Monday, February 3, 2014

Too many books: Raising A Son With Special Needs

Willie loves books. He always has. The feel. The smell. The look. The potential. His desire for them fueled our constant purchases.  His Brain Damage left him very able to read. Reading is one of  Willie's greatest strengths. Through reading Willie has become an expert in Animals, Cooking, Under the Sea Creatures, Mythical Monsters, Star Wars, Pokemon, Harry Potter, and Batman. As a parent of a child with some very significant deficits, I celebrated Willie's reading with "too many books."

 Some of Willie's Books

When Willie was 16, we were lucky enough to have found him a Residential School called The Camphill Special School. As this was a traumatic but life-saving transition for Willie, we packed up all his favorite things to ease the move. Blankets, pillows, clothing, toys, and many, many books. For books are Willie's security blanket. He holds them, carries them, sleeps with them, and brings them everywhere. We knew Willie's books would give him safety, comfort, and consistency as he ventured to his new school.

About 10 weeks after Willie started school, we were having our weekly talk with Willie's House Father when he dropped the phrase "too many books." By then Willie had transitioned nicely to his new school and very different living arrangements. He had been home once and seemed remarkably lighter and less sad and mad. Willie was beginning to thrive both in school and work at this very Special place.

So Robin, Willie's House Father, continued on with his description of the problem of "too many books,"along with a solution. He described Willie's insistence on carrying piles of books from place to place, his inability to keep these precious books organized,  and his very odd process of reading these books. Robin said his idea was to put all of Willie's books in a library in Robin's room, giving Willie rights to take out 6 books at a time. He hoped Willie would not only be able to keep his books less scattered but that Willie would perhaps read them in a more in-depth and sequential manner, from beginning to end, with greater concentration?

My reaction was as if I had been turned inside out. As if I was a slug and Robin's words were salt poured all over me. For 16 years, I had taken salvation in Willie's interests in books and all that this encompassed and implied. For all of Willie's limitations, I always knew Willie's books made him Special, made him interesting to others, kept him from being too disabled, made his horrific behaviors bearable, made all my work for him somehow OK. To hear Robin suggest Willie had "too many books"was unfathomable and his solution devastating.

But you see when you get to the point of needing to find your disabled son a Residential School and you win the Jackpot with discovering a Heaven on Earth, you cannot say NO. I had to give Robin's library a chance. I hated it.

And in the end, Robin's system resulted in everything he hoped it would. It was the beginning of Willie learning that less can be more. Willie started to get that he needed to keep his STUFF in order. Willie learned how to spend more time on his books.  He learned to read from beginning to end and to stick with one book longer than ever before. It was a mini-miracle. The results were essential, crept into other parts of Willie's habits, and have lasted to this day!

And I learned a comforting and invaluable lesson. Never before had any school, therapist, institution, or individual taught me anything about Willie. I was always the Willie expert armed with explaining him everywhere he went. But Robin showed me that he could teach us something about Willie and improve his life. It couldn't have come at a better time. For we had finally found a place where Willie could grow without me always interpreting, explaining, advocating, and enlightening. Five years later, this place, The Camphill Special School, has never stopped teaching me and insisting on Willie's phenomenal growth and maturity.

There is such a thing as "too many books." Thank you Robin!


Robin and Willie today




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