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.

Special Needs – Inside Out

‘Mummy, are you channelling Anger or Disgust right now?’

‘I think Daddy…. Is it Anger?’

‘Mummy, Alex is mainly Sad now, isn’t he?’ (His top lip was wobbling, so I thought probably yes).

Which got me to thinking, has Alex got them all?

You’ll remember that Riley, as a baby, started out with just Joy, who was joined by Sadness and those were the only ones she needed for a while.

Alex, in his sometimes still quite baby-state, had he developed the rest?


Alex has Joy in abundance.

Sometimes I think he feels the whole world is just there to entertain him!

Which, you know, it does.

He delights in the world my little boy.

Toys that squeak and make a noise… going to bed nightlights that play music… everyone who tickles him… splashing in the pool, in the bath…all make him laugh.

And he still – still! – sometimes laughs so hard he falls over backwards.

He is the sunniest of children.



Unless… something upsets him.

Then joy turns to… ‘Waaaaaah!’

Loud noises can upset him… being told off very very firmly can upset him…. Food not coming quickly enough upsets him (though that just makes all of us laugh, which probably doesn’t help).

Waking up in the middle of the night with what I can only assume is a bad dream makes him sad… not feeling well understandably makes him sad.

Not. Getting. The. Out. Of. Reach. Toy.

Makes him Sad.

But we are able to make him feel better.

We can cuddle him, stroke him, tell him we love him, find that toy, feed him quicker and Sadness leaves.

Which is (ssssh!) quite, you know… normal.

But then, beyond those two…


This is primarily directed at anyone trying to make Alex do his physio.

I’ve lost count of the number of times he’s brought out of school accompanied by, ‘He got very angry at me today because we were doing physio!’

By angry, Alex gets very, very red in the face and cries.

But there are no tears.

He’s not upset just really, really annoyed.

And that’s OK with me because – annoying as it is (and it really is) – it’s a developmental stage, a connection; if I do this, they may stop trying to make me do this.

They don’t, but I like his thinking.


Alex walks beautifully holding on to both of my hands.

If I try to take my hand away, he stumbles, desperately trying to find my hand again.

That’s Fear.

Should I try and get him to slide out of bed when he can’t feel the floor with his feet he will slip and slide very slowly.

Very carefully.

Until he connects with the floor.

That’s fear.

He knows that he doesn’t feel safe.

He may not get that it will also hurt if he mis-steps, if he falls, but he realises when he doesn’t like something, when it makes him unsure, and there’s Fear (and a little caution).


Only one word needed here: broccoli.

The Things That Upset You As A Special Needs Parent

Just because my child is disabled doesn’t mean I can’t sympathise with you.

There is a feeling, I think, that, because I have Alex, anyone else’s troubles are insignificant – trivial in the face of my life… and his life… and where we may be headed.

If you want to complain that your child isn’t sleeping, I’m happy to hear this.

If you want to tell me you’re worried that they don’t know their colours yet or are late to walk or that they say their, ‘y’s, oddly… I’ll listen.

If you want to talk about the fact that they just won’t stop talking, or moving, or making a mess and never giving you a minute’s peace and you’d just like a break… I’m happy to lend an ear.

Because. I’m human. Because. I can empathise. Because. Your problem is my problem.  And my problems are your problems.

What I find hard to hear is, ‘Oh, I shouldn’t be complaining to you’, or, ‘Anyway, you don’t need to hear this’ because, although I utterly know it’s said with the best intentions, what it actually feels like you’re saying is: ‘Oh goodness, your life is so much harder than mine, really this is trivial, I have no reason to moan (you, on the other hand, really do)’.

And I have to tell you that I count my blessings every day.

I love my son.

I love that his is a sunny disposition… that if he’s upset I can usually figure out what is wrong…

That when he’s ill he wants cuddles.

That he tries – every day – to move his little body the way he wants it to even though it doesn’t always want to cooperate…

I love that his sister and he have the most amazing bond.

I love that he makes us laugh, I love that he is as he is.

And though I can’t honestly say hand on heart that I don’t wonder how he would be – where we would all be – if he was a typically developing 5 year old – I do wonder if he would be this same delightful boy.

And this journey of ours has taken us to places I never would have visited and we’ve made friends – good friends – I never would have met.

