January 23, 2017
I am overwhelmed.
I know, I usually write fairly positive missives about our family’s life with autism, but right now, at this moment, as I’m thankful I’m not outside on this blustery Monday morning, I am overwhelmed.
I am overwhelmed at the enormity of decisions that will be made this year and the impact they could have on my severely autistic son’s life.
I won’t make this a long political rant- there are other bloggers who can do this much better, and I know my readers are informed, so I’m preaching to the choir.
But there’s this- Endrew F. v. Douglas County School District RE-1, where the Supreme Court will probably be ruling this spring or summer as to what the “A” (appropriate) in FAPE means, i.e. whether or not special needs children deserve the right through IDEA to services which provide “some” educational benefit, or something more meaningful.
And there’s this- Betsy Devos’s terrifying unfamiliarity with IDEA as a federal law. Good Lord.
And there’s also this- the devastating rules and regulations proposed by the NJ State Board of Education and the NJ Department of Education which, if imposed, could close many of our state’s much needed private schools for children with disabilities.
Including my son’s.
And last, just for fun, I’m worried about Medicare and Medicaid too. Why not throw one more thing in the mix?
I will tell all of you straight up that I never take IDEA, the continued existence of my son’s school, his district’s decision to place him there, or his ability to behaviorally keep his placement for granted. I’ve written posts where I’ve thanked disability parents “of yore” for the creation of IDEA. I’ve written posts to the founding families who brought my son’s school to life through their hard work and dedication. I’ve thanked my son’s school personnel for being so on top of any rule or regulation that might compromise their ability to stay open. And I am grateful, eternally grateful, that through behavioral strategies, medication, my son’s teachers’ expertise, and hell, love and luck, my boy is able to thrive in the placement that has become his second home.
I am gratitude attitude personified.
I know twenty-one and beyond brings its own landscape of troubles. There is not a day that goes by that I don’t hope desperately that my beautiful boy will find an appropriate day program that he loves, activities he adores that will grow with him into adulthood, and most importantly, when it’s time, a residence where he’ll be happy, and safe. I know I will most likely struggle and fight to have these dreams come to pass. I know it won’t be easy.
But I no longer feel relatively safe in our little pre-twenty-one cocoon. There have been days in the last few weeks where I longingly envision signing that last damn IEP, knowing at that point my son will get to stay in the place that he loves until he reaches drinking age. There are days that I long to know I’ve done it. To know that his school’s done it. To know that his sending district’s done it. To know that IDEA’s done it.
To know that he’s done it.
I’m already planning on having a post-signing party. There will be wine and dancing. And chocolate.
Despite being overwhelmed, I want to leave you all with the opportunity to do something if you so choose. Last week Diary of a Mom wrote a wonderful post about Betsy Devos and listed all the Senators on the Senate HELP Committee and their phone numbers (the ones who heard testimony from her). If you are so inclined to call, here is the link:
If you are interested in writing a letter to the NJ State Board of Education or the NJ Department of Education here is the link to my blog with a sample letter and addresses:
Please, do what you can to help. And as always, thank you for reading!
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