Friday, May 21, 2010

When sleep eludes your child

Imagine your six-year-old child gets up at 1 a.m. four times a week, and won’t fall back to sleep till 5 or 6 in the morning.

Relatives want you to visit, so you book a hotel and make the three-hour drive. But at 1 in the morning the first night, your oldest son wakes up, begins pacing round the hotel room, and wakes up his younger brother. Knowing nobody will sleep this night, you pack up your stuff and hit the highway for the three-hour drive home at 2 in the morning.

This is real life for Bethan McCutcheon and her husband Sean, whose sons, Tecwyn, 6, and Tathan, 5, have Angelman syndrome.

Sleep disorders are common in this genetic condition, and according to a Belgian study include falling asleep later, repeated night-time wakings, and reduced rapid eye movement or deep sleep. Despite little sleep, children are alert and active during the day.

While Tathan sleeps most nights, Tecwyn is often up for four to five hours in the middle of the night. I interviewed Bethan to find out how the family copes on such little shut-eye.

BLOOM: When did Tecwyn first develop sleep problems?

Bethan Mccutcheon: It was at about a year old, when he stopped napping during the day.

BLOOM: What kind of sleep problems does Tecwyn have?

Bethan McCutcheon: We can put him to bed at 9 and he’ll get up anytime after 1 in the morning. In a nanosecond, he’s upright, down the hall, squealing and excited to start the day. He’s very happy. He may go back to sleep at around 5 or 6 in the morning, or he may not.

BLOOM: What do you do during the night?

Bethan McCutcheon: I often take Tecwyn back to his bedroom and put the indoor lock on his door and stay in the bedroom with him. He’ll pace in his room and take stuff out of the closet and dressers, and occasionally read a book. We have the room set up to be safe. I stay with him, usually for about four hours, till he’s gotten it out of his sytem, and then I can sometimes get him back to sleep at around 5 or 6. If not, I wake my husband up at 5 and I go to bed for two hours while Sean takes Tecwyn down to the playroom. He wakes me at 7 so he can get ready for work.

BLOOM: What is most challenging about Tecwyn’s sleep problems?

Bethan McCutcheon: It can be exhausting. You have to work as a team with your partner and be honest with what your limits are. If I’m tired, I do something about it. After a bad bout of sleep problems last year I drove to my parents’ house, three hours away, and showed up at midnight and went to bed for 16 hours. If we have a bad week where I’m up on consecutive days, Sean takes the kids on Saturday morning and I sleep in. We’re fortunate in that I home school the boys, which means if I can get Tecwyn to settle at 5 in the morning, he can sleep until 9 or 10. A lot of families don’t have that flexibility. They have to get back up at 6 in the morning to get the kids off to school. I can see why marriages fall apart over this. Not only are you dealing with everything about your child’s special needs, but you’re doing it with no sleep. We’d like to have a second source of income, but there’s no way I could work from 3 to 11 because then I could be up all night. Sean tried to drive a snow plough as a second job but if he had to get up at 4 in the morning, he might have already been up all night.

BLOOM: What strategies have you found helpful to promote sleep?

Bethan McCutcheon: We do a bedtime routine each night and on my answering machine I ask people not to call the house past 7:30. That’s when they have a nice warm bath, are powdered and lotioned up, brush their teeth and take their reflux medicine. Tathan can go straight from bath to bed, but Tecwyn likes to come down to the playroom to sit on the couch and snuggle and watch half an hour of the Disney channel. Then we bring him upstairs and one of us lay down with him until he falls asleep. That could be within 15 minutes or longer. Sometimes when Tecwyn gets up in the middle of the night I’ll repeat the whole bedtime routine again – but at 3 in the morning. I have a lock on the inside of his door just in case I fall asleep, but I never do. I stay with him and let him do his thing and I lay on his bed. If I’m very tired I’ll get Sean, but I try not to get him at first.

BLOOM: How do you manage on so little sleep? Doesn’t it affect your mood?

Bethan McCutcheon: It’s become our norm and most of the time I’m upbeat and positive. We have a system that works for us and allows us to catch up on sleep and plan the day according to how Tecwyn has slept. It would be very difficult for us if I had to work and take the kids to school at 8 in the morning. The only time our situation is really hard is when we’re away from home. Our family lives three hours away and wants us to visit, but we don’t have the coping mechanisms there – the set up of the house and the playroom – that we have here, and everything falls apart. We’re also limited in that we can't go out together, like on a date night. The only time we tried, Tecwyn stayed up with my parents until we arrived home at 2 in the morning. And we can't go out on our own. Sean can’t go away for a golf weekend and I can’t go out for a girls’ night. We’re a big part of each other’s coping mechanism and we know if one of us goes out we’re throwing the other person under the bus.