One thing I’ve learned from having Alex is that the moment you enter another person’s world you see that there is always something… a wayward sibling, a dying parent, an ill spouse, a redundancy looming… something to worry about.

For no-one’s life is ever perfect.

The parts of your life that are upsetting to you are the parts of your life that are upsetting to you.

This isn’t a competition.

So talk to me.

And I’m so happy to listen.

Eating… the Delayed Development Way

I remember asking my Health Visitor how you wean a child who is blind? And she told me that you did it just the same way as you do a neuro-typical child.

As it turned out of course, many, many other factors would come into play to make Alex’s eyesight the least of our worries.

So far down the pile it is – behind inability to walk and talk – that sometimes I’m genuinely surprised to see a note from his school that his visual impairment teacher has been in. But I digress. We started with baby rice (yak!) and moved through to baby porridge, so far so good.

But it turned out Alex had an aversion to a) certain textures and b) chewing. It’s effort Mummy.

So my freezer filled – and filled – with more puree’d and mashed food than I had ever done with Emma.

Night after night I did this as it was impossible to do it during the day.

My fridge covered in meal planners – 2 cubes chicken casserole, 1 cube broccoli (lucky boy) – weeks in advance.

Nursery was a godsend as suddenly it wasn’t just me doing all of this and their kitchen staff were brilliant – never too much trouble to mash/ blend/ serve something else if he just couldn’t manage.

Often he’d use his tongue to help mush it in his mouth. Or pop his thumb in his mouth to help.

It wasn’t pretty, but it was going down.

Delayed development meant his mouth muscles just weren’t there yet and, it turned out, he was too busy just trying to sit upright – there was no cognitive space left over to chew as well.

It was just like trying to pat your head and rub your tummy.

And then he was able to sit up independently. And suddenly, after what felt like an age of puree’d mush, of buying jars to take with us so we could go out somewhere as a family, little cubes of food became an option.

And little cubes became bigger cubes and suicide watch became less of an everyday occurrence (as, yet again, he’d choke on a piece of overly optimistic-sized meat) and he was able to eat every day food cut up into normal sized pieces.

In one of those moments of development not working in isolation… as those muscles improved he was able to make some sounds.

My little boy ‘spoke’. I heard his voice. I cried.

He’s babbling you understand, streams of nonsensical noises ‘dubbuh-dubbuh-dub’ being a particular favourite of mine, but there he is. In the room. Joining in the conversation as only Alex can.

We have a long, long way to go. Alex can finger feed beautifully, but he doesn’t always know when to stop, so you have to watch him the whole time to stop him over-stuffing.

He will pick up a loaded spoon or fork, but hasn’t yet worked out how to dig back in again for a refill. Sometimes he’ll just throw the fork down after taking the food.

This requires patience from us. And a lot of spoons.

But at the back of my mind as I watch my nearly five year old boy being spoon fed, flapping inappropriately, flinging his sippy cup across the floor and I know that – to an outsider – this must seem a ridiculous life to lead…

I am immensely proud of my boy. And I’m proud of my family too. For riding it out. For accepting him for who he is. And for helping make it happen.

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.

Making Provisions

And then I obsessed about dying again. Cold sweats. Because who would look after Alex when I was gone.

Who – when sometimes the effects of his disability drove me to distraction, made me want to give up, but I didn’t because he was my son, because I loved him to distraction as well – who would do that for him instead of me?

Who would find the compassion needed to understand what he was trying to communicate?

Who would care enough to change him, undress him, bathe him?

Who would take the time to find out what made him happy? Not just now, not just with cute smiley little-boy Alex but later, with grown up man-boy Alex. Probably not so cute.

This is a grieving process I think most parents of children with additional needs go through. In the usual scheme of things all you can hope is that you give your children the life skills, the toolkit, the confidence to get on and make their way in the world.

But with Alex… he’ll always be reliant on the kindness of strangers.

Throughout his life.

Because as his mother, I can only take him so far. I will get old, unable to lift, brain addled and I will no longer be able to fulfil that role.

There was a time that thought had me in floods on the floor. Now it just makes me misty eyed as I type.

This is life. This is how it is. I cannot change it.

Railing against it makes no difference. All I can do is put in controls and hope the world will love him as we do.

So we re-did our wills with a discretionary trust for Alex. And with that came a sense of calm.

