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Sleep, sleep, my kingdom for some sleep

Sleep, sleep, my kingdom for some sleep

Sleep.

I remember a time when I used to sleep.

I remember a time where I’d be able to sleep 7-8 hours in a row, uninterrupted.

I remember a time when I used to share a bed with my wife.

Around six years ago, not long after Jude’s 1st birthday these simple pleasures that you take for granted, suddenly came to an abrupt end.

As a baby, Jude slept pretty well. Within a few months, he was sleeping through and had a regular 8pm-7am routine. We thought we’d cracked it. We’d passed one of parenting’s first tests, and now we could expect him to happily sleep through for the rest of his life……

Then one night he woke up after 2 hours, screaming hysterically and didn’t go back to sleep for another 3-4 hours after that. That was fine, it was obviously a one off. Maybe he wasn’t feeling too well. Then it happened again the next night. And the next night. And the night after that. He seemed unable to sleep for more than 2 hours in a row, and we couldn’t figure out why.

You turn to friends and family who are quick to offer their advice.

“He’s probably coming down with something”

“It’s just a phase he’s going through”

“You haven’t left him to cry for long enough”

“He’s probably teething, he’ll go back to normal soon enough”

Etc, etc, etc

This was pre-diagnosis, around the time we were starting to talk to doctors, so of course all of this advice seemed to make perfect sense.

Our perfect routine, of 11 hours sleep disappeared. Jude was now getting around 8 hours, spread across a whole day, whilst we were lucky to get 3 or 4. Even though we’d take it in turns to look after him in the night it was impossible for the other to get any sleep. Jude’s hysterical crying was loud enough to keep up the whole street, let alone one of us a couple of rooms away.

Whenever Jude would wake up it was as if it was from the scariest nightmare a 1-year-old could possibly have. He would be hysterical, frantically scanning the room for something unknown, all the while with tears streaming down his face. Any attempt to comfort him was no use. Being non-verbal, there was no way of us communicating to understand what was making him so upset.

I remember feeling really guilty about how loud he must be for our neighbours. Their sleep must have been ruined every night just like ours. Although, thinking back, the way he was screaming I’m more surprised at how unconcerned the neighbours were and that they never called the police!

After Jude’s diagnosis, we began scouring the internet to find out more about autism, and we realised that this problem may not be as short term as everyone was telling us. Sleep disorders are extremely common in children with autism. Research has shown somewhere between 40-80% of children with autism have difficulty sleeping. For us, it felt like the word ‘difficulty’ didn’t quite do it justice!

There are many reasons put forward as to why children with autism have difficulties sleeping, and Jude seems to tick every box

A failure to understand social cues can be an issue. Other children might respond to seeing their brother go to bed, and realise that is what they should be doing too as it is night-time. Social cues aren’t one of Jude’s strong points, and he is only too happy for Tommy to go to bed so he can get undivided attention and some peace and quite.

Anxiety can be a factor…… Jude definitely has problems there.

Increased sensitivity to outside stimuli…….. huge issues with this too.

Research also shows that people with autism may produce reduced levels of melatonin, the hormone which helps us regulate our sleep cycles. This can be countered by taking melatonin in tablet or liquid form. We’ve been trying this with Jude for the last year with varying results. It worked perfectly for the first few weeks, then began to be hit and miss. The doctors increased his dosage, and again it worked at first, but with less frequency. Melatonin seems to help Jude wind down and fall asleep, it just doesn’t seem to help with keeping him asleep.

Over the last 6 years, we’ve had many different sleeping patterns to deal with

  • We’ve had the fall asleep before 9, awake by 11, go back to sleep at 5am stage.
  • We’ve had the sleep for 2 hours, awake for 2 hours, sleep for 2 hours, repeat stage.
  • We’ve had the no sleep before 3am stage.
  • We’ve had the fall asleep at 11, wake up a 2, self-harm like crazy for a couple of hours, go back to sleep at 6am stage
  • We’ve had the fall asleep at 8:30, wake up at 7am stage…..this has happened once in the last 6 years!

