First do no harm from On the Train With Sophie

First do no harm

When the call went out for submissions to the #IamNotKelliStapleton flashblog, I almost decided not to participate. The Kelli Stapleton case has polarized the autism community (even more than it was already) and shattered any fragile peace that existed prior between autistic advocates and their supporters and some (vocal) parents of autistic children. I remained quiet through the initial incident and the first shockwave. I didn't comment on the trial and the infamous dr. Phil interview. I restrained myself when a blogger suggested "we are all Kelli Stapleton". However when I read this article last night, it pushed me over the edge. Those parents who have supported and even identified with Kelli Stapleton up to this point surely cannot now- following an objective, mainstream-targeted, third-party piece of writing, not skewed towards the point of view of autistic advocates (in fact containing some very ablist views, but we've come to expect these from the media sadly) and yet despite all its shortcomings, the image of the character that emerges by the end cannot be viewed as sympathetic. If someone reads it and still thinks that they could be Kelli Stapleton, they should seek some counselling I would suggest.

 

What has struck me about this case since the beginning is the obvious physical similarity between the victim Issy and my Sophie. Sophie could be Issy in ten years- a cherubic round-faced girl with pale blue eyes and blond curls. Sophie was also diagnosed at 2, following a regression as our readers know. Yes Sophie could be Issy except for one thing. Yup you guessed it; I am not Kelli Stapleton.

 

How am I so sure I am not, do you ask? Let's start right in the beginning, or at the diagnosis. When Issy was diagnosed at 2, her mother (quotes from the article linked above):

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?

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!"

All of her waking hours.

Yes, I can confidently say I am not Kelli Stapleton. I feel my risk of becoming anything close to her is very low, comparable to my risk of becoming say, Temple Grandin. Or Obama. Or anybody else who is not me really. In fact since my blog was started exactly two years ago and about two months after Sophie received her diagnosis, I can quote myself directly as to what I felt as we were in the early stages and considering ABA (which we eventually agreed not to pursue). From this post (the second post on this blog):

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.

I wonder if Kelli Stapleton ever took the time for a similar reflection or whether the objective of "recovering" Issy overshadowed any other concerns for the toddler's well-being.

 

Aside from the fact that I think it's wrong (yes I said that. I don't feel disagreeing with the type of treatment Issy received all of her waking hours is just a difference of opinion. I think it is a wrong thing to do to your child and fellow human being), I will tell you something else. I am absolutely certain that if we subjected Sophie to this type of "therapy" she would lash out physically. And could I blame her? If someone is constantly "in your face" micromanaging your every movement and decision, does that person not become an oppressor, an abuser? Would you not despise them and foam with rage at the mere sight of them?

 

I don't doubt the fact that Issy was aggressive. Unfortunately I cannot say how she would turn out if she was not raised by a narcissistic mother who never accepted her as she was. It is very possible that she would be prone to hitting when frustrated, perhaps biting. It is impossible to say for sure however, because she was not raised in a home where she could be herself and learn to manage her emotions in a loving and accepting environment. She was singled out and punished for her disability, separated from her siblings to endure the therapy that continually sent her the message that she was not enough.

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.

How am I not Kelli Stapleton? When I wanted to engage Sophie I did the opposite. We include Sophie in everything we do as a family. We avoid separating our kids during family time without a very good reason. We constantly brainstorm which activities would be most suitable to all our family members, who are all of different ages, ability levels and at varying developmental stages. It is difficult sometimes but not impossible. Why do we "bother"? Because we are a family. We all matter.

How am I not Kelli Stapleton? Because when I realized that Sophie's autism was "here to stay" I knew that I had a choice to make. I could mourn, cry and pine for the child I thought I wanted. Or I could embrace the child I was given and learn to be the kind of parent she needed. From this post:

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".

You might wonder why I chose to focus on Issy's early years and not on that fateful day last September. I happen to believe that Issy didn't stand a chance well before her mom planned and attempted to end her life. Way before she chose to record her sardonic observations on social media. Issy's fate was sealed as soon as her mother realized that her child is different than she expected and she refused to make peace with it.

 

I am not Kelli Stapleton. Regardless where our journey takes us, regardless what obstacles we will need to overcome, Sophie and I will do it, together. There will be reflections on this blog. There will be thoughtful idea-seeking. There will probably be admissions of wrong-doing. But you will not read snarky comments directed at my daughter or her neurology, those who share it, the problems that aren't hers to be burdened with or intimate information that should be private. This is her story, recorded with love by her mom and her biggest fan. I will be honoured if she chooses to read it one day.

 

 

#IamNotKelliStapleton