When you're a kid, school is inevitable, and there's nothing that can elicit more emotions than the first day of the school year. It's, at the same time, both fun and feared; joyous and scary; loved and loathed. In our house there's often double the excitement because not only are our kids getting ready for their first day, but we, as teachers, are also priming ourselves for our first day too. (Granted, we do actually head back a week prior to the students, so we've at least had a bit of a chance to get into the swing of things again.)
2024 sees our son moving into Year 4 and our daughter into Year 2, and for the first time since they both began school, neither my wife or I were able to be there to drop them off for the first day. A seemingly insignificant issue, but for a child with DMD who has Autism and anxiety (both as yet undiagnosed, but clearly present - we're on the waiting list for diagnosis) not having myself or my wife at such a significant event can be really difficult.
DMD is often accompanied by a lot of other conditions, and anxiety is one of those. It manifests itself in boys who have DMD by making them quite fearful and this fear often occurs around bedtime, making sleeping difficult for them. My son struggles to get to sleep and will not go to bed until we do. He will only sleep in a room in which either my wife or I are in, and if we try to send him to bed before we're ready to go, well, we might as well strap in for WWIII. Because of his fear of sleeping, he will often go to bed later than I'd like. (He also struggles to actually get to sleep which means he can lay in bed for a couple of hours before his body overcomes his mind and he can't fight it any longer.) As such, he isn't getting as many hours as someone his age really needs, and is therefore super tired the next morning - especially when an early wake up is required to get to school on time.
Because of these sleeping irregularities, towards the end of last year, he was very tired and complained bitterly every morning when I'd start the wake up routine. Each morning when he was finally awake, he'd pine for the end of the year, and his countdown to the extended summer holidays began about five weeks before the end of Term 4. When he made it to the last day of the 2023 school year, there was a great deal of celebration and commotion - not because he didn't have to go to school, but because he didn't need to wake up early every morning.
The holidays were thoroughly enjoyed, and again, this wasn't necessarily because he didn't need to go to school, but because he was able to sleep until he awoke because of natural causes. (Something which I think we all appreciate - I know I do!) One of the problems he faces at school is that because of the muscle weakening nature of DMD, he expends 30% more energy than someone else his age who has healthy muscles, which means he's generally 30% (or greater) more tired than the rest of the children in his class by the time the end-of-day bell sounds. He refuses to use his mobility scooter at school because he feels so 'different' from everyone else, which I can really understand. He's the only student in a school of about 600 with one, and we won't let him take his manual wheelchair, because we don't want to risk another student taking him for a joy ride in it and accidentally tipping him out. (As a side note, we're beginning the process of getting his fully automated chair this year, so hopefully when that comes in, he'll be happy to use it, although by the time he does get it, he may not have much of a choice.)
So, tiredness stemming from a difficulty to sleep and his body expending more energy to perform simple tasks we take for granted, such as walking, made him really appreciate the extended time he had to sleep longer and let his batteries recharge a bit more. As we approached the end of the holidays, I could hear him beginning to mumble about having to get up early and I was starting to anticipate this as a bad sign of what was going to happen when he was to be forced to get up early for another year of education.
Which is why I was surprised on that first early rise to find him out of bed before I needed to go and start waking him up. In the half an hour we got to spend before he was picked up for school, he was actually really quite enthusiastic about the first day back and said that he didn't care going because he was in the same room with the same teacher as the previous year - one of the benefits of mixed year level classrooms, I suppose - they're great for neurodiverse children. I always thought that he'd be emotionally happy to return, and I guess that this early on in the year, he was also physically recharged, which is so good.
When he got home that afternoon, however, he was a different child. The pressures of the day had got to him and I could tell he was an explosion waiting to happen. He struggles to keep his emotions in check, and when he's at school, his behaviour is better than good. He is a model student, in fact, but when he comes home, he shifts to the other end of that dial and sometimes his behaviour can only be described as, well atrocious. (I'm happy to think that we've provided a home so safe that he can just be himself, but it does get tiring at times too.) It was only a matter of time before he exploded and soon the poor kid bubbled over in an emotional mess. Uncontrollable crying, screaming and just general misery was his reaction to a day that had, in reality, completely overwhelmed him, despite his resolute start. He had gone out to brave the day, but in the end the day had won.
But it didn't, did it. It would've won if he hadn't have even tried, but he left for his first day of school, and he left with his head held high, so in actual fact, he won. He conquered the first day of school life a boss. Regardless of his demeanour upon returning home, he took the day by the horns and shook it without fear. The emotions he came home with are out of his control - I'm learning about neurodiversity so I can better understand it, but it's slow going, and for now, I know that he couldn't stop his reaction to the day any more than I could stop myself shivering if I spent an hour trapped inside a freezer. So own it, he did.
The rest of the first week wasn't too bad. I suspect that the the first day was simply an overload of emotion as well as physical exhaustion. But he's happy now because its the weekend and he has some time to recover and as a bonus, his favourite basketball team won last night, so he's proudly wearing his guernsey in celebration today.
Header image by Kimberly Farmer on Unsplash.
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