Wheelchair Vent - Warning! LOOOOONg

[Guest guest]

Here's my situation.

When my son was little he was a runner. He had sparks coming from his

sneakers at every opportunity. He wore me out with his running and it became an

issue due to danger and when he entered pre-school he was always in trouble for

escaping at every opportunity and running. He had no fear. Then in elementary

school, I'm thinking first or second grade began slowing down...and

putting on weight. He began sitting everywhere. I knew it wasn't just because he

was being lazy. He wanted to do things but was unable to without sitting after a

short walk.

I took him to three ortopedists. The first put leather arch supports in his

shoes and that helped with his feet which were developing thick, hard callouses

on the big toe pad. The orthopedist just watched him walk barefoot and shrugged

it off as a Down syndrome thing. The second orthopedist we saw was contacted

without my permission or knowledge by 's physical therapist from school

prior to our appointment. When she found out we were going to him she sent him a

letter with her ideas on what needed to be done. Long story short this p-o'd him

and when we arrived he asked us who referred us to him. We told him our ped

referred us. He said he had gotten a letter from this person and asked who she

was. I told him school pt. He remarked that this wasn't her area of expertise.

Honestly, to this day I'm not sure what that was all about because he never

elaborated anymore. We never knew the pt had done this. He half-heartedly said

he could straighten 's legs through surgery but that he didn't recommend

the surgery. We just left. He wanted to see in another year but we

didn't go back. What was the point?

A few years later I took him to another orthopedist that wise-cracked about how

he must like to eat cookies and such. He said the hips and legs was a Down

syndrome thing and that he would benefit from losing weight and if we needed he

would help us get a wheelchair otherwise he never needed to see him again. OK.

In 5th grade we tried to get a wheelchair paid for through medicaid. 's

pediatrician sent letter after letter and 3 times he was denied. needed

to have a wheelchair for the school trip to DC. The medical equipment place

where we tried to get appproval loaned us a wheelchair for the trip and dad went

on the trip with and it was a trip of memories that they will cherish.

He would not have been able to go on the trip without the wheelchair. We noticed

that 's behavior had improved 100% when he was able to use a wheelchair.

We finally had to purchase one out-of-pocket.

About 4 years ago we went to Cincinnati Children's Ds clinic. We were referred

to an orthopedic surgeon. It was a long wait. Finally we were called back. Doc

seemed confused as to why we were there. We were looking for answers. At one

point she did use the word hip dysplasia in describing 's legs but she

did not use that in the letter she sent back to our pediatrician. I was told

that it happened in utero and there wasn't anything that could have been done

early on. Honestly, I still don't have any answers. I don't know what is going

on with his legs and hips. Anyway Cincy doc gave us prescriptions for aquatic

therapy, yoga, and wheelchair as needed. She wrote that the problem is at the

bone level and cannot be corrected through any sort of therapy, bracing, or

shoe-strapping for biking (as the pt was doing). She also stated that he would

benefit from weight loss but that she understood the difficult position of

trying to implement this, give his lower extremity alignment and Ds. Since we

weren't having surgery she didn't need to see us again. She has since moved to

another hospital in another state.

I took this information to the school at an IEP meeting. I gave them the

originals and didn't get copies. I know...I messed up.

They were having issues with sitting down on them in the road on the

walk to the bus. They would go to the park across from the school for a picnic

and he would sit on them. They would walk to a store above the school and he

would sit on them. When he had to stand in lines such as when getting a picture

took he would sit. Finally, they began using a wheelchair or just letting him

sit. I managed to get through those years.

Now he's in high school.

Last year I signed that he could ride the county car and so then they thought

they could come and go with him anytime. They would send a note that they were

going to lunch at Hacienda and then they would go other places.

Last year I had it out with them over a trip to the mall during Christmas where

they said they would get a wheelchair when they arrivedand that was how they had

been doing things for 15 to 18 years with no problems. You can't just go to the

mall and hope there is a wheelchair, especially during the holiday season. Their

excuses were that they can't take the wheelchair from school because another

student might need it. They can't let another student push him in a wheelchair

(partners would be with him on Christmas trip) and they could not take the

" handicapped bus " because so many students were going on the trip they neede the

bigger bus. Also they could not strap a wheelchair on the bus because it could

come loose and injure someone in case of an accident.

OK now this year. They requested and I gave them copies of the 3 letters of

denial from medicaid when I applied for a wheelchair. They wanted to bill his

medical card for the wheelchair.

They took a trip yesterday to the grocery store and Mc's. I told them he

couldn't go due to not having a wheelchair for him. Well wasn't happy

and made us miserable until I relented to let him go. He only went for lunch but

not grocery shopping so was OK.

I called the director of sped yesterday and left a msg (of course she's not

available) that I was through begging for a wheelchair. I wanted to know what

she was going to do so that I could determine what steps I needed to take. Today

I got a generic letter from the school nurse at the high school. It concerns

medication. I'm to sign a medical release for Cardiac Restrictions/Limitations,

Hx hip displasia. There is another form where I'm to sign giving them access to

's medical information via verbal, written, fax for the purpose of

treatment planning and school plan. Info released would be medication,

physicians orders, recommendations/plan/iep, treatment plan, other restrictions

and limitations.

I don't think so. As I said. I gave them in 2006, the prescription for a

wheelchair as needed from the Cincy surgeon. They should have it on file.

does not take any medication at school so I'm not sure what that is

about. I did not say his need for a wheelchair was due to cardiac restrictions

or limitations. I have given them all they need and I will NOT give them access

to my childs medical records. It's none of their business. I did call the

advocates and am expecting a call back tomorrow. I really don't know what to do.

I can't afford a lawyer. Gonna call ped tomorrow. Just wanting to know what you

guys think.

Barb mom to