Autism Awareness Day #13

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This photo was taken whilst we were away on holidays. Thomas loved to sleep with his favourite things. It calmed him.

I’ve said it before and I’ll say it again … sleep deprivation is the most torturous, cruel and damaging thing that can happen to your body and your mind. Not only is it tough on a parent, it’s also very tough on the child.

When Thomas was a baby, at around the age of about 10 months he began waking up 5-10 times a night. This sleeping behaviour continued until he was about 3-4 years old.  There were some days when I truly believed I was a danger to myself and to others due to sleep deprivation – I was barely functional.  I believe I touched the face of ‘insanity’ on more than one occasion.  This interrupted sleep was terrible for Thomas as well.  His behaviour deteriorated; his repetitive behaviours increased; his ADHD characteristics increased; crankiness increased; and his general well being wasn’t great.

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I received a lot of “advice” during this time with Thomas – Do you have a proper sleep routine for him? Are you sure he’s warm enough or perhaps he’s too hot in his bed? What are you feeding him? It’s the dummy – you need to get rid of it? Have you tried Aroma therapy? It’s just behavioural – you’ll have to take him to a sleep clinic!” Don’t get me wrong … I know that most of this advice genuinely comes from a good place but it is SO annoying when people assume you haven’t at this point of complete desperation read EVERY article about sleep on the internet, every book, consulted friends and others … and even tried standing on your head and whistling “Dixie” and despite all of this … the child just DOES NOT SLEEP!  Comments like “oh well .. we all do the hard yards with our kids when they are young – my kids were poor sleepers too!” just are not useful when you are completely at your wits end.  Do you know what would be helpful?  Offer to go and sit with the kids so mum can duck off for a power nap. Bring around a meal so mum doesn’t have to cook that night. Organise to mow the lawn or offer to take the washing and/or ironing home to mum can go to bed early if she can.  These are the things that are genuinely helpful.

For some parents with children with Autism this issue with poor sleeping never improves much. Sleep can continue to be an issue for individuals on the Spectrum throughout their lives and therefore often becomes an issue for their family members as well.  There are medications that can help improve the quality and the duration of sleep for those on the spectrum but sometimes the side effects of these medications can outweigh any benefits of the sleep.

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This was Thomas’ first bath after he was born. A nice, warm soak has always calmed him. He was quite a good sleeper in the early days.

My boys take Melatonin each night to aid their sleep.  “It is thought that patterns of melatonin secretion may be irregular in children with autism. It isn’t that they don’t produce it but that they don’t produce it at the right times of day.” http://www.autism.org.uk/living-with-autism/understanding-behaviour/sleep-and-autism-helping-your-child.aspx  A Melatonin supplement can help regulate sleep and wake cycles.  It has been a God send in our house in helping the boys relax and get into a better ‘head space’ for sleep.

Around the age of 3, when dozing off to sleep Thomas would articulate his worry about his personal safety; he would become controlling of his environment and he would often require someone to sit with him. For a while, we even moved him into James’ bedroom because it seemed to settle him better.  He would often chew his mouth/lips/cheeks during this pre-sleep time.  He needed to sleep with his favourite things at that time – often Thomas the Tank engine trains, or little figurines or action figures.  He also had a cotton, satin trimmed blanket which he slept with at all times.  And his dummy … he still holds anger towards me about ‘taking away’ his dummy at the age of almost 4.

Thomas has started taking Lovan in the last 12 months. Lovan is an SSRI which assists in helping to reduce obsessive behaviours and depression/anxiety symptoms.  Now that he is able to express himself better, his sleeping issues as a younger child are probably starting to make more sense. Lovan has been very helpful for Thomas in reducing this compulsive, self-harming behaviour during the day and night.  With the help of Lovan and also Melatonin, he is now generally sleeping well.  He is 6 years old.

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For him a couple of things are still crucial to his settling routine. He likes to follow the routine of dinner, bath, Scooby Doo and bed.  He needs a polar fleece blanket on the bed somewhere – either over him or under him, and he must have an ice pack which he places inside his pillow.  I’ve learnt not to ask questions about this stuff.  It just ‘is’ as it ‘is’!  😀

I think over time that my sleep has become disordered too due to waking up to the boys so often. I’ve become so used to having one of them in my bed at some point, that often I half wake and desperately feel around in the bed because I think I’ve ‘lost’ whichever child I think should be there.  Parts of my memory seem to have died from lack of sleep, and I’m positive that my IQ is not what it once was either!  It is getting better though as we all get consistent and good quality sleep.

It has taken a lot of commitment, consistency, investigation and also just plain good luck to get to a place where we are now a pretty functional sleeping household. To all of the parents and their children still suffering sleeping issues … you have my full and complete empathy.  Don’t give up! It will slowly get better and if it isn’t, ask for help!  And if that person doesn’t help, ask someone else.  Sleep deprivation is a serious issue with serious consequences for the health and well being of everyone in the household. Please ask for help of your friends, of your family and of the medical profession. Even having 2 hours to yourself to get a power nap can make all the difference.

Take care and sweet dreams x

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