In between all of this our second son, Tommy, arrived. Tommy decided to not really sleep for the first 9 months, and we thought our lives were over. He would wake for his feeds in the night and then be awake for an hour or two after that. Getting him to sleep was difficult every night, and he just seemed to need less sleep than you expect babies to have. Then, luckily for us, he began to sleep through, and apart from a few odd nights, has slept through ever since (fingers crossed, touch wood, please, please don’t jinx me)

The most impressive thing is that he has also somehow managed to sleep through Jude’s loudest, craziest nights, despite his room being only a few feet away. Not once has he woken up through the noise that Jude has made. I wish I had his ability to sleep through.

Jude wakes up continuously throughout the night, every night. If you catch him quickly enough you can get him to lay down and he will go back to sleep, but if he is awake for more than 2 minutes, you know it will be at least 3-4 hours before he will drift off again. For our own health, and sanity, we had to make a compromise, so, one of us sleeps with Jude every night. This way when he wakes up we can try and encourage him to lay down again straight away. It also means that one of us can get some sleep, especially as Tommy will be up early the following morning.

When you spend the night with him he is constantly moving around in his sleep. He stretches out his legs, feeling around to make sure that someone is there with him. He kicks me in his sleep all night long, trying to get comfortable, and to be certain I’m still there. Often he will wake up, sit up, pull an arm around him and lay back down again. When I try and get out of bed in the morning without waking him I need the skills of a cat burglar just to make it out of the room. It’s usually in vain as he wakes and tries to keep me in bed with me or within half an hour of me leaving he will wake up anyway.

When others talk to me about sleep they often will say something like “I need my 8 hours sleep every night, I don’t know how you survive?”

Well, there are two answers to that question

  1. What choice do we have? You have to do what you have to do. There have been days/weeks where I’ve felt exhausted, but what else can you do but get up and carry on?
  2. You get used to it. I feel worse when I do get some sleep and then suddenly go back to waking up through the night, than I do waking up night after night. It becomes routine, and your body finds a way to manage. I used to get wound up listening to other parents who would moan about the 1 night’s interrupted sleep they’d just had, and how tired they were. But now I get it. When you get to sleep through every night it’s a shock to the system when you have an interrupted sleep. When your sleep is interrupted every night your body adapts

Don’t get me wrong, you’ll often find me on the way to work snoring, head-butting the window of the train, drooling as I’ve passed out. When I get to work I might be in a zombie-like state for periods of the day, desperately trying to be productive, and fight off the desire to close my eyes.

I also feel like I’ve aged 15 years in the last 5. I was always the baby-faced one, getting asked for ID when I was 25 going into a bar. Those days have disappeared, my eyes now heavy bagged, dark circled and wrinkled.

Besides our own complaints of feeling tired, the effect it has on Jude’s health has always been our main concern. Lack of sleep can cause an increase in aggression, behavioural problems, and irritability. Whenever Jude has a really bad night’s sleep, the following day is usually one fraught with periods of self-harm and over-anxiety. We all know that some days when we’re tired we can be short-tempered, erratic, and feel over-stressed and touchy.  So I understand how he struggles to cope on days like that, and why his day turns into one long meltdown after the other. He can’t process that feeling of over-tiredness, and spends the day trying to regulate himself.

I hope as Jude grows older his sleep improves. If he can sleep more then maybe it will help him be less anxious and aggressive. I hope that one day I won’t have to share a bed with him in order for us to get through the night. It’s ok for now, but eventually we’re going to have to tackle that transition. Right now I’m choosing my battles, and this is one I’m saving for another day.

And maybe, just maybe, if he sleeps more I’ll stop aging at such an alarming rate too….

 

 

 

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18 Comments

  1. Helena Loughlin
    September 7, 2015 / 9:12 pm

    I work with Autistic children every day although they can be challenging they are remarkable children whom I really enjoy the pleasure of working with….

    • James Hunt
      Author
      September 7, 2015 / 11:44 pm

      Good for you Helena, they certainly are challenging but remarkable children. The more you enjoy being with them, the more they will enjoy being with you 🙂

  2. September 7, 2015 / 10:57 pm

    Hi James,
    I’ll confirm the baby face from your Archway days. Thanks for the education about autism, it’s been an eye opener.
    I wish you and your family the best of luck for the future.
    Michael

    • James Hunt
      Author
      September 7, 2015 / 11:46 pm

      Ha Ha Michael, definitely made me LOL, the good old ‘Archway’ days seem like an eternity ago!!
      Thanks for the kind words and for taking the time to read it. Good luck to you and your family too

