Putting Our Mouth Where the Money Is ...

Many of our families cannot afford legal assistance to challenge the school districts on least restricted environment and implementation of our IEPS, for example, like this family did:

http://www.nytimes.com/2007/10/27/education/27specialed.html?ex=1351224000&en=b83ce67e65e3eff9&ei=5124&partner=permalink&exprod=permalink

HC/dd or MR/dd Schools in Hamilton Country are Still Open

Many parents are writing asking about the HC/dd formally known as MR/dd operated Bobbie B. Fairfax (513) 271-2313) and Margaret Rost (574-2372) schools serving children with disabilities in Hamilton County, Ohio.

Apparently, these special education-integrated therapy schools are no longer listed on HC/dd resource site. What is there instead is "children services intake."

Parents can access these schools through their school district representative through "continuum of alternative services" if parents and advocates can prove that the district school cannot meet the needs of a child with disabilities.


Please make sure that the IEP is specific to the child's needs including the "environment" in which the IEP's are conducted. If the environment is nothing more than a hallway or crowded classroom with children with varying learning disorders, disabilities, and delays, then parents can ask for HC/dd school where the schools are designed specifically to meet our children's needs. A school where our children are included throughout the course of the day and not rolled in and our of a classroom at whim. A place where a child's special education is clearly integrated through ongoing therapeutic-guided experiences.

If you are not satisfied with what your son or daughter is receiving at his or her district school, please contact me at elisabethssite@yahoo.com. I can help you.

Lucy! Lucy! Lucy!

Here's a photo of Elisabeths studying where jelly comes from ... the same place as wine, salad dressing, etc ...

Peace Concert at the Devou Park

Social Security

I've been getting questions about Social Security lately. It appears a lot of families are experiencing road blocks here, too. I'm sorry that Google could not recover my articles on this. I was lucky to get my URL back.

So, when the kids are back in school, I start looking for those articles from families who have experience with it. I know two families who had to bring their son and daughter to "demonstrate" need after they were rejected.

In the meantime, continue to search through Wrights Law or visit http://www.ssa.gov/pubs/10024.html for more information.

CP EDUCATION SERIES FOR PARENTS OF CHILDREN W/CP

at Children's Hospital Medical Center
Locatioon E
4th Floor

5:30 to 6 p.m. Pizza and social
6-8 p.m. Presentation begins


September 26, 2007 Money Matters Overview of Funding and Resources
Nov. 7, 2007, Teens and Transisition
Mar. 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.

When Dreams Come True ...

Dedicated to Stephanie Ramos who died at the age of 8 and Danieal Kelly who died at 14 ...

I write these events down because I want to remember every detail. These events are part of my daughter's history. How she came to be in my life. Even though I will never know what her dreams may be , I want her to know that she was a part of my dreams every step of the way. - Elisabeth's Mom

When I was 10, I remembered seeing a young man with a long pony tail, contorted face, and a slim stiff body just barely fitting into a wheelchair waiting in line next to me at an amusement park. It appeared to me he was saying something with an "f" in it while people kept cutting in front of him. I could see what was happening because I was at his wheel chair height.

"I think this guy is in line," I said quietly wondering if I was only guessing or if he was having a medical problem. "Are you okay?" I asked him directly. He flailed even harder. How could all these people in line be wrong and an 10 year old be right, I asked myself after he rolled out of sight.

At the department store I was working while in college, I shared an elevator with a distinguished elderly couple who was pushing their daughter in wheelchair. The daughter looked to be my age. She was wearing pearls, a cashmere cardigan, kilt, and her silky blonde bangs were held in place perfectly with a barrette in sharp contrast to my unkempt permed hair, faded jeans, and plaid-patch-worked shirt.

I asked the young woman, "Is it hard getting dressed in the wheelchair?" realizing afterward how stupid this sounded. Her parents responded with an encouraging smile  giving me the green light to enter into their daughter's space on my own without their help.

I saw her several times afterward each Friday around lunch time. I brought with me a cosmetic counter sample to give to her. The last time I saw her, she was wearing a pair of jeans, permed hair, and plaid- patchwork shirt, and I was wearing cashmere and pearls.

My husband and I bought our first home next to a group home. There were 4 men under the care of health care workers coming and going. They spent most of the time on their deck in back where I could see them sitting, rocking, or pacing, from my kitchen windows. I never put curtains on these windows. My husband built a playhouse for my first born in one of the many trees we shared with our group home neighbors and my daughter soon became friends with them.

At work during a program I was assisting in, I asked a little girl in a wheelchair with tubes running everywhere, if I could take her hand so she could feel the roughness of the limestone and trace the bump of fossilized sea creature from 600,000 million years ago. Somebody in her group said, "she doesn't understand what you're saying" but I took her hand anyway. I saw her eyes tracking my movement.

