tracked down a child psychiatrist in Michigan and essentially dedicated all of her waking hours to the Issy- project.All of her waking hours. That's a lot of hours. Remember, Issy was two at the time. How does one go about "curing" one's child of autism with ABA?
All of her waking hours.From the minute Issy woke up until she went to bed, Kelli subjected her minor routines to rigid control: Kelli would say, "Touch your nose," and when Issy did it she gave her a little prize. If Issy wanted something, she had to look Kelli in the eye to get it. Sometimes Kelli had to make the same request ten or 20 times in a day, because an autistic child finds it hard to tune in or follow instructions or make eye contact, much less do it all day. By the end, she’d be pleading, desperate, "Dear God. Touch your nose! Your whole future depends on this!"
we do wonder if we really want her to be drilled for 40 hours a week, rewarded with a tidbit of food for each socially appropriate gesture she is able to replicate. Perhaps in this case the waiting list is a blessing, buying her some more time to just "be", regardless how unproductive her just being is seen as through the prism of ABA.
For three years, she became Issy’s full-time teacher, enrolling her other two kids in day care and sending them, on evenings and weekends, to the houses of relatives.All of her waking hours.
First thought that came to me- I am sad about the "would-be's". She would have been a cute little chatterbox, would have loved animals, would have played with her brother and sister, would have gone to the nursery school her sister attended, would have play dates with the little girls her age on our street... And I realized- it's not about Sophie. It's about me. All those "would have's" have meaning only because I attached meaning to them. Based on my interests and desires I have formed an image of a cherubic little toddler I would have expected Sophie to be- but it isn't Sophie. If I was a different sort of mom I'd be mourning the loss of a would-be ballerina or a would-be soccer player or a would-be artist. Sophie isn't mourning the loss of those dreams because they were never hers to begin with. As parents we fantasize about what our children will grow up to be. It seldom comes to pass as children pave their own reality (as they should). Yet, when their reality falls outside of what we consider desirable, we reject it, or fight it (it's not just about autism, in some families it could be going against the family profession, or marrying the wrong person, or being the wrong sexual orientation).
Now, I believe if a part of us is still mourning the loss of the child that's "buried under the autism" then that can lead down a destructive path. I've heard people yell at autism, swear at autism, banish autism out of their lives. That goes with the presumption that autism is sort of like a growth that is fused to the typical child's brain and that, with proper handling can be removed, leaving the perfectly intact brain exposed. I choose to see that autism is as much of Sophie's identity as her blue eyes, her infectious grin or her funky hair. You can't excise it from her and uncover a neurotypical Sophie which was hiding there all along. If I claim to love her, I can't make qualifying statements like "I love my child but I don't love her autism". It's like telling me "I love you but I don't like your introvertness" , or "I love you but not your green eyes". I have to think and say "I love you, all of you, exactly as you are".