When Miss Z was a baby, she was a terrible sleeper.  She rarely slept more than two hours at a time.  We did everything we could think of to get to her to ‘sleep through’ – from shushing and patting to co-sleeping to controlled crying. None of it worked.  Miss Z continued to wake and scream. And I was right alongside her, awake… and while not (usually) screaming, there were many nights when I cried along with her.  My memories of that time are foggy and filled with stress and total, utter, unspeakable exhaustion.

Doctors were sympathetic, but most took little interest. Fortunately, our GP and Miss Z’s neurologist did:  an adjustment to her seizure medication and a week at a sleep clinic solved the problem.  For the first time in over a year (for me) and in her life (for Z), we were getting a good night’s sleep.   We enjoyed two and a half years of good sleep before Miss Z began to experience sleep problems again late last year, caused mainly by poor health. Sliding back into the pit of sleep deprivation has reminded me of several things I had almost forgotten:

Sleep is essential for quality of life – hers and mine.  

Everyone claims to be tired these days. It almost seems like a status thing. But research has repeatedly shown the importance of a good night’s sleep. Sleep is necessary for a child’s healthy growth and development. According to the US National Heart, Lung and Blood Institute, deep sleep triggers the release of a hormone that promotes normal growth and also boosts muscle mass and helps repair cells and tissue.   It is also critical for performance. A Harvard study found that people who slept after learning a task performed better when tested. Other studies have found that sleep deprivation can degrade reaction time, communication, attention and mood by 20-50%.  Miss Z has Everest-sized developmental mountains to climb. She needs every advantage to help her on this process. And that includes being well rested.  And as her parent, I am climbing that mountain alongside her. But sleep deficiency can change brain activity, making it more difficult to make decisions, solve problems, control emotions and cope with change. Basically, it disrupts the skills that are most critical for me in order to successfully advocate for Miss Z. Sleep deprivation is also linked to depression and other mental health issues. This is important because many parents of children with special needs struggle with depression, anxiety and other mental health issues.  With all the research showing how important sleep is for our kids – and for us – why is it not a greater priority? After all, it effects our very development, wellbeing and happiness.

A lot – if not most – children with special needs suffer from sleep problems.

According to a study done by the UK charity Scope, children with a disability are more than twice as likely to have problems with sleep as other children.  The causes behind these sleep problems are as varied as the children themselves. Sleep issues are commonly associated with some disabilities, other times the problems may be behavioral.  Whatever the underlying cause, exhaustion is the one thing that unites most parents of children with special needs. 

If you are a sleep-deprived parent of a child with special needs, there is very little help out there.

Most advice for dealing with sleep problems in children with special needs seems to be along the same lines as the advice given by the baby sleep ‘experts’: establish a bedtime routine, put the child to bed tired but not asleep, make the bedroom a calm environment, etc. Frankly, while they’re all good suggestions, none even begin to address why Miss Z isn’t sleeping at night. 

If the help and advice out there for Miss Z is scarce, it is nearly non-existent for parents suffering sleep deprivation. Yes, my husband and I take turns and divide the night between us, but that doesn’t address the problem when Miss Z wakes 5-10 times a night and can cry inconsolably for up to an hour in the middle of the night.  We have access to respite services, but not overnight respite. Miss Z’s doctors are sympathetic, but offer little in the way of solutions. There seems to be a professional expectation that she will always be a poor sleeper, and as a result, we will always be exhausted parents – that’s just the way it is.  

Miss Z’s sleep problems feel like a burden that we are expected to bear on our own.  This needs to change.  Medical professionals need to see sleep as an important issue – both for our children’s development and also for the quality of life for the whole family.  As parents, we need to stop viewing our exhaustion as some sort of symbol of dedication to our children or how tough we are. Instead, we need to push harder for it to be taken seriously; for those supporting our families to understand that sleep problems affect our very quality of life. 

I accept that not every sleep problem has an easy answer or a quick fix, and in some cases there may not be a ‘fix’ at all. However, dismissing sleep problems and leaving children and parents to suffer them does no one any good.

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