I’ve been meaning to write this post since the first time I shared what a #sleeplessnightwithautism actually looked like in our household on Instagram… Prior to that public share, family and friends hadn’t really seen the picture of what one of our very typical nights without sleep looked like. As I had explained it to folks, sharing that when Luca would wake up in the middle of the night, there was no other option than to give him the iPad and wait it out, the very common response I would get was that the screen was keeping him awake and I should just let him lie in his bed until he fell back asleep. When I would share about Jack’s sleep walking, that it could be upwards of four or five times a night, and worst when it began with a night terror, the common response would be to not let him sleep walk, and to lock him in his room until he grew out of it.
Let me clarify a few things, right off the bat. We sleep trained our twins, just like we slept trained their neurotypical little sister. Alex has slept through the night since she was 2 months old. It just wasn’t our luck with the boys.
The twins were small at birth, Luca was borderline premature, but they didn’t want to separate them, so neither were in the NICU. They remained peanuts, which I do believe effects children’s ability to sleep through the night, because full bellies definitely make it easier.
During the first few months trying to breastfeed twins, I would get as little as 30min naps in between each session. One twin would take about 30 minutes to feed, then I’d have to put him back into his rock’n’play, and rock him with my foot as I fed the other twin for another 30 minutes. After I would get them both back to sleep, I’d have to pump for 45 minutes, and as the twins fed on a 3 hour cycle, it would give me 30-45 minutes if I was LUCKY when all was said and done, to nap before I started all over again.
Now, yes, Steph would and could help. But after the first couple of weeks, when she was back at work, it was nearly impossible for her to. She was on high ladders painting all day, doing physical labor, and making strategic decisions - all things that you cannot do on the lack of sleep (trust me, I know), so I took on the brunt of it, only tagging her in when I needed her.
It did get easier once I stopped breast feeding, and switched to bottles, removing the need to pump, and giving me longer sections of an hour and a half to two hours in between sessions. We had tried sleep training at 4 months, but they were so adamant with not wanting to do it, that I simply couldn’t handle standing outside the door while they cried. I chalked it up to that they weren’t ready. We tried again at 6 months, and same thing. Finally, at 10 months, our amazing nanny at the time said, '‘I can’t watch you do this any more. You are a zombie, and you deserve to sleep.” The twins didn’t need to be getting up to eat any longer, and could at that point make it through. She wrote out instructions, explaining that I was to put each twin in their crib, say I love you, shut the door, go pour a glass of wine, and then text her to hold myself accountable. It was torture. Jack stood up crying for 57 minutes straight before he caved. Luca just laid there and played until he fell asleep, but Jack fought it tooth and nail. The second night, Jack only fought it for 42 minutes, and the third night was under 30 minutes. Finally, on night four, he fell asleep by the 15 minute mark. It had worked. I was about to get sleep again.
The twins were great sleepers in their cribs for an entire year. If they woke up in the middle of the night, they would eventually put themselves back to sleep. But as I was pregnant with Alex, and we were trying to think about making that transition to a family of five, we thought the boys would be ready for big boy beds. Jack had been climbing out at this point, onto his night stand, giving us a heart attack each time, and we knew we needed a crib for Alex, so we bit the bullet. Steph got them a gorgeous set of matching twin beds, and we made a big deal about it as the summer started. We had two months to get them used to them before she came.
But that summer was when the diagnosis was official, and many of the characteristics that come with autism were starting to become more recognizable - including what we now call “sleepless nights with autism”.
Those two months before Alex came were excruciatingly hard. Steph and I would each take one twin, reading them stories, and then laying with them in bed with the lights off, sound makers on, etc. We had tried to make sure we ran them around every night to make them tired before bed, we removed screen time, we worked to fill their bellies and have a really strong bed time routine. But nothing worked. We couldn’t lock them in and let them figure it out, because it became WWE and was always moments away from an ER bill. Even when we laid with them, both Steph and I would get punched, kicked, scratched, jumped on - you name it. I can remember going to work, and worrying someone was going to be concerned about the bruises and scratches make-up just couldn’t cover up. When they asked me at my physical if I felt safe in my home, I explained I was more than safe with my wife, it was my 3 year old twins that gave me pause.
