Life as a SEN mum

Sleep, or lack there of, is something you’ll hear many a SEN parent complaining about. At its worst you’ll find yourself praying for the broken sleep of the newborn stage, because at least there was sleep. It’s also one of those things that anyone who doesn’t know the struggle will try to give advice on, which I can tell you is absolutely infuriating.

But understanding that there is a reason behind their inability to sleep can help ease the stress a little because it takes away that pressure of trying different techniques that just don’t work.

One of the reasons, that I think most people will be aware of, is the unusual production of melatonin. Melatonin, being the sleep hormone helps our bodies realise it’s time to wind down and sleep. For those who are neurodiverse the low production of melatonin can make it difficult to fall asleep, or to stay asleep. You’ve probably heard about people being prescribed melatonin, or if you happen to see any American blogs/social media accounts you will know how readily available it is there. First thing to know is that in the UK it must be prescribed so that levels and types can be monitored. As to whether your child is prescribed melatonin, however, seems to vary massively depending exactly where in the UK you are. Personally we’ve been asking time and time again for help and keep getting pushed back. But I do know in some areas it is much easier to get sleep studies done and what not.

There are other factors that might affect their sleep. Many of these are things we are used to trying to help them through day to day and are often sensory. Whether it’s lighting in their room, how they’re pyjamas or bedding feels or even the temperature it can take some time to find just the right sleeping environment, so it does take some perseverance, but for everyone involved it is so important, and so worth it.

Also, it’s important to bare in mind that any changes in routine could affect their sleep. Just as we may find it difficult to sleep in new surroundings there’s a whole host of changes that could affect your autistic child. This goes further than just having the “perfect” bedtime routine everyone talks about, to factoring in anything that happens that day, how it affects them, and what their coping mechanisms are. One piece of advice I was given with Charlotte was to keep a sleep diary and add in all details of her day to figure out what events or foods she had and when she slept best. Spoiler: in her situation it made no different so we are still waiting for the elusive melatonin. But just having that sleep diary can really help to notice patterns, just like we as adults do with mood or food trackers.