Our son with Fetal Alcohol Syndrome doesn’t have the severe sleep problems that affect so many with FASD. Well, that said, although he does sleep for up to 10-12 hours a night he often doesn’t want to go to sleep and has trouble falling asleep even with the help of a low dose of melatonin. His pre-sleep routine can take up to 3 hours. In part, it’s because he actively tries not to sleep. At times, he fights it. For this, we can thank some clever person who in his or her wisdom decided to post on YouTube a revamped version of the Teletubbies, where George W. Bush’s face was in the middle of the sun and he lasered and killed the Teletubbies with his eyes. Our son saw this many years ago, and to this day he still fears ‘Mr Orange Sun’ will show up in his dreams. And he does. Frequently. It is a recurring and terrifying nightmare for him. As he is growing older, he also tells us about other dreams – kids in school being mean, someone yelling at him. But none have the power of Mr. Orange Sun.
If you think about it, dreams are really abstract concepts. It must be so confusing for a kid who can’t handle the abstract to make sense of why these images relentlessly parade through his head at night. I would want to stay awake too.
He has his own strategies for coping. He believes if he falls asleep facing the wall, he will have nightmares. If he sleeps facing away from the wall, he will have good dreams. Sleeping on his back facing the ceiling means no dreams. Recently he latched onto the idea of getting a dream catcher. By recently, I mean within the last year.
We hesitated. He takes these things quite seriously. He heard once that coconut oil can make your hair grow faster, so when we got him a little bottle of coconut shampoo he had us measuring his hair after each shampoo. He got really frustrated to see it wasn’t working. For a week he had Sharpie marks all over his arms trying to see if the flash on a phone would leave a mark. He doesn’t understand why Justin Bieber has millions of fans on YouTube and he doesn’t when, just like Justin, he posted his videos and asked for people to ‘like’ them. He thinks if you call Annabelle you will hear her (again, thanks to YouTube, I hope you don’t know who Annabelle is – the spooky looking doll that seems to have supplanted the Lady In White we used to try to talk to during kiddie sleepovers). You may be thinking “all kids go through these stages” and yes, they do. But not like this.
His brain is literal. Extremely observant. But not flexible. He is not able to rapidly redirect or refresh the way he looks at something. If he has it in his head – as he does this weekend – that a raw egg is good for shiny hair, we can be sure that at some point this weekend, this will be tried. Our choice is to help him with this experiment, redirect to something more suitable (though often that is a tough sell), or pick egg shells out of the bath yet again after he surreptitiously gives it a try anyway (yes, it has happened before, some of these ideas are cyclical). We are learning to go with the flow. If his experiments are not too over-the-top, we facilitate. We teach he just needs to get our permission first. We will help him. Some of his ideas are not ‘wrong’ or ‘bad’ – they can be tiring and messy – but there is almost always a kind of logic behind them, and yes, they also can be quite fun like the foaming soap and whipped cream challenge, the messy play challenge, or his sensory-rich birthday extravaganza (not for the feint of heart).
It’s this same persistence/inflexibility that means we have learned to accept that if there is any candy in the house or any ice cream, he will eat it. He will fixate on it, and until he knows it is gone, we will not be able to deter him. Well, we could of course, but we have learned it is simply not worth the fight and chaos that would ensue. As I type, he is in the freezer, getting his third Twister of the morning. My bad. I should never have picked these up in the shop yesterday. I wasn’t thinking it all the way through. I saw them, remembered he liked them, not really thinking of how many were in the box. No, I am not going to battle over Twisters this morning.
None of this is to say that our guy cannot learn. Quite the contrary. He is constantly learning, gleaning information from many sources, seeing things I don’t even notice (what ways the wipers go on the cars is one that still boggles my mind – some do go left-to-right, others right-to-left). What helps him learn is consistency, repetition, finding those moments when he is receptive to input, those times when he can meet me eye-to-eye, and we can connect. When we can use some of his other senses to help imprint some bit of information onto multiple parts of his brain. We model the behavior we want him to emulate. We reinforce, reinforce, reinforce.
