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?