They contain a detailed care plan, clear direction as to how we would like Alex to be looked after. We didn’t want anyone trying to second guess us.  We wanted no grey areas.

This is what we want done, this is how we think you should do it.

Please include Emma at all times. But don’t make her do it by herself. Because that is too much for anyone to carry by themselves.

I thought of detailing our care plan, but actually, everyone is different, and everyone will do it a different way.

So I don’t know how helpful it will be.

What I would say is: Don’t put it off.

Get this thing done. I can’t sugar it: after my initial consultation with a very lovely solicitor I cried in my car, as my lovely friends who I texted saying this was so so hard to do and who texted back saying ‘we know, and we’re sorry’ know only too well.

But the relief of This Thing Done is palpable.

If you live in the UK Cerebra do an amazing voucher scheme where they will put £350 towards solicitor’s fees.

Our solicitor capped their fees at the voucher level. Which was lovely. http://w3.cerebra.org.uk/help-and-information/will-and-trust-vouchers/ Mencap have a free guide to the different wills/ trusts you can make.

It’s incredibly helpful: https://www.mencap.org.uk/our-services/wills-and-trusts

Undiagnosed Awareness Day

When your child is born with what turns out to be an undiagnosed condition it’s a lonely, scary, fill-it-up-with-your-own-fears place to be.

At the beginning you google and google and google.

You scare yourself witless with the conditions, syndromes it might be. G and I would do this secretly, not wanting to scare the other and it would only be days later that we might discuss what we’d found.

Gently, tentatively, willing the other to disagree.

To take away that gut-wrenching, stomach-falling panic.

You find yourself doing deals with life. Could it please please not be this.

And if it’s not that it needs not to be the other as well.

Tests after tests after tests are done to knock these potential life paths down one by one.

For every test, there is a period of stress laden waiting. Followed by relief till the next one.

Till you come to…. Nothing. And you are released into a world of disbelief.

What do you mean they can’t tell me what’s wrong?

Someone can always tell me what’s wrong.

This is how life is. But not this time.

We all know, we all see, that Alex is not developing as you would typically expect, but nothing in his scans, his genetic make up, his very physical being can tell us what. He is a mystery.

He is #undiagnosed.

Trying to explain this to people can be very very hard.

The answer to ‘What’s wrong with him?’ can be very long-winded… it can be quite tiring… it can throw up thoughts I don’t want to think of and people… well, they hate an information vacuum.

Please don’t try to diagnose him – to fix him – for me.

Please think, just for a second, how this makes me feel. It puts me on the defensive immediately.

We have all the professionals we need. We have asked all the people who have made a career out of this.

They don’t know.

You, after having just met me cannot know. Instead, ask me what his problems are, what his limitations are… ask me what makes him laugh.

See my little boy.

The future scares me. Right now he is the healthiest of boys.

We’ve steered clear of A&E for over a year now and that bout of chicken pox?

He rode it out no bother. There is growing immunity.

But no diagnosis… who knows where he is headed?

In my darkest hours I wonder if I will outlive him.

And I can’t tell you if that is better or worse than his outliving me.

So we remember to enjoy moments. Just in case. We joke that our children are at the forefront of medical discovery.

That they are re-writing the rule books. They are.

Alex is on the DDD study (which delves further into their DNA than ever before) and has been for two and a half years.

No diagnosis. And those that have received one are maybe one of a handful in the world.

But they are a beginning. They will help the parents of the children who come behind us.

SWAN UK banded us together with all the other parents on our path.

Gathered us in to show us we weren’t alone. That it wasn’t just us.

It’s quite hard to explain what SWAN does. They don’t give us money.

They aren’t trying to find a cure. But they educate, help join the dots.

They work with medical professionals to help them learn and understand what it is like to have an undiagnosed child. How to work with parents. How to talk to parents.

SWAN UK send balloons to the children when they are in hospital.

To show them they aren’t alone. And thanks to social media they give the parents a forum to chat, to compare… to laugh at the some time ridiculousness of it all.

To celebrate those inchstones.

To make good friends.

That togetherness makes us all stronger, makes us all more confident, makes us happier.

My son is #undiagnosed 6000 children are born every year in the uk #undiagnosed So many of us wish we had found SWAN sooner.

Our family found them by chance conversation. And we are a brighter, cheerier, more banded together family unit because of it.

Undiagnosed Awareness day helps us wave to more parents, much sooner. Please spread the word.

