The S Word

Deciding to write a blog post on sleep when you’re wide awake at 2.30 am with your child probably isn’t my smartest move ever. But here goes.

Sleep. A basic human right, yeah? Not for us Special Parents. Most of you reading this who are parents, will probably know something of sleep deprivation and what it does to you mentally and physically. But that usually ends at around three years old, if you have a mainstream child (and I can say this with some confidence as I have two mainstream children too). However, for various, often very complicated mental and physical reasons, most children with special needs have issues with sleep.

Our son has had major issues with his sleep pattern since the age of three. Because of the high anxiety issues associated with his autism, even at eleven years old and using two kinds of medication, he is still unable to go to sleep by himself. He still needs me to lie with him every night (yes, that’s every single night folks) and perform his strict nighttime routine with exact precision. I will not bore you with all the intricate and bizarre details of this, but it is a lengthy process. Even if I have a night out, this routine still has to be performed from scratch on my return.

Last night was particularly bad as it is half term and anxiety is higher, as he is out of the comfort zone of his regular routine. It was around half eleven when the routine had done the trick and he was asleep. Obviously resulting in me not having any kind of child free down time, that all parents crave (and actually require for their own sanity).

At approximately 1.45 am he is awake again and asking to watch YouTube. Ten minutes later he is playing Mr Tumble re runs in my ear and an hour later, here we are still. Being a Special Parent is a tough gig, but this particular part is the toughest.

Technology does help: it’s lovely to log onto Facebook and find friends in a similar situation and have a little on line natter. However it can also be incredibly lonely and desperate. Knowing that the majority of eleven year olds and their parents are fast asleep and pondering why you have been denied that particular human right. For years.

It’s really hard for us to smile and sympathise with parents of toddlers when their children are teething or poorly, when sleepless nights are regular part of our life. And will be for the foreseeable future.

Tomorrow is a school holiday and I’m taking the girls on a day out. So I’ll need to be full of energy and enthusiasm. I’m sure I’ll manage it, as I’ve had eight years to perfect the art. But by the time it’s tomorrow evening I’m sure I’ll be flagging.

Well I can sense a change in my little fella’s breathing and it’s looking like he might drift off to sleep, so I’ll sign off and hopefully catch some zeds myself. Oh no, scratch that. He’s awake again……

 

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D Day

I can remember the day well – July 17th 2008.  Our boy was three and a half years old.  Finally all the months of observations and assessments had come to an end.  The wonderful paediatrician to which he had been allocated had enough evidence to give him a formal diagnosis.  By this point I knew in my heart that he had autism.  At first I was adamant that it was verbal dyspraxia, as he ticked all the boxes for that (actually he has only just received a diagnosis for this condition too, some eight years later) but as time progressed it was quite clear that he was autistic.

To be perfectly honest, it was a relief. It was actually ‘nice’ to have a word to explain why my boy didn’t talk.  Why he flapped.  Why he threw tantrums and did all his other bizarre things.  Something to say to the random strangers staring at him in the supermarket.

Now I was in the club. I could join the groups, meet the mums, the Specialist Teachers and all the other children just like my son.  And that truthfully felt good.  The more I threw myself into it, the more comfortable I felt with having a disabled child.  There was a whole world out there for him, for me as a mother and for our whole family.  And I was off to find it.

Shortly after his diagnosis, I took him along to a group for autistic children and their families. They were showing a film from a visiting mobile cinema.  I walked into the hall and there were around fifteen children watching the film, lounging around on bean bags.  Then all of a sudden one of them would jump up and flap with excitement.  Just like my boy did. Then another would run up and try to touch the screen…..and nobody batted an eyelid, not even the siblings.  Because it was what they were used to.  What they lived with.  What they had grown up to accept.  I was so happy I could’ve cried.

For years I had watched my boy do his quirky little things, make his noises and dip in and out of his own world. I had really struggled to send him to mainstream nursery with children who were speaking fluently and maturely and joining in socially with their peers.  Despite the best efforts of the staff, he stuck out like a sore thumb and that really did hurt.  It clearly wasn’t the right environment for him.  But now he had the diagnosis,  it was the passport to special school and so much more help and therapy.  It was the start of his journey.