I remember having the "what if" feeling while my daughter grew inside my body. She wasn't kicking or moving like my first baby. I remember in a quiet moment of prayer and meditation, blurting out "okay, if its going to happen, let it happen," and afterward choosing the name Elisabeth because she was trying to send me a message.

Within the pantheon of Catholic Saints, I picked St. Elisabeth's name because she had connections. She would watch over my child because everyone else up there appeared to be busy watching over other children. The children in Africa, the children in China, the children in America.

When we found out 4 months into the pregnancy that a peanut-size cyst was developing in part of the brain and it would have to be monitored, I asked God for strength and guidance. When the doctors at 6 months saw dilated ventricles, a loosely wrapped bundles of nerves, I started telling my family about the news. Most of them were saying I was being pessimistic and that she would be "okay" but I wasn't asking for their opinion. I was just relaying the information.

Whatever those triggers are that prepare a baby to come out never happened. She was born blue, long fingernails, no reflex. Not even sucking. By the time she was three month, it was confirmed. She was missing her corpus callosum and the folds in her brain were not normal. She was legally blind. She would be severely "mentally retarded."

I joined a parent nurturing infant group to learn the tricks of the trade. I already knew how environment, learning, and human development worked together so it was a cakewalk here. Resonance boards, light shows, beads, massage, patterning, brushing, and toys. She didn't sleep for 3 years. She took naps on and off. Finally, a retired pediatrician who recognized the effects of sleep deprivation on me suggested I get hydro-chloride to help her develop a sleep pattern. It worked. By the time she was 4, she was sleeping through the night on her own. Just in time for her little sister's arrival into the world.

When she was 18 months, I switched daycare because the one I had chosen could not handle her anymore even though they were on the "list." I found a daycare that offered outpatient services so she could receive PT, OT, and Speech on site. So instead of driving around throughout the day, going back and forth to work, I drove one and half hours twice a day. Life was getting easy.

I found 3 strong advocates who helped me identify her strengths and abilities and develop an early education plan for her before I met with anyone at the school. When she was school age ready, I visited classrooms and talked with teachers to see how they could develop her strengths and abilities. I found the perfect school where she would be valued for her strengths and abilities by her peers and teachers. In all honesty, I have not been able to define exactly what her disability is. That I imagine will be determined by others.

I write these events down because I want to remember every detail. These events are part of my daughter's history. How she came to be in my life. Even though I will never know what her dreams may be, I want her to know that she was a part of my dreams every step of the way.

She was wanted and she would be welcomed in our world like all our children should be.

Terry Gross's Interview with Pegi Young ...

http://www.npr.org/templates/story/story.php?storyId=12445969&ft=1&f=13

About 15 minutes into the interview, she discusses the Bridge School and some of the methodologies, ATs, and her experiences when her son transistioned into high school from the Bridge School.

http://www.bridgeschool.org/

The device she refers to in the interview was showcased at the Assistive Technologies meeting recently and if everything goes as planned in Ohio these devices will be available at many of the district schools. As Kristin discussed in this meeting, it is the responsibility of the school to provide these devices.

http://www.dynavoxtech.com/products/

Elisabeth currently uses a talk tech with pictures and voice recording. We received one through the help of the local Elk's Lodge. The Elk's are working on making a donation to CHMC resources & library because the waiting list to train on one took a while. I think right now they only own one.

Let me hear from you about other communication devices that have helped your son or daughter develop in their area of need. And don't forgot about our friend Buckeye Bill up in Columbus....

Here are other links:
http://www.cerebral.org/augcomm.html

Please make sure you fill out the subject box if you have questions in regard to the topic here or elsewhere on this blog otherwise I will not open it.

Pegi Young - Sometimes

See what I mean ... that tempo ... it's slow ... calming ...

Pegi Young's Lullaby ...

I just listened to Pegi Young's album, you know that woman who started the Bridge School in the Bay Area?

Her songs remind me of those quiet-hush lullabies for mothers and fathers who need to be assured that everything is going to work out okay for our children. You know? When we're whirling around in that void and nobody is talking or giving you information or any idea about what to expect when you hear the news that your child is not going to follow a typical developmental pattern.

Pegi has always been the inspiration for so many of us who need to keep moving when we feel like we're stuck or when we feel like nobody is listening and wonder how we're going to get through one more day.

And this Bridge School she started has become more than a school I think. For those of us unable to take advantage of the school itself, the "bridge" she created serves as a reminder about the responsibility we have to all our children in fulfilling their specific needs and the power we have to change the things so they can be included.

