It is estimated that 85% of kids with FASD have sleep problems (Chen et al., 2012). Luckily in my house, we are currently at a rate of 50%. The problem is that, while M2 sleeps like a champ, M’s sleep is horrendous. Now, I have been complaining about his sleep since he was an itsybitsy baby. I don’t think anyone at that point took my complaints seriously. Ah, a new mom complaining that her kid doesn’t sleep enough, sounds serious, right?! Except since the very beginning, M had trouble sleeping. Well, not the very beginning. In his first few days with us, he slept all the time. In fact, we were told to wake him to eat. He would sleep through night if we let him. Shortly after that, he started vomiting all night long, and he was diagnosed with pyloric stenosis. We haven’t had a good night sleep since.
As a newborn, he only slept a total of 11-12 hours a day. And not much has changed, he maybe sleeps 12 hours total in a day now which is within the normal range for a toddler. The only difference is that he was happy on his 11-12 hours of sleep when he was an infant. Imagine a 6 month old that we couldn’t get him to nap, he was almost always awake from 7am – 8pm. Happy as a clam, playing and babbling on. People would always comment on how “alert” he was. I just wanted him to take a freaking nap so I could get a few things done during the day. I spent hours and hours reading books on how to get kids to sleep. Sleep lady, “no cry sleep”, etc. Some of it lead to temporary fixes, but none of it really has fixed our problem. We don’t have trouble getting him to go to sleep at night. It is the staying asleep that is the problem. We are often up 2 or 3 times a night with him. Nearly every night.
The books will tell you, you are creating a crutch when you help your child fall asleep. They need to be able to wake up in the night and just put themselves back to sleep. Even though our bedtime routine works like a charm, I thought that maybe that is the problem. We are influencing the environment too much and he needs to figure out how to sleep without any help. I will admit, that in desperation, we tried a “cry-it-out” method. You know, the ones where you go in and soothe the baby every 10 minutes until they fall asleep. They tell you it may take a few hours the first night, but then it will get better. Our first night, it took 8 hours and then we gave up. It was 5am. I had to at least get a few hours sleep before the next night. I gave up around hour 5 on night 2 and then we were done with “cry-it-out.” Obviously, this method works for neurotypical children with no sleep issues. I think M just felt abandoned and he has almost zero ability to “self-soothe.” He needs me and G as his external brain for sleep transitions.
I can tell you that when we first expressed our concerns about his night waking, people often suggested it was night terrors. This is because from about 10-18 months, when M woke up in the middle of the night, he would scream and claw at himself and his clothes seemingly totally unconnected to us or anything concrete. If we tried to pick him up, he would claw at me, struggle in my arms, try and climb to the top of my head by grasping and pulling himself upward. The sight of it was disturbing. This was not a child waking in the night asking for a bottle or to be rocked. He was distressed. That phase subsided for the most part, mostly because of language development. It was truly the first stage of his sleep disturbances.
Right now our bedtime routine, is dinner, bath, books, bed with his blankie, a cup of milk (I know, I know, teeth…) & white noise. Most nights, it goes well. He quickly drifts off to sleep. We’ve recently added the “Rabbit Who Wants to Fall Asleep” audiobook to our routine over Christmas when dysregulation hit a peak. Now, it seems to be very soothing to the kiddos as they drift off.
Currently we deal with a few major sleep disturbing issues: night-terrors, the night diaper conundrum, and god-forbid, some outside noise wakes him up. The night-terrors are the best of the scenarios. They really only bother us. I run out of bed to hear him struggling with some unknown terror for a few minutes and then he settles back into regular sleep. I lose sleep, but he does not. Really, best case scenario in our world.
Then there is the night diaper conundrum. We potty trained about a month ago. Mainly because, diapering had become such a struggle. M did not want to wear a diaper. If I could distract him, I could usually change him with little to no trouble. But if I had to interrupt him, even with careful transitions, he would get so distraught it would become a wrestling match. The scratching and punching got to be too much and potty training was on my agenda for my Winter break from school. Potty training was a breeze. He was excited that there was a diaper alternative. But now, he doesn’t want to wear a diaper at night. Not only is it a struggle to get a pull-up on him, he will usually just take it off sometime in the night. He doesn’t currently have the impulse control to not take it off. Typical with FASD, rewards do not work. There is an obvious natural consequence, i.e. waking up wet, and of course that doesn’t help. He doesn’t understand consequences either. So now, he either wakes up because he has to pee (last night that was a 2 hour ordeal because now he is tired, awake, and alert enough to not be able to return to sleep = meltdown) or he wakes up in a wet bed distraught that he peed the bed and is now awake = meltdown. I am still trying to find a solution. Maybe he will get used to the pullups but more likely, he will just learn to stay dry at night as a function of age.
We live in a city, by choice. Many of our neighbors in our diverse urban neighborhood love fireworks. Christmas, New Years, Halloween, really any holiday, is a cause to celebrate with fireworks for hours at a time in our area. Drives the dogs nuts and wakes the kids up. Yes, fireworks are illegal in our area. It doesn’t stop people. The city bus stops 100 ft from our house with its squealing breaks runs every 10 minutes until 1am and then starts up again at 5 am. The police, firemen, helicopters, etc. all permeate the quiet of our hilly urban surroundings. There is no end to the noises that may wake M up. This is by far the worst. When he is roused from deep sleep, it is like unleashing an animal. At least now he talks rather than just wailing and pummeling us. Now its, “leave me alone!” “don’t leave me!” “I can’t!” “pick me up!” “no, you are hurting me!” This can last for hours. We use white noise, but only so much works when sirens go wailing by.
Then there are the times when we have no idea what wakes him. Sometimes, he falls back asleep peacefully in minutes comforted by only our presence. More often, it is a struggle. With the sensory issues, M is often wanting us to comfort him but unable to be held, “stop hurting me!” or sung to, “you are too loud!” or rocked, “Whoawhoawhoa!”
Of course, I can’t just let this be our pattern. I don’t think any pediatrician would put a 2 year old on sleep meds nor do I want to go there just yet. I’ve been warned about melatonin. But this kid needs help sleeping. I need sleep. G needs sleep. Our current brainstorms for solutions include building an enclosure for his bed to block out more light and sound, working harder at coming up with solutions to the night time pee problem, and keeping a record of his sleep patterns so that maybe when we write it down there is an obvious solution.
Chen, M. L., Olson, H. C., Picciano, J. F., Starr, J. R., & Owens, J. (2012). Sleep Problems in Children with Fetal Alcohol Spectrum Disorders. Journal of Clinical Sleep Medicine : JCSM : Official Publication of the American Academy of Sleep Medicine, 8(4), 421–429. http://doi.org/10.5664/jcsm.2038