And then, one day, magic. He does something that gives us great hope. This happened a couple of nights ago. There was a problem upstairs with phone chargers (he was using my phone since his was long ago crushed and the Amazon Fire Kids tablet of my last post has still not been replaced, at least he doesn’t yet know it’s been replaced as we let that ‘natural consequence’ sink in for a few more days…). My husband went upstairs to sort it out. Our guy came downstairs on the couch with me and the dog. He very consciously reached to the dog for reassurance. He explained clearly that there was a problem, the charger wasn’t working. We heard my husband up there expressing less-than-calm vibes. (Occasionally it can be good spectator sport to see my husband losing to technology. Sorry dear, but it’s true. But not when it’s nearly bedtime, and the little one is possibly on the verge.) My husband was getting audibly upset, and increasingly frustrated. We could hear it clearly. Our youngest, who had the dog on his lap, looked at me eye to eye and said with compassion in his voice, “I think you should go. I think he needs help.”
That may sound small. But it was huge. He wasn’t defensive, he wasn’t upset by the confusion over the charger. He wasn’t escalating in step or ahead of my husband’s escalation. He was totally in control of his own skin. He was telling me he didn’t need me, he was okay. Daddy needed me more and I should go. HUGE. I said that was really good that he pointed that out to me that Daddy needed help, and I would of course go and help Daddy with his problem. And I thanked him for thinking about Daddy, since we know he has been ill this week. And all this was on a night when our son was deeply disappointed that the snow they SAID would come didn’t materialize. He was in control. And while in control, he was loving and attentive to the needs of others. HUGE win.
(And, yes, the charger isn’t working properly because our guy fiddles with it when he is using the phone, but that is the risk I take in letting him use my phone. He is not doing it consciously. That was a conversation we had later, quietly. He understood. He’ll probably do it again, but he did understand. Maybe someday, he will be able to stop doing it.)
It can creep up on us, this idea that he is learning. He is observing. He is making progress. Sometimes it’s not easy to remember – like yesterday when we had a roll of toilet paper torn up and thrown downstairs. Six, seven months ago, we might have had a huge scene – broken toys, smashed doors after that. Last night, we contained things and within 10 minutes we were up in his room, in the quiet and dark. I was giving him a foot rub and ignoring the words until they too calmed down and we could get to the business of deciding what food he might like to eat. We are not perfect. We are flawed. My every instinct is not that of a saint, believe me. I say things in the moment that I wish I hadn’t, things I know I should not, things I know that don’t help. But we are able to grasp at the progress and hold onto it.
When we least expect it, we see it.
Back to the dreamcatcher. He was so hopeful when his dad nailed it to the wall above his bed. Our guy showed him just where to put it – not too high, not too low. The first night went well. But the second morning he woke up discouraged.
“I had a bad dream. The dream catcher didn’t work. I think I need a bigger one.”
He doesn’t ever give up, our guy. Inside that bundle of energy that is his powerful and amazing body, he is at his core an optimist though he may be wrapped up in layer after layer of anxiety and doubt. Somehow he faces his every day – no matter how confusing or overwhelming or terrifying it can be – he faces ever day anew. We call it his ‘reset button’ and it is one of his greatest strengths. It is one of the gifts he has given me, a reminder that within us all we have this ability to start over, to try again.
Bed times and pre-sleep have long been an issue for our son. Looking back at those pre-diagnosis years and our lack of understanding makes me cringe. And yet, he has had nowhere near the troubles with sleep that some with FASD have. For more about sleep and FASD have a look at these links:
Sleep – information and strategies from the FASD Network of Southern California
Strategies Not Solutions (one of my favourite parenting booklets out there) from Edmonton and Area Fetal Alcohol Network (EFAN) (see esp. p 34-36 on sleep)
Sleep Problems in Children with Fetal Alcohol Spectrum Disorders, Maida Lynn Chen et. al. J Clin Sleep Med. 2012 Aug 15; 8(4): 421–429.