Remember Roberta Flack’s song, “Killing me Softly?”
Strumming my pain with his fingers
Singing my life with his words
Killing me softly with his song
Telling my whole life with his words
Killing me softly with his song
Well, a book can do that too. Author and autism mom Whitney Ellenby has written a powerful account of what it is like to raise a severely autistic child, made all the more harrowing for me because so much of what she described was my life too.
Why did I need to put myself through it again, reliving that terrible time? Because here was someone who was confirming my experience and making me feel understood. I hung on every word.
Like so many of us, Whitney and I were told that if we adhered to a 40-hour a week schedule of ABA, our child had a good chance of recovery, whereas if we did not, all was lost. It turns out that there is no science to the 40-hour a week number, and it is often pure hell trying to meet that goal, on both the mother and the child. ABA is a wonderful tool in the toolbox, but not the only answer. And it turns out that the child’s chance of significant improvement is completely depending on the child’s IQ. My child has a low IQ, so no amount of repetition/torture at the ABA table was going to cause him to “recover.” Whitney’s child didn’t recover either, and her realization and acceptance of that, and what she did to help him live his best life in spite of it, was the best part of the book.
The scene in which she found out her son’s diagnosis was heartbreaking, but where she really excels is in describing the traumatic public tantrums her son engaged in. She knew that if she didn’t keep trying to get him acclimated to public spaces, his world would just get smaller and smaller, so she heroically allowed him to scream and mall her in public, each time de-sensitizing him a little more (now he is able to go anywhere). And home life wasn’t easy either. Determined to honestly describe what goes on with children such as hers, she describes among other things his feces-smearing behavior at home (his bedroom walls and carpets were permanently soiled).
No, this book is not for the faint of heart. But I loved it because it was real. Here are Whitney’s 5 pieces of advice at the end, which I agree with. Read the book for the explanations for each one.
1. Give every medical or behavioral intervention time, but not too much. Don’t wait longer than a year to re-examine or discard practices that don’t appear to work.
2. Don’t overreact to emerging behaviors or seek to quash them immediately. Too often we forget that our autistic children develop normally in many ways, and like all children they will experiment creatively with their minds and body parts.
3. Don’t wait too long to socialize.
4. Beware of too much political correctness. When we punish those who use the wrong words, we obfuscate the truth of their intent.
5 Parents who don’t have a child with autism are friends, not foes.
The book might have killed me softly, but I am stronger for it. Find it here.