave her visual cues to explain the tongue using her techtalk. She also make a model of the tongue that was small enough to place in her hand for sensory input, but large enough so it wouldn't end up in her mouth.

Elisabeth was engaged in a purposeful and meaningful environment that was challenging for her. At the "hand" exhibit, she was reaching out to objects that that would buzz, clang, or crash on touch. At the lung exhibit, she was provided appropriate sensory stimulation holding baggies made to look like lungs that inflated and deflated on touch making a crinkly sound. I think her favorite was the "nose" exhibit station where her fellow student pressed a button to make a "sneeze" from a spray bottle.

What I learned from the students who put on the Science Exhibit at the school, is that when we create opportunities for children to learn according to their personal area of development, skill level, and ability, they will succeed.

Elisabeths' New Do

2009-02-17T10:33:00.000-08:00

I really great stylist, Rachel Hayden, from Milford's Salon VIP did a beautiful job, don't you think?

The Mona Lisa Syndrome

2009-02-15T12:34:00.000-08:00

for Stephanie Ramos and Danieal Kelly

How many times have we heard from complete strangers or a child, "What's wrong with her?" How about "what's her diagnosis?"Just when stares and pointing fingers begin, we see a very curious or concerned child guided away by an adult saying in a hushed tone, "she's different" or "don't stare, that's rude." In one situation, a lady gave me holy water she got from the Lourdes Grotto, to put in her drink to "heal her."

Heal her?

Oh. I believe in miracles. Don't get me wrong. Survival is miracle.

We know people have good intentions and some are just naturally curious because they have a family or friend who "looks" just like our child. Sometimes we hear from these strangers that they know someone who even "acts" like our child, too.

Sometimes they ask about her syndrome. In most cases, it's really the only time people acknowledge our child's presence even though they are not talking directly to our child. They are talking "about" our child as though our child is not really there.

There's a part of me that wants to answer back, "What!!!??? There's something wrong with my child? Stop the presses everyone" but sarcasm would be counter-productive and the goal is to get her to fit in with everyone else.

She is absolutely adorable. And what do we do when we see the most adorable child in the world? Don't we usually acknowledge their presence by smiling or saying "oh, how adorable."

I want people to ask her, to speak directly to her:

I love your hairstyle!
I love those boots!
I love those flashy lights on your wheelchair!

Life is too short to talk about diagnosis or therapy. Let's talk about the 45 minutes it took putting nail polish on her nails so they match her top. Let's talk about the 1 hour it took to fix her hair so it looks just like that actress from Jane Austen's Book Club. How about the 20 minutes it took to get her shoes on? The shoes that match her nail polish that match her top.

When I run into anyone curious, I tell them what her name is and hope they'll come up and say, "Hello!Elisabeth! Where did you get those cool wheels on your chair?" or "I love that hair style. You look just like that actress in Jane Austen Book Club."

Once in awhile, this guy from church who we hardly know, comes up to our daughter, gets down on his knees to make eye contact with her and says directly to her, "You're really jazzing me out girl. Where did you get that outfit?" to which our daughter responds by flashing her eyes and smiling that million dollar smile that only Leonardo DiVinci knew how to capture.

We don't know anything about Mona, do we? Sure, she's somebody's daughter, wife, or friend but why is she famous? Because somebody, maybe even Leonardo, took the time to make her smile.

My Daddy & I Went To A Dance!!!!

2009-02-10T09:09:00.000-08:00

Springfield Township hosted the first annual Father and Daughter Dance following in the footsteps of a "Father and Daughter Dance" that's been part of Finneytown's tradition for many years... Here are a few photos of Elisabeth and her Dad!

Hurricane Katrina Long Term Recovery Research

2009-02-09T17:09:00.000-08:00

Researchers at the Center for Disability and Development at Texas A&M
University are conducting a study on the long-term recovery survivors from
Hurricane Katrina who have diabetes or a disability. If selected,
individuals will participate in either an interview, telephone survey, or a
focus group and be eligible for up to $50.00 in compensation. Interested
individuals or their guardians (if applicable) should contact the Texas A&M
project using their toll free number at 1-866-578-4366. All calls will be
confidential and consent procedures will be carefully followed with all
potential participants.

We are conducting a study on the long term recovery of survivors from
Hurricane Katrina. We would like to ask your assistance in disseminating our
project information below to groups and individuals who might be interested
in participating. A flyer is also attached in the case you would like to
post this information.

Please contact Christy Knight, Data Coordinator, at
Texas A&M University at cnknight@ag.tamu.edu if you have further questions
or suggestions for other groups who we might be interested in disseminating
information about this study.

************************************************************************

Principal Investigator: Laura M. Stough, PhD
Department of Educational Psychology

Erma Bomback's Vanity Clause

2009-01-31T17:12:00.000-08:00

(Note to readers: if you click on the title, you'll be directed to the article to which I am referring here.)

A while back, Elisabeth and I met a woman in a line at the bank. She was behind me crying very softly. I turned around and asked if I could help her. She unloaded the news of her newly born - mentally retarded granddaughter, her taking-it-hard daughter, and her falling apart family. The woman went on with "it's got to be so hard on you" and pointing to Elisabeth "the poor little dear." As she blew her nose in a tissue she said, "what kind of life is it with all problems she's going to have?"

I wasn't sure if she was speaking rhetorically but either way I couldn't answer. All I could offer her was empathy assuring her that Elisabeth was fine but caught myself like everyone does ending with a sympathetic "I'm sorry to hear about your granddaughter" instead of an opening "what is her name?"

She broke down even more. After I pointed at the empty chairs in the corner of the bank lobby offering to sit with her until she gained composure, I searched through Elisabeth's backpack on her wheelchair for candy or a bottle of water. Instead, I found a newspaper clipping that I had tucked away a few years before. A newspaper clipping I almost threw away.

It was a clipping from an article written by Erma Bombeck that finds its way into every hand of every family of a child with special needs whether they like it or not. I hesitated offering it to the new grandmother because I remember at first taking offense from what was written. But I needed to give her something tangible. I needed to make a connection to let her know things turn out okay.

After I assured her that Elisabeth is a very happy little girl, I asked if she ever read Erma Bombeck's articles. I showed her the clipping and explained how it was given to me shortly after Elisabeth's birth by a mother who had an adult son with CP. I handed the article to the crying grandmother who stopped crying long enough to look for her reading glasses but I stopped her and said, "no, wait until you get home."

Then I took Elisabeth out of her wheelchair and said "Elisabeth loves hugs from Grandmas and being that her Grandma lives far away, can she give you hug?" While this woman was holding Elisabeth's limp, curled 6 year old body, I shared with this woman what helped me understand the responsibility I had being Elisabeth's mother.

Before I became pregnant with Elisabeth, I told her about the photograph of a child I saw in an exhibit memorializing Anne Frank and all the children who perished with her. It was a medical photograph documenting a child ready to be "exterminated" due to her imperfection.

When I saw this picture, I explained, it was like I knew this child all my life. "I cried just like you were crying because I wanted to give her the life she deserved instead of being discarded like an unwanted gift. The way they leave this world should not be determined because of the way they enter.

"Everyone goes through stages of acceptance differently," I explained, "I went through mine early and you're moving through your own right now. It's natural to get stuck using a lot of our own personal energy and emotional resources blaming ourselves or blaming others and looking for cures and making bargains with God. Just remember what your new granddaughter needs most is a grandmother all children deserve to have."

After giving Elisabeth a hug, the new grandmother asked what she could do for her daughter, "She's still taking it really bad."

"For each new mother," I explained, "the experience and acceptance is different. The best thing you can do is to be the mother she deserves to have. The Mother you were chosen to be. According to Erma Bombeck, I was chosen to be Elisabeth's Mom because I was self absorbed and vain and I wouldn't have time to wallow in self pity or pity for my child. Hopefully you can get your daughter off the hook here, for Erma's sake." And I laughed so hard it echoed through the bank lobby.

The woman looked at me very curious and started laughing, too. "I loved reading Erma Bombeck in the newspaper" she commented and then I suggested getting back in line because the bank would be closing soon.

While we stood in line, I told her about Elisabeth's Grandmother's church club that raised a thousand dollars so she could have her own adapted bicycle because "no child should be without a bicycle." I felt a new confidence growing in the new grandmother as she saw Elisabeth through a new set of eyes trying to get her to giggle again.

The same confidence that was passed onto me as tangible as the newspaper clipping I almost threw away.

Support Group: Parents of Children w/ Neurobiological Disorders

2009-01-31T14:18:00.000-08:00

For parents, grandparents, caregivers and others who are concerned about a child experiencing SERIOUS EMOTIONAL Disorders or has been diagnosed with or exhibits symptoms of a neurobiological disorder or mental illness.

When? The first Saturday of each month 1-2:20 p.m.

Where? At Children's Hospital, College Hill Campus, 5642 Hamilton Avenue, Cincinnati 45224

Sponsored by NAMI Hamilton County, call the NAMI office 513-351-3500 for more info.

Facilitated by Carin Ives

NAMI of Hamilton Country is a partipating member of Community Shares of Greater Cincinnati

Parent/Family Leadership Series

2008-11-25T12:30:00.000-08:00

Found this information in Elisabeth's backpack and thought it looked interesting for families who have children who are not cognition-track students. (I guess that means kids who are severe or delayed in cognition development...)

Starting Dec. 11, 2008, State Support Team 13, in collaboration with regional trainers, will offer interactive, hands-on, sessions related to Special Education System topic. Family members may attend all or any of the sessions. A $20 gift card, to help defray expenses, willbe provided to parents and family members at each session (one card per family.)

Sessions will be held at CRES (former SERRC building) from 6:30 to 8:30 p.m. the 2nd Thursday of each month, December through May. The sessions will cover basic informaiton about topics related to the needs of learners with disabilities, including an intervention/prevention model fo learners who are not successful in school, adademically or behaviorially. Ohio's new operation standardss will be applied to each topic area.

Those who attend all six series sessions willb e invted to attend more advanced, in-depth, training at a Spring Leadership Institute in May and June of 2009.

When:

December 11, 2008 Special Educati
January 8, 2009, Intervention and Evaluation
February 12, 2009 IEP Development
March 12, 2009 Behavior Planning
April 9, 2009 Transition (Birth to "World of Work")
May 14, 2009 Communication

Where:

CRES 1301 Bonnell, 3rd floor
Cincinnati, 45215

To register:

Call Terry 563-0045

Questions about Series call Sue Bitsko 513-674-4261

In case of bad weather, please call 563-0045 for information

Accepting the Retarded ....

2008-11-17T06:58:00.000-08:00

We lived next door to a group home in Roselawn for 11 years which proved to be an eye opening experience in preparing for Elisabeth who was not born yet. This article is a constant reminder about the uphill battle against ignorance and fear which is the only real handicap our family and friends face in life:

From the New York Times

Accepting the Retarded, As Long as They're Old...

By JOSEPH BERGER
Published: November 14, 2008
EASTCHESTER

Long Island Westchester
Connecticut New Jersey

THE house on Claudet Way looks unremarkable — another handsome ranch on a winding suburban lane of comfortable families, lingering empty nesters and ghosts that haunt the shrubs at Halloween time.

What makes the house stand out is its residents — four elderly men and three elderly women who are mentally retarded. The house is a group home, an effort to let the residents feel the same delights of suburban living that others do by placing them in a residential rather than institutional setting.

So far it has worked out. After 14 years, the neighbors, some of whom first objected to a group home locating on the block, have more than made peace with it. Children even drop by for treats at Halloween and get big smiles and waves from the residents.

But now the house is at the center of another of those not-in-my-backyard flare-ups. The residents at Claudet Way need to move out to a setting better able to deal with their accumulating frailties — one that at a minimum is suited to wheelchairs. In their place, Westchester Jewish Community Services, the nonprofit agency that operates the home, wants to move in six men in their 20s and 30s who have developmental problems.

Some neighbors are protesting, making their objections known to the agency and to local government officials. They say they worry about these younger, sturdier men wandering onto their lawns and walks. They worry that cars belonging to visitors will clog the tranquil street.

“I care about them molesting children who won’t be able to go out unattended,” said Paul D. Warner, a retired professor of auditing who has lived on the block since 1971.

“It’s not right, because they shouldn’t put that much stress and fear on the parents,” said Lois Schneider, a former schoolteacher who raised a son and daughter a few doors away. “I mean, children should be able to play, and there shouldn’t be a fear that they might be accosted or bothered.”