Welcome to the jungle

Let me tell you a bit about our boy and his journey.  He was born at 40 weeks after a textbook pregnancy.  We conceived him straight away and his birth was quick, natural, and I did it all in four hours flat without pain relief.  I was literally the proudest woman on earth and when I met our 8lb 10oz bundle of joy, I could’ve literally popped I was so happy.  In fact I cried happy tears for about three weeks afterwards – I have never felt love like it.  He was a happy baby and fed well and slept through at three weeks old (which is totally ridiculous given the problems with sleep he was to develop later in his life!). I know others struggle in those first months, but in absolute honesty they were the happiest of my life – I really felt that this was what I was born to do.  I know how smug this all must sound, but that was truthfully how I felt.

He breast fed well and reached all his physical milestones on time, or even earlier.  He was an extremely attractive baby and was born with his trademark mop of blond hair.  Things were all going great guns until his peers started to develop language at 18-24 months. He just never seemed to want to communicate through speech.  It didn’t really worry me until his two year check with the Health Visitor.  She put him on recall because of his lack of language and also because he was not interested in the building blocks or jigsaw puzzles she had brought.  He was always a book worm and loved nothing better than sitting with his huge pile of books and studying them in great detail.  I really didn’t think anything of it – I just thought he was going to love books like his dad.

The weeks and months passed by and still no words emerged.  He did actually start to produce a couple of animal noises, as toddlers do, but this was very short lived.  He started to go to a local play group, which he seemed to enjoy.  But still no language appeared.  Then after playgroup one day, the leader mentioned to me that she was quite concerned about his lack of speech.  I was hurt initially, but I know deep down that it was the best thing that she could have done, and because of her early intervention we were able to start to look into it. And for this I will always be grateful to her.

The Health Visitor did more checks and referred him through to speech and language therapy and eventually to a paediatrician.  The deep seated sick feeling that perhaps my beautiful boy was not ‘normal’ was gradually rising up in my belly each day. He had several long assessments at a Childhood Development Centre.  Basically a team of professionals would watch him play, whilst noting things down on their clipboards.  It was hideous and I hated every minute.  They were all lovely, kind and understanding but I slowly felt that I was being sent somewhere I really didn’t want to go – the Special Needs Jungle.

 

 

 

Sad days

 
Let’s face it – we all have sad days.  But I think it’s fair to say that us Special Parents have more of them than most.  Whether they were born with it, or it was acquired due to an accident or illness – our children have a disability.  And that hurts.  Really hurts.  Every day.  When you see them struggle to achieve the simplest task, or to communicate, or when you look at what mainstream children their age are up to, it hurts.  And perhaps the worst thing that you have to deal with is the fact that it is for ever.  It’s not going away. You are going to carry that pain around for the rest of your life.  Yesterday a friend posted this quote on Facebook – it totally summed up what I was feeling.  We have to carry that pain around for ever.  And that in itself is life changing.

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But it’s not all doom and gloom.  Some days it’s a lightweight, cool, designer bag that you can just sling over your shoulder.  But on other days, like yesterday, it’s a massive suitcase full of rocks that physically drags you down.  Here’s to more designer shoulder bag days xx

And we’re off…..

I’m Jo. And this is my first blog. It’s something that I’ve been wanting to do for a very long time and now I’ve finally decided that the time is right!

I’m forty years young and the mum of three wonderfully fantastic children. My oldest child is severely autistic and that’s what this blog is going to be about: how being a special needs mum has changed my life absolutely and utterly. Inside and out. For the better and for the worse.

I’m hoping that my musings will be really cathartic for me. I am really looking forward to finally getting the thoughts that have been whizzing round my head for the past decade down on paper. I’ll pre warn you that some of my musings may be sad. But some will be funny and heartwarming: that’s just how we roll in the special needs world.

Welcome to my crazy life!