Wheelchair and Life skills?

What a day....What a reality check..What a crash of emotions.
Today I went to visit the 3rd preschool on my list. This preK is not close to the home we are buying but it is a completely handicap accesible school and many children with CP attend. The other schools I went to were neighborhood schools, and worth looking at, but not a realistic school for Edwin...simply not accessible for him.
But this school didn't start off with a good impression. The principal didn't rememeber speaking to me, nor did he remember our appointment. He was prety rude about it, acusing me of making a mistake...if it's in my planner I DO NOT mess it up! I am pretty organized like that. Kinda have to be when you have as many appointments as these former 23 weekers have!!!
Anyway, after a bunch of questions that didn't seem necessary, he asked if Edwin would be in life skills or integrated classroom. I was hit hard...we haven't spoken with EI about this. Life skills for a three year old??? I said I would assume integrated. He said,"well is he cognitively normal?" Well, not exactly. He is globally delayed, but is coming along well with new words weekly and more signs coming quickly now. "Does he know his colors?" Ummm....NO!!!!!! Neither does his twin who isn't cognitively delayed. She knows red and blue and that's about it.

Anyway, he took me down to the pre-K.
The life skills preschool consisted of a carpet, some toys, and an aide for each other the three students. There were Rifton chairs stacked up at the back of the room, but were not being used. The 2 children who were not walking, were being held in chairs by their aides, the boy who could walk was walking around on the carpet. This area was separated by bookshelves and other "stuff" to physically distinguish this area from the integrated program. In the integrated classrooom students were in chairs coloring and doing "work", playing in the sandbox, playing with the kitchen, and having fun. It was a stark contrast to the life skills area. The more the principal and I spoke the more he seemd to be insinuating that based on Edwin's CP, mobility issues, and language delay, he might be in life skills. He said, "the kids with physical disabilities and no language usually are in life skills."

I'm sorry, but at 3 years old, how can you tell a child would be best suited for life skills? There may be children where you could make that case, but 3 is so young and there is so much time to learn and develop skills they may not have at 3.
But it got me thinking, given Edwin's physical limitations and his global developmental delay, they might try to put him in life skills! This both broke my heart and got the advocate in me going. I called his EI coordinator and made sure we were on the same page of pushing for integration for Edwin. Thankfully she was. I also called a fellow Sped PAC mom who I knew had pushed for her child not to be put in life skills. She told me many principals want to put students with cognitive delays in life skills because they want their MCAS scores to be as high as possible, and students in life skills don't take MCAS. (MCAS is standardized testing through no Child Left Behind.) Because school are under so much pressure to have high scores, they try to "weed out" the highly involved special needs kids from potentially "bringing down" their school's scores. I was outraged, but can see that happening.
But one thing's for sure...It WON'T happen with my son. He does not need life skills in my opinion. He needs to be challenged and given an enviornment where he can flourish and be with peers in an interactive enviornment. We might have to fight for this, but hopefully everyone on the team will be on the same page.

Tomorrow, we will be seeing the school he is likely to attend, and I am very anxious about this after today's visit.

So I was a little emotional after realizing we might have people try to force him into a program I don't think is appropriate, but things got even more emotionally tough during his PT.

PT brought up getting Edwin a wheelchair. I started to cry. She felt bad. It wasn't anything I haven't thought about, but it was tough to hear someone tell you your child would likely need a wheelchair. After being told for 2 years that our son does not have CP and repeatedly being told he will be walking soon...few more months, by Christmas, by Spring, etc. it was tough to hear, even though I was always cautious and unsure of their predictions about him "catching up."

Anyway, Edwin is doing very well with his walker. The issue PT is worried about is that Edwin will have difficulty with long distances. If there is a school performance in the gym, Edwin will have to use his walker to get to the gym, and what happens if he gets tired? We don't want him carried around. If we take him places now we use a stroller, but a stroller isn't the appropriate option for school. So PT wants us to have a wheelchair for school in case they have to go long distances. His primary way of getting around will be his walker, but we will have his wheelchair if he needs it. I understand her point, and I want Edwin to have what he needs, but I just had so much hope he would use his walker and then transition our of it and walk independently at some point in the not so distant future. I really don't know now...
Anyway, we'll have our meeting with the equipment specialist in mid-April once we are in our new house, and they will make decisions about what equipment to order. He needs a walker, a Rifton chair, and possibly the wheelchair.

FINALLY Serena had her PT eval. I have been asking for this forever, and she was given one about 7 months ago and PT said she was fine. I disagreed and have brought up her issues with balance, not walking up or down stairs, and her inability to jump for months. Today they watched her on the stairs and stepping up and off a phonebook. They realized she has no idea where her body is in space when trying to walk down stairs and she is very unsafe. So Serena will be getting PT on a regular basis as well. The worst part of EI is they always try to see both children at the same time, and it doesn't work. I can't take off work for every single session so it makes it harder for me to advocate. It's another reason Serena needs to attend school and get services through the school system for PT and ST. I don't think we will have a problem getting her in based on her gross motor delays.

So it was a pretty crazy day. A reality check for how "involved" Edwin is and will be in school. He will have PT probably 3 days out of the 5, he will almost certainly have an aide, and all his equipment.
I hope I like the preschool tomorrow, and let's hope the principal is better than the one I met today....

And here are pictures of the kids at a dance show we went to with a coworker and her kids. They are so cute!!!