The agency has been through this kind of tumult with almost every one of its 12 group homes in Westchester, which accommodate a total of 85 men and women. And according to Dale Wang, the agency’s director of community relations, in 30 years the agency has not had a single serious case of harm to a neighbor.

“People are afraid of what they don’t know,” she said.

Residents of the suburbs tend to want their streets to be as close as possible to the soothingly normal land of “Leave It to Beaver” and “Dick Van Dyke.” But outside 1960s television, suburban families are seldom typical. Families split up in divorces, others come from foreign cultures, others include children with disabilities, and a neighborhood sometimes has to deal with the ripples. In the case of mentally retarded children, society has to find ways to allow them to function as independently as possible as they grow up.

Steven R. Yellen, the agency’s assistant executive director, said mentally retarded people, like everyone else, have a right to live where they choose.

A model for what the neighbors on Claudet Way can expect is not too far away on Cannon Lane, a similar group home for younger men. On Election Day, the seven residents — all between 30 and 60 — came home from jobs doing mailing or stacking books, and then, as most Americans did, they went off to vote.

Jeffrey — the agency asked that last names be omitted to protect the residents’ privacy — had made up his mind.

“Don’t forget to vote for Obama,” he urged his housemates. “He’s a good senator.”

Warren, looking skeptical, thought otherwise. He was voting for John McCain.

“He’ll make a good president,” Warren said. “He knows what he’s talking about.”

Upstairs, Michael, a bashful, balding man of 31 who works part time in the Larchmont Public Library, was tidying his already orderly room. Michael sometimes gets annoyed with housemates for borrowing his CDs without asking. But he also has a sign pinned to his bookshelves that lists “10 Things I Like About Myself,” including “I like that I am funny and I make people laugh.”

The agency has not yet picked out the six younger men who would be moved to Claudet Way, but it says it will screen them and provide a staff of about 18 to care for them. It will permit some residents to move freely about town and require round-the-clock supervision for others.

“We don’t think this is a scary place,” Ms. Wang said.

Usually, the agency sets up a house after receiving requests from enough parents who realize that they won’t be around forever and that their grown children will need to learn to live on their own. In the case of the Claudet Way house, the agency, which commonly takes clients from all religions, also wants to set up a kosher home for the offspring of observant Jews.

The agency is accredited and financed by the State Office of Mental Retardation and Developmental Disabilities, and the move — which would require renovations to the ranch house — is being delayed during the austerity of a fiscal crisis. The older residents will remain for now. Nevertheless, the agency is preparing for the day the project resumes, and it expects the controversy to die down.

Ms. Wang knows from experience. She was here 14 years ago when there was a hubbub over the first residents at Claudet Way.

“I also remember that months later when we had a holiday party, the neighbors came by,” she said. “And everything was very friendly.”

E-mail: joeberg@nytimes.com

Bridge School News Network Interview

2008-11-10T07:34:00.001-08:00

I came across this interview with Pegi Young put together by kids from The Bridge School which is known for teaching specialized communication for children who are experiencing global or developmental delays in speech. Here's another interview with their famous supporter, Rock-n-roll legend Neil Young. Looky here!

The interview is a reminder that however we as a society either perceive or define as "loss" or "disability" will be our kid's only handicap in life. It is also a reminder that survival is a gift. A blessing. And that as parents we have a direct responsibility to teach our children all the survival skills they need for their future regardless how they come into this world.

Since no one can prepare us for this journey, it is even more important for parents to educate themselves about different teaching aides, methodologies, and technologies that will help children access their right to a special education according to their ability.

How parents go about accessing these resources will vary depending on each child's ability or special diagnosis. Generally, it's best to find the advocacy organization in town once a medical diagnosis is identified by a medical professional. Just google in the name of the "diagnosis" and "Cincinnati" and "advocacy" and start there.

Every community should have a Bridge School. But we don't. I think the closest thing we have in Cincinnati is the Perlman Center. The therapists at Perlman provide evaluations that will determine the best technologies for child's ability.

If your child is not following a typical pattern of cognition development, MR/dd schools are geared for non-curriculum track. Also try the Springer School which is a private school on the eastside of Cincinnati focusing on learning disabilities.

We must also pay attention to what our politicians are doing. Schools that are having difficulty passing tax levies in communities already paying high property taxes are schools that are in need of strong advocacy. So it is very important that we sound the bell educating our representatives at the local, state, and federal levels of government to make sure our children are not lost in the financially drained mainstream schools. We need to hold these politicians accountable. We need to hold the schools accountable.

Make sure you know who these people are.

Respite Care in Cincinnati, Ohio

2008-08-20T09:37:00.000-07:00

My personal experience as been with the Redwood Rehabilitation Center on Orphanage Road off Dixie Highway in Ft. Mitchell, Kentucky. It is a stellar organization and should be used as a model for the excellent care facilities.

the Arc of Hamilton County has several programs to help with cover costs for respite services:

Family Resource Services Program can help families pay for respite services. A sliding fee scale is used to determine the percentage a family will pay for services. The program provides funds for families who are eligible to receive MRDD services.

Parents' Night Out can provide funds to hire a sitter for a child with a disability.

The Children's Home of Cincinnati offers a Child Care Program for day care and kindergarten readiness for children ages 3 months through 5 years of age. Children with special needs are accepted, but they must be able to function in their day care and preschool program settings.

Evening Star is a program of Fellowship Baptist Church in Mainville, Ohio, that provides respite services once a month for families that have a child with a disability and their siblings. Families do not have to be church members to participate.

Max's Home a day care center for medically fragile children, is a division of Maxim Healthcare Services. It provides medical treatment, adaptive education and respite for families who have children with special health care needs. Infants and children ages 6 weeks through teenagers are eligible for treatment.

MR/dd
has respite services available for eligible families. Contact your Service Facilitator to begin the process.

Nat. Child Care Information Centerdeveloped by the U.S. Department of Health and Human Services provides information and resources on child care and early childhoold education.

Ohio Department of Job and Family Services provides a daycare facility locator.

St. Joseph Home of Cincinnati
offers a respite program with 24-hour personal and medical services for medically fragile and developmentally disabled infants and young adults.

Wright's Law and IEP

2008-08-19T08:10:00.000-07:00

Wright's Law Web site has a great ARTICLE about writing IEPs or "individualized education plan."

From our own experience, it involves first identifying the child's strengths & abilities. What is this child capable of doing? This might involve having your child accessed by a team of early childhood experts before meeting with the school's psychologist.

To connect with the early childhood experts you need to contact an intervention team through a specialized organization or advocacy group. (DSA, NCPA, CAB, etc.) Most children's hospitals locally will have a list of local organizations and agencies that provide early intervention and education for new parents. It is CRITICAL that parents begin this journey early before the child is 3 years old.

Initially, our daugher's psychological accessment put her at a very, very young age so we wrote her IEP based on measurable goals and objectives according to her abilities based on where she is "developmentally." Her education plan isn't focused on academics. Not yet, anyway. Her education plan is focused on what SHE can do, not what her peers are doing.

We would have her in a classroom with her peers if that would be appropriate for her but it's not. She isn't anywhere near their "cognition" so she attends a therapeutic-based school where the focus isn't driven by academic standards or achievement.

That's our choice and fortunately we still have this alternative thanks to "continuum of alternative placement."

Advocacy 101 with Patricia Bauer

2008-08-18T16:14:00.000-07:00

I can't remember if I have Patricia Bauer's web-blog indexed. She keeps a great collection of newsworthy articles on her webblog for easy references and her site is especially helpful if you are a new parent to a child who has disability labels.

From her website:

Patricia E. Bauer is a journalist who has served as senior editor of the Los Angeles Times Sunday Magazine; special assistant to the publisher of the Washington Post; reporter and bureau chief at the Washington Post, and pundit on public affairs television in Los Angeles. Her articles have appeared in the Washington Post, the New York Times and many other publications.

Bauer is a former member of an Institutional Review Board (IRB) at UCLA, where she participated in the ethical review of federally funded medical research on human subjects, and has addressed national and regional conferences on the rights of patients and people with disabilities. During the Carter years, she worked in the White House press office as editor of the White House News Summary.

She is a member of the President’s Leadership Council at Dartmouth College, the Pacific Council on International Policy, and the board of trustees of the Riverview School in East Sandwich, Massachusetts.

Bauer and her husband are among the founders of the Pathway Program at UCLA, a post-secondary program for young adults with intellectual disabilities. They are the parents of two young adults, one of whom has Down syndrome and is a survivor of leukemia

Stiller's Tropic Thunder Blunder

2008-08-12T20:03:00.000-07:00

Listen to NPR Interview here with Elisabeth's friend Lennard J. Davis, a professor of disability studies at the University of Illinois, who isn't amused by the use of the word "retard."

YOU GO LENNARD!!!

STILLER'S Tropic Thunder Blunder

2008-08-12T13:02:00.000-07:00

The review from our film critic Moria MacDonald in Seattle who says "no delivery"
HERE

Take Elisabeth's advice:

1)Stay home.
2)Watch your kids instead.
3)Count your blessings.

Please Say Something, Don't Just Stare ...

2008-08-11T16:55:00.000-07:00

It happens everywhere we go with Elisabeth. People stare. They stare and stare and stare and stare. I've become very self conscious about it.

Most of the time, I'm pretty creative or bring it to Elisabeth's attention that she has an audience and to be on her best behavior. If she's slurping or sliming, I usually tell her that's not going to go over big with her new friends.

Most people don't know the changes of cloths we go through or the amount of care we put into making our children presentable so they fit in with the rest. I can have Elisabeth ready for a shopping trip and by the time we leave, she's ready for a shirt change, a hair comb, lotion on her hands to work out the rubbery raisin skin, or whatever it takes to make her "presentable. Her sister's are very focused on "the look" that will get Elisabeth the desired attention and "the look" that will disgust people and stop them from coming up to her.

Today while in Target, two girls about about Elisabeth's age just stared. One even looked at her and said, "that's so gross" referring to Elisabeth's preoccupation with her tongue and chew aids. It hurt. It hurt Elisabeth.

At the Limited Too, recently, a group of girls probably younger than Elisabeth reacted the same way using the "R" word and laughed. Fortunately, her younger sister was trying on clothes while this was happening.

I guess I'm writing this because I want people to know it's okay to come up to us and say hello or even help me distract Elisabeth from being so fixated on her hand, fingers, cloths or hair. If you're with your children, remember children learn from example. They'll do or say what you, the adult, will do or say.

In this situation, it's okay to say "hello." If your kids ask "what wrong with her" tell them you don't know.

Should it matter?

You would be surprised how easy it is to get a smile from our kids. When people say "hello" she usually stops she's doing long enough to wave or smile.

PLEASE BOYCOTT TROPIC THUNDER

2008-08-11T16:28:00.000-07:00

AAPD Condemns Portrayal of Disabled Character, Use of the Word 'Retard' in 'Tropic Thunder'

Last update: 6:29 p.m. EDT Aug. 11, 2008

WASHINGTON, Aug 11, 2008 /PRNewswire-USNewswire via COMTEX/ --

Depiction of character and repeated use of word "horrifying" The largest cross-disability membership organization in the U.S. on Monday condemned all of the entities involved in creating, producing and marketing the movie "Tropic Thunder" for the use of the word "retard" and their portrayal of an intellectually disabled character in the movie.

The American Association of People with Disabilities (AAPD) helped organize a coalition of disability groups that have come together to boycott the film. Members of the coalition, including AAPD's President and CEO, Andrew Imparato, met with DreamWorks executives last week to discuss concerns about the film.

The movie is a movie-industry spoof depicting a caricature of an intellectually disabled person -- a character called "Simple Jack," played by actor Ben Stiller's character -- which is a continuation of the horrifying portrayal of disabled characters in entertainment.

AAPD is also disgusted at the use of the word "retard" numerous times in the movie and promotional items for the film, including the promotional slogan, "Once upon a time there was a retard," in the now-defunct Web site for the movie-within-a-movie, "Simple Jack."

"Both the use of this word and the appalling portrayal of an intellectually disabled character in this movie are incredibly damaging to people with intellectual disabilities," Imparato said after viewing the film Monday. "This movie perpetuates use of a hateful word the disability community is trying to eradicate from our country's vocabulary. Although the movie is considered satire, this depiction of a person with intellectual disabilities is far from funny."

