It’s 11.45pm and my gorgeous little boy is still not asleep!

In fact he hasn’t even lay down flat yet.

Yes, I’ve got a bedtime routine in place and have been returning him to bed continuously since 7pm but he couldn’t care less, he’s wired and totally happy running up and down singing to himself or trying to escape over the stair gate across his bedroom door.

I’ve actually given up now and plan to take him for a long drive as that is the only way we can get him to go to sleep.

My husband and I take it in turns to drive our son around in the car each night sometimes driving for hours only to find that he wakes up as soon as we walk through the door.

But even if we do finally get him to sleep it won’t end there because in a couple of hours he will be awake again!  Sound familiar?

This has been our exhausting bedtime cycle for a very long time.

However, fast forward a few months and for the last 16 days (yes, I am counting!) my son is going to bed at 7pm and falling asleep in his own bed by himself!

He will still wake up during the night and is an early riser but life has suddenly become a lot easier for the whole family and of course cheaper as our weekly petrol bill has dramatically gone down!!

So what did we do? Initially, we started by bringing forward the drive slightly earlier each night until we were taking him out in the car for a drive at 7pm every night.  

My son is a very happy, active little boy with lots and lots of energy. He’s always, “on-the-go” and definitely a sensory seeker.

So on the advice of his OT, we started looking at introducing “calming and alerting” activities throughout the day which included plenty of opportunity to be outside to run, jump on his trampoline and climb as well as time to rest using a weighted lap pad whilst using the ipad and / or sitting for snack at preschool, rolling over an exercise ball and applying deep pressure massage throughout the day.

My son is also very easily distracted and in the night we could hear him jumping off his bed and playing with his toys so, we stripped back his room of any distractions.

All wall art was removed, a bookcase which he used to try and climb, the bed frame was taken away to stop him jumping and all toys boxed and put away.  

He loves sensory rooms especially looking at the bubble tubes.

So we brought a mood light and a light up tortoise for him to look at whilst he was relaxing and trying to fall asleep.  

We also attended sleep clinic with a specialist who suggested adding a card next to his bed with a picture of lighting McQueen (his current obsession), some light up stars on the celling and our velvet throw from the lounge which he loves to cuddle up to.  

We kept the bedtime routine short so he could learn each step and would know exactly what was happening next and in turn prepare himself for bed.  

Our routine starts at 7pm every night.

It consists of bath, get dressed, brush teeth, sleepy time and wake up, we use a visual time line to reinforce this message and after each step take off the visual card saying “finished”.  

The whole routine is under 15 mins and we go straight from the bathroom to the bedroom where I cuddle and gently rock him in the velvet blanket before lying him down to sleep.

I started by staying with him until he had fallen asleep but now I leave the room straight away. 

Here are my top 10 tips:

1. Keep a sleep diary – write down when your child was put to bed, how long it took to settle, how many times they woke during the night and what time they woke up in the morning. Don’t forget to include naps and add any additional information e.g. activities, eating & drinking, constipation etc. You may see a pattern emerge. 

2. Make a sleep plan – troubleshoot with yourself or partner and get the whole family on board.

3. Timing – it has to be the right time for you mentally and emotionally to tackle any sleep issues, especially as there are likely to be other goals you’re working towards with your child.

4. Keep the bedtime routine short and at the same time every night – so it is a clear indication that bedtime will be imminent. Tip: if transition to bath time is difficult try introducing blowing bubbles or a special toys to only be used during bath time. 

5. Use visuals – a visual timeline or now and next boards (depending on understanding and language ability), work really well to prompt and reinforce communication / understanding to your child. Try ending the sequence with “wake up” so your child knows they will wake up after their sleep. You could also make a social story and play simple games such as pretending to go to sleep by lying down then waking up.

6. Reduce language – many children on the spectrum have some language processing difficulties so keep language simple and repetitive and leave time for your child to process your requests / instructions.

7. Environment – look carefully at your child’s sleeping environment is it too visually stimulating? Could mood lighting help create a more relaxing environment? Is the room dark enough? Or too dark? Think about the temperature of the room? Is the room noisy? Does your child prefer enclosed spaces?  Tip: if using mood lighting, is the child able to turn it on if they wake in the night, to settle themselves? Think about what thing you will leave in the room and what you will take with you when you go.

8. Out of sight, out of mind – put the mood lighting / pillow / dummy out of sight during the day so the child connects the items with bedtime.

9. Sensory – many children on the spectrum have sensory difficulties and it could be beneficial to request an appointment with your OT who can advise on many different techniques suitable for your child’s sensory needs. For example, alerting and resting exercises, deep pressure, etc.

10. Specialist interests & obsessions – tidy these toys up well before bed time, possibly posting them into a box, bag and then putting them away somewhere safe until the morning.

You can read it here: 10 Things You Didn’t Know About Special Needs Dads 

When I read over it at the time, I thought it just sounded like me rambling about things I wanted to get off my chest.

It was with much surprise then, when I got so many comments back from all around the world. It was lovely to see how much it resonated with so many people facing similar issues.

It meant a lot to me too and reassured me that I wasn’t alone in feeling how I did.

The comments also highlighted just how tough it can be for Dads whose children have special needs and how little support there is for those Dads. As someone much wiser than me once said ‘It’s good to talk’.

