Oscar-Go

We have a new sleep plan. And so far, two weeks in, it is working.

For over a year, probably closer to two (since he has been sleeping full-time in his own room), Oscar has been waking in the night and calling out to us, on average, between four and eight times per night. Some nights it has been a dozen. And on rare occasions, only two. We have been beyond exhausted. Hitting the snooze button repeatedly each morning, getting up late, dashing around trying to get out of the house—all while being very cranky. I have noticed my mental capacity diminish significantly, no longer able to hold details that used to be second nature, unable to focus my attention for long periods of time or with the same acuity I used to. And evenings have left us with virtually no energy accessible for things like writing, playing music, reading (all necessities in our lives), not to mention socializing with friends and family or even with one another.

The tricky part about Oscar’s sleep patterns is that it has been very difficult to determine the source. Most of the time in the night when he calls out it is to ask to roll over. He is actually capable of rolling from side to side, as long as he doesn’t have covers, and as long as his legs are not in a position that prevents him from lifting them enough to get the momentum to roll, and as long as he isn’t tangled up with one of his stuffed animals enough to prevent him from lifting his arm off the bed and making a move. Sometimes he genuinely can’t roll, or can’t get into the position he’d like to be in. Sometimes he’s having a dream and is calling in his sleep. Sometimes it must just be the habit and comfort of having us come into his room in the night. A couple of times he has called out and one of us has gone in simply to have him say, “I love you.”

Some nights he has called out in 20-minute intervals, other nights he’ll go a couple hours at a time. Some nights he calls us three or four times before we’re asleep, other times his first call-in isn’t until one or two in the morning.

It has been very difficult to determine why he calls each time he does and which times he needs us, and which times he simply wants us. We’ve asked around for advice. At the 2012 FSMA conference a parent asked the group about sleep. The mom moderating the session laughed and said her daughter is 18 and if anyone had any advice, she was all ears. Some kids with SMA do have issues with hypoventilation at night, where they are not exhaling enough carbon dioxide, and need to use a biPAP machine, similar to what is used for sleep apnea. Oscar had a sleep study last fall which returned no concerning results, and therefore also no answer as to why he wakes so often in the night. We met with the psychologist at the sleep center who helped us put a sleep ticket reward system into place (he began the night with 8 tickets, each time we came in we took one, and in the morning he received as many stickers as he had tickets left). He enjoyed getting stickers in the mornings, but it seemed to make no impact on his sleep habits whatsoever.

I posted in desperation one morning, after a particularly rough night, on a Facebook group for type 2 SMA parents, asking for advice. The responses I received ranged from things like, “I’m so sorry. My child only wakes up 2-4 times per night and that’s manageable for us,” to “My teenager has always slept in my room with me, right beside my bed, so it’s no problem for me to wake up every 20 minutes to roll him/her.” No solutions that were going to solve our sleep issues.

I felt convinced that there had to be a solution. We couldn’t just not sleep for the rest of our lives. Having a nurse come in at night could be an option, but that doesn’t feel right, for now, while Oscar is 4. Maybe when he’s a teenager and he needs more independence from us.

I remembered that there was a mom in that conference session last year who had said she retrained her son when he was little to be able to sleep better. I sought her out at this year’s conference. We managed to sit with her and her family one morning at breakfast and learned about the, “Yawn, and go back to sleep,” system she had implemented with her son when he was around three years old. The idea was that if he woke up in the night, instead of calling out, he should yawn and go back to sleep. Mary said it was hard work and did involve some tears, but it worked. She said she’d ask Danny, “Do you want a happy mommy or a cranky mommy?” And she encouraged us to use rewards and even bribery if needed! She talked with Oscar and told him kindergartners don’t call their moms and dads in, in the middle of the night. And she had Danny talk with Oscar. It was wonderful! And so refreshing to hear there might really be hope.

We took the idea home with us and told Oscar we’d soon be working on implementing it. David and I talked strategy and logistics of implementation (and tried to muster our courage, all while experiencing a severe lack of sleep!). We practiced, “Yawn and go back to sleep” with Oscar during the day time. And at night before bed Oscar would say, “But we’re not doing it tonight, right?”

“No, sweety. Not tonight. But soon.”

I was terrified. I anticipated screaming and crying in the middle of the night, disrupting sleep even more so than it already was. Finally we worked up the courage to come up with a concrete plan. We’d allow Oscar three call-ins on any given night. We purchased three small push-button lights, much like those that might be mounted under countertops. I covered each with different colored scotch tape, to dim the light and to differentiate them from one another. We positioned the lights on the bookshelf at the foot of Oscar’s bed, hoping he’d be able to see them from any position he was in. We’d turn them on when we put him to bed, and then each time he called us in we’d first stand outside his door and encourage him to yawn and go back to sleep. If he couldn’t, one of us would go in, help him with what he needed help with, and then turn one of the lights off. After the third light was off, we wouldn’t be coming back in until morning. “Emergencies” would be freebies (no light turned off) —this would include things like being too hot or cold, needing to go to the bathroom, or having a bad dream.

We also let Oscar pick out some “guys” as rewards. He chose a set of three plastic characters from Monsters University. The first night that he managed to call in three or fewer times, he’d earn one guy. Then he’d have to do two nights in a row for the second one, and three nights in a row for the third.

It has been two weeks since we implemented this plan and Oscar has called in three or fewer times 13 out of 14 nights. He has now earned five guys. He’s proud and we’re functioning with a little more ease (it will take some real time to make up for years of lost sleep). There have been no tears. None. I guess we talked it up enough while we were looking for our courage that he knew what to expect. He embraced the plan and went with it.

Now, two other things happened simultaneously that might have been critical—it’s hard to know for sure. 1. We reduced Oscar’s nap to one hour. He used to nap for anywhere from an hour and fifteen minutes to two and a half hours. He wasn’t really having a hard time falling asleep at night, but we thought perhaps he doesn’t need as much sleep during the day (I tried, for one day, eliminating his nap altogether—it was disastrous). 2. He got a new panda bear stuffed animal from Liz when we went to the San Diego Zoo and suddenly he became more flexible about snuggling with animals at night. Previously he would only snuggle with Mr. Hot Wheelz, a large teddy bear that Heather gave him at last year’s conference. He had to have Mr. Hot Wheelz positioned just so and needed him repositioned every time we went into his room at night. Whenever we suggested switching to a smaller animal, or keeping two different animals on either side of his bed, we were met with emphatic refusal. Mr. Hotwheelz still has a prominent place sleeping against the wall on Oscar’s bed, within reach, but Oscar, by his own design, now goes to sleep snuggling panda who is much smaller and then Oscar has a collection of smaller animals arranged around him. When we do help him roll now, he seems satisfied to cuddle with whichever animal is closest. And many times we have gone in, he has rolled himself, and may not even be snuggling an animal.

One night last week Oscar slept from about 9p.m. until 5:30 a.m. without us going in at all. That was the first time in his nearly five years on this planet that was completely alone for over eight hours in the night.

I fear I might be jinxing our good fortune by sharing it here with you, but we want to give you the opportunity to celebrate with us—we know many of you have offered help and empathy. We know, very well now as parents, that patterns shift and change. And we’re sure that other sleep challenges will rear their heads in time. For now we are grateful for these last two weeks. David jokes that it will cost us a fortune, at the rate that Oscar is earning guys. So far, it’s cost about $6/week. We’ll gladly pay that for sleep! (And, actually, Oscar does seem to understand that once he has truly gotten the hang of the new plan, he won’t need rewards any longer).

Perhaps sometimes a clear plan with a gentle but firm commitment is what it takes to get what is needed. Wish us luck that this may continue!