New Blog!
by Shannon Aronin on May 25th, 2015

Hello World. I’ve been wanting, nay needing, to write this blog for a few years now. But I couldn’t. I worried about the privacy of the heart of our family story, my 7 year old son. So there will be no images of him on this blog, and I will not be including his name. My son, Boo, Boy Wonder, Sunshine, and I’m sure other monikers will come up along the way -- You will know who I’m talking about. Occasionally I may write about other stuff too -- adjusting to Los Angeles, disability rights, being a mom with a career, things that inspire me, and things that move me for example.

Now, I have something to tell you. Immediate family, close friends, and a particular circle of moms who hold me up, along with the best husband in the world, know. I have talked about it plenty... just not in places like my own Facebook wall. There have been little hints, often from well-meaning loved ones who didn’t know how we’ve guarded this... secret. My son has a disability. He has had symptoms of mental illness pretty much since he was born, but it only became obvious that something was really wrong when he was 5. Because of family history and a strong feeling that something wasn’t right, I was pretty sure mental illness was already ingrained. I just thought we would have 10 or 15 years before it was critical to address it. We had already been doing play therapy (utterly useless) but it still seemed like something we could parent our way out of. But remember, remember the 5th of November 2012, for that was the day we knew real help was in order. And a story for another day.

This blog is about our family’s journey through a complex maze of coping, therapies, doctors, diagnoses, and OMG special ed and the accompanying grey hairs and hair pulling that comes with that mess. Boy Wonder has had several diagnoses, and they are probably a moving target. He’s a complex kid and I don’t know if it will ever feel like we have it all figured out. But having just completed a new battery of neuropsychological testing I’m going to share what his current challenges are. My son has ADHD and something new called Social Pragmatic Communication Disorder. Social Communication Disorder (SCD) is a close cousin of autism, my husband described it as “one exit off the spectrum.”

Just a few years ago, before the publication of the DSM 5, SCD was considered autism. Here’s the kicker. The recommended treatment is Applied Behavior Analysis (ABA - an intensive in home therapy that is the primary evidenced-based treatment for autism). But now he has this new-fangled diagnosis that may preclude access to the recommended treatment. SCD is basically like being half autistic. It is a developmental delay that interferes with daily living, makes it very hard to have friends, causes an extraordinary amount of defiance, and is emotionally draining for all involved, especially my son. At 7 years old he is full of fear and anxiety.

The name of this blog came about when my cousin, who is working towards a PhD in psychology, and I were discussing his doctor’s analogy that he has this giant engine and itty bitty bicycle brakes. She explained that this complementary idea, if you aren’t moving forward then you are falling behind, is sometimes called the Red Queen Hypothesis. It comes from Alice in Wonderland.
    “Now, here, you see, it takes all the running you can do, to keep in the same place."

Despite being unable to reliably dress himself, or do many daily living tasks that would be age appropriate for a neurotypical child, Boy Wonder is also brilliant. Like within ten minutes of meeting him people often call him Sheldon (from the Big Bang Theory). His math and vocabulary abilities are off the chart. He is a pretty good coder in Scratch and is obsessed with Minecraft. He watches Planet Earth and Bill Nye, and we read bedtime stories about history. We hope that this will make it easier to fix his brain while he’s still so little if we can just find the right interventions for him. I worry. A lot. Am I supposed to save for college or lawyers? Will he grow up to have a normal life as a nerdy engineer, ideally with a wife with the patience of a saint? Will he be a professor who needs to live in a group home? Am I in time to fix him? And worst of all, the ten-fold guilt all moms experience, what did I do wrong to cause this?

We are also temporarily homeschooling under duress as we had to pull him from public school in late April when the school broke his IEP three times in one day. This was after a looooooooong school year of one battle after another. On top of my full-time and rather demanding job as a government grant writer, I spent an average of twenty hours a week dealing with special ed stuff. This week the district will begin sending a licensed teacher to our house daily for in home instruction and I cannot wait. We are praying and crossing our fingers that he gets into a small private school designed for kids like him that the school district will pay for. We are still trying to figure out summer plans as we don’t know if he will begin classes there over the summer or if he will be in the coding class for 4th through 6th graders we fought like hell to get him into even though he is only completing first grade. If we managed to add ABA + some exercise, in addition to the in home instruction teacher for extended school year services, that would be good too. The only problem is that we don’t know which option will work yet. And, there appears to be NOTHING available for mid July through mid August. Thank God my husband and I have flexible work situations and work from home quite a lot.

So follow me through the looking glass. Drink this and you will grow into a giant, a little scary but empowering. Who would dare take you on? Special Needs Mamas and Papas drink the grow big potion. Other times you drink the wrong potion and become so small you feel invisible. And that’s ok too. If we all pile together we can still be big enough as a community to take on giants.

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