Archive for the ‘sleep’ Category

Shhhh…Oscar is sleeping

Monday, August 26th, 2013

This photo was taken on our trip, the day before he got his Panda.

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!

FSMA Conference 2012

Thursday, July 26th, 2012

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It’s been a month since we returned from the conference! I’ve had a hard time trying to figure out just how to capture the experience in words. There is far too much to contain in this small space. So I’ve attempted to put snippets together here for you to get a beginning idea of what this conference was like for us.

We knew the conference was going to be good this year, but we couldn’t have imagined just how amazing the experience would turn out to be. This is the second Families of SMA ( conference we have attended. Our first was in 2010 in Santa Clara, CA. This year it was in Minneapolis. Every year, this conference gathers over a thousand people: children and adults affected by SMA, their families and friends, and researchers and clinicians who specialize in SMA. Two years ago we were like deer in the headlights. It was only six months after Oscar’s diagnosis and we were terrified. This year, as soon as our accessible taxi pulled up at the hotel, I started crying because I was so happy to be there.

Air Travel with a Power Chair and Oversized Medical Equipment

Arrived at the Minneapolis/St. Paul airport! From L to R: Oscar in his power chair, carry-on #1, large suitcase with ALL our clothes, luggage cart with: huge green case for cough assist, black bag with car seat, & carry on #2. Missing from photo: tote bag with booster seat which also carried the seat cushion, joy stick and foot rests from O’s power chair onto the plane.

This was the scary part of the trip this time. We had no idea what to expect. We called the airline ahead of time, twice, to let them know we needed special accommodations. The first time, I spoke with someone who tried to assure me everything would be fine, yet he didn’t sound like he had experience working with travelers with special needs. David called the second time. He spent an hour convincing the airlines that the oversized bag containing the cough assist machine and the battery charger for Oscar’s chair would indeed be gate-checked and could absolutely not be checked at the regular baggage check area 1. because it was fragile and needs special handling and 2. because it absolutely could not end up on the wrong plane. All in all we survived just fine, as did all the luggage and equipment. We ran into some really lovely and thoughtful TSA folk (both in Rochester & Minneapolis), and some great airline employees as well. We also met some clueless, insensitive airline workers who seemed to have never come across travelers with a wheelchair or medical equipment before and who really had no idea how to listen. At the gate in Detroit David explained that we had a wheelchair and an oversized case with medical equipment to be gate-checked, and then I explained two more times (because she seemed not to understand what David had said). Nonetheless, when she saw our oversized bag she asked accusingly, “What’s that?!” And so we explained to her for the fourth time. For further information, you can read more about safety considerations for active travel in this article, which can be found at sites like

The sign we put on Oscar’s power chair to go on the airplane. After being at the conference and getting some great tips from adults who have traveled widely, I added some additional handwritten instructions!

We also had a baggage handler in Minneapolis take the cough assist bag out the door on the jetway, realize it was too heavy to carry down the stairs, and tip the bag end over end the rest of the way down. David saw this and had the foresight not to throw the door open and chase her down the stairs. I would not have had that foresight. I may have gotten arrested for entering a TSA area. However, if I had been the one to see it, not David, I’m pretty sure I would have curbed my tongue and Oscar would not have repeated the F-word. Nonetheless, I don’t blame David one bit. He had every right! Let’s just hope Oscar forgets that one for about a decade.

All that said, one of the most amazing parts of traveling with the power chair happened right here in Rochester, on our way out of town. It was nearly time to board the plane and so David set to work preparing the chair for the flight: disconnecting the joy stick from the power and removing the screws which hold the joy stick in place so we could carry it ourselves onto the plane, along with removing the seat cushion and foot rest supports which are attached to the chair by velcro. I held Oscar on my lap while all this took place. And then the baggage handlers came to take the chair down the elevator to the plane. As they began to wheel the “go power chair” away, Oscar burst into tears. In three short months, this chair has become a part of Oscar. I nearly burst into tears as well. What a gift modern technology has brought to our family in the form of a chair powered by a rechargeable battery, operated by a simple joy stick.


Folks of all abilites participating at the first ever FSMA dance party

The entire conference experience was incredible. More than anything, being around other folks with SMA and families of folks with SMA was such a relief. David kept saying, “All year we live on this little island. Here the island is bigger.” Oscar fit right in, zooming around with other kids. As parents there was an understanding, familiarity, camaraderie. Often no words needed. An innate empathy. It was a relief, and beautiful, to watch and be a part of. No questions were asked as parents poured white powder (Miralax, for easing constipation) into their children’s juice at breakfast, just knowing nods. No curious or worried stares lifting a limp kid from chair to pool. Each family had their own technique. Sitting the kid at the edge of the pool, legs dangling in, while parent jumped in, sometimes while holding the child steady. Placing a neck floating ring on the child before carrying them, one arm supporting the shoulders one arm under the knees into the warm pool. Luckily the “hot tub” was actually a large pool because all of the SMA kids with their low muscle tone need the warm temperatures. At any given time there were more people swimming in the hot tub than in the regular pool. There were varying degrees of floppiness that all disappeared as soon as the child entered the water. Our room allowed a generous view of the pool at all times and I found myself gawking, not the way others often gawk at our kids’ bodies and equipment, but with a sense of joy, a deep gratitude for being part of this amazing community.