"One of the biggest challenges for people with intellectual disabilities is when society encourages this portrayal of them," said Cheryl Senenbrenner, Chair of the American Association of People with Disabilities board, whose 38-year-old sister, Tara Warren, has Down Syndrome. "It's almost the worst adversity they face. People like Tara can do phenomenal things. She's very highly accomplished."

"As a person with a disability, the movie didn't make me feel good," said AAPD board member and President of Self-Advocates of Indiana, Inc. Betty Williams after viewing the film Monday. "I felt really horrible hearing them say the 'r' word so many times, so easily."

AAPD is also disappointed that the filmmakers included in the movie reportedly discussed the potentially offensive content of the movie with other groups before moving forward with production, but did not hold similar consultations with the disability community.

AAPD issued a joint statement as part of the coalition, which includes the Special Olympics, Arc of the United States and the National Council on Independent Living, criticizing the film and calling on Hollywood to remedy the harm that is being done by the film.

The American Association of People with Disabilities (AAPD), the country's largest cross-disability membership organization, organizes the disability community to be a powerful voice for change - economically, politically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: http://www.aapd.com.

SOURCE American Association of People With Disabilities http://www.aapd.com

Message from Dark Knight 13

2008-08-09T17:56:00.000-07:00

I copied this message from my friend Dark Knight who posted this question to parents like me on Patricia Bauer's site here

How can you all so egregiously miss the satiric point of Simple Jack? It is not making fun of those with mental retardation; instead, it is satirizing the callous actors and actresses in Hollyweird that exploit those individuals and use such roles to bolster their Oscar chances and make themselves seem socially conscious. The use of words like “retard” simply emphasize the actors’ complete lack of empathy for the subject of their portrayal. If I had a child with this disability, I’d find Sean Penn’s and Rosie o’ Donnell’s “serious” movies much more offensive than Simple Jack.

Don’t boycott Tropic Thunder…instead use that Simple Jack subplot as an example to Hollywood of what you will no longer tolerate from movies about the developmentally disabled. After all, to paraphrase Jonathan Swift, the point of satire is to point out flaws in the hopes of redeeming them.

First, I don't know where to start but how about with the quote from Jonathan Swift who also said "satire is a sort of glass, wherein beholders do generally discover everybody's face but their own."

Jonathan Swift relied on creative genius to write his satires about political injustices and minority causes. Ben Stiller on the other hand, has relied on cheap shots using farce to exploit the "industry standard" depicting our family and friends.

In all honesty, Dark Knight 13 my friend, I don't have issues with Rosie, Dustin, Sean, Cuba or anyone who wants to take on the challenge of portraying my family and friends. More power to them. If you or anyone else thinks these actors look ridiculous doing it, well maybe you don't feel comfortable with "disability" or how it looks.

Yes, sometimes "it" looks strange. It looks "weird" to some people, too. Often times, it makes people uncomfortable. Regardless, my family and friends are not their disability. They are people first so if their humanity can be conveyed through acting somehow, more power to the acting guild.

On the other hand, if you think Rosie, Dustin, Sean, Cuba or anybody else were trying to pity, politicize, parody, or patronize our family and friends, please use a platform different then a farce-comedy directed at the illiterati, ignorami, and idioti with a movie tag line "never go full retard."

Tropic Thunder: Focusing on the Problem, Not the Solution

2008-08-06T13:28:00.000-07:00

This movie has caused quite a stir even before it's release date.

It's a parody about the film industry and at the center is a character whose acting career is on the skids. For laughs, the movie relies on an old technique of using words and stereotypes that makes everyone laugh at the expense of people who are labeled with mental retardation disabilities. For that, one can only hope that they go easy the careers of Stiller and Black because they have stooped to an all time low on this one.

In the movie itself, there is a comedy-parody movie about the industry standard of portraying people with mental retardation disability labels. Unfortunately, Mr. Stiller does not understand that once he enters into the political arena of creating characterizations of our children that reflect negatively on their humanity he becomes part of the culture creating the barriers our children have to face each day. Furthermore, if he had an issue with Hollywood's "industry standard" then he should have used a more proactive approach rather than perpetuating the characterization with ongoing gags about "going full retard."

I heard that DreamWorks just pulled the plug on one of the website releasing this statement:

A consortium of groups including the Special Olympics and the Down Syndrome Assn. of Los Angeles first contacted the studio Friday and set up a meeting with DreamWorks CEO Stacey Snider and other senior executives to discuss their concerns about the film. That meeting is scheduled to take place this afternoon .
DreamWorks decided to pull the plug on the site Monday night as a preemptive move.

"We heard their concerns, and we understand that taken out of context, the site appeared to be insensitive to people with disabilities," DreamWorks spokesman Chip Sullivan said."

So...

... in DreamWorks reality bubble, the right context for this kind of characterization is their movie, "Tropic Thunder," a movie that claims the running gags about "retards" was not intended to be funny because "going full retard" isn't really meant to be funny. We should only be laughing if we see the satirical portrayal of "industry standard" and the actor on the big screen who is pretending to act like "retard."

So, "in context" means it is acceptable for DreamWorks to portray people with mental retardation labels as long as it's making fun of the perpetrators who help perpetuate inaccurate characterizations of our children?

Isn't that focusing on the problem, not the solution?

Either way, I still don't get how any of this is funny much less material for "the hottest movie this summer."

The ends do not justify the means.

Anytime.
Anywhere.
Anyone.

Breakfast at Tiffany's

2008-08-04T11:03:00.000-07:00

Elisabeth really enjoyed Chicago last week.

We spent a good deal of time hiking down Michigan visiting the museums, Navy Pier, and stores. Oh the many, many stores. One store Elisabeth visited was Tiffany & Company because her grandmother wanted to price one of the charm bracelets there. I told my mother, "You know what they say about Tiffany's, don't you? If you can't see the price, you probably can't afford to buy it."

Elisabeth disagreed, so in we went right about breakfast time. All six of us. Elisabeth's mother, sister, grandmother, auntie, and cousin looking more like we were hiking through Glacier Park and observing rock formations rather than shopping the "Million Dollar Mile."

As it turned out, the girls were fascinated with the jewelry and one can always dream, right? But halfway through the visit, Elisabeth was becoming very irritated so I headed to the restrooms three levels up to check it out.

As it turned out, Elisabeth needed the facilities and fortunately Tiffany's restrooms were more than accomodating for her needs. To be safe and spare a Tiffany shopper from embarrassement, I asked Elisabeth's eleven year old sister to stand guard at the door to prevent anyone from walking in on us.

It was taking a little longer than I expected but I overheard on the other side of the door, a woman's voice inquiring why it was neccessary to guard the door. Elisabeth's younger sister responded by saying "my mom is in there with my sister and they need a little privacy. She should only be a moment." After a few moments, I overheard the woman whose patience was wearing thin I imagined asking my daughter, "How old is your sister?"

"Fourteen."

Silence.

"Oh."

I suppose this stumped the woman but she either continued to wait instead of barging in like so many people do after their curiosities get the best of them or she simply moved on because I didn't hear anything else afterward.

After Elisabeth was ready, I opened the door and found standing next to my daughter an employee wearing business attire and sporting a store manager's badge. She smiled at Elisabeth and me, helped me with the door, and went her separate way.

I couldn't imagine in a million years what was going on in that woman's mind while she was standing there and waiting to use the bathroom. A bathroom that was being guarded by an an eleven year old who offered nothing more than a simple request for her to wait because a 14 year old sister needed privacy. In Tiffany & Co.'s restroom of all places.

And this woman waited patiently giving Elisabeth the dignity and privacy she deserved not because she was a shopper at Tiffany's, not because she was disabled, but because she is a human being.

Dear Joan, Miracles Happen!

2008-07-10T05:54:00.000-07:00

Yesterday, a miracle happened at 5 p.m.

Elisabeth finally used the adapted potty instead of her diaper. I've been waiting for how long for this to happen?

And all it took was a week full of rainy days, polyethylene glycol, and a few episodes of "Joan of Arcadia."

I had this theory was that if I timed the polyethylene glycol (stool softener) and the "sittings" in the chair to morning, lunch, dinner time, and bed time, that eventually a pattern would emerge for Elisabeth to use the potty instead of her diaper.

Since life happens, year after year, my theory remained what it was. Believe me when I write that I tried. I honest-to-God tried to stay on a schedule, but Elisabeth just wasn't "getting it." The only pattern we saw emerging was our own of relying on this time to do something that didn't involve her.

This summer, I found myself revisiting those same feelings of failure after a few weeks of potty training with no success. And having a ten year old who continues to remind me that "She" alone is the center of MY universe wasn't helping either.

It was raining yesterday, like the day before, and the day before that one, so we decided to go to the library. My ten year old went straight over to the kid's section and I took Elisabeth over to non-fiction to find that book about potty training to make sure I wasn't missing something. I needed inspiration.

I scanned the library shelves and over to my left, in big red letters I saw "Joan of Arcadia."

Is God talking to me or was I being diverted from my job as Elisabeth's Mom? My job to teach her how to use the potty. Selfishly, wandered over to the DVDs and picked up the first few episodes. I loved that program.

Watching "Joan of Arcadia" with my family eating popcorn or ice cream reminded me of the old days in 1965 when I was growing up. When watching television with your family was a treat.

In 2003, it was the ONLY program on network television that had a realism with which we could relate as a family. It was a good family show and it was going to rain the rest of the day. The kid's needed a diversion. Maybe even a little God. I needed a break from reality.

Like me, both Elisabeth and her ten year old sister became instantly hooked on the "Joan" character so by the time the second episode ended it was time to get ready for dinner. Just as the background music started to play, I picked Elisabeth up and started dancing with her towards the bathroom to give her time to sit on her adapted potty.

I sat her down, put her safety belt on, and gave her the "talk" which for the last two weeks seemed pointless since she wasn't showing any sign of interest. The only pattern emerging here was my own using this time to start dinner.

I handed her her plastic chains to keep her busy. Just for a while. Elisabeth loves her plastic chains. Ask anyone who knows her.

The phone rang. I started dinner. And time passed. I peeked in around the door from time to time to check up and there she sat. As happy as she always is. Slurping at her chains. Her shirt. She smiled when I called her name.

I left her be for a little more time. She's safe. She's happy. And I still had more to do in the kitchen. What more could I ask for?

Dinner was almost ready. The table was set. I went in to get Elisabeth who is looking quite the 14 year old. Her head was tilted and she was very involved with her plastic chains. She was grinning. She was happy to see me like always. But this time when I lifted her off the seat, I saw something I've been waiting for a long,long time see.

A miracle.

Miracles happen.

Shortbus

2008-06-29T17:30:00.000-07:00

Looking for a good summer read? Here's THE BOOK for your summer reading.

Labeled "dyslexic and profoundly learning disabled with attention and behavior problems," Jonathan Mooney was a short bus rider--a derogatory term used for kids in special education and a distinction that told the world he wasn't "normal." Along with other kids with special challenges, he grew up hearing himself denigrated daily. Ultimately, Mooney surprised skeptics by graduating with honors from Brown University. But he could never escape his past, so he hit the road. To free himself and to learn how others had moved beyond labels, he bought his own short bus and set out cross-country, looking for kids who had dreamed up magical, beautiful ways to overcome the obstacles that separated them from the so-called normal world.

Mom! There's a rooster on the beach!!!

2008-06-23T10:48:00.000-07:00

Backpacking through Bordeaux Mountain ...

Wading in the ocean with Dad

Mom! Did I just see a rooster go by?

No, Honey, it's only a hen.

Smells Like Teen Spirit

2008-06-23T04:59:00.001-07:00

This morning, I hear her crying instead of the usual slurping she does during her waking ritual.

When she was young, she would tap a button with a part of her body that activated music when she was getting too close to the rail but she doesn't do that anymore. Now, she tries to get off the bed on her own.

This morning, it's different. She's obviously very sad from a bad dream or maybe it's a gas bubble from the ungodly amount of birthday food intake from yesterday or maybe cramps or maybe constipation or maybe her back hurts. (She had two rods fused when she was 8 years old to correct the double helix forming in her back.)

She's still very small for her age. She weighs under 50 pounds and barely comes up to her younger 10 year old sister's shoulder. An Xray of her feet resembles beaver paws from all the paddling she does when using her pony walker and gait trainer. If you let her transfer her weight bearing death grip hands to your wrists, she'll walk very methodically.

Her visual field is a mystery. She doesn't have a focused gaze. Her eyes wander around your face. Her communication ability is very simple most of the times. She uses a tech talk and a saddle switch for making choices.