It's like she has bridged a value into a society known for not valuing children who develop differently than their biological peers.

Action Alliance for Children

Here's a qebsite with case studies an additional resources about children who succeeded in inclusion environments. Although I can't find any sample IEP's I think it's a good read and filled with really great inclusion ideas...

Why Did the Chicken Cross the Road?

Some of you have noticed a change in tone here on this blog. My anger, frustration, and hang ups don't appear to be the driving force here. Have I changed?

I met a boy a few days ago. His name is Aiden Crane. His father was kind enough to share his story on a blog called the "Useless Tree" and I came away from the experience looking at things a little bit different. For me, connecting with my past to help see the future provides healing. The healing came in the form of the "Tao te Ching" a book that has helped me rediscover myself and how I can be a better mother.

I read this book back in college and had to immerse myself into the history and culture before I could fully grasp it's meaning. I remembered when I first discovered it's origin and the time in which the authors lived. I learned it was written in response to the times in the way all wisdom is born and transferred. A time in history, in all our histories past or present, where people resort to hoodwinking to get things done.

I decided it is overestimated the amount of wisdom that oozes out of a person once they have found themselves the victim of hoodwinking, until we listen to a comedian. The story of Lao Tzu, for example, when Gongfutzi comes calling, is really very funny. You see, Gongfutzi travels a long distance to learn the meaning of life and the way from Lao Tzu, an old sage and presumed to be an author of the "Tao te Ching." Lao Tzu is crabby and irritated by this request.

Lao Tzu tells Gongfutzi something like by the time you find the answer, you'll be dead, so don't worry yourself. I think this is when Kongfuzi changed directions in his life because he couldn't accept this as an answer. There had to be more for him to life, a special path, and as a result he transformed into the person known today as Confucius.

I'm not implying to have any wisdom here on this blog. But it was the connection I made to the "Tao te Ching" and to Aiden that helped me see a new beginning and the value of my experiences as a mother, negative and positive, without compromizing my integrity or the integrity of others.

NICHCY LINK FOR EXPLANATION OF DISABILITY DEFINITION

Visit the NICHCY website to find out if your child is eligible for special individualized education services.

MR/dd new Appointees & Holding Strickland Responsible

Michael Rench was appointed as DD for the Div. of Community services by John Martin who was appointed as the new Director of ODMR/dd by Governor Ted Strickland. We need to write Gov. Strickland to make sure he does not close any more MR/dd facilities otherwise he will not be elected into a second term by family and friends of people who will be affected by the decisions his appointees make:

Office of Governor-Elect Strickland
77 South High Street
Riffe Center, Suite 1948
Columbus, Ohio 43215(614) 728-4900

What he needs to know is that the closing of MR/dd facilities, forced mainstreaming, and the creation of new satellites makes no sense because of the following:

1) MR/dd was closed because of decline in attendance but suddenly there is an increase of new satellites opening where the cost is being duplicated many times than what it cost to keep a MR/dd therapy center open.

2) Kids are still being excluded from their peers at their disctrict school; they are included at MR/dd schools

3) Kids were removed from MR/dd therapies throughout Ohio without notification and due process; parents can prove now that services are not even close to what the kids were getting in the form of integrated therapies at MR/dd.

4) Many parents are not aware that they are paying for a tax levy for which their child cannot benefit. For example, property owners are paying for MR/dd through their property taxes for services that are being charged to their schools. Many schools cannot afford these charges so many of the children were sent back to their district school even though their parents are probably paying for MR/dd; MR/dd creates "traveling therapy" within the district calling this "service" but it does not replace what was taken away from the kids.

5) Parents in Cincinnati were not told they have an option to attend a MR/dd therapy school and as a result their children's individualized education rights are being violated. Parents aren't even told what they are entitled by law by any of the school districts in the form of AT; parents have to get this information from a lawyer.

Assistive Technology

It was a pretty good meeting. Most parents in attendance were not aware that Assistive Technologies are the responsibility of the school and should be identified before the IEP is written. What was pretty clear after this meeting is that most parents are still clueless about what schools are responsible for when planning individualized special education opportunities for their child.

If it is a medical condition that prevents your son or daughter from participating in the classroom, then the school MUST provide assistive technologies so your child can fully partipate in the classroom and not be dumped in special education room where they get babysitting services.

There is a real abuse going on in writing IEPs/504s and parents have to stay alert if they want their child to have the specialized individualized education to which they are entitled by law.

Contact Sue Schindler at 821-2113 at Hamilton Co. Arc if you have any questions about getting the information from this meeting. One mother in attendance was telling us that her son is being denied a Velcro ASL from her district school. This school is in violation of this child's civil rights.

