Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

All about a bed

All about a bed

And it has only been through talking to other parents of children with additional needs that you see this is a common thread.

It’s like they weren’t quite ready to come out yet – they still had some growing and developing to do. Alex outgrew his moses basket in no time.  We noticed he flailed a lot in his sleep then, so we swaddled him up and it worked like a dream.

He seemed to like the security of it.  The closeness.  The contained space. His cot worked fine too.

Here we used the wonderful grobags his sister had had and here began Alex’s long association with his sister’s hand-me-downs – pink and red grobags merged into pink and red quilt covers as we moved him into her old toddler bed.

This was a huge moment for me, for us, Alex was no longer a baby but showed no sign of toddling.  He was our non-toddling toddler.  In his big bed. And it was here that we began to diverge further and further from ‘normal’.

He was ok in this bed so long as he didn’t try to get out.

With no sense of danger we knew Alex would have no qualms about trying to get out.  Although for a while he didn’t.  He would often wake up in the night, but he would just lie there, chatting, stamping his feet till he went back to sleep again.

Then he realised that if he wiggled, he could move himself out of his bed.  On the one hand, this was a huge developmental step, on the other… a bit of a problem.

Not knowing he was safe meant we couldn’t sleep soundly.

Every bump led to us running into his room to make sure he as ok. For a while we got around this by tucking him into his bed extra super securely.  But once he learnt to sit up we knew it was only a matter of time before he worked out how to beat that too.   It was like a super slo-mo Krypton Factor.  Briefly we had a bed delivered by our OT.

Oh god that bed.  I don’t know what I was expecting but… a huge single bed, with a washable mattress, cloth sides to keep him in… it smelt of hospital, of ill, of I don’t want it in my house. Take it away. This is not a boy’s bed.

And just like the book… I sent it back.  Crying. Briefly we had the safe sides bed.

I loved this.

It was beautifully enclosed but still a little bed like.  It made our holidays possible. But he was still a step ahead of us – one day I found him launching himself over the sides with glee ‘Mummy, look at me!’ all over his face and all I could think was ‘Oh.  Oh.  Now what…

So for the next seven months he had a make shift bed on the floor.  He went to sleep on a blow up bed against the wall.  There was a sofa butted up against it that was too tall for him to climb over and a bookshelf at the bed’s foot that was too heavy to push over.

It wasn’t pretty.

It wasn’t the bed I’d dreamed of.

But it worked.

It worked for far longer than I was expecting as the NHS system creaked into action.  We viewed high sided beds, quotes were produced and recommendations were made.

These beds are expensive.

They are bespoke and made in small numbers.  So we crowd funded the money.  No, we didn’t, but it felt like it.  Some amazing friends of ours did a trekking fundraiser for us.   The county council put some money in.  Every county is different in how funding is arranged.   Here the county puts a set amount towards a bed – something every single child needs – and then they go out to charities to help fund the remainder.

Thank you Newlife.

Thank you everyone.

This is his bed now.

A high sided cot with perspex sides and padding at each end.  It was never the bed of my dreams.   Never where I could have expected he’d sleep.  But it is comfortable.

We can snuggle in with him at night.

In the morning when he wakes up we all dive in.

And he sleeps well.

And he is safe.

So we sleep.

That is the story of sleep in our house.

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.

View Helen’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...