Recently, we were going through some old summer clothes in her closet and recorded on her switch buttons the phrases "OH! I like that!" and on the other "EWWW! I don't like that!" Next, we displayed one article of clothing at a time to let her choose. It was pretty clear after the first few pieces that she wasn't the least bit interested in sorting out her summer cloths. What 13 year old likes to clean her bedroom?

From her play stuff to the stuff she wears, we're easing into "teen hood" slowly getting rid of the "baby stuff." Her habits, preferences, or her growth chart hasn't changed much since she was 7 or 8 years old so a lot of the stuff isn't age appropriate for a 13 year old.

What has changed is her taste in music. She loves drums, guitars, and shakes her head to the rhythm of songs she really likes.

This morning, she's crying. Wailing in fact. To someone who doesn't know her, they would be panicked and on their way to a hospital but somehow I know it isn't serious. I've heard this kind of cry before. She can't tell me what it is exactly but I sense it's something internal so I massage her trunk. Talk to her in a soothing voice letting her know it will be okay in a few minutes. Then I pick her up to take her to the potty where she still sits and sits and sits and sits and nothing happens.

So I give her a quick bath, dress her, and bring her out for breakfast. She's smiling again. Slurping again. And if she could talk I know what she would be asking for this morning. It would be one of the 5 leftover slices of cheesecake from her birthday.

Elisabeth is 14 today. And it smells like teen spirit.

Happy Birthday Elisabeth!

2008-06-23T04:47:00.001-07:00

Elisabeth enjoying her special day

Collective Souls & Pillow Fights: Round Two

2008-06-19T13:33:00.000-07:00

I've always struggled with writing. With words. I'm a spacial learner. Not gifted. Just very spacially oriented. When somebody like Harriet McBryde Johnson comes along and starts telling it like it is, I feel justified. Sweet justice.

"Ahhhh... finally somebody gets it and can articulate clearly what it is we're all talking about."

What are we talking about?

We're talking about a fear we have that what is rightfully theirs will be taken away. We fear people making decisions on their behalf. We fear people who think they understand our children's needs but do not. The people who speak on our children's behalf. People who pretend to understand a language our children speak. A language that fewer people understand. People who claim to protect our children because a law requires them to do so. People who put so much credence into laws protecting our children that they no longer see the exception to the rule.

We fear that once we're out of the picture speical liberties will be taken with our children who will grow into adulthood not with degrees from college but who will need to rely on people to do just about everything for them. We fear they will be left in the care of someone who is clueless about their real needs. We fear the laws that will be written in their behalf. We fear they will be seen as a burden or an object of pity. We fear people who will not treat them "wholly" or begin making decisions on their behalf like they did with Terry Schiavo.

How will they know my daughter climbed Half Dome in Yosetime or packed through Many Glacier and saw a Grizzly? How will they know she camped on Assateague enduring a million hungry mosquitos just to hear the ocean roar at night under an evening sky crowded by twinkling stars. Will they care that she felt a stingray brush up against her ankle near the equator or sat in photos with the local celebrities? Will they know that making bubbles in a pool makes her laugh hysterically and sad music makes her cry?

How will they see her for who she really is if she cannot speak a language they understand?

I think about an abled young Anne Frank. I entered into her world when I was 12 years old through a diary of hope she left behind. I think about the way her family was rounded up all those 67 years ago because a small minority got it into their head that they were superior and the world would be better off without Anne and her family.

I think about how Anne felt as she was sent off to be murdered because of the way she entered this world. How we leave this world shouldn't be determined by the way we enter. I think about all the people who were witness to these horrendous murders but did nothing. I think about all the people who were not paying attention when the laws that took her rights away were being passed. Law giving permission to exterminate children. I think of all the people today who are still not paying attention while laws are beings passed. People who are so wrapped up in their patriotism that they're forgetting to look at the fine print.

We have no control over what happens to our children once they grow into adulthood once we're out of the picture. So when somebody like Harriet comes along, we want to hold on to her for dear life because she helps make the connection for all our children.

She was a life line for all our children. She wrote with clarity and logic so pure and so simple. When I write on my daughter's behalf, my ideas, my observations, my events, are described through words that are like feathers exploding from an imagined pillow fight. The words, like feathers, are always floating through the air for me. When I reach out for one to create something, it eludes me. When I reach down for one, the wind carries it away.

For anyone who ever wrote a string of words, conveying an event, an observation, or an idea that enabled another person to see goodness in our humanity, I say thank you. Your words must live forever because it is through your words I find hope and connection to humanity. It is through your words I see a future for my daughter where she can exercise her independence, freedom, and happiness. She will have struggles, like everyone, but unlike everyone, she will be one of the feathers in the air.

Rhetorical Question

2008-06-17T10:34:00.000-07:00

Elisabeth's birthday is coming up. It's so hard finding presents that are suitable for her. We've made a lot of our stuff over the years, but she's going on 14 and it's not that easy anymore.

EVERYTHING so expensive for our kids. And the toys that we think might be developmentally appropriate are not age appropriate.

A fiber optics plastic tubing kit is over $4000.00. Does anyone know how cool this toy is for our kids? Fiber optics in our kid's hands give them at least an hour of total pleasure. And it's therapeutic, too; helping them develop fine motor abilities, cause and effect, etc. Also with this group of toys was listed a wonderful light and sound board that kids can manipulate by touch and it's about $7,000.

Hello??? Is anyone listening here?

My guess is that if one of those cheap hand held virtual pets were specially adapted for our children, it would cost around $4000.00 for them instead of what it costs for typical developing kids. Just a guess.

It's not just because everything is expensive. It's been that way since she was born. Listed in several special toy/equipment catalogs are the following:

A bubble making machine is listed as $85.00 ... fortunately Elisabeth's auntie found one for $5.oo at Target.

Disco light ball is listed as $75.00. I found one at Walgreens for $3.99 on sale.

Hand-held sensory stimulation vibrating toys are listed over $100.00. Again, in Walgreens I found one for $3.99 or 2/5.00.

A simple seat pad that connects to her gait trainer is over $500.00 ... a trip to JoAnn Fabrics and we're rigging one up for under $30.00

Weight cuffs and ankles $18.00 each???

Floor Bowling Alley for $500? (This include the same plastic pins you can get at ToysRus for under $10.00. So what is it that costs $490.00? A plastic ball with three holes that my kid can't use?)

Platform and seat swings over $2,000 dollars????

Adapted bicycles over $2,000?

I've gotten a few of the switch toys over the years: Climbing fireman that is now broken, crowing rooster, roller coaster penguins, moving school bus, giraffe with moving neck, dog that flips but most of them are worn out or broken. She has the switch operated pottery wheel but that never worked right.

Her most favorite things are the chain drapery with mirror, fish tank, tomi ball, flexi ball, spongie ball, spikey ball ... hmmmmm ... koosh ball ... she has all the bubble tubes that light up when she hits the switch but she doesn't show any interest in that stuff anymore.

She has a collection of stuff that she made at school: tornado in a bottle, squishy things to touch, textured board, lava lamps, fiber optics fountains ... hmmmmmmm.

She loves ribbons, fabrics, and anything she can put into her mouth but we're trying to get her out of that oral motor stage using her hands for other stuff instead of CONSTANTLY stroking her tongue.

We're out of ideas.

Got any?

Wake Up Maggie I Think I've Got Something to Say To You ...

2008-06-13T19:34:00.000-07:00

"Perhaps more than any other adviser, Ms. Spellings helped shape the Bush education philosophy: a strict emphasis on standards and accountability, intended to close the “achievement gap” between black and white, rich and poor. While other Republicans talked of dismantling the federal Department of Education, Mr. Bush cast education as a civil rights issue, challenging “the soft bigotry of low expectations.”

- taken from a recent article written by Sheryl Gay Stolberg in the New York Times

Even though Margaret Spellings, NCLB czarina, is far from admitting it, No Child Left Behind legislation is a disaster in Ohio. All it did was create an illusion that academic standards and graduation goals were being met by hiding the failures in charter schools, grossly manipulated statistics, and "certificates of completion."

In Ohio, we learned that kids who cannot pass proficiency were warehoused in for-profit charter or contracted school environments operated several cronies. There at the warehouse, the kids don't have to take the proficiency tests so they are entirely missing from the statistics that suggest Ohio students are doing better. Instead they learned how to organize their time, learn about manners, and learn how to play basketball. To make the drop out rate go down kids who are not eligible to receive a diploma are given a "certificates of completion" which qualifies them for one thing -- to serve in the armed forces.

In many school districts for the kids who can pass proficiency or at least show potential, contracts that guarantee testing success are offered to schools that are designed to help students "prepare" for the tests. In every school in Ohio, teachers take a detour from their regular classroom responsibilities so kids can log onto computer programs for a few weeks that give similar "test questions" so the kids will know the answers beforehand.

There are still no real statistics that support No Child Left Behind is actually narrowing the disparity between "black and white" and the "rich and poor." The only thing it has done is create an illusion of statistics that were easily manipulated to hide the disparity.

Apparently, there's a whole bunch of kids missing in Ohio! Kind of ironic, isn't it?

Special Education News Updates

2008-06-13T19:25:00.000-07:00

Click here to keep updated about NCLB, IDEA, FAPE, and other legislatives that prevent or promote special education opportunities for your child.

Because You Made It So ...

2008-06-12T17:03:00.000-07:00

"If you wish to believe [that memory and imagination are components of history], do so with the knowledge that nothing is absolutely true nor is it untrue until someone has made it so." Elizabeth Cook-Lynn

In Memory of Harriet McBryde Johnson

"... because you made it so..."

One February a few years back, Harriet McBryde Johnson wrote an article, "Unspeakable Conversations," about our need to educate each other how disability labels devalue "existence" for our children who are tagged with one. She defended our child's right to be who they are, with or without a disability.

As I was re-reading through her article today, I remember that it was also the same February I was writing about my own frustration with being unable to articulate my concern for my daughter's future. The "advocate" label was wearing thin on me. I was losing hope. I asked, what kind of world was I leaving her to?

I feared I was leaving her to a world that still sees her as an object of pity if they see anything at all. A world that continues to see her "being" as only an afterthought. A world where she must wait for people who don't even acknowledge her existence until it's time to fill out the paperwork or change her diaper or feed her.

I had hoped to send a universal message of appreciation and thanks that February to anyone out there who had ever helped another person connect to their own humanity. To anyone who ever gave damn about our children's "being."

I'm glad that Harriet got the message.

Ms. McBryde Johnson's article "Unspeakable Conversations" is linked by clicking HERE.

Voluntary Self-Commitment

2008-06-12T04:06:00.000-07:00

I caught this editorial this morning and was saddened to hear that Harriet McBryde Johnson passed away June 4, 2008. She was a woman who wrote extensively about the parallel worlds created by the abled for those who are labeled disabled.

Harriet's words provided inspiration for me when I was feeling gloomy about the future prospects for my daughter. I would re-read her articles and book for strength and inspiration to refocus on whatever the issue was at hand.

Most of the time, it was her words I would cling to when I felt I was losing my grip on reality over the changes in legislation and how it would impact my daughter's future. Or how it wouldn't affect her at all.

If you click on the title above, you'll be linked to the "Disability Gulag" article she wrote advocating for home health care instead of institutionalizing people through "voluntary self-commitment" which is the catch 22 of all time.

Here is the editorial as it was printed in the New York Times today:

A Life of Quality

By LAWRENCE DOWNES
Published: June 12, 2008

In “Parting the Waters,” his history of the early civil-rights movement, Taylor Branch recounts how a teacher of Gandhian resistance, James Lawson, would tell his students not to curl passively into fetal balls when segregationists came to beat them up. It only made them more brutal.

“This was a way to get livers kicked in and backs broken, he said, recommending that resisters try to maintain eye contact with those beating them.”

I thought of that when I learned of the death of Harriet McBryde Johnson, who looked at the world with an unflinching, sometimes withering, gaze. What many saw when they looked at her was a scrawny woman with a twisted spine who got around with a power wheelchair and lots of help. What she saw was a world that refused to make room for the severely disabled, one that looked at people like her — if it looked at them at all — with horror, hostility, condescension and pity, a sentiment she hated.

Ms. Johnson, a lawyer who was 50, died on June 4. She was an eloquent defender of the rights of the disabled. She came to wide attention through The New York Times Magazine, in essays she wrote about her confrontations with the philosopher Peter Singer over his defense of killing disabled infants at birth.

