A few weeks ago we were down in Dallas, Texas, at the VEX Robotics World Championship. Both my kiddos were competing, and Mr. Trent and I spent six very long days cheering (at times screaming) them on. We actually celebrated our anniversary at Worlds (as it is known in the robotics world). Who would have thought we’d be celebrating 17 years of HEA with robots? Not me, and especially not me of five years ago.
I’ve thought for a long time about how to share that I am a special needs mama. My children for the most part are very abled. Their disabilities are invisible to strangers and casual friends. My kiddos have a right to their privacy. I don’t want to broadcast their needs to the world at large, especially since they often want those needs to remain private.
But my identity, my struggle, and my triumphs can’t be shared without explaining that my kids struggle, and we have collected what feels like an entire alphabet of letters in an effort to better support them. Once upon a time another mama at hippotherapy told me, “A diagnosis is support.” An average of 4.5 diagnoses later for each kiddo, I know she is right. But to the world at large a diagnosis can feel like a stigma. Five years ago when the first diagnosis came, it felt overwhelming. At times it felt like an unfair, inapt label. “But it’s the correct label,” a mom argued at a parent support group. “Our kids stand out, they are going to be labeled whether we like it or not. I want to make sure that I supply the correct label before other people come up with their own.” She’s not wrong. It’s still hard to navigate.
I’ve tried to talk around it here on my blog–mentioning that for many reasons the everyday realities of family life are hard to navigate for the Trents . But I’m afraid this just comes across as coy. The fact of the matter is I parent twice exceptional kiddos who are neurodiverse in multiple ways. I love my kids; mothering them is hard, hard work. I am completely aware that my struggle is a cakewalk compared to what other mamas and families navigate. I see the struggle. I see the glass moms and dads supporting these children with needs that are much bigger than what my family faces. Claiming that I am a special needs mom doesn’t seem fair in comparison. My kids can be in general ed. They can participate in robotics. It’s not that bad. But also we’ve had weeks where upwards of 40 hours of therapy was occurring in our home. I’ve been trained and certified in crisis management. “Sunday stroll” means something very different to me now than it did five years ago. I’ll spare you from the minutiae, but there are entire swaths of activities that we Trents cannot do without enormous amounts of organizing and preparation. Some stuff just isn’t worth it. Other stuff, no matter how hard I strategize and plan cannot be done.
So back to robotics. It was wonderful, and it was hard. There were times when I wondered if Worlds shouldn’t be relegated into the can’t be done pile for the rest of forever. There were also times when I was so damn proud of my kids. I wanted to write on poster board:
Neurodiverse and proud.
My neurodiverse kids are at Worlds. Tell me again who has rock brain.
But as we were flopping back and forth between meltdowns, victories, sensory overloads, rigidity, and needing to buy yet another $8 cookie (convention center food is expensive), this would have erm… reinforced stereotypes. Furthermore, as one of our therapists pointed out, “Everyone who is in competitive robotics probably has something.” This was our community. Every parent, grandparent, and auntie there could have held the same signs with me.
So the VEX Robotics World Championship. It was a lot. It was hard. I’m glad we went. I’m also hoping that it isn’t a yearly experience. I highly recommend it. I’d never go for the full 10 days again. And I have a million notes for anyone that is interested about how to navigate Worlds that I’ll be sharing here in the future.
Final thought, because this post has been all over the place: having my family evaluated for special needs was one of the best decisions I’ve ever made in my life. Period. I am so damn proud that I insisted all four Trents were going to get screened and tested for neurodiversity. Diagnosis leads to support and support leads to understanding and growth. If you for any reason are thinking that an evaluation would be a good idea for you and yours, I highly recommend moving forward with it. It was worth every investment we made (time, money, emotions) and has paid out in dividends. If you ever wanna chat about it, you know where to find me.