Paradigm Shifts & Answered Prayers

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Last week, Kyle’s dual diagnosis merry-go-round turned into a dual diagnosis roller coaster. For most of the week, I was unfailingly fixated on the idea that Kyle must have ABA therapy and thus must repeat 4K rather than going to kindergarten in the fall because there would not be time for therapy after a full day of school.

I messaged the psychologist who diagnosed him, his pediatrician, and his physical therapist asking them to write me letters I could bring to his IEP meeting (take 2) scheduled for next week. In the letters, I asked them to list reasons why they felt Kyle was not developmentally ready for kindergarten and why he should repeat 4K. Then I planned to bring the letters as evidence to support my case.

My personality is a little quirky. On the one hand, if I am stuck on an idea there is little anyone can say to change my mind. It drives my husband mad. On the other hand, if someone does present me with a convincing argument that nudges my steadfast convictions, I will think on it at length. The more convinced I am of an idea, the deeper I will delve into thought once the shift begins.

And thus it began when the psychologist who diagnosed Kyle with ASD called me up last week. “I got your message about the letter,” she began, “and just wanted to speak with you first to make sure I am clear about what you are wanting, and also to chat about your plan for Kyle.”

She presented some reasons for sending Kyle on to kindergarten that I hadn’t considered. Namely, that Kyle has been in 4K for a year already, and to have him repeat would mean putting him in a class of children who were having their first experience with school. Some may even teach Kyle undesirable behaviors. Her best case scenario for Kyle would be a shortened day of kindergarten with ABA therapy in home the rest of the day. I vehemently disagree with shortening the kindergarten day, especially because of all that he would miss.

The conversation with Kyle’s psychologist left me confused and distressed, so immediately I called Kyle’s teacher, who to my great relief was available to talk. She reiterated some of the reasons she had presented earlier when I told her my new plans for Kyle to repeat 4K, yet this time the door to my shifting mind had been chipped open a bit by the psychologist. I guess I was ready to hear the reasons.

She reminded me how well Kyle does in school. How he has improved by leaps and bounds this year in his peer interactions and skills. How he loves, LOVES to be in school. How they will meet him where he’s at. How the para-professionals at school will use similar strategies to ABA therapy, with the added benefit of the school environment and presence of peers for Kyle to apply the strategies.

I was closer, but not completely convinced. And up until that point, I had forgotten to ask for help. I was blindly going along with the dueling experts, and forgot to consult the #1 expert. So I said a prayer asking God to give me guidance.

Should I push for Kyle to have another year of 4K in a district that has a no-retention policy so he could have 25+ hours per week of intensive autism therapy at home?

Or should I go with the original plan before ABA therapy was a possibility, where Kyle would go to full-day kindergarten?

That evening as I scrolled through my facebook news feed, an article popped up posted by Nick Walker Sensei. First the title caught my eye: “The Mismeasure of Autism: The Basis for Current Autism ‘Advocacy‘” by Estee Klar-Wolfond, Founder/Executive Director of The Autism Acceptance Project. I clicked on the article and skimmed, coming across this passage on page 2:

Is there only one kind of normal? Of course, when we measure every type of human being against these statistical “norms,” many people will inevitably fall into the margins. The danger is, when we truly believe that there is only one kind of normal, others begin to be de-valued and become subject to submission.

The more I read, the more my stomach sank as I thought about my recent push for Kyle to have (essentially) behavior modification therapy.

This passage struck a blow: My thesis is that the struggle of autistic people…is the result of this “mismeasurement” against subjective norms. The way we market autism–from advocacy, education, therapies and treatments–stem from this mismeasure. Neither valued for their neurological difference, nor heard regarding their perspectives on the social implications of their disability, autistic people have been subject to treatment that seeks to normalize them, or as history has shown, institutionalize and segregate them. Using I.Q. tests and other measures that are constructed for non-autistic people, thus seeking responses that are typical for the majority and not for them, autistic people are considered “wrong,” “abnormal, “ sick,” “victims,” and “hopeless,” and are therefore, continuously set up for failure.

The first thing I thought of was Kyle’s recent developmental assessment, which was an I.Q. test of sorts. He scored pretty low on it, but I knew that he has many skills above the level he was tested at. He just demonstrates the skills differently.

And when I thought even more, I considered that all of my advocacy for acceptance of Kyle and people with disabilities in our world went directly against the idea of this type of therapy. My greatest hope that no person will ever desire to terminate a wanted pregnancy because of the presence of a difference is directly at odds with the idea of using intensive therapy to encourage conformity.

Then I found the blog post, “Quiet Hands,” by Julia Bascom. It’s beautiful and thought-provoking. After I read that, I messaged one of my college friends whose son has ASD, and we chatted about our misgivings with ABA therapy. That conversation solidified my new decision.

For those who might be thinking I am off my rocker, here’s the essence of my paradigm shift, regardless of anyone’s views about ABA therapy. I had believed that ABA therapy would be a magic solution for some of Kyle’s more challenging behaviors. But it would have required him to have a shorter day of school (his best environment) so that he could come home (his worst environment) to do repetitive activities with one person (a college student under the orders of a more educated therapist) that he may or may not click with.

After considering the guidance of Kyle’s teacher, a person who spends every day with him and who emphatically believes that Kyle would do best in full-day kindergarten, plus the new-found information about therapy itself, the fog lifted along with my confusion. Of course, Kyle must go to kindergarten.

So after almost two weeks of stubborn insistence that Kyle MUST repeat 4K and we MUST do intensive therapy, I sat down with my husband and explained all the reasons why I thought we should scrap the whole ABA therapy plan and send Kyle to kindergarten. Lucky for me, Kyle’s dad is understanding of my quirky self and my constantly shifting convictions. He agreed, and I called off the meeting. Kyle’s teacher said she could hear the relief in my voice.

I don’t have a crystal ball, so I can’t be 100% sure what decision would have been the best one for Kyle. What I do know is that I trust the team of excellent professionals who teach and guide Kyle every day. I know he is in good hands, and will thrive within his best environment with the best peer models.

And I thank God for answered prayers.

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

4 thoughts on “Paradigm Shifts & Answered Prayers

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