Ms. Johnson, an atheist, was unmoved by religious appeals to life’s sanctity. Instead, her rebuttal boiled down to a simple: How dare you? How dare you decide that certain people with limitations are nonpersons with no right to exist? How dare you presume to define “quality of life,” for me or anyone else, to set the value of a disabled life lower than yours, or to conclude that such a life lacks the potential for happiness and dignity because you cannot imagine how it could?

The disabled certainly suffer. But everyone does, Ms. Johnson argued, and if the disabled face extra hassles and indignities in life, well, remedies for those things are all possible, and should be provided. Instead, the world is run by and for the nondisabled, and those who don’t measure up are infantilized, ignored and stockpiled in institutions that Ms. Johnson called “the disability gulag.” She feared being sent to it in her later years.

Ms. Johnson was enraged by injustice, but not susceptible to hatred or despair. To her, Mr. Singer was a monster, but she realized that the unenlightened also included many of her own friends, colleagues and relatives. She decided that “it’s not in my heart to deny every single one of them, categorically, my affection and my love.”

Child Voted Out of Class

2008-05-29T16:32:00.000-07:00

Click on the title above to read the story.

It really makes me sad to read stuff like this. We don't know the first thing about mainstreaming, do we?

A few weeks ago, during my daughter's choral concert, one of the girl members who is developmentally delayed was singing off key and people were laughing at her. Evidently they thought it was so funny that she couldn't keep up with the rest of the group so they pointed out her disability even more by laughing at her attempt for wanting to be part of the group. They were laughing at her for wanting to be included.

Is this what mainstreaming is all about? To be included only if people can laugh at you when you don't measure up? When you're trying to fit in? Or in this little boy's case, to be voted "off the island" because he didn't behave like the rest of the people who live "on the island?"

Wheelchair Navigation

2008-05-23T13:17:00.000-07:00

I'm keeping a list of destinations and locations that go beyond our expectations in regards to wheelchair accessibility. I also have a list of places that have fallen short of our expectations making our experiences on a family outing go from enjoyable to frustrating.

I'd like to start with a few places in Cincinnati that do a great job.

Of course the Zoo, Cincinnati Museum Center, Freedom Center, Coney Island, and Kings Island do a great job even when you don't call them in advance they are prepared. Stadium Parking is great if you can find the wheelchair parking that isn't filled. Paul Brown has parking right in front so get their early or call in advance. The Great American Ballpark has a different "accessible" entrance that faces the river. You'll see everyone going into the front door but if you have a wheelchair, you'll be directed around to go the other entrance. It takes a while so if you're running late, add another 15 minutes to get to your seats.

Cintas Center, (XU) is a complete disaster. Basically, you have to drop the person off at a special "handicap" entrance and go park your car because there is a moat of levels and stairs that separate the sea of parking and the facility. If the event is on the other side, good luck.

Taft Museum's only designated wheelchair parking is on slope and there is no room for a lift. To visit the Art Museum, you have to use the back entrance. Good luck finding a parking spot near the back entrance!

At Music Hall, park in front only on Elm Street. Don't use the garages or parking anywhere on Central Parkway or near WCET. Navigation from there is a nightmare.

Good luck finding decent parking downtown Cincinnati because Fountain Square Parking is a disaster and very dangerous. The wheelchair curbs and elevators are not anywhere near the wheelchair parking. If you have children with you, it doubley dangerous. There is a blind spot corner in direct traffic to access the elevators. So if you're in a wheelchair, you're expected to go in the direct path of incoming cars to get to the elevators.

If it's raining, you can't use the Kentucky Indoor Parking lot at the Visitors and Convention Bureau because it's too low for big vans transporting a wheelchair. You'll have to park outside in a front parking lot that also doesn't have wheelchair curbs that take you directly to the building. You have to go a block and use the ramp there while everyone else can cross directly.

Autism: Specialized Schools vs. Mainstream Schools?

2008-05-22T07:22:00.000-07:00

Mainstreaming into community through classroom doors works for some, but not for others. When a disability label is too big to put on jar, maybe schools need to rethink the "mainstream packaging" and be open to other options for children with special needs.

Parents of Disabled Students
Push for Separate Classes
By ROBERT TOMSHO
November 27, 2007; Page A1

NEW BRUNSWICK, N.J. -- Last fall, groups who favor placing disabled students in regular classrooms faced opposition from an unlikely quarter: parents like Norette Travis, whose daughter Valerie has autism.

Valerie had already tried the mainstreaming approach that the disability-advocacy groups were supporting. After attending a preschool program for special-needs students, she was assigned to a regular kindergarten class. But there, her mother says, she disrupted class, ran through the hallways and lashed out at others -- at one point giving a teacher a black eye.

"She did not learn anything that year," Ms. Travis recalls. "She regressed."

As policy makers push to include more special-education students into general classrooms, factions are increasingly divided. Advocates for the disabled say special-education students benefit both academically and socially by being taught alongside typical students. Legislators often side with them, arguing that mainstreaming is productive for students and cost-effective for taxpayers.

'Fully Included'

In 2005, more than half of all special-education students were considered mainstreamed, or "fully included," nationally. These students spent 80% or more of the school day in regular classrooms, up from about a third in 1990, according to the U.S. Department of Education.

"The burden is on school districts and states to give strong justification for why a child or group of children cannot be integrated," says Thomas Hehir, an education professor at Harvard and former director of special education at the U.S. Department of Education.

That point of view frustrates many parents. Some have struggled to get services from their local school districts; others have seen their disabled children falter in integrated settings.

Mary Kaplowitz, a special-education teacher in Kingston, Pa., was a bigger supporter of mainstreaming before she had her son, Zachary, who has autism and is mildly retarded. She says his preschool classmates rarely played with him and he came home from summer camp asking why the nondisabled children laughed at him. On a visit, she saw them drawing away from her son.

"They shunned him and it broke my heart," says Ms. Kaplowitz. Earlier this year, she and other parents fought successfully to preserve separate special-education classes in Kingston like the one Zachary, now 9 years old, attends at a local elementary school.

Such parental pushback has prompted local school districts across the country to delay or downsize mainstreaming initiatives.

Last year, parents of disabled kids in Walworth County, Wis., clashed with an advocacy group over the creation of a new special-education school. As part of the battle, Disability Rights Wisconsin sued the county in Milwaukee federal court to try to block the school. The new school is currently under construction and the lawsuit is under appeal.

And earlier this year, parents in Maryland's Montgomery County asked the state to continue a special-education program their school district was scheduled to discontinue. After initial protests, the district agreed to phase out the program -- letting enrolled kids continue -- rather than close it outright.

The debate has grown contentious in New Jersey, a state with a strong tradition of separate education for the disabled. Only about 41% of the state's 230,000 special-education students are deemed fully included, compared with 54% nationwide. About 9% of the state's disabled students -- triple the national average -- attend separate schools.

New Jersey passed some of the nation's first special-education laws. In the 1950s, it began requiring public schools to pay for special-ed services that they didn't offer. State law also gave counties and groups of school districts broad powers to build stand-alone schools for the disabled. Today, there are 80 publicly funded separate schools for the disabled in New Jersey and about 175 private ones. They receive tuition from public districts for handling special-ed students.

But in 2004, the state, which had faced federal pressure to mainstream, placed a year-long moratorium on the opening of new special-education schools. Since then, it has stiffened the approval process for private facilities and bolstered funding for local districts to broaden in-house programs.

In a budget-strapped state where voters have been demanding tax relief, cost has been a factor. On average, New Jersey spends about $16,100 a year on each special-education student, including those who are mainstreamed. The average annual tuition at the various, separate public schools for the disabled range from $28,500 to $42,000; at private schools, it's $44,000.

Overall, tuition and transportation costs for out-of-district placements accounted for 39% of the $3.3 billion a year that the state spends on special education. "That's a huge cost driver for our education budget," says state Sen. John Adler, who last year co-chaired hearings on school funding reform.

Many parents, including state Sen. Stephen Sweeney, bristle at moves that could foreclose their options. His daughter, Lauren, who has Down syndrome, attends a regular middle school. But Mr. Sweeney says her nondisabled classmates never visit or ask her to hang out. Next year, he's moving Lauren to a separate high school operated by the publicly funded Gloucester County Special Services School District. The system's special-education facilities also include a new $14 million school for children with autism and multiple disabilities.

'The Choice of Parents'

"Just to put my child in a building to make people feel better because it's inclusion is outrageous," says Mr. Sweeney. "As long as I am in the legislature, they are not going to take away the choice of parents with children with disabilities."

The school funding hearings, held in various towns and cities last fall, were emotional. Ruth Lowenkron, a special-education attorney, testified that beyond being the right thing to do, mainstreaming would save money. "Repeat after me," she told the legislators, "inclusion is cheaper than segregation."

But the panel also heard often from parents who argued for continued access to separate schools.

They included Adela Maria Bolet, of Teaneck, N.J., whose suit-clad son, Michael, sat beside his mother while she testified. The 17-year-old, who has Down syndrome, now attends a private high school on the state's tab. In earlier years, Ms. Bolet fought to get Michael into regular public schools only to find that he sometimes became depressed and had little positive interaction with nondisabled peers.

Until high school, he had few friends, says Ms. Bolet. Her voice still quivers when she talks about what happened when the family rented a pool in town and invited classmates from Michael's neighborhood elementary school to a swimming party for his 13th birthday. "Nobody came," she says.

Concurrent with the funding hearings, another debate was boiling at New Jersey's publicly funded Middlesex Regional Education Services Commission. It had already supported and built a network of six special-education schools, and planned to open two more, including a 24-classroom facility. The commission, controlled by a consortium of school districts, had built its other schools using bonds guaranteed by Middlesex County's governing board. Its school projects had never faced significant opposition.

This time was different, as the proposed schools became a target for mainstreaming advocates. Critics like William England, a school board member in South River, N.J., wrote to local papers. To endorse the sort of segregated special-education schools that most of the country is busy abandoning would be "a waste of county resources," he said in a letter to the Home News Tribune, East Brunswick, N.J.

Mark Finkelstein, the Middlesex commission's superintendent, scoffs at such criticism. He estimates his schools save local districts $10 million a year over the cost of placement in privately owned facilities. "It's easy to say that all kids should be in mainstream schools but let's talk reality," he says.

On a recent morning at the Bright Beginnings Learning Center -- one of the Middlesex schools -- a hallway painted mint-green was lined with children's wheelchairs and walkers. In one classroom, a teacher and four aides were working with seven disabled students, most strapped into devices designed to help them stand or sit.

Mary Lou Walker, an aide, crouched beside the desk of Teresa Condora, a petite 7-year-old who suffers from cerebral palsy and is largely nonverbal. "All right T, come on," Ms. Walker said, gently urging the girl to press a big red plastic button attached to a buzzer. Responding with a soft moan, Teresa pushed against the button as though it were impossibly heavy.

Factions Face Off

Last September, pro- and anti-mainstreaming factions faced off at a meeting where the fate of the proposed new Middlesex schools was to be decided.

At the microphone that evening, Paula Lieb, president of the New Jersey Coalition for Inclusive Education, cited multiple examples of severely disabled children who had been successfully mainstreamed. She said that "the vast majority of children can be included in the public schools."

But the parents of children already attending the commission's schools had also been organizing, urging each other to come to the hearing and bring their disabled children.

Sandy Epstein's family had moved to New Jersey from Oregon a decade earlier to take advantage of specialized schools for students like her son, Brandon, who has autism. For the hearing, the 48-year-old homemaker dressed her teenager in a bright red polo shirt and sat near the front. "I wanted him to stand out," she says. "I wanted these politicians to see what we are talking about."

Ms. Travis, a 41-year-old bookkeeper from Milltown, N.J., says that while waiting to speak that night, she grew angry with the criticisms of the inclusion advocates. She thought they had no idea what her daughter Valerie, now 11, needed.

The Travises had spent eight months on a waiting list to get Valerie into the Academy Learning Center, one of the Middlesex schools located in Monroe Township, N.J.

During that time, she says, the progress Valerie had made learning to speak all but disappeared. Along with reports of her outbursts at school, Ms. Travis says the family had to cope with frequent meltdowns at home. Valerie slept fitfully, ripped up her homework and beat up her little brother to the point that he once needed stitches.

"It was the worst eight months of our lives," Ms. Travis told the county officials, adding that families like hers needed schools like the Academy, where Valerie is now learning geography and double-digit subtraction.

Mr. Finkelstein believes parents' testimony helped convince county officials to unanimously back the bonds needed for the new construction, which is under way.

