School Daze.

“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.

2 comments

  1. Hardly know where to begin. Hold on for a long one. Which you said you didn’t mind and,returned the favor with that amazing comment to me on blood donation. Thanks for that, by the way.

    Okay, do you know what I wouldn’t give to have a school like this that you so beautifully describe? Sounds like the school where Bennett is at. Ken says it is the “it” school. None better. You are both so lucky. Your kids are so freaking lucky. But, you both already know that. I can tell you and Karin knew that, from almost the minute you walked into the school.

    For me, for Zoey, it becomes what is the lesser of like 5 different evils, when it comes to transitioning to Kindergarten next year. Scares the crap out of me and for her. 4 nurses? Mind blowing. Zoey’s g-tube throws most of the prospective schools for a loop. I was actually asked if I would be wiling to come during feeds to do it. Seriously? I of course will but honestly, doesn’t make me feel confident in the capabilities or willingness of any of them to take on my girl.

    What I hear in this post, is an overwhelming sense of peace. And, isn’t that peace, what we as parents yearn for when it comes to our kids? Peace of mind and the knowledge that when we send our children out into this big bad world, to places that will have no choice but to relinquish control and trust others, strangers in most cases, to care for our precious and fragile kids, don’t we want the peace of knowing they are being cared for by the next best thing than ourselves?

    I struggle sometimes. And sometimes, even my older girls ask me why I don’t just keep her home with me. And, it is simple really. She needs more than me. She craves more than me. She deserves more than me. But man, is it hard to know where that is.

    I can’t wait to watch this unfold and I have no doubt that you and Karin will make it happen.

  2. I can’t really top Heather’s.

    But I’ll go another direction, about IEP’s.

    I have come to know that IEP’s are meaningless, you seem to be on a level of understanding with that though. Think of them as Driver’s Licenses. That’s what they are really, when you think about it. It is state-provided documentation, nothing more. You go in that first time, take a test, and they give it to you. You get it ‘renewed’ but nobody really checks that you know how to drive a car. They assume you do. But the license affords you abilities to springboard to lots of other things.

    Not one of my better analogies.

    I’ll work on it. Get back to you.

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