You can find out more about SWAN UK here: http://undiagnosed.org.uk/

A New Normal

This family I’d dreamed of, what would it be now?

What would happen to our house, our daughter – my marriage?

Would I be able to work?

We, none of us, had signed up for this.

Were we strong enough to do it…Did we really want to do it?

It takes a long time, this journey to, not acceptance exactly, more a reconciliation with yourself.

You have to allow yourself time – time to adjust, time to grieve, time to re-align yourself into this new rather unexpected life.

It does get easier.

I found, at first, I didn’t want to talk about Alex, didn’t want him to define who I am, but who was I kidding?

He is such a part of me, such an influence on the way I am, the way I regard the world, that he needs putting out there every time.

‘My son is disabled’ – I let other people deal with it now, not me.

We have worked our life, woven it differently to accommodate his very different needs, so much so that we don’t even notice it sometimes.

I can no longer look at my life in that ‘Sliding Doors’ fashion – what if?

We are too far in, Alex is who he is and we are who we are.

And this is no bad place to be.

I have more patience now for people, for situations, because I’m aware that what is on the surface is not necessarily all there is.

I wait. See how things develop.

Alex is undiagnosed, which we are comfortable with and don’t think about often.

It’s harder for the outside world, no tick box to place us in.

I – we – are immensely grateful here to our support group – SWAN UK.

Here are the parents of all the undiagnosed children… we fit in.

We talk, we discuss ideas, we encourage those tiny achievements no one else might notice.

But we see, and we celebrate.

Knowing there are other people there in our situation, it’s invaluable, we aren’t alone.

Feeling that you are part of a group, a tribe – it buoys you up.

And with that confidence comes the will to take on the world again.

Slide back – in some way – to that position you never thought you’d reach.

It’s a new normal. But it’s our normal.

Starting School – Not So Scary After All

There is quite the build up to it. As parents it starts a good while before your child’s first day.

Not only is there the choosing, but there’s the emotional build up – my little baby, off to school.

With Emma, our eldest, this was nothing but a positive experience.

She was so utterly ready to go.

You could see she’d grown out of nursery, that she needed more; more friends, more challenges, more experiences.

With Alex, our little undiagnosed boy with his endless list of disabilities…this was a much more complicated transition.

For all of us.

He’d been in nursery since he was one – slowly building up from two mornings to three full days and he quite clearly loved it.

More importantly – for us – they clearly loved him.

His 1:1 championed him, championed his achievements and advocated for his needs – every day.

It was safe, nurturing. It was known.

But school? Good God was he ready for that? My little boy who needs help in every aspect of his life? How could he possibly be ready?

Turns out that he – like his sister – was utterly ready.

It was just us having to catch up.

Having thrived at his mainstream nursery we wanted to keep that connection for as long as possible so we decided to do a split placement.

Alex’s main school is the additional needs school but, every day, usually in the afternoon, he’s wheeled over to the mainstream school – Emma’s school – across the car park and spends an hour or so with the reception children there.

Socialisation – so important.

Something I never thought would happen – my kids, even briefly, at the same school.

I cry just writing it to be honest. It’s been so good for him – it keeps him connected with some of the friends he made at nursery and it – trailblazer that he is – keeps disability in front of the children (and the teachers).

I feel so strongly that the more disability is integrated into mainstream life the less it becomes ‘other’…not scary, just different.

And to the children, he’s ‘…just Alex’.

To the parents who are going through this process for this year, for this year’s intake… don’t be scared.

It’s not the path you’d have chosen, it’s not the path I’d have chosen, but it’s not as bad and scary a path as you’d imagine.

Sitting here, now, I find it hard to see how I got myself so worked up.

His additional needs school is as nurturing, as championing as his nursery.

His teacher and TA clearly want the best for him and will shout as loudly as we do if needs be.

And the opportunities it offers: hydrotherapy, horse riding, an on-site sensory room. All this stimulation is vital for any child’s development, but especially those with additional needs.

It brings them to life.

Alex is pre-verbal, so his way of expressing happiness is flapping his arms and legs whilst having a great big grin on his face.

It’s delightful. This he does both on the way to school and on the way home.

I like to think he’s telling me about his day, how much fun it was, the things the other children did… we talk to him as if it is.

It’s the same conversation I have with Emma – just in a slightly different fashion.