"If inclusion worked for all of our residents," the superintendent says, "they wouldn't be fighting so hard for these new schools."

Their efforts are far from over. In June, a coalition of disability-rights groups sued the New Jersey education department in U.S. District Court in Newark. Taking a page from the racial desegregation battles of the 1960s, it alleges the department isn't moving fast enough to integrate disabled students and asks the federal court to take over the process.

COFFEE BREAK FOR ARTISTIC MOMS

2008-05-22T06:22:00.000-07:00

Did I say "artistic?"

Oh ... I'm sorry, I meant AUTISTIC.

For all of us Midwestern folk who are not waiting around for the world to end in ten years, click on my title "Coffee Break for Artistic Moms" for a special read ...

Inclusion Delusion Exclusion

2008-05-21T17:21:00.000-07:00

My 12 year old went to Starbucks yesterday for a field trip. It was an opportunity arranged by a very creative special education teacher who seeks out multisensory opportunities within the community for her students who follow a very different pattern of physical and emotional development.

Her student's lips and tongues felt the steam of warm milk and their nose absorbed the aroma of vanilla, chocolate, and hazelnut. Their ears were filled with soft music while their eyes gazed upon blurrs of energy created by the sounds and motions unlike their usual environment. Their fingertips touched foamy cream and nutbread.

It is no ordinary school my daughter attends. It is one of the remaining therapy centers supported by voters through the property taxes they elect to pay and the local school districts who can afford to pay. It is a school designed to offer individualized education opportunities for children like my daughter based on their their emerging abilities. It is one of the remaining MR/dd therapy centers throughout Ohio serving children like my daughter who cannot benefit from being in a cognition-driven school environment.

The federal and state government would like to see these therapy centers close forever because instead of seeing opportunity for our children with severe disabilities, they see a pile of money that could be used elsewhere. So they spin the a delusion through legislation and paperwork that district schools can somehow re-create these same opportunities within their own districts. Districts with crowded schools and crippled finances. Districts that cannot pass tax levies to support opportunities for typical developing youth. Schools designed for and driven by cognition, proficiency, and product.

Our US government has gone as far as mandating and enforcing all Ohio school districts to mainstream all the children within their district boundaries without offering additional funding or facilitities or staffing to re-create the environments and related learning opportunties. Mainsteaming driven by economics, not education and certainly not according to the individual child's ability.

The US government has taken a law, the Individuals with Disabilities Education Act established in 1975, and turned it around to be used against the individual. A law that we created to protect the individual rights of a child is now being used by the government giving this child no alternative except for what is offered through their district schools. A law that once protected the individual has become a law protecting the federal government from guarenteeing what rightfully belongs to the child.

The federal and state government has gone as far as creating a system weighted down by paperwork designed to "include" children like my daughter in their district's classroom but in reality exclude our children from the money that was inititially used to support alternative educational opportunities so they can have the same leverage as their biological peers. The paperwork they created signs away the right of the individual to the right of the school district so instead of our kids flying through a window of independence by their own design, they are expected to gain their independence forced through a one size fits all window.

Even more paperwork was created so our children can be removed from the classroom when they become a distraction or when the activity or subject matter goes beyond their ability or skill level instead of providing supplemental tools or adaptive equipment so the children can fully partipate same as their peers. It also excludes our children from learning in an environment designed to meet their individual developing abilities.

It also excludes some schools from providing nothing more for our children than a special ed teacher or specialist who travel from school to school to look in on our children for about 15 minutes a week or half hour twice a month in room with children with varying physical, cognition, and emotional disabilities and disorders. And the money that was once earmarked for our children's alternative opportunties goes into another pocket of the government.

In Ohio, it was the old "bait and switch" used on Ohio voters. A politician claiming he or she can save the voter 8 billion dollars here and there. A politician whose soap box supporting "values" stands in the middle of a dumping ground filled with "government waste. " The "government waste" money once earmarked for the therapy schools is earmarked for something else in government.

It's a scam made possible by eight years of political corruption that started at the federal level by creating the inclusion exclusion delusion.

Children's Disabilities Information

2008-05-21T12:30:00.000-07:00

Another resource for new parents. Just click on the title above or go here:
http://www.childrensdisabilities.info/articles.html

Autism and Fad Treatments

2008-05-21T12:25:00.000-07:00

By Jeff Grabmeier
Ohio State University
August 20, 2007

Copyright © 2007 Ohio State University

This article is used with permission from:
The Ohio State University Research News

Ineffective or even dangerous fad treatments for autism, always a problem, seem to be growing more pervasive, according to researchers who studied the problem.

“Developmental disabilities like autism are a magnet for all kinds of unsupported or disproved therapies, and it has gotten worse as more children have been diagnosed with autism,” said James Mulick, professor of pediatrics and psychology at Ohio State University .”

“There's no cure for autism, and many parents are willing to believe anything if they come to think it could help their child.”

"Outrageous Developmental Disabilities Treatments"

Mulick chaired a symposium on “Outrageous Developmental Disabilities Treatments” Aug. 20 in San Francisco at the annual meeting of the American Psychological Association. The symposium included presentations by several of Mulick's students at Ohio State who participated in a graduate seminar on fad treatments in autism.
“We're not saying that all of these treatments don't work or that they are all dangerous,” Kettering said. “But the research hasn't been done to suggest that most of them are effective or even safe.” Many of the treatments may have just enough basis in scientific fact to attract attention, even if the treatment itself is unproven.

Tracy Kettering, a doctoral student in special education at Ohio State , said a Google search for the phrase “autism treatment” yields more than 2.2 million matches.

“You get hundreds of different types of therapies that come up, and many have quotes from parents that claim a particular therapy ‘cured' their child,” Kettering said.

“It's no wonder that parents want to believe. But very few of these treatments have any evidence to support them.”

The number and range of fad treatments has seemed to grow in recent years as more children have been diagnosed with autism, said Mulick, who is also editor of a book on fad treatments called Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice.

Mulick said when he began treating autism in the 1970s about 3 children in 10,000 were said to have autism. Now, reports are 1 in 166 children have the condition. The number of cases has mushroomed because of better diagnoses, and a changing definition of autism that includes a broader range of disorders.

Some of the newer, more popular fad treatments for autism involve special diets or nutritional supplements. Megadoses of Vitamins C and B6 are popular, as well as supplements with fatty acids like omega-3s.

A casein and/or gluten-free diet, which involves eliminating dairy and wheat products, has also gained favor with some parents.

While many of these treatments have never been adequately studied, that doesn't mean they aren't promoted.

“One of the characteristics of fad treatments is that they are discussed in the media and on the internet, where many parents can be exposed to them,” said Anne Snow, an Ohio State psychology graduate student.

And while some fads are simply ineffective, others can even be dangerous, Mulick said. Chelation therapy, which involves taking medicines to remove the heavy metal mercury from the body, has reportedly led to the death of at least one autistic boy receiving that treatment. Chelation therapy was also touted years ago as a new treatment against some forms of cancer but was eventually shown to have no helpful effect.

Many parents try multiple approaches, hoping at least one will help. Kettering said one survey she found suggests that the average parent of a child with autism has tried seven different therapies.

“We're not saying that all of these treatments don't work or that they are all dangerous,” Kettering said. “But the research hasn't been done to suggest that most of them are effective or even safe.”

More Scientific Evidence Needed to Support Most Claims

Many of the treatments may have just enough basis in scientific fact to attract attention, even if the treatment itself is unproven.

For instance, most scientists believe that many cases of autism are caused by genetic mutations, and some mutations can be caused by various chemicals that we encounter in our everyday lives, Mulick said.

But still, there is no evidence that any particular chemical causes mutations that lead to autism, as some have claimed.

“There's a shred of truth in the rationale presented for some fad treatments, and that is enough for some people to go with,” he said.

Another reason that fad treatments persist has to do with the natural course of autism, Mulick said.

Autism, like many conditions, has cycles in which symptoms get worse and then get better. Parents tend to search for treatments when symptoms are getting worse, and when their children get better – as they do in the normal course of disease – parents credit the new therapy.

“It's natural to have this bias that the therapy you're trying has had some positive effect,” he said. “People want to believe.”

Early Intensive Behavioral Intervention Can Have Positive Effects

While other treatments are still being investigated, right now the only therapy that has been shown to have a long-term positive affect on autism is called Early Intensive Behavioral Intervention, Mulick said.

EIBI is a highly structured approach to learning, in which children with autism are taught first to imitate their teachers. But this treatment is very time-consuming and labor intensive. It involves one-on-one behavioral treatment with the child for up to 40 hours a week for several years.

“It's expensive and difficult for many parents to use,” Mulick said. “That's got to be one reason other treatments look attractive to them.”

Mulick said other treatments and therapies are being studied. However, it takes years to test treatments for autism because of the nature of the disease and problems with proving effectiveness.

“Autism studies are a long, time-consuming, and expensive process,” Mulick said. “And some of the fad treatments being used today would never be approved for testing – they are just too dangerous.”

In addition to Mulick, Kettering and Snow, other presenters at the symposium included Ohio State graduate students Cristan Farmer, Megan Norris, Andrea Witwer and Jill Hollway.

Copyright © 2007 Ohio State University
http://researchnews.osu.edu/archive/fadaut.htm

For The Disabled, Age 18 Brings Difficult Choice

2008-05-14T18:05:00.000-07:00

For the Disabled, Age 18 Brings Difficult Choices
By MARC SANTORA
Published: May 14, 2008

Outside Sam Stabiner’s room pumps the steady drone of ventilators, giving life to his neighbors breath by breath. Most are in their 80s and 90s, in the twilight of their years.

The Stabiners’ predicament, however, is far from unique. As medical advances have allowed patients who might have died as children to survive into adulthood, the patients are falling into a void in a health care system that has yet to develop institutions for the young and “medically fragile.”

Each year 500,000 youths in the United States with special health care needs resulting from ailments like congenital heart disease, cystic fibrosis, diabetes, renal disease and sickle cell turn 18, according to a survey conducted by the United States Department of Health and Human Services.

Many of these young people will transition to adulthood smoothly, but for the most seriously disabled, the options for care often prove limited. As a result, about 8,000 people under age 30 are among roughly 1.4 million nursing home residents, according to the Centers for Medicare and Medicaid Services.

“This is a problem that has gone largely unrecognized and is only going to grow,” said Dr. Edwin F. Simpser, the chief medical officer at St. Mary’s Healthcare System for Children, the largest provider of intensive rehabilitation and specialized care for severely ill and disabled children in New York.

At St. Mary’s alone there are some 200 children aging out of its program in the next few years. “We could be talking about 70 percent of those kids ending up in a nursing home if we don’t find an alternative,” he said.

While the situation is not confined to New York, it varies state by state. “The people we are talking about did not exist 50 years ago,” said Dr. Miriam Kaufman, founder of the Good 2 Go Transition Program at the Hospital for Sick Children in Toronto. “We simply don’t have a model for these children.”

As the children grow older, so do the parents, making intensive home care more difficult, if it was even possible to begin with.

At 15, Sam Stabiner was a picture of health, with a perfect attendance record at his school and a normal life.

Then the headaches started, growing mysteriously more severe until he had to be hospitalized, fell into a coma and barely survived what doctors now believe was a rare form of meningitis.

For the next five years, he received intensive care at St. Mary’s, which provides care for some 4,000 children through inpatient, home-care, and community-based programs. The demand on the institution is so great, it is planning a major expansion of its Queens center in coming months.

Mr. Stabiner made slow progress, using a wheelchair and with only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy and able to slap high five. Beyond the care at St. Mary’s, he attended classes at Public School 79 in Manhattan, which is for children with special needs. He will age out of that program next year, his parents said.

His care is complicated because he had a tracheotomy and needs assistance eating, via a feeding tube. While he has regained some motor skills, the continuing medical care required by the tracheotomy led to his being categorized as medically fragile.

Still, when he turned 18, his parents were shocked to learn how that categorization significantly limited the options for their son’s care.

Erroll Stabiner, 67, said he contacted 87 institutions across the city, the vast majority traditional nursing homes, and found only three that had clusters of young adults. All of those were far from his home and none were particularly appealing, leaving him to try to place his son at the Isabella campus at Audubon Avenue and 190th Street, which had no history of working with young adults.

The administration at Isabella’s was initially reluctant, but after executives at St. Mary’s pressed the case, officials at Isabella’s relented.

The setting that the young Mr. Stabiner left could hardly be more different from the one he entered.

