How We Helped our Autistic Daughter Sleep Through the Night After Years of Severe Sleep Deprivation

If your child does not sleep through the night, you are going to love this article! Until very recently I was lucky to get four or five broken hours shut eye…

Anyone who follows this blog will already know that severe sleep deprivation has been a major part of mine and hubby’s lives the entire time we’ve been parents. I’m not just talking about a few months here and there when the kids were tiny, I’m talking not having an entire week of unbroken sleep in over eight years. I’m sure most will agree that is a very long time.

sleep through the nightPrior to our eldest daughter Polly’s autism diagnosis in 2015, we honestly thought we were just clueless parents, convinced that we must be missing a trick. We had to be going wrong somewhere along the line. Why did everyone else’s kid sleep through the night but not ours?

There’s no way to dress it up, right from birth Polly was a terrible sleeper. We didn’t know any different though, and took it on the chin in those early days. Things got really bad for us when I was heavily pregnant with our second daughter, Clara. After a hideous night of almost no sleep at all, I went to work and cried my eyes out, begging my old boss to let me start maternity leave a few weeks before I was due to.

By the time our new baby came along we were dreading the sleep side of things, and totally expected the worst

Fortunately for us we were blessed with an incredible sleeper. With no intervention from us whatsoever, Clara was getting a solid twelve hours by the time she was three months old. Polly however was up every night, seriously distressed, having monumental meltdowns. Her behaviour during the day was beyond challenging, and I look back on this time with immense sadness.

Everyone was miserable and it was definitely a turning point for us as a family. I went into frantic mama bear mode. Having suffered with gastro problems myself as a child, I became convinced that Polly’s issues were linked to allergies. Turns out I wasn’t entirely wrong, because just before her third birthday she was diagnosed with a food intolerance list as long as your arm. Cue two years of strict exclusion diets, as well as our third child.

The clean eating certainly helped, but it didn’t solve Polly’s sleep problems. By the time Freddy came along we’d read every website and parenting self-help book we could get our hands on. No matter what we tried nothing seemed to help Polly sleep through the night.

sleep through the nightThat is until our first autism assessment, where we heard two words that would change our lives: sleep hygiene

This term had never come up in anything we had previously read, but it instantly felt like we were being handed a gift. Sleep hygiene is essentially a series of bedtime (and for us nighttime) habits that need to be set in place and stuck to rigidly. It sounds so simple, but let’s face it, especially in hindsight, it always does.

The reason I feel qualified to share our experience now, is because we’ve been doing these things for more than two years and have ruled out any happy coincidences. I can put my hand on my heart and say that they definitely work.

Create good sleep hygiene, to help your child sleep through the night, using these steps

“Figure out a bedtime routine that suits everyone, and stick to it like glue.”

Our paediatrician Dr. K’s words now sound like a complete no-brainer. Trust me though, having sat on both sides of the fence, I know how hard it can be to devise, implement and adhere to a routine. With the best will in the world, life gets in the way doesn’t it? The thing about a sleep problem, is that it really needs to be given top priority within the family. When your child is sleep deprived, so are you, and we all know that it’s a form of torture.

sleep through the nightGive yourself at least three months to put these steps into place, without expectation or changes to the schedule. We started seeing improvements in Polly after the first week, but once we’d been at it for three months real progress was evident.

Things to consider before anything else

Creating a good sleeping environment is just as important as the routine itself. A dark cosy room, which isn’t full of distractions is a must, especially for children on the spectrum whose minds can be more difficult to quiet at the end of a busy day. Polly had her own room for years, and our younger two shared, but we moved her in with Clara about a year ago and it improved Polly’s sleep even further.

Something we hadn’t banked on was that sometimes Polly was waking in the night because she felt lonely, and now that she has the presence of her sister in the room that isn’t the case.

The girls adore their bunk beds and devised a rota among themselves for who sleeps at the top so there are no arguments. They agreed that Polly could go first as she’s the eldest, then after one week it was Clara’s turn, then Polly, etc. During the first week they actually decided they liked the Polly up top/Clara at the bottom set up and have not been arguing about swapping.

