Month: June 2021

I met a mom last week who is just starting her autism journey. Our meeting was a video call and she kept apologizing as she had to interrupt our conversation and help her child. She was obviously overwhelmed and exhausted and not sure what to do first or next or after that. I remember those days and wonder how we made it through certain times.

We have been watching family movies and I see Rob in constant motion – bouncing from one thing to another, usually with ear piercing happy squeals. And if we aren’t at home or at Grandma and Grandpa’s house, someone is right with him at all times. Casey is quiet in the movies. She has a super quiet voice – almost as if she is afraid someone might hear her. And it makes me sad. For family gatherings, she is often on the outside – she was encouraged to join, but for her, being on the outskirts was “safer.” Once in a while, she ventures closer, but not often and never if it is a noisy group.

Mandy’s birthday videos are full of parties and friends – Casey and Rob had cousins at their birthdays some years. I know they didn’t care – that they really didn’t enjoy being the center of attention, but still, sometimes, it makes me sad. I know it’s just their autism, but I wonder if they wished they had friends come to the house. Somehow, I doubt it. As I’ve shared before, Mandy’s best friends included Casey and Rob in everything they wanted to join and I can never thank them enough for that. Rob and Casey often mention Kenzie and Kelsey and Ryan.

As I was listening to this mom talk, I thought about the nights when I rarely got more than an hour of sleep at a time and when I did sleep, it wasn’t a deep sleep, as I was always listening for them to be wandering the house. I remember when Rob wore jeans and regular t shirts and a ball cap every where he went. Now, I know the ball cap was a security thing for him – he was never without it. He slept in it and it went back on his head before he got out of bed each day. I remember when going into stores was painful and scary for both of them and how I never thought we would be able to take any kind of vacation.

I remember the exhaustion of the school calling every… single… day. Some times, it seemed it was for the dumbest reasons. Once, when Casey was in 1st grade, they called and told me she was “stuck” on the second floor of the school. When I asked how that was possible, I was told she wouldn’t open her eyes to walk down the stairs, so she and a teacher were sitting at the top of the steps and had been for a few hours.

I told them to get her hand and start walking and she would open her eyes, but they wouldn’t. I had to go to school and walk her down the steps. She pulled that closing her eyes crap with me, but I started walking anyway – and guess what??? She popped those eyes open! She wasn’t allowed to go to the library for several weeks because her teacher was worried she would do it again. I wanted to scream at that woman. Casey got exactly what she wanted – no math class that day.

Most days, I think it’s a miracle that Rob and Casey are doing as well as they are. There were no supports, no information (unless you counted the books that blamed autism on moms not loving their children enough 🙁 ), no internet (not that you can trust everything you read on it!) and few doctors who had ever seen a child with autism. We guessed and schemed and made up things every day that might work. At that time, it was also assumed that every person with autism was just like everyone else with autism.

So when Casey started her screaming meltdowns, I was just waiting for Rob to do the same. It was a rough few years.

But, today… Mandy and I took them to a pool and spend a long afternoon together as a family. I never took my eyes off of them (and to prove autism is still there – at one point, I asked if they needed the bathroom and both jumped out of the pool. Because they had never used the restroom there, they assumed there wasn’t a bathroom). We still had to remind Rob to not bounce and splash when people were close and had to watch that Casey didn’t try to eat all of the snacks we brought when she thought we weren’t looking (I truly believe she thinks I’m blind and dumb at times!) but – they had a wonderful time!

I could actually let Rob walk back to the pool by himself while I waited for Casey to come out of the bathroom. (I had him in sight the whole time) Not many years ago, I couldn’t have trusted that he would go back to Mandy and not help himself to other people’s snacks along the way. Or that he wouldn’t take a flying leap into the pool, regardless of whether he landed on people or not.

So this is all part of what I told the mom. That she will have hard times (what parent doesn’t?), but that she and her son will get through it. Maybe not exactly like we did, but in their own way, on their own path. I reminded her to call me when she needed a shoulder to cry on or an ear to vent into. I wish I had had another autism mom to talk to when Casey was diagnosed. I didn’t meet my “autism mom” crew until Casey was 8 and Rob was 5 – now I don’t know what I’d do without them.

Find your own crew. Whether in person, on the phone, on the internet. Lean on them and let them lean on you. Message me. I’m always looking for new friends that understand the life I lead. 🙂