I think Dads are much less likely to share their feelings (myself included).

So I thought I’d have a go at some more rambling.

The unanswered questions 

I am so lucky to have two wonderful boys; my eldest is now six years old and profoundly disabled. The cause of his disabilities are still unknown, he’s simply classified as having an unknown genetic disorder.

My youngest son is four, thankfully he is unaffected by this disorder and is a typical lovable and mischievous little boy.

Where he differs though, is his amazing and unconditional love for his big brother.

Ever since he has been able to, he has helped his big brother and cared for him in a way that inspires and amazes his mum and I every single day.

He shouldn’t have to do this, but he just does; its human nature at its very best.

As he’s getting older though the questions are starting to come and they’re getting more difficult to answer.

Not always because the questions are harder, just that his need for answers is growing.

Last week we were sitting together, I’d just got home from work and he was watching some TV and telling me about his day at nursery.

Some of the older kids in our street were outside playing football. I could see him watching them and then completely out of the blue he turned and said to me ‘why can’t my brother walk?’ He’s asked this question before, many times, but I think it was just the context of the situation that hit me so hard.

I could see what he was thinking, I’m sure you can all see what he was thinking, you don’t have to be a child psychologist. The longing in his eyes hit me like a speeding train.

I stumbled over my answer, trying in vain to explain that all children are different. He’s four but he already knows that.

The real question is why? That’s one I can’t answer for him, or in truth for myself. I instantly had a feeling of guilt that I was somehow letting him down. I’m his Dad – if I can’t tell him why something has happened, then who can?

There are so many unanswered questions with regards my eldest son.

Will he ever walk?

Will he ever have meaningful communication skills?

Will we ever get a diagnosis for his condition?

What does the future hold?

Who will care for him when my wife and I aren’t able?

The list of questions is endless and it never goes away. I’rsquo;m in a much better place now. It’s over four years since we were given the devastating news about our son’s condition. No matter how long passes though, the questions are always there and very few are being answered.

The ‘what ifs’ 

Sometimes the most normal of situations can bring all the emotions back to the surface. I say normal, but let’s face it, very little about life with a disabled child passes for what most families class as normal.

We recently got tickets to take the boys to see their first football game. We called ahead just to check on wheelchair access, lucky we did.

It turns out we’d booked the wrong tickets, so we couldn’t bring our oldest boy, at least not in his wheelchair.

It was a health and safety thing, so fair enough; I guess we should have checked before buying the tickets!

Plan B, one of our friends has a little boy the same age as our eldest, so we agreed a kid swap! They’d look after our oldest boy and we would take theirs to see the game.

The ‘What If’ moment happened almost straight away.

Just seeing the two boys together, both as excited as each other, but with our friend’s little boy taking the lead role. The big brother role.

It’s a role that’s reversed in our family.

As we travelled to the ground, I was conscious of all the old emotions rapidly resurfacing.

What if things had been different?

What if our eldest son wasn’t disabled?

This would be the most normal thing in the world. A little brother excitedly holding his big brother’s hand as they started out on a childhood adventure together. I’m sure my youngest was blissfully unaware of all the thoughts rushing through my head but I still worry.

I worry that in his head’s he’s worrying and upset that his big brother can’t come with us and wondering what it would be like to have a normal relationship with his big brother.

Obviously, our eldest boy was not in the least bit annoyed at missing the game; in all honesty it would have probably been a struggle for him.

But as with all things, we fight to keep the normal. What if it was normal all the time?

The void we can’t escape

I’ve spoken to many parents and read loads of articles that describe the sense of loss, the sense of emptiness that you feel as a parent to a child with special needs.

I’ve tried to explain it to other people who aren’t in this position, but I don’t think I’ve ever managed to convey just what it is and I’m not sure if I will manage to now.

‘Void’ – noun – a completely empty space. In lots of ways that word, void, explains how many of us feel on a daily basis. It’s that sense of being robbed of the child you expected, robbed of all of your hopes and dreams.

As my son gets older and time passes, I’m learning to accept his disability.

It does get easier, but the void is still there.

I suspect it always will be; it’s compounded by the unanswered questions and what if moments. I’m on a mission though, to fill the void as time passes.

Regardless of his problems, my son gives my wife and I so much joy. He brings his own special and unique brand of love into our lives and we’re so lucky to have him.

I saw a quote recently that made so much sense: ‘In the hopes of reaching the moon, men fail to see the flowers that blossom at their feet.’ I’m not sure who said it but I think it sums up really well how I’m trying to cope.

I’m trying to come to terms with his disability and learning to have new dreams. Many people would consider his disability a disaster or a tragedy. In many ways that was me and quite often the questions and the what ifs try to drag me back there.

Slowly and surely though, I’m getting there, I’m learning to accept that it’s not a tragedy, it’s just a different life, one I hadn’t expected, but one that can be so rewarding in so many ways.

To all the Dads

I know everyone’s different and people reading this will be at different stages of their journey. Some will be starting out and struggling to see a way past the tragedy.

Others, I hope, will be on the other side, living their alternative life and filling the void.

Whatever it is for you and wherever you are, I hope you have a super Father’s Day with your son or daughter. You deserve it. Ramble over.

Happy Fathers Day!