For those considering bunk beds for children who have a fairly small age gap, and will find any excuse to argue, I can highly recommend thinking about a rota.

Things to do before bedtime

It’s easy to say keep stress to a minimum, but it does massively impact the witching hour. In my experience stress has always been the number one trigger for meltdowns during bedtime. The trouble is, once stress hormones have been stirred up, it can be very difficult to get your child to go to sleep.

sleep through the nightIf there’s one thing I’ve learnt, it’s that calm is the most important factor in getting a decent nights rest. Even once a child is asleep, the quality of that sleep will likely be poor if they’ve stressed themselves out beforehand.

My children usually watch a film in the early evening, and we don’t allow small screens past 5pm. We have at least half an hour, if not longer, downtime between the TV going off and the kids going to bed. This allows them sufficient transition time from one task to the next.

Things to do during bedtime

I take my hat off to those who have multiple children of varying ages, and manage to stick to a routine at the exact same time every single night. For us we aim for certain things to happen within a time frame, but with the best will in the world it isn’t always possible.

We also find with our kids that a routine will work for a few months, then things will start sliding and need to be changed. We have structured our evening quiet time around playing LEGO, colouring, doing jigsaw puzzles and reading stories. At the moment they are enjoying meditation sleep stories in bed, which help them relax before dropping off.

It’s also vital that Polly gets to tick everything off her mental check list before going to sleep, otherwise she feels like something is missing. She needs to have fresh water in her bottle, she needs to know the details of what will be happening the sleep through the nightnext day, her hair has to be tied up in a certain way, and she absolutely must get goodnight kisses from the entire family. It took us a long while to realise that not ticking everything off her list was causing her serious anguish.

Things to do for night time wake ups

The million pound question for us c.2015 was what to do in the middle of night when Polly woke up distressed for whatever reason. The answer was getting to the bottom of what she needed and finding a solution as quickly as possible.

When we started out, Polly was waking on average ten times a night, often having bedtime-like meltdowns in the small hours. We were advised by Dr. K to silently guide her back to bed, without interacting with her, even if it took all night. My husband and I were absolutely dreading this, and the first few nights were indeed horrendous, but by the end of the first week we saw a massive improvement. By the end of the month we were astonished at how far we’d come, and by the time we had hit the three month mark she was consistently sleeping through the night for the first time ever.

Nowadays Polly only wakes in the middle of the night if she needs the toilet, or has had a scary dream and wants some comfort. I honestly cannot remember the last time she was up for more than fifteen minutes in the middle of the night.

An overview 

Bottom line is, if your child is a poor sleeper, you are going to be sleep deprived which adds an extra layer of difficulty to your days as a parent. Here are my biggest tips to help your kids get some Zzzzz’s:

  • eat a healthy balanced diet of real food
  • rule out any medical problems
  • limit small screens, especially in the hour or two before bed
  • ensure their sleeping environment is comfortable, a good quality bed is an absolute must
  • keep stress to a minimum
  • structure your bedtime routine around doing quiet activities to wind down
  • read or listen to stories while your child is in bed
  • make sure their mental checklist has been completed
  • meet their needs in the night quickly with minimal interaction

Best of luck mama’s and dada’s. I hope you get your child sleeping through the night in no time! 

How to Help a Child with High Functioning Autism 

How to Help a Child with High Functioning Autism Regular readers will know that my eldest daughter Polly was diagnosed with high functioning autism in June 2015. You can read more about our diagnosis here if you like. To say that we’ve been on a steep learning curve ever since would be the understatement of the century. As it’s world autism awareness day, I thought I’d share some of the things that have helped us, as a family, come to terms with the wonderful world of autism. Hope you find this article useful.

Love, acceptance and early intervention

It should go without saying that unconditional love is at the foundation of my family. Even through the tears, fights and explosions, we love each other fiercely, and that counts for a lot. If I’m completely honest, I had a deep gut feeling that Polly was autistic years ago, but fearing the great unknown, was completely in denial about it. By the time she was diagnosed, I had already done a lot of accepting, and grieving for the life we wouldn’t have.