BLOOM: Do you find people understand Tecwyn’s sleep problems?

Bethan McCutcheon: Unless you’re living this, it’s very hard to understand. People give us all kinds of advice and sometimes people make negative comments. It’s hard for people to believe that a child can be up a good part of the night and still be the Duracell bunny the next morning. I always envisioned my life would be different at this age. I had a goal of becoming a school principal by the time I was 36. But maybe this makes sense of why I became a teacher. It wasn’t to teach other kids, it was to teach my own.

What advice would you give other parents whose kids have sleep problems?

Bethan McCutcheon: My biggest advice would be to be honest with yourself and come up with a plan that works for you and your partner. Don’t compare yourself to what other people are doing or how I cope. For some families, it’s best for the child to take medication to lull them. Other families use specially-designed beds that are enclosed at the top, to keep their child safe. One dad adapted it and put a TV inside so the kid can watch DVDs when he gets up. When I showed a flyer about these beds to some friends and relatives, people gasped: “How could you put your child in a cage? That’s disgusting.” Wow. They just don’t get it. For parents coping with these issues, the enclosed bed is safety and peace of mind. Some parents try special diets or use heavy-duty shutters in the room or get respite so they can have a break. In addition to coming up with a plan that works for your family, I’d suggest connect with other families. That can give you a feeling of normalcy and help you cope. We’re on a google group for parents of children with Angelman in Ontario and we’re always sharing stories about what to do and what’s helpful. We laugh about how we have mental maps of every squeaky floor board in the house, and how to step around them.

The McCutcheons live in Haliburton County in Ontario. They attended an Angelman conference in Orlando last year where a playroom was made available 24 hours a day to accommodate children who were up during the night. The Canadian Angelman Society conference is being held in Montreal in July and includes a workshop on sleep disorders.


While I don't have a child with Angelman Syndrome, I can so relate to this post. My daughter, now fifteen, rarely slept well through the first dozen or so years of her life. My husband and I have managed a very fine sleep routine that is perhaps inappropriate to those who don't know what it's like. Thank you for this clear interview and for sharing your "sleep story" with us! I wish you rest.

I love the idea that at your national conference, there is a 24-hour playroom available! One of the most profound, uplifting effects of going to a conference of people affected with a particular disorder is the sense that, finally, you're among people who get it, who share your assumptions and challenges. At conferences for my and my daughter's disorder, they always make sure several of the refreshment tables are lowered, since people with our disorder are often very short-statured and/or use wheelchairs. For the first time in their lives, people feel like their needs are being not just accommodated but given priority. I imagine it feels similar to be at a conference where a 24-hour playroom is available!

Thanks for this wonderful interview, Louise. I also wish the McCutcheons rest!

Thanks Elizabeth, Ellen and Kate (great to see you here again Kate!)

I thought the 24 hour playroom was a tremendous idea and I loved what you said, Ellen, about accommodations made at your conference and how they make people feel: accepted and respected and that they belong.

I admire Bethan's approach of figuring out what works for her family and sticking with it, even though others may not understand or judge. I also am in awe of how she's able to remain so upbeat on so little sleep! There is obviously a lot of love in this family. I can't wait to hear more about Tecwyn and Tathan and their adventures. Thanks Bethan and Sean for sharing!

Thank you, Louise, for posting an article about Angelman Syndrome. Izzy's erratic sleep pattern is indeed one of the hardest aspects of her syndrome. It makes it difficult to tackle the other issues when you are sleep deprived. Would you mind if I linked to your interview?

Hi Erika -- Of course you can link -- that would be wonderful! I think Bethan would be a wonderful contact for you. We would love to run a guest blog about you and Izzy sometime. Hugs xo

We're on week 5 of an insomnia stretch with our son that has dystonia. He wakes up at 2, goes back to bed around 4:30 or 5 and were all up at 6 for the daycare and 2 working parents run around. Right now he's sleeping half his nights on a good week. I thank the Lord for my husband who takes half the time awake. Other parents try to give tips that worked with their "normal" ( I hate that word ) children, but as you said, they don't get it. Add this on top of meeds, mris, ct scans, blood work and therapy appointments, 12 doctors and 15 therapists and it is one busy life! Bon courage à tous!

We have the same issues with our almost 8 year old with special needs. Any time we mess with meds we may be up for days at a time. The Ipad has been a huge help. I can totally relate to travel and company as traveling with him is virtually impossible (even with meds to sleep) as you can never guarantee he will sleep. When people come over, they may be up with him screaming (even is we are up with him) and it isn't always mad yelling just hyperactive, excited, want to be awake yelling! "Mom, go outside" and he will yell it repeatedly until you do it. Even family struggles to understand the sleep issues our son has. Thanks for your advise and thoughts. I've bookmarked your blog!