It’s been a couple of tough weeks with Mitchell’s sleep pattern all over the place. Although he has a high dose of melatonin to assist his circadian rhythms, every few months he seems to have a patch where he is unable to fall asleep and will become either hyper or aggressive. Or in this case – both. It’s hard. We all know what it does to our mood when we don’t get enough sleep, but over a week Mitch had 3 nights with no sleep at all, and then only settled for a few hours sleep in the mornings.
In these instances we are always trying to work out what triggers may be causing these events. If he has a single night wide awake it is usually related to a disrupted routine, such as when a carer calls in sick or if he is excited about what might be going on the next day. But this was not the case this time. It was post surgery week, he was on extra asthma medications with steroids in them, and no school while he was recovering may all have contributed, but it’s hard to know. Plus, his ‘talk device’ was in for repair, so I guess that was a further frustration for him to be unable to communicate this way with us. Boy, I wish he could talk and tell us what makes him so anxious.
As a parent, it’s hard to stay upbeat and patient in the early hours of the morning. I have been working every day on a temp assignment teaching, this past week and needed to be on top of my game so Phil took on the extra load of helping the caregiver during the nights. Yes, it can be a two man job as he strides around the house, picking things up, hitting the walls and generally looking for some kind of physical release. It’s easy to get angry and lose your temper, and I am amazed that Phil manages to stay calm through it most of the time. One night, he ended up being up with Mitchell the full night and getting about 1 hour sleep before heading back into work. Not a great situation.
We both were the recipients of a bite on the arm while trying to settle Mitchell and while I really feel for Mitchell not being able to express what is happening, I feel for us too. The whole house is disrupted during these episodes, and with Holly in the middle of her mock exams we were trying to keep the noise level down. It is such a ripple effect. This is a side of autism, that sometimes get pushed aside by the disabled community and some of the organisations who advocate for the rights of those who are not in the neuro-typical box. I have serious respect for organisations and people on the spectrum who fight hard for an inclusive society, but for the families who care for complex family members who have extremely challenging behaviours, I don’t feel that we are well represented as a voice for our children and for our own rights.
We love Mitchell so much, but emotionally it’s draining trying to keep safe, and to keep our carers safe as Mitchell get’s stronger and lashes out in frustration. You can’t use force in return, and you can’t reason with him in that state, and we have tried different methods to calm him down. During this episode we trialled a different drug that we have had on hold for a year (I really don’t want to add to his cocktail of drugs) – it’s a last resort. But unfortunately, it seemed to have the opposite effect to sedation and he fired up even more. So, we were back in touch with his pediatrician and decided to take that one as a fail.
Trying to describe the aggression to the psychologist in the morning, after a couple of nights of this, made me feel sad. Although I have acceptance that we can’t ‘fix’ autism with a drug, this side of it is no fun for Mitch or us. Anyone that goes without sleep knows what this does to you, so imagine how he feels after several days of this. Often during these episodes it is really difficult to not get really down myself (I obviously do) and I also think having to talk about it to the psychologist, and pediatrician, to describe what is happening makes it feel even worse that we are always focusing on the ‘bad’. In that zone, it feels unmanageable, and I even had decided to call an ambulance to try and get extra help on one of the nights.
These days and nights are hard to speak about and I know we are not the only family struggling through times like these. One of the ways that I try to get through the bad times, is to remember the happier times. It is important to remind myself that there have been moments of better times and that ‘this too shall pass’.
So, today, I got out some of Mitchell’s scrapbooks and flicked through some layouts I had made of the good times. It’s great to reflect on how far he has come, what he has achieved, and to remember that he is a one in a five million. That ‘autism’ aside, there is a young man inside that body that is trying to get through adolescence with a lot of physical challenges, and that he is without a voice to express himself. So, when I voice my emotions and my despair, I also recognise it’s it’s challenging for him too. How difficult must it be to be non-verbal. I need to remember just how far he has come, and that when I get angry and tired and irritable, that I’m just doing the best I can. And so is he.