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Special Needs Parenting: "Sleep" You Say…?

Special Needs Parenting: "Sleep" You Say…?

A hand that maybe points to the headful of grey hairs.

A comment about an unhealthy caffeine intake.

For our children… they sleep differently.

When Alex was born, and we had no notion of what was to come, we noticed he slept a lot.

In those heady days before we barrelled into life with a child with disabilities we were just grateful that our second child slept well, so that we, having just moved, were able to unpack boxes, put up shelves and start constructing our new life.

Looking back, and talking to other families, it’s clear that - had we been more on the ball - that was our sign that something wasn’t quite right.

Sleeping too much, or too little, well, there’s your tell-tale sign.

In fairness to Alex, he kept sleeping well - but not excessively - right up until about 3, and we were so grateful for this.

Because, however bad the day, what new unexpected news was delivered to our door, we knew that at 7 o’clock he’d go to bed and we could… stop. Just for a little.

Then, almost imperceptibly, it went wrong.

We noticed that it was every day, not just the odd night, that he would cry for 3 hours before he went to sleep, our evening ruined, our eldest daughter sleeping in our bed as she couldn’t hear him there.

Or, if he did go to sleep as normal he’d wake at 1, 2, 3 in the morning and scream for 2 hours for no obvious reason.

We found our house locked down as we went to bed early to prepare for the night to come or one of us would drive him round town so the other could sleep.

This was madness. And then it stopped again.

But the following year – in a very cyclical fashion - it came again and it was worse this time because we were both working and Alex was at school and there was no slack in the day for anyone to catch up on oh-so-needed sleep.

Without sleep… anyone with a new-born will tell you that your mind closes down, you can barely function and all the fun is sapped out of your life as you just try to put one foot in front of the other and not shout at anyone.

I started crying on everyone again, a sure sign that things couldn’t continue.

Our Health Visitor once again came my aid and referred us to our paediatrician urgently.

I love our paediatrician as she’s just so practical… and recognises need.

Alex was prescribed, "circadin" - a low dose melatonin.

I know it doesn’t work for everyone, but I’m so thankful that it did for us.

He slept.

We slept.

And life… swung back to normal.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

As Alex Grows Up

Meet Our Blogger

This is, primarily, a blog about our little boy, Alex. He has an undiagnosed genetic condition which has resulted in global developmental delay with a visual impairment. In reality what this means is that although he’ll be 4 in July, he’s non-verbal, he learnt to sit up properly only within the last 6 months and is now a whizz at spinning round on his bottom to reach things and grabs at anything in his reach – safe or not… He needs help with every single every day activity and sometimes his hand/ eye co-ordination is off. It’s bang on, however, should you offer him a chocolate biscuit… He’s a mystery, an enigma and utterly utterly gorgeous. He’s also cheeky. And funny. We've started this page for you to keep up to date with him, watch his progress and track our fundraising efforts.

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