“Hi Liam, my name is [Sally].” Her name has been changed for privacy’s sake, but each and every one of them came over to introduce themselves to The Boy this morning.
It all started with the teacher of course. Miss Paula was finishing up with story time when our tour of what will probably be Liam’s school next september led us into the pre-school I classroom this morning. 9 adorable little kids of wildly varying educational needs that ran the gamut from “typical” to profoundly delayed, lined up after their routine hand sanitizer rub to meet my boy in between story time and a snack of apple slices and cheese. For Liam, this was the most peer age interaction of his life, and for his part enjoyed all of the attention.
That was the part that I loved so much, seeing that attention. Not the amount, Liam has always been the star of any room he enters, it was the quality of the attention from these kids. Here in this school, Liam will be the new kid but that’s about all that will make him special. His trach? His vent? Didn’t seem to phase these kids at all. Here in this special place all kids are welcome to join in the class.
Next month Liam will turn 3 years old and make the transition from Early Intervention to Special Education. All of his therapies will then become the responsibility of our local school department. Although he is required to be registered as a student Karin and I were unwilling to allow him to start school in January. Not during cold, and flu, and RSV season. So we will bring him into a local public school a couple of days a week for therapy until next september at least.
There are so many intricacies to any IEP that I am not going to get into the details of Liam’s right now other than to say that the public school Liam would be enrolled in for next year probably won’t be able to accommodate his medical needs making Liam’s safety an integral part in this educational plan. Because of this, the school department will most likely refer us to a private school that is more equipped for Liam’s medical needs and his special education needs. While we were warned that this may be the case, the writing is now on the wall that they are reluctant to take Liam on as a student. After seeing the reports written by our early intervention staff they even decided to bypass all initial testing required for IEP’s. They’re too scared to even set any goals for this first one. What a bunch of Wimps.
This morning we toured the school Liam will probably be referred to. I’ll mention it by name someday when Liam’s attendance there is official. It’s like the Disneyworld of schools for kids with special needs. Built in the last ten years it seems as if it were tailor made for Liam. Wide hallways between classrooms. standers, tumble forms, and other adaptive equipment lined up outside each door. Children of different abilities playing in groups together without notice of each others AFO’s, or feeding pumps, kid cart wheelchairs or hearing devices. Kids are able to be kids, not their diagnosis’s.
There are times when Karin and I need to find benefits to Liam’s challenges. Some times it’s the only way to make it through. I suppose i could be worrying about Liam’s IEP and how bad it must be that our school department sees him as too complex, but I know my kid. There ain’t any report or piece of paper in the world that will ever change that. I know what Liam is capable of and believe me it’s a whole lot more than anyone who has ever been paid to interact with him has ever given him credit for (and believe me, given his challenges, they give him credit for quite a bit) But that’s where the benefit lies. The control of the situation rest in our hands alone. When people don’t know what to expect from a child all that they can do is defer to the parents if they know what’s good for them.
On our way out of the school this morning I didn’t even have to say a word to the school department administrator who accompanied us on the tour.
“it’s really an amazing environment I know.” she said as she looked at me defeated. I could see why. After touring the public school that Liam should be attending, no one in their right mind would choose it over this palace. But she has pride in her own school and its program which I admire. Besides, when the school department makes the referral they’re the ones on the hook for tuition. I’m sure the powers that be and the money people would rather we stay in the public school. I’m also fairly certain that she’s not really supposed to encourage even touring this place.
“I know you have a great program for what you do, but it’s obvious that your school doesn’t have the equipment or staffing to accommodate Liam. You don’t even have a nurse available every day where this one has at least four on duty nurses all hours of the day. They are used to kids like Liam and he would fit in better here. In the public school he’d be the only kid in a wheelchair never mind the trach and vent. I am sorry but I don’t think we have to think too hard about where Liam should be sent.” I told her. Karin and. Hadn’t yet had time to discuss what we had seen but it was obvious to me that we were On the same page.
” I know.” she said. There was really nothing she could argue about that and we both knew it.
It’s still about ten months away but I’ll admit my head is still swimming in all of this education stuff. I guarantee This will not be the last you hear about the process – but at least for tonight I can say that we have found the place where Liam needs to be. My only job now is ensuring that it’s where he ends up.