Before you consider IEP (Individualized Education Plan)

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!"

For Pegi

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 tha allows 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? I'ts been over  16 years! I thought I was through wrestling with that demon.  I was angry. Very angry.

Driving home, gripping the steering wheel, I found myself (once again) searching very far, far into reaches of the dark universe where that  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 appropriate public school education.

Then this old song "Comes A Time" plays on the radio. WNKU. It's a song I never payed much attention to until I realized the author was possibly drawing  from his own family experiences bringing a child with special needs into the world.  He's been there, done that, or so he's singing about it.   It's a simple melody filling up 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

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

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!

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. 

Now when it's bed time,  she resists! So back she goes in the swing for about a half hour or the potty and we hope she falls asleep.


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

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?

More Special Olympics Fun!

Elisabeth Bowls 65!

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!

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? (When did children become their disability label.

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

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?

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 an environment with 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

Promoting Rights of Children with Disability Labels

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

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."

Homework Assignment: IEP (Individual Education Plans) in Ohio

"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 ...

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

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

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

Move the article here:


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