At St. Mary’s, which was the first inpatient palliative care center for children in the country, there is one health worker for every four patients. The rooms are brightly painted, with separate areas for school, recreation and physical rehabilitation. There is an attempt to allow even the most severely disabled patients to develop a routine and build relationships.

Mr. Stabiner’s old room is right off one of the main playrooms, filled with games and toys.

Michael, 17, whose family did not want to give a last name, is now residing on the hall after a nearly fatal car crash left him with a severe head injury. While he has no feeding tube, Michael will also be aging out of St. Mary’s soon and his family could face a similar quandary.

The doctors and psychologists at St. Mary’s believe the group setting and the encouragement of other children with similar ailments help speed rehabilitation, or at least provide comfort, because they are reminders that the children are not alone.

At Isabella’s, Mr. Stabiner is often without any diversions. His parents, who visit six days a week, fear that he will feel isolated and have asked the nurses to put him out by their station so he can get more daily stimulation. To help make him feel young, the Stabiners bought him an array of T-shirts with smart-alecky sayings that make their son laugh.

Despite the doting of the nurses, there is no question that the parents feel something has been lost.

“When we found out Sam was aging out, we were devastated,” said his mother, Leslie Stabiner, 66. “It was very depressing to realize that in a city like New York there are just no facilities.”

And it was not just her son who missed the company. Mrs. Stabiner said she and her husband had developed friendships with other parents at St. Mary’s, some of whom are now facing a similar problem.

For instance, one of the children from their son’s floor at St. Mary’s, Justin, just moved into Isabella’s on the floor above his after the Stabiners told them about their experience.

Mark J. Kator, the chief executive officer of Isabella’s, said that having only one or two people as young as Mr. Stabiner in the 700-bed institution created obvious difficulties.

“It presents challenges in that we are responsible for creating an environment that is good for the patient,” he said. But despite their best efforts, he said, “we are not going to create a milieu that is best for them.”

The situation has propelled the administration at St. Mary’s to begin an aggressive effort to establish a clinical model for new institutions equipped to handle medically fragile children as they age out of existing programs.

“It’s something totally new, so part of it is just educating people about the situation,” Dr. Simpser said. “We may also need to push for specific legislation.”

He said that St. Mary’s officials were exploring the idea of establishing small institutions in homelike settings — with perhaps as few as six young adults — where there would be one or two health professionals on duty at all times.

But Dr. Simpser said that if his institution did not push patients out after they turned 18, it could no longer accept new patients.

“It is a terrible dilemma,” he said.

Bobbie B. Fairfax or Margaret Rost School Information

2008-05-10T10:43:00.000-07:00

AICARDI SYNDROME

2008-05-02T17:39:00.000-07:00

Here's are two linka for information & research for Aicardi Syndrome site:

http://www.ninds.nih.gov/disorders/aicardi/aicardi.htm
http://www.aicardisyndrome.org/index.php?pname=whatis

The More Things Change: Part One

2008-05-01T20:11:00.000-07:00

One of the my child's advocates early on suggested reading a book called, "The Child That Never Grew" by Pearl Buck. What I found interesting about Pearl Buck's journey is how our attitude toward disability in general hasn't changed all that much. The way we treated "disability" back in Pearl's day was to send our children off to a public or private institution where they were cut off from society. They were never seen again.

Although we see our children out and about, many still exist on the margins because instead of "warehousing" their bodies in institutions, we are "warehousing" their needs in public schools burying them under paperwork created from the legislation that was put there to protect them. We are warehousing their "needs" instead of building on their ability.

Many children with atypical needs today are being "warehoused" in public schools where they are "rolled" in and out of classrooms at what is considered "appropriate" and "inappropriate" times and then used as instrument to be measured once or three times a week because of what is written their Individualized Education Plan or IEP. They are children first, not instruments to be measured.

"No Child Left Behind" legislation stole away from my daughter her right to a free public education guaranteed by The Individuals with Disabilities Education Act or IDEA laws established in 1974 by enforcing curriculum guidelines into her IEP among other things which is illegal. It also serves as the future "green light" for her to be pulled in and out of a typical classroom at someone else's will. It is this IDEA 1974 law that safeguards her rights to receive an appropriate education based on her atypical needs and "No Child Left Behind" legislation that takes this right away from her.

The Frederick A. Breyer School was a school that served kids in the community with atypical needs through their atypical classrooms; it was a school where children were allowed to be children first, not instruments to be measured. It was a school that offered therapies for children with severe disabilities to develop independent life-skills according to each child's need which takes time, patience, and focus. It has been closed by the HC/dd formally known as MR/dd Superintendent and Board and these services will be lost forever to children in our community.

When I read from e-mail transmission from a tax levy review committee member that it was HC/dd who suggested (i) closing one of three adult education centers and (ii) shifting some of the MR/dd-provided services to children onto the respective school districts; and when I became personally involved in the carnival of politics and associated business that determined where my child goes to school, how her classroom should look, and what therapies she should receive, it is at most a very sad commentary of corrupted and failed local, state, and federal government.

The Cincinnati Enquirer, Cincinnati Post, Cincinnati WCPO-TV and other television news stations refused to investigate what qualifications"Maximus," the Columbus, Ohio company, hired by the Hamilton County Tax Levy Review Committee, had to determine how special education classrooms for severely disabled children should look like and how services should be rendered to children with severe disabilities.

Furthermore, the Cincinnati media did a terrible disservice to all our children with disabilities by failing to report to the public exactly who was responsible for closing the school or asking why MR/dd administration denied this information to their clients and Hamilton County property owners by hiding it as "continuing children services" on compaign cards until after the Mental Retardation tax levy was passed and why the teacher were told not to tell the parents. Why in April in 2005, there was still discussion with PTA personnel atBreyer about options still being considered and waiting until 2 weeks before summer vacation to notify parents the school was closing.

MR/dd refused to consider the available "financial" alternatives and solutions to keeping the school open and told the commissioners that closing the school was only a matter of "inconvenience" to a few families. The media fell short of investigative reporting by refusing to look at the attempted HC/dd school closing in 1997 and why suddenly it was okay to close one in 2006 based on "declining" attendance -- a manipulation in its worse form due to the fact that from 1997 until 2004 parents like me were told by CPS teachers that the therapeutic services offered through HC/dd schools were not available because "they were working to capacity."

No statistics were gathered as to why so many children with serious disabilities and developmental delays are "homeschooled" or why so many parents do not know about HC/dd services. An even sadder commentary is how some of our children remain only a footnote in history when their freedoms are taken away while others are allowed to make history with their freedoms that are bought and sold for them. When a government places the needs of its own children into "stipulations" then it is no longer a government for the people.

Inclusion Solutions

2008-04-15T06:19:00.000-07:00

Here's a website for families and friend looking for ideas about inclusion concerns:

http://www.inclusionsolutions.com/

ASSISTIVE TECHNOLOGY: CREATING POSSIBILITIES

2008-04-11T11:26:00.000-07:00

April 30, 2008
Assistive Technology: Creating Possibilities

Register by calling Kari Edwards
513-803-0052/800-344-2462
Child care will be provided by trained professionals and there is no cost

Big Momma's Breakfast of Champions

2008-04-11T05:09:00.000-07:00

By looking at Sarai Jackson, one would never guess her nickname in the neighborhood was "Big Mama." She was a petite, frail, and distinguished looking woman even at 88 years old. Or was she 94 or 101? No one ever knew. I didn't know about her nickname until I read it in her obituary.

She died 5 years ago on this day.

Each Saturday at 4 p.m., Mrs. Jackson left her home for about two hours or so dressed like she had just stepped off the pages of Town & Country from the early 60s. Wearing gloves, hat, purse and shoes in coordinating colors to a trim A-line double breasted, soft pastel cashmire coat, I wondered when I first moved into the neighorhood, "is she going to a country club for dinner?"

It was 20 years ago I met her personally while taking my daughter out for a stroller ride conveniently coordinating the time to coincide with her "steppin out" time one Saturday. I waved a "hello" and said a few words admiring her hat, gloves, heels, and coat. She waved back. Smiling. Never saying a word.

During the week, I saw she was out sitting in her screened porch so I stopped over to say "hello" and this time I was "invited" to come up and chat. We had many conversations over the years when she was up to it. I always started with "did you see that article about....?" and she would answer with a soft "mmm, mmm, mmm." Then, she would let go with a deep sigh and a short sermon on the stoop about what life was like when she was growing up.

One day while visiting we saw a patrol car drive by. There was some trouble in the neighborhood with the boys who lived at the house on the corner. Mrs. Jackson referred to them as "hoodlums" and "no good." I mentioned the one time I had a run in with one of the boy's friends who insisted on blaring his "boom-boom" music in the wee hours of the morning parked in front of our house.

"Mmmm, mmm, mmm. No good those boys. Up to no good. Trouble. Those boys should be in bed. It's a school night. What's wrong with that mother," she would ask, not expecting an answer from me.

I mentioned something about how hard it must be for a single parent mother working the 3rd shift, trying to pay her mortgage, insurance, and raising children without any support or back up.

Mrs. Jackson went quiet. Very quiet. Did I jumped protocol and speak out of turn? Did I offend her?

Then finally she let out a "no excuse for that. No excuse for that at all. Those boys are bad because the mother has her priorities all wrong. I raised 8 children and had a full time job. My kid's were not running around the neighborhood like hoodlums. Like the way the kids are running around today. No excuse for this generation of hoodlums. No excuse at all."

Then she went on about what it was like working in the late 50s and early 60s getting up early in the morning making breakfast and lunches for her kids and catching the bus by 8:30 to go downtown to get to her job by 9:00 a.m.

"I had breakfast for my children at the table every morning."

I don't remember Mrs. Jackson's exact words for her sermon that day but she said it was the least a mother or father could do for their child; to provide a good breakfast. To sit down together in the morning when they are very young to establish a good pattern for social development. Young enough to sit at a high chair or table because if they have table time in the morning, they'll have a good disposition throughout the rest of their life. Children need to feel that somebody is in control and that somebody is caring for them.

In so many words, Mrs. Jackson said if children can't trust their own parent to give them the basic neccessities of feeling secure, wanted, and loved, then how can we expect them to ever trust other people?

Ever since that day with Mrs. Jackson, my children have never ever gone a day without sitting down for breakfast, lunch, and dinner.

New Rules for IDEA Meeting

2008-03-14T18:02:00.000-07:00

Ohio's New Rules For Special Education Services- IDEA 2004
Date: March 25, 2008
Time: 7:00 pm to 8:15 pm
Location: The First Baptist Church of Mason
Sponsor: C.H.A.D.D.
Related Diagnosis / Condition: Attention Deficit Disorder
How to Register: 513-459-6080 Fee: $3.00 for non-members and free for C.H.A.D.D. members

SECURING YOUR DREAMS

2008-03-14T17:53:00.000-07:00

Securing Your Dreams: Legal and Financial Strategies for Special Needs

Date: April 5, 2008
Time: 10:00 am to 3:00 pm
Location: Drake Center, Level A,
151 E. Galbraith Rd. Sponsor: Arc-Hamilton CountyRelated Diagnosis / Condition: AllHow to Register: Arc-Hamilton County, 513-821-2113, ext. 113Fee: $15 (includes lunch)

CP Education Series: Assistive Technology
Date: April 30, 2008
Time: 5:30 pm to 8:00 pm
Location: Cincinnati Children's, Loc. E, 4th Fl., Rm. 353
Sponsor: Cincinnati Children's and UCP's Perlman CenterRelated Diagnosis / Condition: Cerebral Palsy

How to Register: Kari Edwards, kari.edwards@cchmc.org, 513-803-0052 / 800-344-2462 by April 16Fee: None

The Light at the end of the Tunnel ...

2008-03-14T17:21:00.000-07:00

"I love my work, I love this state and I'm confident this will all work out," the state schools superintendent told The Plain Dealer Friday. "I'm not going to stop until Ohio is seen as the best state in the United States in terms of offering a world-class education." - Susan Zelman,

I've had personal conversations with Susan Zelman and I can honestly say that she is so far removed from reality when it comes to understanding the needs of children living in Ohio school systems, mainstreaming, and proficiency testing, I would go as far as saying that this system she created was ingenius at capturing how children do on test but it does not fully measure the direct application of this newly found knowledge which is keystone to learning processes.

My children, for example, score in advance levels of the proficiency tests, but do poorly explaining how they arrived at the answers outside of showing me how they figured out how to answer the question from all the practice tests.