“Do you want to zoom with me?”

Oscar zooming after Leah

This is what Oscar asked seven-year old Leah, the first kid in a power chair he met at the conference. And sure enough, Leah zoomed with him. I think Oscar was surprised by how fast and skilled she was and that she didn’t just let him “win.” Oscar zoomed with many kids over the four days we were at the conference. The majority of conference activities took place on the second floor of the hotel. In addition to the elevators (at which there was always an impressive line-up of chairs) there was an escalator and several sets of stairs which led down to the first floor. As Oscar zoomed around, although he never got dangerously close to the stairs, we still had several near-heart attack moments, as he’d zoom past the stairs or in the direction of the stairs before circling back to safer ground.

Sarah & Heather

Oscar also asked Heather to zoom with him. Heather is a young woman in her early twenties and she happens to be the very first person we met upon entering the hotel. Oscar introduced himself while I checked us in and David got the bags inside. We ran into Heather again, not long after Oscar had zoomed with Leah, so he invited Heather to zoom with him as well. Heather and Oscar took quite a liking to one another, and spent as much time hanging out together during the conference as possible. Heather and her friend Sarah (reunited after having met each other at the conference nearly twenty years ago!) even brought back a build-a-bear from the Mall of America for Oscar. They named the bear Mr. Hotwheelz because that’s the nickname Heather had given to Oscar.


Every night, as we did cough assist with Oscar, I couldn’t help but feel a sense of comfort, knowing there were so many other cough assist machines in the hotel.

Every year there is a Sharing Your Type II Experience workshop (as well as similar workshops for other subgroups within SMA) in which parents make a list of topics they’d like to cover and then the discussion is open to all attending the session to offer experiences and ideas with one another.  One couple said they’d like help getting their child to sleep better at night. When this topic was mentioned, there was a noticeable murmur throughout the crowd confirming many parents would also like the same help. The moderator of the discussion said, “If anyone has that answer, I’d like it! My daughter is eighteen and we still get up several times a night.” Folks with SMA rely on their parents or other caregivers to roll them in the night. On a good night in our house, we only get up four times to roll Oscar (twice each for me and David). A bad night can easily be a dozen wakings. And that means the average night falls somewhere in between: 6-8 times. David and I are always tired. Most of the time we’re just used to it. Once in awhile it becomes debilitating. The good news: we’re not alone! The bad news: there is no real hope of getting a decent night’s sleep until Oscar goes to college. Hmmm…

Our Workshop Tapping Into Creativity: Tools for Personal Healing

It was an honor to be able to present at the FSMA conference. Two years ago when we attended our first conference, we felt a need to be able to express and share the difficult emotions that go with being the parent, or family member, of a person with SMA. Although we forged connections with a few other families we met at that first conference, and were able to share triumphs and challenges with them over time, there was no forum  at the conference to facilitate that. Since David and I have been actively using the creation of music and writing to help us live through and process our emotions around SMA, and since I have been leading creative writing workshops for a number of years now, approaching FSMA with the possibility of this workshop seemed like a good idea.

From our perspective the session was successful. We had about twenty or so participants. We shared some of our journey with the arts over the last two and a half years including sharing some of our own work, discussed strategies of how to incorporate a creative practice into a challenging schedule, and we offered a resource guide which included lists of inspiring books, blogs, records, quotes, poems, and a series of creative exercises to try at home. Participants were also led through a brief writing exercise. It was an honor to be in a room with others sharing in discussion about the link between creativity and emotion as it relates to living with SMA. We already have ideas of how to improve the workshop, should we offer it again!

The People

Oscar & Stevie

This is what it was all about. We were overjoyed to see a number of people we had met two years ago, and to meet many new folks. We were blown away by all of the love we experienced in this one hotel. Everything from having Mary Schroth (head of the FSMA Medical Advisory Board, clinical pulmonologist and overall SMA guru) reach across the table to hold Oscar’s juice for him at lunch on our first day there to meeting Stevie Hopkins and his mother and becoming acquainted with his company 3E Love.  It was amazing to have Oscar and Jack reunited. Two years ago they were in matching manual chairs and now they’re in matching power chairs. Seeing Quinn—who easily could have won an award for being the speediest kid in a power chair there—and his family, who we’ve kept up with via email, was such a joy. Meeting a single mom from who was there alone with her two year old daughter all the way from California. Watching all the type I families with all their equipment: what we had to bring with us is nothing compared with these families, and yet there they are. Every year there is panel of adults living with SMA sharing their experiences and perspectives that offers so much hope and inspiration. I could go on and on. There are so many others. There are so many other experiences from these few days that are worth recounting. But I’ll save them for now. David and I are so filled with gratitude for this organization, this event. What a gift for all three of us.

The view from our room’s “porch”

The smaller, yet more populated, “hot tub” pool

Love all the wheels poolside!

There are some additional photos posted to the Oscar-Go Facebook page.