Singing with me on our way to her neurodevelopmental re-evaluation last week~
There was a glimmer of a question in my mind within her first few months of life. But I attributed it to her Down syndrome. Remember, we had very little personal experience with people with Down syndrome before Verity.
My inner query never completely left me, though. At various times, I would go and read voraciously on the subject. I remember asking an experienced T21 mom friend whether her daughter exhibited certain specific traits and behaviors I saw in Verity. When she answered, “No,” the question intensified within me.
Verity showed such tremendous promise during her first two and a half years. When her developmental progress leveled off and then began to slide toward regression, I blamed myself. I thought it was probably due to my unusually busy season of life and consequent inability to maintain the intensive one-on-one intervention I had given her during her first three years of life. It’s always been a full time job to keep Verity engaged in the world around her; being unable to accomplish that and watching her regress brought me enormous mental anguish and self-blame.
But the more pronounced Verity’s difficulties (and they make quite a list, which I have added to the comment section of this post) have become over the past few years, and the more I’ve been able to observe others with plain ol’ Down syndrome, the more strongly I’ve suspected that she’s facing greater challenges than just her extra chromosome.
Last Thursday, I finally asked her neurodevelopmentalist straight out, “If we were going the typical route with Verity, in your opinion would she be diagnosed with autism spectrum disorder?”
“Absolutely yes,” she replied, confirming what I already knew. “It’s less pronounced now than it was at her initial evaluation [February of 2015], but yes. And you have done a fabulous job with her. She’s doing so wonderfully well.”
Here’s an informative summary of the dual diagnosis of Down syndrome and autism. Right now, we fall in the category of parents who are pursuing non-traditional solutions to help their children reach their personal best potential. For us, it’s the Hope and a Future neurodevelopmental program augmented with the GemIIni Educational Systems. These have already had a significant positive impact on Verity’s developmental progress, and we’re really just getting started.
To those of you who know Verity, especially if you also know other people with Down syndrome, this blog post may not come as a surprise. You may feel like it makes sense. A lot of the behavior you observe in her is autism, not Down syndrome. While I have your ear, may I say “Thank you,” for the affection, patience, understanding, and acceptance you show to her? We can’t imagine having a more supportive bunch of church family and friends. You are a gift.
To those of you who don’t know Verity, this news may sadden you. I myself would have been crushed by it several years ago. Even a year ago, I was still saying, a bit tongue-in-cheek, “She doesn’t have autism spectrum disorder, she has ‘waiting for Mama’ disorder.” She does respond markedly well to lots of purposeful one-to-one time with me in particular, but I didn’t cause her underlying challenges. Yes, I’ve come a long way in accepting limitations, both mine and hers.
To us and to Verity, nothing has changed. Verity is the same funny, quirky, sensitive, opinionated, affectionate, smart little person we have known all along. We’ll keep working hard with her. The programs we have chosen to help her are helping her. We will doubtless try other interventions in the years to come. She just carries another label now that may help others understand her better.
Nothing has changed…except…I might feel a bit more proud of how well she’s doing.
She has tremendous obstacles to overcome every moment of every day.
And she will overcome them.