I remember that night like it was yesterday.
February, 2008. I’m with Howie. He’s just a few weeks shy of two years old. We’re at Children’s Hospital. It’s 8 o’clock at night.
He’s being very good as they attach about 20 wires to his head. His eyes are fixated on “Curious George” on the small TV hanging from the ceiling. He starts to squirm a bit – the smell of the glue is starting to get to him. I hold him tighter, telling him it’s almost time for sleep.
We’re there for an overnight sleep study. At almost two, he still had never slept through the night. Not once. And he wouldn’t sleep alone. After a year of trying everything possible to get him to sleep, we’re at the hospital to make sure there’s nothing else going on.
I’m told to hold him in the bed until he’s drifted off. The technician would whisper into the speaker when it was okay for me to move to my tiny bed across the room. We would do this dance 5 times during the night. It was the worst sleep of my life.
The results showed “abnormal brain blips”, so we returned a few weeks later to get fitted for a 24 hour EEG. I was six weeks pregnant with Lewis and beyond exhausted. I held my newly minted two year old down as once again wires were attached to his head. This time, he screamed. We had to restrain him.
Two weeks later, I sat in the presiding doctor’s office. He described the abnormal brain blips as “benign rolandic epilepsy”. He told me to watch Howie when he drifted off to sleep, particularly if it happened in the car. Then he told me it was nothing to worry about, and if we didn’t see a seizure by the time he was 11 or 12, then he would be fine.
Oh, and by the way, it has nothing to do with why he won’t sleep, he said. Just leave him in his crib to cry. If he throws up, clean it up and put him back. He handed me a sheet on how to change his sleep behaviors. To undo what we had been doing wrong.
I remember it all like it was yesterday. His words still make me want to throw up.
To this day, Howie does not sleep consistently.
But now I know better. At the time of our sleep study, we didn’t have an autism diagnosis or even a sensory processing disorder diagnosis. We had nothing but my anecdotal data and the belief that he woke up every time he peed in his diaper. The knowledge that he had to be touching me when he slept. The feeling that everyone judged me because my two year old slept in bed with me.
Now I know. I know that this is not a behavior issue. I can’t “sticker chart” him to stay in his bed all night. Believe me, we’ve tried. He comes in, we bring him back to his bed. I stay until I think he’s asleep, then I wait five minutes more just to make sure. An hour later, he’s back again.
Gerry and Lewis started off in our bed too. Through behavior modification, they both returned to their beds. And they sleep through the night.
I know this is something different for Howie. The melatonin has made a huge difference – it no longer takes him hours to fall asleep and when he does wake up in the middle of the night he goes back to sleep fairly easily. We’re not spending hours at 2am flipping through pictures of Story Land to calm him down.
I know that his diet plays a part. When he eats something that bothers him, he’s up for nights in a row.
I know that sensory inputs are important. He sleeps under weighted blankets and three other covers. He’s in long sleeves pajamas in the dead of winter and the scorching heat of summer. Our house is kept at a constant temperature at night no matter what the calendar says. No windows open while we sleep.
I know that he needs to fall asleep with me there – his arm “tunneling” into my neck on one side and my arm tightly wrapped around him. I’ve given up caring what the “experts” say about sleeping with your kid. I need to do whatever gets us through the night unscathed.
But I can’t always predict the triggers that wake him. And even when he doesn’t wake up…I do. Expecting him to come in at any moment.
After 5 years of this, I don’t remember how to sleep anymore either.
His sleep issues aren’t just a problem for him. It affects our whole family. I can’t remember the last time I got eight hours of straight sleep. Tim and I can’t get away for a night just us. We’re keeping our local Dunkin’ Donuts in business.
There are days when I’m beyond tired. And I’m tired of it.
Every family with a child on the spectrum has pieces of the puzzle that they want solved. For us, our missing piece is sleep.
I just want that puzzle solved.
he's sleeping!
no...he isn't...
“Whatever gets you through the night it’s alright, it’s alright
It’ your money or your life it’s alright, it’s alright
Don’t need a sword to cut thru flowers oh no, oh no
Whatever gets you thru your life it’s alright, it’s alright
Do it wrong or do it right it’s alright, it’s alright
Don’t need a watch to waste your time oh no, oh no” – Whatever Gets You Through The Night by John Lennon
This post was written as part of the Best of the Best, Edition 8: Sleep Issues
Try Defying Gravity 
July 13, 2011 at 10:49 pm
As I read this I just feel tired and frustrated. Thank you for writing about your family in such a real way.
July 14, 2011 at 7:07 am
thank you Jen 🙂
July 13, 2011 at 11:03 pm
I feel your pain… We went through it with Eli and are now going through it with Keegan. For Keegan it’s likely just medical. For Eli it was sensory, medical and who knows what else. And, I’m with you. You do what you do to get by and survive. Sleeping with your child is not illegal and can be mandatory at times.
