Wednesday, August 17, 2011

My Misunderstood Child - By Cara Potapshyn Meyers

"Shades of the prison-house begin to close
Upon the growing boy..."
- Wordsworth
Every August, before school begins for the new year, my son is retested for his myriad learning disabilities. We chose August because as parents, we want to know how our son is doing immediately prior to school beginning. By doing this, we can discuss with the school what services my son would possibly need. For the past two years, the professionals have recommended intensive services and interventions for my son. 
This year, my son scored the lowest he ever had before on each of the different assessments. Each professional was outraged that, despite their strong indication for intensive services, my son has been given the smallest amount of services possible. My husband and I had requested meetings with the principal and administrators, whom all blatantly disregarded our requests. Now my son is in jeopardy of failing out of third grade without having even stepped into his new classroom.
We will once again ask to meet with the administrators of my son's school to see whether they will comply with the lengthy list of accommodations my son will need. By law, the school has 30 days to begin to act on our request. If nothing is being done, we were given the name of a lawyer who works with cases such as ours, in our school district, to advocate what is needed for our son. We understand that this lawyer is a "wolf." I think that a "wolf" lawyer is a perfect match for our school district.
Ever since I started to prepare appointments to be made for my son, I have been reading a book called, "The Unromantic Child," written as a memoir by Priscilla Gilman about her disabled son. Even with it's unusual title, this book had been calling me. I kept seeing advertisements for it. The author did interviews about it. For some reason, I just couldn't get this book out of my mind. I ended up buying it.
I won't reveal the details of the book, other than to say that if you are the parent of a Special Needs child, you should read this book. I haven't finished it yet, however I feel that this book resonates my life with my son. It also validates many of the feelings that a parent of a Special Needs child goes through, especially a Mother. Ms. Gilman writes, "Life is a wild roller-coaster right now and I am hanging on for dear life. To think that after all the work and time I invested into finding ways to help my son, the fact that it may not work out is extremely dispiriting and scary." She goes on to say, "How very much I love him, how much I want him to be happy, how agonizing it is to think of him suffering and unable to express himself because of his language issues. There is nothing I wouldn't do for him but I'm not sure what to do, and that is the most frustrating thing of all."
I know exactly how she feels. I wake up every single day wondering how I can better manage my son. Can I do anything more than I am doing to see my son exceed. My son happens to also be very bright. Every professional that has tested him has uttered those very words. What must it feel like to be aware of the fact that certain things you learn come so easily for you, it almost seems like osmosis? On the other hand, because you are so aware, you just can't comprehend why simple things, such as reading and writing seem so "natural" to those around you, yet you just can't do it, no matter how hard you try? I am in constant wonder as to what that must seem like. It would be one thing if my child had deficiencies across the board. But to know that he identifies his deficiencies and they don't make sense to him, breaks my heart even more. What must it appear like having a discussion about how the earth moves in two different ways, yet be unable to even be able to spell "planet." I simply just cannot imagine.
I remain steadfast in my optimism. As Ms. Gilman relates, "In the last month, I've realized in a way I never had before that this is and will be my life - this day-to-day work on and for my son. He will improve and develop and there will be many rewarding moments. But he has a lifelong disability and he will always need loads of effort on his behalf, both in every single interaction with him and with his teachers and therapists. It can be extremely exhausting and overwhelming...But the blessings of being his mother far outweigh the worry and stress and fatigue. Truly he has made me infinitely stronger, more patient, and compassionate person. I can do this. But I will need all the support and love I can get behind me." I am eternally thankful for all the support that I have garnered over the years, as well.
I am interested and eager to see what this school will be doing for my son this year. I am especially relieved that I will be able to call on "Mr. Wolf" lawyer if needed. Based on past experience with this school, I intend to be having conversations with "Mr. Wolf" within the next month or so. This is a huge relief. The "fight" in me is always there, but I end up entirely worn at the end of it. It's the same with my divorce lawyer. I get upset about issues, call my lawyer, she takes care of them. I go on my merry way. I want the same from "Mr. Wolf." Let him write letters, make calls and fight the school administrators. It will be one less constant anxiety to live with. I can already feel the tension release in my body.
As for my son. He is persistent and unrelenting. If he wants something badly enough, he will find a way to make it happen. Like opening a "child proof," empty medication container today. He constantly amazes me. I anticipate he always will.
"A temper known to those, who, after long
And weary expectation, have been blest
With sudden happiness beyond all hope."
- Wordsworth, "Nutting"

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Blogger Liimu said...

I can really relate to this. My daughter is going into 2nd grade and we have been fighting to get her services since before she started kindergarten. It is really outrageous how much they fight spending this money and then so much additional money is spent on the back end to address helping our children catch up or helping them keep from falling through the cracks.

8:24 AM  

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