There are so many complexities to being a caregiver for an individual with Fetal Alcohol Spectrum Disorder (FASD). Sometimes as caregivers we forget to get curious or are tired or busy until things begin to escalate. Or we get complacent (or hopeful) that when things are going well we can step back a bit. I was reminded of this recently when the maiden came to me complaining about nightmares and not sleeping well.
She has always had trouble with sleep, as do many with PAE/FASD. She struggled with the transition, getting to sleep and getting up. Getting up in a morning was one of our longest standing challenges. I always assumed the trouble getting up was transition from waking, anxiety about the day or because of not getting enough/needing more sleep. We tried many strategies:
- Over the counter melatonin to medication
- Consistent and calm bedtime routine
- Weighted blanket, white noise
- Night light, stuffed animals
- We also tried essential oils which smelled nice but did nothing to help and music or calming sounds had the opposite effect.
I tried many suggested strategies to get her transitioned and out of bed in the morning. Calm voice, singing, making it fun, special treat, favourite breakfast, rubbing her back. I even tried humour. I told her I was going to celebrate with her every morning. She wasn’t impressed. And I did try old school rewards and consequences. Sometimes these worked, most times not for long or not at all. We switched or upped the night meds and I resigned our life to one of no early appointments.
Then in 2019 while getting her wisdom teeth out, the dentist told me she stopped breathing several times. I asked our health care provider to refer us to a sleep clinic. Six months went by, COVID happened and no call. While getting her other two wisdom teeth out at the next appointment the dentist was concerned we had not been referred and he made one. Within a week we were at a sleep clinic. And three weeks later she had a CPAP machine. Up until that point I had no idea she was having breathing troubles. She never mentioned she would wake up or have trouble breathing. I didn’t hear snoring. The waking in the morning was our ongoing struggle, but most said that transitions were hard so I thought that was it. Now I knew why. There was quite a bit of grief on my part that I missed sleep apnea but she didn’t blame me. And she adapted to using the machine easily.
We were told it would be 3 months of use before we saw any improvement. We were told she would have more energy, her mood would improve and she would get up easily. It was probably a year before she started getting up easier. There hasn’t been noticeable changes in mood or energy – but maybe because we have been in the pandemic all this time? I used to receive daily reports from the CPAP Machine APP, advising me how her sleep was. They were always fine. After a while I stopped checking them. The APP was updated recently, but since I stopped checking because they were always good, I didn’t notice that I was no longer receiving the reports.
Then after about six months of no significant sleep issues, she stopped getting up with her alarm and her mood changed. We thought it was winter blues or ongoing pandemic. I suggested she turn off her computer each night at 8 p.m., using the dog walk as the transition. I felt she was might be kept awake because of being on her computer too late. She started to go into her grandma’s room to watch t.v., but lately grandma hasn’t been very kind. Another piece of the puzzle?
So instead of being with grandma, she went back to a t.v. series she had been watching last year. She said it didn’t make her anxious, but each time she watched it, I noticed a change in her. It was about vampires. She said she was having lots of dreams, some scary. I suggested she stop watching the show. She started reading (yay!) before bed. But then I wondered was she staying up too late? But the display on her CPAP said she was getting 10 hours sleep.
Other things I considered: Her fan broke and she was without it for white noise for a few nights. She complained the new one sounded different. Was that the issue? We had a lot of snow in February. Our house is on a main road at the bottom of a hill. The snowplow is very fast and loud as it travels down the hill in the middle of the night scraping up the snow. Was that disturbing her sleep?
She seemed to settle … but the getting up was still an issue. She came to me a few nights ago and said she told a friend online that she still wasn’t sleeping well. The friend encouraged her to tell me. At first I thought ”not again and what else can it be” … it seems we can’t go for more than a few weeks without something. But I took a breath, paused, reframed and put my thinking cap on.
I thought about the sleep reports. Then I remembered I wasn’t getting the reports anymore. We checked to see how many hours she was sleeping … but we didn’t know what her quality of sleep was. We requested a report and discovered this:
As you can see from the photo on the left Feb 1-13 … almost 100 score every night and fairly consistent. Then from Feb 14 – 27 it was varied and inconsistent.
When we examined the report further, her mask seal score was low and the incidents per night were high. Then it dawned on me. She had received a new hose and nose piece a few weeks ago. I asked her if the nose piece was fitting … she said it was fine. But clearly the report was showing it wasn’t. We decided to watch the videos in the APP … hoping it would give us a clue. And it did. She discovered she put the new hose (which was different from the old one) in the wrong way. And the video reminded her it was important to adjust the headset each night to make sure it was snug. From the 28th to last night (March 4) her score has been 100. And she has been up each morning with her alarm.
This was a reminder I need to take time and think about behaviour. Put my detective hat on. When I do that, without jumping to conclusions, I can often find out what might be going on. Is it tiring? Yes. Did I think I would still have to be so involved when she was 23? No.
But I am seeing growth. After trying different strategies, she spoke to a friend and then to me. I do believe the show, books and mood in the house were still a contributor and we may not have figured it out as fast without them. But together we solved this one. She didn’t connect getting the new equipment…. but once I did and we watched the videos she realized she didn’t connect the hose correctly. And she said she wasn’t adjusting the headpiece every time she put it on. So she changed the hose, is checking her headpiece for a snug fit every night and I check the sleep report every morning.
Even though our loved ones are doing well we can’t drop the support we give them. Fifteen years into this I still forget. I’m human, I’m not perfect. But what I have learned is to give myself compassion and get curious. It isn’t always so “easy” to find the reason, but what a relief when we do find it and can fix it. I read the above phrase: growth is a dance, not a light switch. I think it will be my new mantra.
If your child/teen/adult has trouble sleeping, pay attention. Over 80% of kids with a neurodevelopmental disability have sleep disruptions. You can try weighted blankets, white noise, consistent sleep routine, essential oils, dark room, night light, stuffed animals, check for sensory on clothes or sheets, less clutter or any other number of considerations, ideas and strategies … but if your child is still not going to sleep, waking in the night, having trouble getting up or seems tired or dysregulated during the day, you should talk to your health care provider. For some it could be adjusting your expectations, their sleep routine, adding sleep supports, or medication. For others it could require a sleep study.
If you have a child under 12 there are a couple programs and studies you can participate in: Better Nights Better Days and ABCs of Sleeping for Children For other ideas and information, check out the Sleep in Children with FASD webinar by CanFASD or a podcast from Jeff Noble with Dr. Ana Hanlon-Dearman an expert on sleep and FASD.
The strategies suggested aren’t just for kids. I have learned a lot about my preferences, rituals and routines through learning how to support and navigate life in a neurodiverse world.
Not FASD related, but I found a helpful website from the Mood Disorders Society of Canada which has some great information and resources.