July 14, 2011 at 7:07 am
ah Heather, I know you know. Both kids is hard. I hope you’re getting some sleep too.
July 13, 2011 at 11:21 pm
Just curious, have you ever thought of a family bed? It may help in the long run. There is nothing wrong with sleeping in the same bed as your children. It could provide some security for Howie to know that he won’t wake up alone, and you are there whether you are awake or not. He could just reach over and touch you and know you are there. We had a family bed with all of my children (for a time), and I know many people through La Leche League (I am a leader) that do have a family bed with several children. You have to do what works for your family.
July 14, 2011 at 7:06 am
We did that for a while when he was younger until I had our third. He actually sleeps better when he’s in his own bed and his behavior is better. But I’ve given up bringing him back there when he wakes up. I just know he’d be back again. So we start him in his bed and just go from there.
July 13, 2011 at 11:25 pm
I wish I had answers for you. My theory has always been that sleep is of utmost importance and we do whatever we have to do in our house to make sure it’s achieved – who cares what anyone and especially the experts think. Trust your mother’s intuition more than anything.
July 14, 2011 at 7:05 am
we are definitely doing whatever works at this point to maximize the number of people sleeping in the house. It’s like a math problem some nights 🙂
July 14, 2011 at 7:15 am
Ahhh, the elusive sleep. We’re working on this with our 4yo. He’s never slept well, even since birth. We also do what we have to do to get sleep, but neither he nor I sleep right anymore due to his sleep habits. Amazingly, the doctors seem to think my idea of a sleep study isn’t the answer because we already have an autism diagnosis. They want to blame the autism.
July 14, 2011 at 7:51 pm
it’s been since birth with us too. Go with your gut if you think it’s something else. My theory is I’d rather rule out the medical issues so I can focus on the whatever-else-it-could-be. I get the neither of you sleep right thing completely.
July 14, 2011 at 8:14 am
We’ve pretty much solved Boy Wonder’s sleep issues but I remember those two years of no sleep. It still shows up from time to time. We did a technique where we went in and woke him up just a little and then he’d go back to sleep. Like resetting his sleep cycle. It worked for us and I was skeptical. I was like you want me to wake him up?
xoxoxo
I hope you get peaceful nights sleep soon.
ooxoxox
Jersey
July 14, 2011 at 7:52 pm
I was just telling my friend about your technique. I’ll have to ask her if she tried it yet. She’s at her end of her rope too. You just never know what might work – thank you for the suggestion!!!
July 14, 2011 at 8:16 am
Sleep is such a primal need that it simply rips us all to shreds when we are denied a regular pattern of it. I remember (no, not really) RM’s first year of feeding tubes, wires, vomitting every 20 minutes or shatting herself – it was years after that all had subsided and she was sleeping somewhat normally that I could begin to on occasion as well.
Powerful stuff, Alysia – you certainly make the point. Sleep. Sweet. Glorious. Sleep.
What the heck is THAT?!?
July 14, 2011 at 7:53 pm
what the heck is that? 🙂 I’m glad you’re getting some sleep now. You deserve it after all that’s gone on.
July 14, 2011 at 9:02 am
You know, I read this at some point between 1.20 and 4 am last night, and refrained from commenting because it would have been at least as long as your post, and far more hysterical. You’re right, the worst of it is that I was awake for two hours while she slept soundly beside me, because once I’m startled I just can’t get relaxed again. Let us make a pact to one day end up in the same retirement home, side by side in recliners catching up on all this missed sleep!
July 14, 2011 at 7:54 pm
deal. And giant “do not disturb” signs on our doors. Maybe we can pee in peace too by then.
July 14, 2011 at 9:57 am
We are at almost 12yrs of sleep issues of some sort or another with one child or another (sometimes a couple at once), it colors everything else in life so much more than I ever imagined. You are right, we have to do what works and forget what anyone else thinks. I remember when our first was born, he never slept more than 20-45 minutes at a time, ever. We were clueless and everyone said to let him cry it out, not to put him in bed with us. After months of that, I gave up and put him in our bed. He slept a full hour. bliss. We never looked back and we’ve put all our babies in bed with us from the get-go until they seem ready for their own space. Our youngest two are 5 and almost 7, they start in their own beds, but both end up with us before morning.
July 14, 2011 at 7:57 pm
whatever works has to be the motto. our kids slept best with us too at first. You have to do what is best for your kids and you so that you’re at your best and forget what everyone else says 🙂
July 14, 2011 at 2:08 pm
I often feel like the victim of an experiment gone wrong…”what happens when you deprive people of sleep long enough” or something like that. And from the comments here and facebook it seems I’m definitely not alone, which is a consolation at least.
