Every single day of our lives one thing remains the same - we are all different and we are all the same. The things that make us different are the characteristics that vary from the norm. Those characteristics are no better or no less than anyone else's. Just different. We are all connected as human beings by the very fact that we feel. We all feel joy, heartache, disappointment, boredom. We all have things we think are funny and things we are afraid of. We all want community, to be shown kindness, to be given opportunities and most of all to be loved. How we express and choose to receive these things varies.
As the end of year ARD (Admission Review Dismissal - Texas's process for addressing special education needs)/IEP (Individualized Education Plan) season comes to a close, I am left heartbroken over the continued misconceptions and prejudices of individuals with special needs. For all the technological and scientific advances we have made in recent years, our social guidelines seem to crawl at a snail's pace. For our family, turning 5 has not been easy. That 5th birthday signals an end to an era and the beginning of a new journey, the school years. Now is when time really flies because your child is away from you for most of the day. My friends will tell you they are getting nostalgic and a bit panicked, looking back to ensure they made the most out of those toddler and preschool years. It becomes a time of reflection that we made the right choices for our child. That we taught our children everything they need to know socially, academically and emotionally to enter this uncharted territory. We are proud of Will and what he has accomplished against insurmountable odds. Over the last 7 months, we have made changes to a majority of his therapists for a variety of reasons. One was just not making progress and the other, to put it nicely, was not doing her job well. I am happy to say we now have the dream team of therapists assembled, and Will is making progress at a faster rate than he ever has. The week after Will's birthday though, the reality of what turning five in the education world meant to us quickly set in. The accomplishments, the joy he has found were dealt a blow when the school district decided to put him in a self-contained special education program, in a classroom that contains 5-10 year olds. In a classroom where they learn to sort by sorting silverware and laundry. In a program where he will join his peers for lunch, recess, PE and music only. In a program where the teacher told me he would most likely remain until he graduated from high school and earn no diploma. At 5 years old, his life had been decided for him. Please don't misunderstand me. There is nothing wrong with this program, if a parent feels it is most appropriate for their child. Not every parent wants inclusion or feels it is necessary for their child, and that's ok. My belief though, is that every parent should have a majority stake in what their child's education looks like. And we should have alternate choices if we do not feel it is appropriate to decide his school career at the age of 5. Is a typical 5 year old assessed and given a set path to follow for the next thirteen years? No, and neither should mine. This last year has really taught me to strengthen my advocacy skills and to trust my instincts as a mother. Let me say this again. We are all different, and we are all the same. This isn't Will's or my lot in life to accept. While Will may need support and accommodations for learning differences, he is the same as every child who wants to be loved, accepted and heard by his peers and cheered on by those providing guidance and teaching in his life. In fact, his progress rate improves when he is placed in this type of environment. My son deserves the same fighting chance that any other child does for the opportunity to develop and follow his passions and talents. When you see blog post after blog post by special needs parents about how to talk to your child about disability or trying to help others understand a day in the life of special needs, you have to see that the typically developing community and the special needs community have been separated for far too long. When schools continue to tuck our kids away, it contributes to the fear and misunderstanding of disability. Please know that I understand that this is a complex issue of funding and resources, but inclusion is not even a discussion at a higher level because at that level, my son is still seen as less than. We are lucky that a private preschool we love has accepted Will next year. In the interest of full disclosure, we will provide a private ABA therapist to stay with him at the school with the idea that she will fade back until she is no longer needed. The preschool is excited to have Will and has already contacted me with great questions about how to best accommodate him next year. Not everyone is in the same position to create this opportunity for their child though and it's truly disappointing that anyone should have to. Every life is a life worth pursuing and nurturing. This guy's certainly is.
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Charming, quirky and incredibly loving. Will loves his friends, swimming, the iPad, the Avett Brothers, observing the world upside down, climbing, jumping and being chased.
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October 2017
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