For our children who are excluded from a individualized education based on their ability, for our children who are mainsteamed but not included, and for the ones who are given alternative assessments, it's a political white wash.

Here's the report from Cincinnati's Enquirer:

Strickland rips schools chief
Governor wants control of state education department
BY BEN FISCHER

Gov. Ted Strickland slammed Ohio's top education official Thursday, saying the independently appointed state superintendent lacks the vision to take the next step in school reform.

His unsolicited, strongly worded criticism of Susan Tave Zelman came a month after he proposed taking control of the state Education Department, a move that would relegate her to an advisory role.

Until Thursday, the governor had not publicly assessed her abilities.

"I like Susan Zelman, she's a nice person," Strickland, a Democrat, said during a meeting with The Enquirer's editorial board. "But she's not a leader, she's not an advocate, she's not a good manager.

"She's an academician, a psychometrician, a statistician. But she's not an Eric Fingerhut, a visionary leader."

Fingerhut, a former state senator, is Strickland's hand-picked higher education czar after his successful takeover of the state's network of universities and colleges last year.

Strickland continued on Zelman: "She's a very bright person who contributes a lot to education, but she's not carrying out that vision," the first-term governor said.

Zelman was traveling Thursday and unavailable to respond, Education Department spokeswoman Karla Carruthers said. Her supporters, initially stunned by Strickland's comments, rose to her defense.

Jennifer Sheets, the Republican-appointed president of the Ohio Board of Education, said Zelman's record as superintendent is outstanding. She called Strickland's comparison to Fingerhut "ridiculous."

"I certainly have to disagree with him entirely on this issue," Sheets said. "He is absolutely mistaken if he thinks Dr. Zelman is not a leader."

In his State of the State address Feb. 9, Strickland proposed creating a cabinet-level director of education who would report directly to him. This would effectively neuter, but not eliminate, Zelman's position and the state school board, which has 11 elected members and eight members appointed by governors.

Since then, Strickland has defended his proposal as a way to bring more accountability to the state's educational bureaucracy. In making his case, he had previously focused on what he called the unwieldy and splintered educational system, not the individuals currently serving.
Thursday, he radically changed course.

"I want to find someone who can serve elementary and secondary education like Eric Fingerhut serves higher education," Strickland said.

Strickland has also promised to present a major education funding overhaul proposal next year, and he said Thursday that he can't do so credibly if he doesn't have a closer tie to the department.

State Sen. Joy Padgett, R-Coshocton, said it was unfair for Strickland to compare Zelman, a veteran of the system, to Fingerhut, who only has one year under his belt running a very different higher education system.

"I have a very high opinion of both of them," said Padgett, chairwoman of the Senate education committee.

Zelman has overseen Ohio's rise from the middle of the pack to seventh among the states in Education Week magazine's Quality Counts reports, Sheets said. The superintendent also commissioned a study last year that compared Ohio to international educational standards for the first time, with some findings Strickland himself has embraced, she said.

She said the governor's comments are only his next step in ginning up support for his takeover plan after his initial attempts at persuasion yielded little support.

"It's totally unfair for him to make unfounded personal attacks in an effort just to support this desire to change the educational governance system," Sheets said.

Strickland said his plan already has significant legislative support.

A spokeswoman for state House Speaker Jon Husted, R-Kettering, declined comment.

State school board member Sam Schloemer, of Wyoming, said he suspected that Strickland's motive from the beginning was to oust Zelman. If that's true, he'll have an opportunity to do that at the end of the year, when as many as 11 seats on the 19-member board could turn over. Strickland will get to directly appoint four.

"If he wants a change in the superintendent, and he wants to discuss those things with the board, then I'm quite sure the board would be open to that," Schloemer said.

Sue Taylor, president of the Ohio Federation of Teachers, the state's second-largest teachers' union, would not say whether she agreed with Strickland's comments, only acknowledging that Fingerhut and Zelman have different styles and skills.

The union has expressed tentative support for Strickland's takeover plan.

"Perhaps he feels the need to educate the public on his assessment of the situation," she

CP Education Classes for IEP

2008-02-19T16:55:00.000-08:00

at Children's Hospital Medical Center
Location E
4th Floor
5:30 to 6 p.m.
Pizza and social
6-8 p.m.

Wednesday
March 5, 2008
Your Child's IEP

April 30, 2008
Assistive Technology: Creating Possibilities

Register by calling Kari Edwards
513-803-0052/800-344-2462
Child care will be provided by trained professionals and there is no cost

Editorial from Cleveland Plain Dealer

2008-02-16T18:26:00.000-08:00

Editorial: Changes atop Ohio's K-12 education bureaucracy probably wouldn't hurt
Friday, February 15, 2008

Posted by the editors at blog.cleveland.com/ post_riposte/ on 02/11/2008 at 5:15 p.m.

Gov. Ted Strickland didn't put it this bluntly in his State of the State speech, but it's clear he wants to junk the State Board of Education and the state superintendent.

That's fine with us - with a few caveats.

Strickland's plan would turn state Superintendent Susan Tave Zelman and the board into advisers. A K-12 education czar would report directly to Strickland, in an arrangement similar to the job held by Eric Fingerhut, chancellor of higher education.

Under the governor's proposal, decisions to reform K-12 education would ultimately be his responsibility - and everybody would know it.

Zelman isn't eager to take a back seat to a new Cabinet member. And her annual salary of $217,000 seems a little pricey for an adviser. If the legislature goes along with Strickland's plan, Zelman's position should be eliminated.

As for the state board, half the members already are appointed by the governor, and even the ones elected by the voters are just about anonymous.

Their lack of accountability has been evident from the board's stumbling on several key educational issues. Members have been slow, for instance, to make the Department of Education divulge information about teachers who abuse youngsters - something that is of great concern, especially to parents.

But if all of Ohio's education decisions were left to this governor, parents might find they have new concerns.

In an effort to appease supporters in organized labor, Strickland has adopted inflexible and wrongheaded positions on charter schools and school vouchers. He wants a moratorium on new charters, a ban on for-profit charters and restrictions established so the school voucher program cannot spread beyond Cleveland.

The governor's ideas in the area of school choice are nothing short of awful. Choice is a concept that has been far from perfect in its implementation, but families deserve educational options. Strickland and his aides should shut down charter schools that fail, but they should reward the ones that succeed.

Strickland could change the administrative structure of education in Ohio without doing any damage. But the General Assembly would have to keep a close watch on how such changes affect education policy and use its powers to ensure that parents, children and taxpayers are well served.

Cleveland Plain Dealer's Version of Zelman vs. Strickland Battle for Ohio Education

2008-02-08T18:19:00.000-08:00

Zelman, state superintendent, disagrees with Strickland's proposed shake-up
Schools boss, Strickland disagree

Saturday, February 09, 2008
Scott StephensPlain Dealer Reporter

An upbeat Susan Tave Zelman shrugged off an apparent no- confidence vote from the governor and vowed to continue mov ing the state's 1.8 million-student public school system forward.

"I love my work, I love this state and I'm confident this will all work out," the state schools superintendent told The Plain Dealer Friday. "I'm not going to stop until Ohio is seen as the best state in the United States in terms of offering a world-class education."

Zelman's remarks were her first public comments since Gov. Ted Strickland, in his State of the State speech Wednesday, called for creation of a Cabinet- level director of education who would report directly to him. The new position, which would have to be created by the legislature, would relegate Zelman and the 19-member State Board of Education to advisory roles.

In his speech, Strickland acknowledged the state has moved up in national education rankings, but said the public schools system could not be run by an "unwieldy department with splintered accountability."

The announcement, and its timing, surprised some. Zelman said she was on her way to a social event late Tuesday evening when she was summoned to the governor's office. She said an aide showed her portions of Strickland's address.

"I was very surprised," she said, adding that she and the governor have not spoken since his Wednesday speech.

The bombshell also surprised State Board of Education President Jennifer Sheets.
"I have had a fairly good professional and personal relationship with the governor, who was my congressman," said Sheets, of Pomeroy. "I'm disappointed he didn't see a need to contact me ahead of time."

Zelman, who begins her 10th year as the state's superintendent of schools March 8, said she sharply disagreed with the governor's proposal, but did not take it as a personal rebuke.

"I understand politics," she said.

Children's Hospital Advocacy & Resources Page

2008-01-30T18:06:00.000-08:00

Can't think of going one week without using this link to look something up ...

http://www.cincinnatichildrens.org/svc/alpha/c/special-needs/resources/advocacy.htm

Advocacy through HC/dd in Cincinnati

2008-01-30T18:00:00.000-08:00

Hamilton County Developmental Disabilities Services formally known as MR/dd Services:

http://www.hamiltonmrdd.org/

Memorial Inc.

2008-01-30T17:55:00.000-08:00

The staff and volunteers have always been a great help for me when my child was very young and just beginning her education journey:

Mission Statement

The mission of Memorial, Inc. is to improve the quality of life for underserved individuals and families residing in and around Mt. Auburn, Over-The-Rhine and Corryville, through educatiional programs, group activities and support services that enable them to become self-sufficient citizens of their community.

Memorial Inc.
3000 Vernon Place
Cincinnati, OH 45219
(513) 621-3032
Fax:
(513) 559-0300

Website:
http://www.memorialinc.com/

Interest Area:

Children & Youth, Community, Education & Literacy
You may choose to: Make a Donation

Hamilton County ARC

2008-01-30T17:39:00.000-08:00

Here's the link for Hamilton County ARC ...http://www.archamilton.org/ for help with advocacy.

Cincinnati Agenda 360

2008-01-26T11:47:00.000-08:00

A civic engagement meeting ...

Greater Cincinnati is at an important crossroads. Our region is endowed with exceptional resources, yet there is no clear cut comprehensive picture for using them to achieve continued social progress, economic prosperity, and community building.

Please come to this meeting to make your voice be heard ...

When: January 31, 2008
Where: Hamilton County BMR/DD Support Center at 1520 Madison Road
Who: Individuals, parents/family members, providers and staff

Register with John Romer at 559-6720 or write John.romer@hamilton-co.org

While You Were Way

2008-01-21T09:19:00.000-08:00

Dear Dr. King,

Just last year, my sister came home wondering why everyone laughed at her when she asked, "Am I African-American?"

I don't understand, either, why the teacher also thought it was funny so much that she did a "all right class, let's show Lily what African American means" by asking the students to stand up if they were "African American."

The teacher thought her question was so funny, she made a point to call my Mom about it later that night. She was surprised she would say something so absurd in a classroom. To think, to ask a question in a classroom seemed out of sorts to this woman.

"Generally she's cooperative and helpful in the classroom," I heard her say as my Mom put the speaker phone on followed by a "I didn't know Lily was such a crack up."

My mom said to me quietly cupping her hand over the receiver that she could smell the teacher's peppermint breath.

My mom asked "Well ...what do you mean?" pretending not to know anything, offering the teacher her a chance for final redemption.

"Oh.... it was the funniest thing really ..." she went on ending with "she's such a sweet and cooperative kid, I was just so surprised that she would ask a question like that. Surely she's made that connection."

I don't remember exactly where the conversation went after that but it wasn't too long before my mother said, "nice talking to you and good bye." But can you imagine, Dr. King?

Can you image a child asking a question in a classroom? A question "like that?" What does it mean?

Is it so hard for a teacher to imagine a child growing up in world not knowing about prejudice or labels? A teacher who cannot imagine a child growing up in a world who doesn't see black or white? A teacher who cannot imagine a curious child exploring a world without experiencing physical barriers?

Who teacher who cannot imagine a world that embraces each other's differences instead of valuing only what we share in common?

Your's truly,

Elisabeth

CONTACTING ELISABETH'S MOM ...

2007-11-27T11:21:00.000-08:00

HELLO,

PLEASE FEEL FREE TO USE THE EMAIL ADDRESS LINK ON THIS SITE TO CONTACT ME; HOWEVER, I CANNOT RESPOND UNLESS I KNOW YOU'RE A REAL PERSON.

SO PLEASE INCLUDE IN THE SUBJECT BOX SOMETHING MORE THAN "NEED HELP." TRY TO BE SPECIFIC:

"NOT SURE NAME OF SCHOOL IS FOLLOWING THROUGH ON IEP"

"QUESTION ABOUT ASD METHODOLOGIES FOR IEP"

"SCHOOLS IN SW OHIO WITH GOOD TRACK RECORD"

"LOOKING FOR INTERVENTION GROUPS IN COLERAIN"

THANKS,

ELISABETH'S MOM