I don’t view Polly’s diagnosis as a label, far from it. I see it as a necessary part of getting her as much help as she needs, as quickly as possible. Without knowing that she is autistic, hubby and I might not have taken the stance to home educate her. Without the diagnosis, we probably wouldn’t be as forgiving of her anger or meltdowns, because we wouldn’t understand what drives it. I’ve written before about meltdown triggers. Knowing what we’re up against means that we can either avoid potentially difficult situations, or prepare for them in advance to relieve some of the stress and anxiety for our girl.

Children with high functioning autism often appear to be just the same as everyone else their age. Girls in particular are exceptionally good at masking their difficulties in public. They’re not the same though, they need more understanding and support than most other kids, and the earlier you can intervene the better. Although it’s nice to say that the world will just have to accept our kids as they are, I don’t think this will prepare them particularly well for adulthood. They will have to be independent one day, and our job as parents is to equip them as best we can with the tools they need to navigate the minefields in their way and thrive.

Polly looks for near constant reassurance – from her family, friends and anyone else she comes into contact with. I’m starting to see that a lot of her sadness comes from her feeling like she isn’t getting it, or isn’t getting enough of it.

Good sleep hygiene

At the time of diagnosis, Polly was waking up ten times throughout the night as standard. I’m not quite sure how we managed to survive those days to be honest, looking back it doesn’t seem possible. We invested a lot of effort in getting our girl to sleep better. No one thing was a magic bullet, but creating a bedtime routine and sticking to it like glue has really helped us.

We always have TV or a film during dinner time, because it keeps the kids at the table and focused on their food. That goes off at least one hour before we walk upstairs. During that hour we have quiet time: Lego, reading, drawing, colouring. Excitement is kept as close to zero as possible. When we go upstairs we read, and have meditative sleep stories running while the children are dropping off. This whole process is of course significantly easier when my husband is around. When he isn’t, I improvise, but stick to the routine as best I can. 

When Polly was still waking multiple times every night, we would silently guide her back to bed, via the toilet if she needed it. We were advised to not interact with her at all if she woke during the night. This took about a week to start noticing a difference, and was a tremendous positive for us. Polly sometimes sleeps through these days, and if she wakes it’s usually only once to go to the loo.

However, during times of heightened anxiety she finds sleeping very difficult. Also some nights she sleeps all the way through but wakes up looking like someone dragged her through a hedge backwards. She fidgets a lot, and we suspect that her quality of sleep is pretty poor. It’s a far cry from two years ago though, and if nothing else, I’m very grateful that the middle of the night meltdowns are behind us.

Children need their sleep, it’s as simple as that. We knew that we only had capacity to deal with one thing at a time, so poured all our energies into this arena directly after diagnosis, and I’m glad we did.

Some basic do’s and don’ts that I live by

how to help a child with high functioning autismDon’t waste time fretting about the future. This is so much easier said than done, and parents will always worry about their kids. However there is a line to be drawn somewhere. I came across a great quote recently which made me think about this in a different light. ‘Worry is interest paid on a debt you might never have.’      

Don’t promise something you aren’t intending to deliver on. Our biggest meltdowns come from Polly thinking a certain situation will go one way, but it ending up going another way. If she doesn’t have time to process the change, it sends her world into chaos.

Don’t threaten a punishment, but do give an immediate consequence if certain behaviours warrant one. As soon as something becomes grey, it causes problems for us. We had to work super hard to help Polly understand that her violent behaviour towards her brother and sister was unacceptable. The way we did this was by issuing an immediate consequence if she caused them physical harm. You can read more about it here if you like.     

Don’t get too hung up on what you think your child(ren) ‘should’ be doing. It is said that comparison is the thief of joy, and when it comes to swapping notes about kids I would 100% agree. By comparing our own children, or our kids towards others, we are doing them a massive disservice. We are all different, and should be treated individually.        

