Down syndrome and stubborn

I’d seen the occupational therapist a number of times, and he’d made passive comments about Cooper being stubborn. At first I accepted this as fact. He’s worked in this field and with other kids that have Down syndrome. It must be truth. But it bugged me. He's two and you want him to sit and do a puzzle that he's clearly not interested in, and do it in an environment that is totally new and exciting. I don't think this is unique to Down syndrome.

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When Cooper was almost two years old, we went to a local event with people in the disability community. I ran into Lucy, an adult with Down syndrome that I'd met about a year earlier. Our paths had crossed at Disneyland, of all places, in a strange and mostly serendipitous moment from the universe. When I saw her this second time, I asked her about her life. What was she up to? What did she like to do? She was volunteering at this disability event, and told me about her teaching at the local elementary school a couple days a week. In the course of our conversation, she told me she was stubborn, and made a comment about all people with Down syndrome being stubborn. I laughed, and felt surprise at the same time. So people with Down syndrome are actually stubborn. I can't argue with her- she said it! Again, I took this as truth.

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We took a break from seeing that OT for a while because I got pregnant with #3 and life slowed down a bit. After I had my baby and when I could manage it, I got Cooper back into occupational therapy. I hoped we'd get a different therapist, but we were assigned the same one. When we came back, the occasional stubborn comments came back, too, and it continued to bother me. He wasn't saying it maliciously or meaning anything bad by it. My husband even told me I was overthinking it, which was probably true. I think it just kind of came out as second nature, with years of hearing and believing that stubbornness and Down syndrome go hand in hand. But I still didn't appreciate it. It just didn't sit well with me.

I didn't find a good time to say anything during a session, and it was hard to gather my thoughts on the spot as we sat and did the various OT activities with Cooper. I didn't want to be combative or make the relationship feel awkward. I really did come to love this therapist for the way he interacted with Cooper and for his style in approaching therapy. I felt an email would be appropriate, so one day I sat down and typed:

You know this, Cooper has Down syndrome, and you've made several comments about him being stubborn because of his diagnosis. I don't want to come off offended; I'm not. I just wanted to offer a perspective that you maybe haven't thought of before. 

I've only been in the world of Down syndrome as long as I've known Cooper. To me, to our family, he is just Cooper. Anytime someone generalizes him because of his having Down syndrome, it stings just a little. I'm aware he has differences in a lot of areas, but we don't tend to focus on the differences. In time, I may find you're right- that he and his buddies with Down syndrome are extra stubborn. 

Secondly, I don't really like the label of stubborn (or any label) being put out there in front of Cooper and his sister. If I am going to deal with a stubborn child because of Down syndrome, at least give me a head start by not letting him know he is stubborn ;). And I don't want his sister thinking of him as stubborn either, just because of the potential it has to change the way she sees him as well. And then she might tell people he is stubborn because he has Down syndrome, and it's just something I want to avoid.

Maybe Cooper will be just as stubborn as other people you've seen with Down syndrome, or maybe he won't. But I'd like to give him a chance to prove one way or another.

At the end of the email I included a link to an article about stubbornness and Down syndrome being a myth. It suggests that stubbornness might be more related to sensory dysregulation. (I will include the link to the article, giving full credit to the authors on that page.)

https://dsactionplan.com/the-stubborn-myth-why-our-kids-deserve-a-better-narrative/?fbclid=IwY2xjawMN0dpleHRuA2FlbQIxMQABHgK9q8U8yVeP-VFcYwA6J8HS1fnQE4R7ySZg5VRu4LaaFDV4BkqLTe9z_JZZ_aem_TZon6GPHrmWzqPOxDuuvIw

From my perspective and experience, which admittedly may be limited, any stubbornness Cooper displays is mostly his age. Many toddlers, with and without Down syndrome, have thrown "fits" because they didn't get their way. I do believe that Cooper's lack of speech is also frustrating to him, and his "stubbornness" can be an outward expression of his discouragement when he's not being understood. Imagine having so much on your mind and not being able to say it out loud so people just go on bossing you around all day long and you get absolutely no say in what's going on. How annoying! I would probably protest as well! And in reading the article linked above, I came to learn of more things that could be getting in the way of Cooper's ability to sit still or focus on a task. (I hope you'll check it out if you're interested in this topic!)

Shortly after I sent the email, we moved away and I never had a chance to see that OT in person again, which felt like a bad way to end our time with him. He did respond to my email with a very heartfelt apology and seemed to understand from my point of view why using the term in session could be negative to a child and/or family. I almost cried reading the email. It feels incredibly relieving when a professional in the therapy or medical world hears you out and responds in kindness and love. I think I tend to hold my breath, expecting to have to prove my kid's worth or argue my "side." But this exchange was not like that, and I'm deeply grateful for the way it went.

We still get occasional comments about stubbornness from others, and I'm quick to note Cooper's age in the conversation. Could Cooper turn out to be stubborn? Is it actually a trait of Down syndrome? Or is it just a mindset that has been so deeply engrained over years of people saying it is so? Was my friend Lucy actually stubborn, or was she just trained to believe she is stubborn because when she was two years old, some therapist or doctor told her mom the same thing, and so they just went on believing it?

I'm going to give my boy a chance to be the opposite of stubborn, to be anything other than what I've heard "is just Down syndrome," and I hope you'll do the same for him and for all people like him.