  3. Lucy Tang
    September 8, 2015 / 1:22 am

    I woke up tired this morning and then read your blog and thought how selfish I was being. Things in life are all relative and everything needs to be put into perspective and you certainly did that to me James. Thank you for sharing another insight into Autism and educating me – I don’t know what more to say but have read this out to mum too whose here with me in HK for 2 weeks and we just simply send you masses of love

    • James Hunt
      Author
      September 10, 2015 / 12:21 am

      Thanks Lucy. I hope all is well in HK!
      Nothing selfish about being tired, just because I might get less sleep doesn’t mean you can’t be tired too 🙂

  4. Nadia
    September 9, 2015 / 4:58 am

    Are there any studies or statistics on how sleep may change with the transition to adolescence or adulthood?

    • James Hunt
      Author
      September 10, 2015 / 12:19 am

      There’s a few studies that I’ve found online but no real concrete statistics about the transition into adulthood. It does seem to still be common in adulthood too though. There are lots of different recommendations/ideas to try, just like there are for autism in general!
      Right now the main thing is when he is waking up he isn’t as upset and angry as he used to be.
      Still tiring, but at least he’s relaxed 🙂

  5. Annie
    September 28, 2015 / 2:23 am

    Hi James, my son had night terror for a period of less than a year. I know how you feel..for me its like falling asleep and then a few hours later jump out of bed when hearing loud crying and screaming and things flying in his room…try to comfort him or lie with him until he fall back to sleep and hope and pray he does not wake up and cry again. On suppliment, Taurine has been helpful to keep him (and me ) asleep and its real safe. Check it out. What seem to solve the issue since about a year ago is cranialsacaral treatment, I have a real good therapist. All the best and love reading these, give me strength to carry on and feeling blessed at the same time!

    • James Hunt
      Author
      September 28, 2015 / 10:09 am

      Thanks Anna. That’s really interesting advice, I will definitely look into it and try to find out more about both.
      Glad it’s given you some extra strength, always great to hear that! I know whenever I need a boost, reading about others really helps me too 🙂

      • Annie
        September 28, 2015 / 5:38 pm

        We tried two Cranialsacral therapists, the first one is a complete disaster, it did almost nothing to my son and almost traumatized him (when he refused, it was forced on him so he cried almost the whole time). The second worked like charm, my son loves the therapist (a master in this area), he never force anything on him and always only do what he allows him to do. He said a membrane in my son’s head is very tight and he helped relaxed it over a few sessions (prior to that my son crave to be squeeze in the head area). It worked really well, except the first few weeks of adjusting he has been sleeping well ever since! all the best! (p.s during the adjusting period things got worse actually, so taurine came to the rescue: )

        • James Hunt
          Author
          September 29, 2015 / 11:28 pm

          Thanks Anna. I will definitely look into both, and see what is available near to us

  6. October 6, 2015 / 9:25 pm

    I never knew that having autism can affect their sleep so much. That must be really challenging especially hard in those days you didn’t know and were trying to find what was wrong. It’s hard to cope with no sleep I really hope you get some catch up zzz’s soon and glad you are finding answers now too. Thanks so much for linking up to Share With Me #sharewithme

    • James Hunt
      Author
      October 7, 2015 / 11:29 pm

      Yes, neither did we, but learnt about it very fast! It can be challenging, but you adapt and find a way to get used to it. Thanks for reading 🙂

  7. October 7, 2015 / 12:44 pm

    WOW That must be so hard for you all. Those sleep patterns all sound as difficult as the next. I really hope that his sleep improves in the near future and… I think you’re looking good on it mate 🙂 #bigfatlinky

    • James Hunt
      Author
      October 7, 2015 / 11:28 pm

      Ha ha thanks! It’s been a long road with the sleep issues, but like I said after a while you get used to it! It’s actually harder when he sleeps well for a few days and then has a bad night 🙂

  8. November 27, 2015 / 9:35 pm

    Such an amazing post James! And I really don’t envy you! I need couple time and i also need a decent amount of sleep to function. Hayden being any worse than he already is on a night would be incredibly hard to deal with! Thank you for linking up to #spectrumsunday i really hope to see you again this week xx

    • James Hunt
      Author
      November 28, 2015 / 12:37 am

      Thanks Clare. It’s amazing how you can get used to functioning on not much sleep when you do it for a long time! Yes, I’ll be back:-)