“In the early fall of 2019, I took my daughter Lottie to a birthday celebration.” Especially then, we rarely go anyplace with just one child. It remains out in my mind since it was such an eye-opening experience with only one child in tow, so different from our usual outings chasing so many children.
Lottie was four years old at the time. It happened in a park. Lottie…ran off to play with the other children. And I sat back and observed while conversing with other parents. I didn’t have to follow her for more than a few steps. I didn’t have to keep my gaze fixed on her all of the time. I didn’t worry that she’d get lost on the trail or the playground and end up in the parking lot, that she’d lose her balance negotiating the steps or that she wouldn’t be able to pull herself up a ladder. I was unconcerned about my interactions with other children.
I saw him when I was talking with other parents off to the side of the playground. A father follows his son attentively, never letting him get more than a few steps away.
I saw the son and his demeanour – the way he walked on his toes, flapped his hands, and stimmed – and I realised he was autistic. He has the same demeanour as my other son Gabe.
For a while, I stood back and watched as the father did exactly what Gabe and I did in a public park. There is no way to unwind. There is no serenity. There is no place to sit. For his protection, he has one-on-one employment in public settings like this.
I approached the father and complimented him on his excellent work. At first, he was taken aback and responded, “Thanks…autistic.” he’s ‘I know,’ I replied. I have a Down syndrome son at home, and we treat him the same way at the park. I’d be exactly as busy as you are if he were here!’
The father put his son on a swing, which allowed us to have a little conversation.
We connected over shared experiences of having to be a “helicopter parent” for their safety, stimming, and, most notably, food aversions and particularity. Gabe is very picky about his food: what he eats, how it’s presented, whether he feeds himself or we do depend on the meal, where he sits to eat, and consistency down to how it’s chopped or served.
This father claims that Sonic French fries are one of his son’s only eats. Therefore he drives to town (30 minutes away) twice a day to acquire them. It can’t be warmed or aged. There can’t be anyone else in a Sonic container (we’ve tried this with Donald’s burgers). For many people, this may appear to be completely absurd. However, I was able to comprehend. ‘I got it,’ I say.
Many may condemn him for his meal choice, but those of us who understand. If it’s one of your child’s only foods, you’ll spend a couple of hours every day in the car getting it for them and be grateful he’ll eat something.
I felt prompted to share this 1.5-year-old human connection today. Navigating life as a parent of a disabled child can be extremely difficult. Our lives are similar in many respects, and Down syndrome isn’t a huge deal…which it isn’t. Then I’m reminded of how important it is in our lives and how odd and out of place I sometimes feel among other parents with regular children.
I wanted to share this with all the parents and fathers out there who never get to sit down outside their own homes… Even in another house, because it hasn’t been ‘Gabey proofed,’ as we call it… those who repeatedly provide the same dish since you know it’s the only thing they’ll eat… those who drive to treatment three days a week instead of doing other things… someone who can’t trust their child to be safe when they’re at a party… I’ll be right there with you.
I’m not passing judgement on you. I’m rooting for you. Most people won’t truly comprehend, but I’m sure they’ll try. Many will silently condemn, but a select few will ‘get it.’ I understand, and I’m here to help. “This is ours.”