This went on even after Alex was born, except the night time routine got harder. I’d have to feed Alex while Steph tackled the twins solo, and then as soon as she was fed, I’d switch so she could have some time with her before putting her to bed, and I could take the “tough shift” with the twins. There were nights I didn’t make it back to my wife in our bed until after 11pm. We weren’t getting any time together, and truthfully, we were pretty miserable. Even after I’d get them to bed, Jack would inevitably have a bad dream or wake up and sleep walk needing me to put him back to bed after only a few hours sleep. Fortunately it was usually right before or right after I’d feel Alex, but still…. it was starting to become unbearable. We even thought about splitting the twins up, giving one of them Alex’s room, and then dealing with it when she was old enough to realize she didn’t need to be sleeping in our bedroom any more. We figured we could strip the rooms of everything that they could hurt themselves with (joked about padding the walls), and then try the “cry it out” on big kids method everyone kept telling us was our issue. This didn’t solve the issue.
But then something magical happened. The boys turned THREE years-old. You know what they could take when they turned 3? MELATONIN. Our PC told us to give them each one pill, play in the playroom for about 20-30 minutes to get any extra energy out, and then head upstairs for bath-time routine. By the time we got them into the bath, they looked like zombies, so we hustled to get through shampoo, soap and toothbrushes, and by the time pajamas were on, covers were pulled up to chins, eyes were shut and our jaws were on the floor. LEGIT on the floor. In a matter for 45 minutes, our twins were passed out.
Now let me insert a few key things to think about with Melatonin. It’s all natural. SO many people need it. It’s non-habit forming, and ya’ll - when I go to buy it at the pharmacy, they are ALWAYS out of stock. So for all ya’ll trying to pretend you aren’t giving it to your kids- stop playing. You aren’t helping any one. Let’s be REAL about the situation. ESPECIALLY for children on the spectrum. Melatonin is one of the more commonly used sleep tools out there, and one that for us, was a life-saver.
That first night, after we put Alex to bed shortly after, I was able to sit at the dining room table with my wife for an hour, eat dinner, and have a conversation. We hadn’t talked like that in months. This started to become our new routine with this incredible new freedom, and I swear, saved our marriage from possible demise because there was no way anyone could have survived the way we were operating.
Jack’s sleepwalking continued, and around when Jack turned 3.5, he started having night terrors. We think it has something to do with his greater awareness and understanding, because he began to become more anxious. He’d wake up screaming around 9:30pm, and it could last anywhere from 1-5 minutes. This never really woke Luca, because he was “used to it” we thought, but we learned after he got his tubes in, that in fact, he just couldn’t hear him. Once those tubes were in, it became problematic. As you’ve seen if you follow me on Instagram at @twinningwithautism, is that when Luca is up, he is up. It can take him 3-4 hours to be able to get back to rest.
I started to research night terrors, and learned of something called “The Lully”. Unfortunately, they’re on their way out of business, or I’d share it here, because it completely cured Jack of his night terrors, but the science behind it is interrupting the circadian rhythm as they fall deeper and deeper into sleep. The melatonin worked so well on Jack, that it almost sent him into that deep sleep too quickly. Approximately 20-25 minutes after Jack would fall asleep, The Lully, which was a mechanical device plugged into the wall that sat under his mattress would vibrate until it felt a movement reaction. It wanted to wake him ever so slightly so that he moved on his own, interrupting the fall into deep sleep. Within two weeks we saw 70% less night terrors, and by a month in, they had basically disappeared. I will say, that on the days we forget to do it, or don’t get the timing right, he will have a night terror, at which point I just prepare for a tough night- but we’re keeping up with it for the time being.