If you have specific questions about your 'child's legal rights, contact the Office for Civil Rights, UDE, 600 Superior Avenue East, Suite 750, Cleveland, OH 44114. Telephone 216-522-4970.

Also contact KHildebrant@olrs.state.oh.us if you need any of the information from this meeting. Please put in the subject box: Drake Conference AT Meeting otherwise she will not repond.

ASSISTIVE TECHNOLOGY: WHAT ARE THE RESPONSIBILITIES OF THE SCHOOLS DISTRICTS AND FAMILIES

FIND OUT EXACTLY WHAT THE RESPONSIBILITIES OF THE SCHOOL DISTRICTS AND FAMILIES. KRISTIN HILDEBRANT OF OHIO LEGAL AID WILL BE AVAILABLE...

CONTACT HAMILTON COUNTY ARC -- SUE SCHINDLER AT 821-2113 EX. 112
TO ATTEND THIS INFORMATION SHARING MEETING
AT DRAKE CONFERENCE CENTER,
THURSDAY, MARCH 15TH AT 7:20

504 VERSES IEP

http://addadhd.suite101.com/article.cfm/iep_versus_504

continuum of alternative services

Here's an explanation as it relates to the federal law:

http://specialed.principals.org/discidea/searchregs/300subpartE/Esec300.551.htm and also look at http:///nichcy.org/idealist.htm

If you find the IEP to be ineffective and your child is not benefitting from being at school or if the school cannot provide the individualised special education according to your son or daughter's individual need, a school/parent can elect to an "continuum of alternative service" even if it's outside of the district. Other parents use it to "homeschool" their child.

If a parent finds a service that can fulfill their son or daughter's specific IEP goals that the school cannot, through "continuum of alternative service" the school must provide this by law.

This is why it is absolutely IMPERATIVE THAT PARENTS & CARE TAKERS GET THEIR DUCKS IN ROW before they walk into the IEP meeting. You must know every inch of your child' spectrum, disorder, medical issue, because the schools do not know. They are not medical experts. They are education experts. They have education and mainstream models. But you might have a child that does not fit into their "model" here and needs something else in the form of an individualized special education.

The issue right now is that schools have been "regulated" at the federal/state level serve all special populations of children so some schools can choose to give you a "drop dead no" even if you or an advocate find an alternative that is the exact match for your son or daughter's needs. Only when a parent can prove that the school is only meeting this regulation on paper, not in the delivery of the IEP, can a child be eligible for alternative services.

Keep in mind, federal and state "regulations" cannot meet every "individual" need so there is wiggle room. Parents have the right to due process. I've read discussions where parents have challenged their school district based on the IDEA federal law set up for these special exceptions, hence the term "individual" and they have had good results.

Some schools do an outstanding job offering mainstreaming opportunities, special education services, least restrictive environments, and fulfilling IEPs, and some do not. I have been in special education environments that met the individual needs of a child while also providing special education opportunities. On the other hand, I have seen (I kid you not) 18 kids sitting in one room with one teacher where half were zoning out doing absolutely nothing.

I had to prove my child would not benefit from the school's definition of "least restrictive environment" and all the other definitions, labels and acronyms they have (I'm trying to be funny here...) in order to secure services elsewhere. I actually learned how to do this from a homeschool book.

I asked the school "you mean I can take my child out of school to be "homeschooled" and you would call it "services" but I can't put him into this special school where he can receive these same "services" as home?"

Hmmmmmm.

In Hamilton Co. Tennessee, a family sued the school because they wanted their son to attend this special program specifically for Autism. The schools said "no way." I think the parents won but it went into appeal... If you visit the FAPEPAGE and Wrightslaw they list the court cases.

STEVE?

THANK YOU STEVE FOR DROPPING BY THE BLOG.

YES, YOU WERE RIGHT ABOUT THE ARTICLE INRE "TRUST, GUARDIANSHIP, POA, AND OTHER STUFF." I MADE THE CORRECTIONS AND NOTIFIED THE MOTHER WHO SUBMITTED THE POST.

AS YOU CAN SEE, WE'VE UPDATED THE INFORMATION HERE AND HOPE THE NEXT TIME YOU DROP BY, YOU CAN GIVE US MORE ADVICE.

KIND REGARDS,
Elisabeth's Really Big Army of Moms, Friends, Advocates.

Compiled by National Dissemination Center for Children w/ Disabilities

Information here relates to the latest authorization of IDEA 2004. In other words, the statute as it was passed by Congress and signed by the President in 2004, and implementing regulations, published August 14., 2006.



VISIT http://nichcy.org/idealist.htm