Do give your kids a loving push. As the amazing Temple Grandin says, we should never stop giving our kids on the spectrum a loving push. Gently easing them out of their comfort zone is a great thing, because they will need to live in this complicated overwhelming world without us one day.  

Do encourage a physical activity. Polly did gymnastics lessons for two years, which helped immensely with core strength and slight hyper mobility. When it became clear, towards the end, that she wasn’t enjoying it very much we knew we needed to find her something different. She now goes to jui-jitsu, and it’s doing her just as much good as gym class did. There are certain obstacles that come up, such as not enjoying standing in front of everyone during grading, but overall she’s really enjoying it. There’s a lot to be said for feeling the fear and doing it anyway. 

Sensory activities

to help a child with high functioning autism

We had a blast at the Lego Store in London recently!

Kids on the spectrum often greatly benefit from sensory toys and activities. We make the following easily accessible for our children to play with whenever they want to.

Play dough: No introduction necessary. Click here for my super easy no bake recipe, which will save you a fortune over the years.

Play foam: This brilliant sensory toy is thousands of teeny tiny Styrofoam balls connected together with a non-toxic glue like substance. The kids can pinch it, twist it, pull it apart and fiddle with it until their hearts are content. Play foam was instrumental in helping Polly to stop pinching her brother and sister.

Kinetic sand: Polly loves to bake, but some times it’s just not practical. We might not have ingredients, or we might already have a full cake tin from yesterday’s efforts in the kitchen. At times like this, kinetic sand comes in particularly handy. It never dries out, doesn’t smell and doesn’t create as much mess as play dough.

Lego: This timeless classic is a must in any house and makes a wonderful family activity. I love watching my kids use their imaginations, and problem solving skills when they’re building their masterpieces. Lego is also great for the development of fine motor skills. Our box of Lego gets played with every single day.

Home made play slime (video recipe below)

Clean diet

When Polly was two and a half, she was diagnosed with a huge list of food allergies. We put her on a strict exclusion diet, and after a few years most of them are thankfully now a thing of the past. The one that has stuck has always been the worst offender: corn, which comes in many guises. In fact there are almost one hundred corn derived ingredients that are often given scientific sounding names. Corn is exceptionally cheap to produce, and high fructose corn syrup (HFCS) is sweeter than table sugar. Can you see where I’m going with this?

HFCS is sneaked into so much processed food, that it made not cooking from scratch near on impossible for us. It was a huge chore at first, but I now see it as a blessing in disguise. It opened my eyes to how much rubbish, especially the sugary variety, is in most pre-made food. Nowadays I wouldn’t feed it to Polly if you paid me, because it makes her bounce off the walls. Don’t get me wrong my kids aren’t totally deprived of sweet things. They eat plenty of home made treats, made out of real ingredients such as nuts and dried fruit. 

I know there is much said about putting autistic children on a gluten free, dairy free diet but unless you are making the food yourself, I’m not sure how much benefit you’d see. The trouble with processed GF/DF foods is that they are often loaded with unnecessary ingredients. Don’t be seduced by fads, and always do plenty of your own research. I would personally advocate cooking more food from scratch if you aren’t cooking much at the moment. I know it can feel like an impossible task, and trust me I’m no stranger to fussy eaters. Small baby steps are the only way to make a long term difference. Start out with easy wins, have a look at my healthy treats Pinterest board if you’re in need of inspiration.

Some of the books that have helped us (google them to learn more)

Autism… What Does it Mean to Me? by Catherine Faherty

Today I Feel Silly and Other Moods that Make my Day by Jamie Lee Curtis

Ellie Bean the Drama Queen: How Ellie Learned to Keep Calm and Not Overreact by Jennie Harding

The Huge Bag of Worries by Virgina Ironside and Frank Rodgers

All Cats Have Aspergers Syndrome by Kathy Hoopmann

Love Bombing by Oliver James 

The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross. W. Greene

Ultimately, high functioning autism is a journey for the entire family. Wishing you the best of luck on yours ❤️

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