Our sleepless nights with autism have been more frequently during age 4, because the twins are growing so quickly. Each time they go through a growth spurt, we see more sleepwalking from Jack, and more frequent episodes of night time hangouts from Luca. When Luca gets up in the middle of the night, he will wrestle himself in bed until he’s figured out he just can’t go back to sleep. We’ve tried to give him more melatonin, we’ve tried to not give him an iPad - but he wakes the whole house up, we’ve even tried putting him in the car and driving him around until he would fall asleep. CRUCIAL problem with that last one, is usually it’s me driving him around, and not necessarily safe to do on my lack of sleep. So I’ve learned what works best for he and I is to go to the guest room downstairs, get him a snack to fill his belly, give him his iPad on low light and low volume, and even put a movie on in tandem, riding it out until his body can rest again. Sound miserable? It is, haha, but it’s all we can do right now. It’s not his fault. His brain is going a mile a minute when it happens. Typically it’s when he’s getting sick, going through a growth spurt, learned something incredibly interesting/inspiring the day before and just needs to learn more about it on his iPad, or when something traumatic has happened the day before and it’s upset him to where he can’t sleep - OR, his brother woke him up with sleep walking and now he can’t sleep again. The joys of sharing a room.
Lessons for those going through this, or something similar?
All kids are different, and so are their sleep cycles. If you have a kid who sleeps through the night- kudos! Don’t rub it in, and don’t judge another parent who isn’t getting sleep. If they ask for your advice, cool, but otherwise, keep it to yourself, smile, and find the best empathy you can muster.
If your child is having night terrors, and research it further if you aren’t sure, consider the method the Lully provides. Message me and I can connect you with more research, but it made a world of difference for Jack!
If your child is of age, and on the spectrum (or not and just having a hard time with falling to sleep) talk to your pediatrician about melatonin. It was a GAME CHANGER for us. And for those of you using it and pretending your not- you aren’t helping anyone. In this case - open your mouth, share the truth, smile, and muster the greatest amount of empathy you can.
The good things that come with this lack of sleep?
Last year, I wrote a book, about surviving the first year after diagnosis. It took an entire year, but every morning when I was up for a few hours at a time, I wrote a chapter (or two) and accomplished a personal dream. (Not published yet, was told I needed to establish an audience - so thank you for being here and helping me inch closer to this dream becoming a reality.)
I’ve seen more sunrises in the last year than I had in my lifetime combined, and each time I see one, it reminds me of when my wife proposed at sunrise, one cold September morning, on Race Point Beach in Provincetown, MA. It was a magical moment, one that I don’t remember the details of, but that the same muscle memory of watching that sunrise brings me back to, warming my heart to the 100th degree.
I’ve shown up, for my family, time and time again, for what they need, when they need it. It sounds silly, but it’s something that matters to me. I’ve made sure my wife doesn’t feel what sleep deprivation feels like unless necessary. I’ve made sure to not shame my kids when something out of their control is keeping them from the rest they need.
Lastly, I’ve learned that if I can do this, if I can function in all capacities of my life, undergoing what is used as a significant form of torture in some countries, then I can do anything I set my mind to. That every action I take is a choice - and mine alone. Despite how FLIPPING TIRED I AM, that feels pretty amazing.
My view this morning, March 1, 2020 - no filter…
Not quite sure who will read this, as it’ll get posted at 6:30am on a Sunday morning- not a great time to attract readership, and for most who don’t know what it’s like to have a child up in the middle of the night, I would assume this sounds like whining. I promise you, that is not my intent. My goal in all of this is to spread awareness around autism through the eyes of our journey, and THIS… THIS is DEFINITELY part of our journey.
Let’s just hope that they either grow out of it - I’ve heard at age 5 it settles down but who knows if that will be our case - or I get really amazing at operating without sleep. :) PRAYING for the first one.
Enjoy your Sunday ya’ll! And hey… leave a little love if you could. I could use it today. If you don’t want to share this post on social media, I completely get it. But if you’re enjoying the blog, and think someone you know might enjoy it too, I’d truly appreciate a share of the main site: www.twinningwithautism.com. Thanks in advance! And sweet dreams… xo