Some days, though, it’s so hard to hear about friends babies sleeping through the night at 6 weeks. I smile and try to be happy for them, but on the worst mornings, aw man that’s hard.
I guess we’ll just sleep later…or something 🙂
July 14, 2011 at 7:56 pm
I totally get that! I wonder sometimes if I’m in some weird experiment too. Usually that happens in my most delirious state 🙂
I also hear you on the comparison thing. None of my kids were good sleepers at the start. I would lie about my oldest and his sleep habits. I couldn’t stand hearing how other parents with babies had their kids sleeping. I thought I was an awful parent. I’ve learned to tune it out. It’s very very hard though…
and yes, we will sleep someday. right?
July 14, 2011 at 6:37 pm
I have a non autistic 5 year bed sleeper. I know exactly when and where I went wrong. I also know that there really was nothing I could do to change it. You have to do what you have to do to survive.
I admit – most of the time I LIE.
I don’t need to see people giving me looks or a ton of unwanted advice. We are trying now to get him into his own bed.
This might sound easy but when your son wakes up and gets lost on the way to the potty and you find him in the fridge instead, it makes it alot harder.
July 14, 2011 at 11:11 pm
Are we living the same life?! I empathized with every word you wrote. I keep waiting for the day that I am able to sleep more than a few hours at a time. Having been sleep deprived for 4 1/2 years starts to get to you! Weighted blankets are the only thing you’re doing that we haven’t tried, I keep saying I’m gong to make him one. I really need to get on that. If only I weren’t so tired. 😉
July 15, 2011 at 12:23 am
That is SO hard. I have known a lot of kids with autism who have the same issue. No good solutions. My daughter (not asd, but other dx’s) goes thru stages where she gets up really early and disrupts the whole house until someone gets up with her, so I know how the sleep deprivation feels. I’m sure you tried putting him in a bed next to your bed, but thought I would throw it out there anyway. Good luck, it’s a tricky and tough problem.
July 15, 2011 at 3:03 am
[…] Butler presents Whatever Gets You Through the Night posted at Try Defying Gravity. Alysia remembers back 3 1/2 years when her then two-year old son […]
July 15, 2011 at 8:43 am
Exactly my thoughts on sleep too
July 15, 2011 at 8:43 am
oh and needless to say – I loved your post
July 15, 2011 at 2:30 pm
LOVED this post like you have no idea. I used to scoff at the thought of parents sleeping in the bed with their kids. My have those words come back to haunt me. We’ve tried everything also and subjected him to a sleep study which was one of the worst nights of my life. Now we just deal with it. I would be so happy with 5 hours of straight sleep at this point.
And the neighborhood Dunkin Donuts & Starbucks both know my coffee order by now.
July 15, 2011 at 4:35 pm
I feel your tiredness just reading your post. I feel you. I had those same advice before the diagnosis. But do what you have to and hope that he gets enough sleep too. 🙂
July 15, 2011 at 6:45 pm
Oh, wow, Alysia, I wish I could come and stay with your kids for a night so you could sleep. But it probably wouldn’t help, huh? I hope and pray you get better sleep soon!
July 15, 2011 at 7:19 pm
right there with you,girl. so sorry for all the sleepless nights. my mother often says i’m “sleep depraved.” that’s about right.
July 17, 2011 at 2:03 pm
I totally agree with you on this Alysia. We had 5 years of no sleep with WiiBoy too. I trised the *keep putting him back ti he gets the message* and one night having stayed on this track for about an hour and getting nowhere I gave up. What really got me was that he was crying so long and so much that his nose was runnig and he was eating his own snot. This cannot be right I thought and I took him back to our bed…where I held him tight til he fell back asleep.
This was pre diagnosis too. Eventually after the interventionsstarted to work and some layers of Autism peeled away he started to eat better….and sleep longer 😉
As I always say… all ingood time and stay with the programme 😉
Hope it works for ypou too!
xx Jazzy
July 18, 2011 at 4:54 pm
I honestly can’t imagine this life. Sleep has never been an issue in our house. In fact, no matter how hard our day has been we always know that by 8 pm, it will be over and we can exhale and relax until 7 am the next morning. It is 1 of the main things that keep me sane I think. I can’t offer much help, but I’m here to show support and send hopes and wishes your way that you will find this particular puzzle piece soon.
July 26, 2011 at 9:00 pm
I could have written this post myself. For too many years to count, one of my twins would not sleep through the night. We tried behavioral interventions, melatonin of course (which was terrific for helping him fall asleep, but not STAY asleep). Although I was very hesitant to turn to meds, my entire family felt under siege, so from sheer desperation, we visited a pediatric neurologist who put him on medication. It took a few months to get the dosage right, but he does sleep now.