What Disability Pride Means to Me
I recently came across this video “The Truth About My Son” from
Mark Rober, former NASA and Apple engineer, current YouTuber and friend of science, and a parent of kiddo with autism. (As a note, the video is part of a fundraiser he is hosting this week with NEXT for Autism, a worthy cause if you are able to donate).
It inspired me to publish a post that I’ve been sitting on for awhile now, about my experiences in parenting a child on the spectrum, and what it’s taught me about the concept of disability and disability pride.
In my career as a woman in tech, it sometimes meant being told that I didn’t belong. Early in my career, I was once told that there was a “good old boys club” in the organization and that I would “never be part of it.” Thankfully it turned out not to be entirely true, and I was fortunate to have great mentors, leaders and role models that made it possible to navigate the world of being a woman in tech.
As hard as that was at the time, I don’t think I really had empathy for being in an “out” group or not being “normal” until I became a mom of a kiddo with a disability. I’m embarrassed to say that before having a kid with special needs, I didn’t think much about people with disabilities navigating the world around me.
My son has autism spectrum disorder, is speech delayed and has a sensory processing disorder. I’m often asked what it’s like. The “Welcome to Holland” letter written by Emily Perl Kingsley in 1987 describes it perfectly. I highly encourage the quick read. Realizing my kid was different was overwhelming, unexpected, and completely unlike the experiences of parents in my social circle. As my son gets older, the differences between his abilities and his neurotypical peers become more pronounced, and my experience becomes even less mainstream. He is, of course, the light of my life and I wouldn’t trade him for anything. And, life is not without challenges. I invite you into my world for just a few minutes, because like I had, maybe you never thought about what it’s like to have child with special needs until now.
Here’s just a few examples of what it feels like to not be a “normal” parent:
First, there are a ton of assumptions that get made about families, individuals and parents of kids with special needs. A common misconception or default assumption is that something must have gone wrong during pregnancy or as an infant. Did I drink wine? (I didn’t) Was I stressed? (Who isn’t?) What sleep training did I do? (All of it). Did I have a learning delay as a kid? Did my husband? Our siblings? The assumption is that we must be bad parents, we must have caused this somehow, or it must be related to our DNA. I get it in a sense; I think most people are looking for something to assuage the fear that it could happen to them. And yet, it still feels pretty crappy.
Another example is planning for the future. While house shopping for instance, many parents of neurotypical kids look at school system rankings, which are pretty readily available. Meanwhile, I desperately scoured the internet and my personal network for a ranking of special education programs in my area. I have no idea if my son will end up in a mainstream school at all, and if he does will it be a special education classroom, a combined classroom or a typical classroom? If he can’t follow and respond to simple directions or questions like “stay in line” or “what’s your name?”, he can’t go to a neurotypical Kindergarten. And as other parents speculate about future boyfriends, girlfriends, college savings accounts, and more, all I have are questions. Will he have a girlfriend or boyfriend some day? Get married? Have kids? Graduate high school? Should we save for college? Will he be able to live alone someday? If he can’t, who will take care of him when we’re not around? Will he have someone to hug him? Only time will tell.
When people ask me (with the best intent), when baby #2 is coming, I don’t know what to say. The real answer is something like: Well, depending on what study you look at, a sibling has a 10–50% chance of having autism and it could be more or less severe, plus it would be considered a “geriatric pregnancy” (yup, that’s a thing), but I don’t want him to be alone in the world after we die, so it’s just a really hard decision. That’s not what people expect or want to hear so I tend to go with a generic: “Maybe!”
Going out in public (remember when that was a thing?) is also challenging. We often had to deal with tantrums or situations that other parents don’t. The stares, the whispers and outright comments were devastating. My son’s sensory issues make getting a haircut an absolute nightmare. I once spent an entire haircut with a crying kiddo and 2 girls and their mom staring at us with open mouths for a solid 20 minutes. Another time, we went to a birthday party and my son wouldn’t take off his shoes to go in the bouncy house (but desperately wanted to go in the bouncy house). He’s developed a routine that shoes only go on when we leave the house, and only come off when we come home. Routines are important and super tough for kids with autism. Mid-tantrum, I overheard other partygoers whisper-yell “wow, she can’t even control her kid.” And then there was the time I was on a train and someone made a comment about a particularly odd conductor, joking that she was so odd socially that she “must be on the spectrum”. People laughed. I simultaneously wanted to cry and give a lecture on the importance of nuerodiversity. Of course, my perfectly witty retort only comes to me after the incident. After some helpful therapy, I developed a rehearsed response that I could leverage on short notice with little thought: “Hi, we’re dealing with some special needs over here and it would be great if you could give us some space and respect that.” It works wonders.
Other popular questions that are hard for me to answer and statements that leave me stumped include things like:
“What does your son want for Christmas? For his birthday?” I have no idea, he can’t communicate that much. I’m not sure he knows his birthday is coming up. “Why don’t you just _____. Have you tried _____” Yes, I have. If it was as simple as telling him to sleep through the night, or asking him to change his shoes, I would be doing it. “He’s so lucky to have you as a mom, I couldn’t handle that.” Or, “God/the universe only gives us what we can handle.” That is total bull. I didn’t think I could handle it either but it’s not really a choice. I handle it because I have to, and because I want to give him the best life possible. “I hear you on toddlers being challenging. My kid talks NONSTOP, he/she’s so demanding”. I would give my right arm to hear my son ask me one real question, never mind hundreds. Now, I recognize that it’s all relative. People who are struggling to conceive or have kids with health issues are probably reading this saying they would do the same to have my situation.
And then there’s my least favorite: “I’m so sorry, that’s awful.”
My heart breaks for my son when I think about the challenges he’ll face in life. I’m not sorry that he’s here, though. In fact, I’m incredibly proud of him. I’m proud to watch him go through therapy and push himself every single day to tolerate changes in his routines and to learn new things. I’m proud when I watch him struggle to eke out a 2-word sentence to tell me what he wants. I jumped up and down with joy (literally) when he said hi to a random stranger for the first time. I’m proud of myself — for the days that life is hard and I still show up and give both my jobs my all — and for the days that I don’t.
You might be wondering at this point what you can say. Lots of things!
Please don’t pity me nor my son, please do ask thoughtful questions about what my son is up to, how he’s doing, and howI’m doing.
Here are some of the questions people ask me that feel great to answer:
Ask me what he’s like, and then ask follow up questions like you would for anyone else. Ask me what I have planned for his birthday. Ask me what he learned this week. Ask me what he did today. Ask me how speech therapy is going. Ask me how I’m doing.
So why am I writing this? Partially, it’s a little therapeutic — thanks for bearing with me! More importantly, while I’m glad that my eyes have been opened, I also wish that it wasn’t at my son’s expense. So I hope this helps open someone else’s eyes, just a bit, to the world of disabilities and their empathy goes up without having to live this experience first hand.