Summertime

It’s officially summer. Sunshine, swimming pools, and family vacations. No more school, or schedules, and a much-needed break after a busy year. It’s also officially one of the hardest times of the year for Ryder. For a child who thrives on routine and consistency, summer holidays are the equivalent of having your world turned upside down. On the last day of school, I reminded Ryder that he would see his school, and all of his staff and friends in September. It’s confusing for him, and maybe a bit sad. Despite promises of a fun summer, he struggles greatly with the change. The first few days were pretty rough. Ryder has been having some behavioural gagging and vomiting. This is different from his chronic and involuntary vomiting, which he has battled since he was a baby. It’s a behavioural reaction to things he doesn’t like or want, most recently his sister talking or interrupting his dinner. It’s very frustrating. We’re working hard to help him understand that this is not an acceptable way to show his frustration or dislike for something. The main way Ryder voices his frustration though, is screaming. It is loud, upsetting, and after several days, very irritating. Sometimes it makes me feel like I’m going to lose my damn mind. The screaming is not Ryder’s fault. He can’t talk through his feelings like others can. It’s a behaviour we hope will improve as he acquires more communication skills. It’s one of the most challenging behaviours we deal with, and it’s one of the things I find hard to talk about. Nobody wants to admit their child is struggling, but sometimes they do, and that’s okay.

Ryder has started to come around now, and settle in to the new routine. I try to keep things as consistent as possible, but it’s actually harder to do when we’re at home all day versus the regular hours of school days. Over the years, and with lots of practice, Ryder has become more flexible and more comfortable with unstructured days, but they are still difficult. He needs movement breaks, and time outside, but the heat makes it hard, and I can’t always chase him around the neighbourhood when I’m trying to corral his sister at the same time. We bring in extra support during the summer months, or vacation with family or friends who can help us. I can tackle some outings on my own, but most activities require one to one support so that everyone is safe and can have fun. The challenge is that when Ryder decides he wants to do something, he’s doing it, and this includes sprinting off in the opposite direction of whatever activity we’re participating in. This is where the divide and conquer tactic comes into play. We’ll all do something together, but when Ryder needs to take breaks to regulate, he’s able to do so. He needs guidance and support to participate in activities.

So, yes, summer has arrived, and brought all of its usual challenges with it. And it’s bittersweet. There’s a bit of grief that resurfaces when you watch kids playing happily at the park with their friends, and you’re chasing around your frustrated and overloaded child, trying to understand why the things that are fun for those other kids are not fun for him. There’s a little self-pity that creeps in when you feel like everyone else just gets to go out and do things, and for you, everything has to be calculated and planned. I allow myself these moments, and then snap back into our reality and start thinking less about what we don’t have, and more about what we do have, and how we’re going to make things work for us. Sometimes you have to let go of the way you think things should be, and enjoy them as they are. I’ve always tried to look at Ryder’s challenges as differences, rather than limitations. We can do anything we want to do, we just have to write our own rule book, and play our own game. Ryder wants to do all the things that kids love to do, we just have to set it up a little differently for him. And the smiles and laughter and love he shows when he’s having fun make it all worthwhile.