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Tuesday, May 8, 2012

Tick tock life is a clock

    I haven't written in a long time. Its been pretty busy around here. Lukes time at Happy Days school- Portage County Developmental Disability school- is swiftly coming to an end. In April I had what you call a transition meeting with our local school district-to talk about Luke, his up coming evaluations and our concerns. Everything that I have been dreading about him going off to school was only made worse. The speech path. who works with the integrated (half kids with disabilities/half typically developing) preschool told me how they have no structurized program right now for the kids, that some like Lukas are having a very hard time and not getting their needs meet. They are getting waivers for more students to be in the class room (so that's more than 12 in a room). Anyone who has seen Lukas develop knows what a God send Happy Days has been. They do a program called TEACHH, its basically a picture schedule and its basis is structure with low numbered class rooms. Now Streetsboro doesn't offer anything of the sort. I had Lukes Early Interventionist come with me to the meeting and stress how much he needs structure and low numbers in a classroom. It seemed to fall on deaf ears.
     Now the Speech path was agreeing, that she doesn't think they could meet his needs and if I could get him into an Autism preschool, I should definitely try. And so I did =)  I made the appointment for Hattie Larlhams Autism preschool, to get a tour and see what they have to offer. (which I was told by Streetsboro I will never get him in, they are always full) Come to find out they are not full. They have an amazing program with amazing staff and do a lot of the things that Happy Days does. She gives me the number for a guy named Mike-he runs the Portage ESC(educational service center). Asked him if we could have a meeting to discuss Lukas, that I think he would benefit more from Hatties school. He told me sure, lets get Lukas evaluated and talk to Streetsboro. The next day I call Lisa who runs streetsboro program and she is very rude, tells me all sorts of things, like how dare I not think they cant provide for Luke and so on. What I really wanted to tell her was everything that her Speech path told me but I am not one for getting people in trouble and that definitely would have gotten her in serious trouble. She was discussing other children with me that shouldn't be allowed by no means. All my hopes go out the window and she is going to fight me for Lukas. She thinks if she gives him PT OT and ST that that is meeting all his needs.
     I don't agree with that at all. My problem with Streetsboro isn't the therapies, its the program itself, its the high numbers with no structure(that my son excels at) that is the problem. I understand they have regulations and he has to be evaluated by them (which is on May 18) to see where we go from there( if they can meet his needs or not which she is sure of without ever meeting Lukas). But as I always say..ITS NOT WHAT YOU SAY, ITS HOW YOU SAY IT. So now comes the waiting game. I have been a wreck for weeks, trying to hide it. Some know my fears and how this upsets me but mostly I am an internal kind of person. I write when I get too overwhelmed to help me cope. I feel myself slipping into my depression over this again. I am not sleeping well, my husband is constantly asking me if I am ok. I don't talk, I am getting high strung and taking things way too personal.
     I see my son thrive, I see hope after all that worry I had months ago and now its being threatened. I am glad Streetsboro thinks they can provide for my son, but with never meeting him and not willing to work with me or hear my concerns it puts a bad taste in my mouth. What it honestly comes down to is money. They would have to pay to release him to Hatties. So here comes the question-are you in education for the child with special needs or are you greedy? Special needs kids are that for a reason. They have special needs that if you cannot provide them, you should be willing for the sake of the child and whats best for him/her, do everything in your power to make it work right? To do right by the child?? I get massive anxiety about things I cannot fix and with soo many things hanging in the balance, which way is it going to tip? My heart literally aches for my baby.
     Its hard enough to have Autism and to see the world they way they do, soooooo different from what we perceive. You want to put undo stress on them because you want to prove a point or not spend the money? So I sit here most days trying to fill my time, finding out info, crying, worrying, making myself sick because of stress for things I cannot control. Cant control but I can help, I can fight. Which I plan on doing sooo very much for my son. People tell me don't think about it, you can't change anything right now, you can't fix it right now. I very much don't intend to be rude but its going to come across that way anyway. If you don't have a special needs child you cant even fathom the things we go through. The most you can do is empathize, so please be there to comfort but don't tell me not to be upset or worry. Its a hurt and sadness on a whole other level and if you haven't been through it first hand its hard to describe and you can't imagine the pain that never stops. I love my son and his Autism. I don't blame Autism, I don't hate it at all, do I wish it was different for him, you are damn right! He is soo unique though, the way he smiles at things we cant understand or how he perceives things we don't see, his little quirks that I find soo silly and entertaining. Its my adventures is his world, trying to understand him. I don't see why people have to make it more difficult for our kids.
     I haven't even touched on how I feel inside right now. I usually feel better after writing but as I sit here looking at my keyboard and screen I still feel awful inside. I sit here crying, trying to find a solution but I have done what I can for now and somehow that doesn't seem like enough, its never enough. Thanks for reading and your support. One day we won't have to be rich to give our special needs kids what they deserve and whats rightfully theirs.