Archive for August, 2013

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!

CALIFORNIA! San Diego, Joshua Tree, Disney & the FSMA Conference

Wednesday, August 14th, 2013


August is SMA awareness month. This would be a good time to finally post about our trip to California and the Families of SMA conference!

In June, we spent nine days in southern California. We flew into Orange County, rented an accessible van, and drove to San Diego, where David & I used to live, for four days. Then we headed back up to Orange County and the Disneyland Hotel, where the Families of SMA conference was held this year. It was an incredible trip, connecting with old friends and meeting new friends, visiting favorite places and new places, and being a part of the incredible community that is FSMA.


We’ll just say that our travel to California was an adventure. We flew out of Rochester, had a brief layover in Chicago, and landed in Santa Ana. We checked two bags plus Oscar’s car seat, gate-checked Oscar’s power chair and a large case containing his cough assist, nebulizer, and wheelchair battery charger, and carried on 4 bags containing food, toys, books, drawing materials, as well as the seat cushion and joy stick from his power chair. Upon landing in Santa Ana, my name was paged overhead, asking that I stop to speak with the gate agent on the way out of the plane. We thought, oh good—they’re going out of their way to accommodate us, making sure the process of getting Oscar’s wheelchair and medical case goes smoothly (it did not in Chicago). But we were quite mistaken. They paged me in order to inform us that Oscar’s powerchair had not made it on the airplane. It supposedly got stuck in an elevator in Chicago and they did not hold the plane for the chair. My immediate response was one of shock, disbelief, and numbness. David found the airport to suddenly be spinning and nearly threw up. Oscar said, “This is a total emergency.”

Here is the sign we put on Oscar’s wheelchair (perhaps we left off the most important piece of information “Be sure the plane doesn’t take off without the chair.”):

We were directed to baggage claim where we were greeted by an incredible United employee who was so broken up about the chair not making it on the plane that he had tears in his eyes. He set us up in a hotel across the street, along with meal vouchers, for the next six hours while we waited for Oscar’s chair to arrive on the next plane. It was not a fun a six hours, and we arrived in San Diego at 9pm pacific time, after having been up for nearly 20 hours. We certainly survived, and sure things could have been worse. But this does bring up some questions about air travel for wheelchair users, and some concerns about how accessible air travel really is. That is a discussion for another time, as there are too many happy events to report upon from the rest of the trip.

San Diego

Our first morning in San Diego (and every morning thereafter) we went to our favorite bakery Bread & Cie and ate an inordinate amount of carbohydrates and found ourselves to be in a state of bliss.

We spent two afternoons at our favorite beach, Torrey Pines (the beach where I proposed to David 12 years ago):

Our dear friend Liz joined us for fun in the sand (she was kind enough to provide the sand toys, as well)!

Our dear pals John & Melinda and baby Penny also joined us!

So, what can Oscar do at the beach besides play in the sand?

Beach wheelchair surfing!

Thanks to a tip from our friends who we met at our very first FSMA conference, we learned that all state beaches in California have beach wheelchairs that can be borrowed for use on the sand. Here’s a clearer view of what the whole chair looks like:

The chair is outfitted with these huge, lightweight,  hollow tires that will not sink into the sand (as opposed to a typical power chair, which, sadly, would not be able to handle sand at all). Liz saved the day again with pillows to pad the adult-sized wheelchair so that it would be more suitable for Oscar. We’re not sure the wheelchair is intended to go in the water, but as we wheeled Oscar toward the water and discovered, as a wave came in, that the chair indeed did float, there seemed no better option than to use the chair in the water! David & Oscar must have spent about an hour and a half playing in the waves.

We also went to the San Diego zoo.

And we caught up with many friends.

At Bread & Cie once again! With Carolyn (L), and her daughter Katie who I used to nanny and who is now in college!

We basically ate our way through all our favorite spots in San Diego, including a large gathering at Filippi’s Pizza Grotto.

Deeply involved in a meal at our favorite sit-down pizza joint with Dan & Anna, Adriana, John, Sheila, & Ananlise, Carissa & Dean, Liz, Kathy, and John, Melinda, and Penny.

The last time we were in San Diego was over five years ago, when I was just a handful of weeks pregnant. Everyone was thrilled to meet Oscar and we were thrilled to catch up with some great friends.

Joshua Tree

We made a stop at Joshua Tree National Park, in the Mojave Desert, on our way from San Diego to Disney. The drive was longer than we remembered, and even longer with a four-year-old who isn’t comfortable sitting in his car seat for extended periods of time. Nonetheless it was all worth it to show Oscar one of our favorite places on the planet, the place where we got married nearly 11 years ago. We spent a couple hours in the Hidden Valley area of the park, our favorite place to camp, and the place where we took a group hike on the morning of the day we got married.

Oscar mimics the limbs of the Joshua Tree.

Oscar and mom


Up on the rocks with Dad!

And then came Disney

We spent one day in the park. Considering that none of us had done the Disney thing before, and considering that Oscar finds most movies to be anxiety-producing, we all found the park to be a bit overwhelming and over-stimulating. Nonetheless we had a blast checking out the castle, visiting Pirate’s Cove, and Oscar’s favorite: the parade!

At the hotel we basked in luxury. Here’s the view from our room:

Oscar spent many hours in the pool during our five-day stay.

And my dear friend Sarah, from college, came to visit us with her little one.

The Conference

It’s hard to believe this was only our third Families of SMA conference. This once-a-year gathering has become such an important part of our lives. It’s the one time a year we get to leave our tiny little SMA island, where we live mostly alone—in terms of interaction with other SMA families—and head to the giant SMA island where little needs to be said because everyone intrinsically understands the complications, triumphs, heartaches, and joys of parenting a kid with SMA. It’s also a place where anything and everything can be said, without having to provide extensive explanation.

My mom met us at Disney for the conference. We were glad that, as in years past, she was able to join us for the conference. She also enjoyed catching up with friends from past conferences, attending the workshop session for grandparents, and hanging out with Oscar while David and I attended workshops.

Oscar and Ghi Ghee being very silly wearing glow sticks as earrings.

It was incredible to see Scarlette and her family again.

Waiting for the fireworks one evening of the conference

We had met them at our first conference in 2010, which was also their first conference and we hit it off right away. And we hadn’t seen them since! Oscar & Scarlette are just 6 months apart, and enjoyed spending time together at the conference. We saw many friends from previous conferences, and met new friends as well.

Oscar and Jack chat before resuming their zooming around the hotel ballroom the first the night of the conference.

Jack and his family are another favorite family we met our very first year. Oscar and Jack, then, were in matching manual wheelchairs. The next time we saw Jack, the boys were in matching power chairs. This year Jack has upgraded to a larger chair. Oscar had an even greater sense of independence at the conference this year, zooming around with the kids, and fearlessly approaching people to say hello.

We led a workshop session again this year, much like the session we led last year. It was entitled Writing Our Stories: A Parent’s Workshop in Healing Through Creativity. We led the participants, who were other SMA parents and grandparents, through some writing exercises, and gave them resources to help them continue their creative journey at home. Studies have been done showing that writing through difficult situations has positive physiological benefits to the body, in addition, of course, the the positive effects it has on emotional and mental health. We had a small but really lovely group (competing with Disneyland is pretty difficult—it seemed as if most of the sessions were smaller than usual this year). Families of SMA sent us an email after the fact, with a message and a piece of writing from one of the workshop participants. She had lost her seven year-old son to SMA five years ago. She thanked FSMA for the workshop and mentioned that she started the piece of writing at our workshop which she then finished on the five year anniversary of her son’s passing. You can read the piece here. It’s a beautiful story that explores the depths of loss, the hardships of navigating a world that is not fully accessible, and how the power of friendship can help overcome any barrier. It was an honor to witness the brave and powerful writing of this mother, and of the other participants at the workshop. Families of SMA always goes out of their way to thank us for leading a workshop, but we always turn that back around on them and thank them for the honor of being involved in this way. It is truly a gift.

The workshop sessions we did attend as participants were great as well. My favorite every year is the session of type 2 parents discussing various issues with one another. I also found the orthopaedic session to be very helpful, and reassuring that the choices we’re making regarding bracing for Oscar (especially his most recent TLSO back brace), are the right choices, despite some of the pushback we’ve gotten from some of our local doctors. I asked the doctors leading the workshop session about the duration of time Oscar should be wearing his TLSO. Kids who already have scoliosis need to wear it all the time. That is not yet the case for Oscar. He wears it more for his kyphosis, the curving forward of his spine. One of the doctors suggested that reclining his wheelchair seat might be a great alternative to wearing the brace all the time in his wheelchair. I was delighted that Kristen Krosschell, the physical therapist well known in the SMA community, piped up from the audience and said that since she had observed Oscar interacting with others from his wheelchair, she did not think reclining his seat would be a good choice, because he is a kid who loves being active and in the middle of the action—he’s a kid who is more often found leaning forward, into the fray. I love that from just observing him briefly zooming around the conference, she is able to have this insight, and offer this individualized advice.

As always, it was hard to leave. At home, Oscar almost never sees another child in a power chair. At the conference, the kids in power chairs take over the hotel! We’re thrilled to learn that next year’s conference will be in Washington, D.C., within driving distance for us!

Since it is SMA Awareness Month, please consider sharing this blog post, and our web site with others. The more we raise awareness, the more thoughtful people can be about accessibility and acceptance. Our goal is to remove as many barriers as possible, allowing Oscar to fully experience the world around him.