Thursday, December 10, 2009

Sweet dreams

I recently heard about a family with two children with disabilities. Dad sleeps with his son with autism in one room, and mom sleeps with the child with a physical disability in another room.

Sleeping with a child past the time considered normal is part of life for some families of children with disabilities – for a number of medical, behavioural and developmental reasons – although it’s rarely talked about.

Maybe your child has seizures or another life-threatening condition. Maybe your child has a sleep disorder or muscle spasms that jolt her awake repeatedly. Or maybe, like me, your child has physical and developmental disabilities, and chronic pain, and you find it difficult to be hard-nosed about who sleeps where when he slips into your bed in the middle of the night.

My son is 15 and the size of a five-year-old. He has frequent joint pain and can’t speak, and his ability to use sign language doesn’t match what goes on in his head. He can’t fully express what he’s feeling. He can’t tell me everything that’s going on.

So when he brings a book to my bed to fall asleep at bedtime (and is later carried to his bed by his Dad), or slips into our king-size bed after sleeping a few hours in his room, my first instinct is that I want to provide comfort to a boy whose everyday life is hard.

At the back of my mind, critical thoughts may jostle for attention: “He’s 15-years-old. It’s not appropriate that he sleep in your bed. Your job as a parent is to create independence. What will you do when he’s an adult?”

But they usually fall away quickly because my primary goal is that he feel safe, secure and sufficiently relaxed to sleep.

It’s not every night that this happens. But it can be a few times each week. Or sometimes it goes in spells, where he’ll sleep well in his own bed for weeks at a time.

Am I wrong?


I have a chapter in my book called A History of Sleep that is about this exact same subject. It's currently over at Literary Mama where they've been editing it perhaps for publication although I haven't heard from them in forever about it. So, in answer to your question I would say resoundingly NO! You are not wrong to let your son sleep with you. Sleep is, in many respects a cultural thing and perhaps having a child with a disability is its own culture. I'm not sure the larger, more dominant culture can begin to understand this, but I, like you, struggle with it periodically.

Dear Louise,
Thank you for your kind comment on my posting at Hopeful Parents. Your blog is beautiful, and I look forward to reading and learning more about you and your work.

May you be richly blessed!
Karen (Katie's and David's mom)

I'd say, No, you're not wrong at all. That's what I would do, too...

No, you're not wrong. I wouldn't do it but that's because I like to sleep by myself and I'm a light sleeper. As for you and you're family, it works. I didn't wean my daughter until she was seven because her bottle helped her fall asleep and that was important.

Thanks everyone for your comments! I like what Elizabeth said about sleep being a cultural thing and parenting kids with disability having its own culture that is perhaps different from mainstream parenting.

Good one on BLOOM - Parenting Kids With Disabilities - it helps a lot!

We clearly share similar parenting experiences and views.
I've been reading one that I'm hooked on -
I have a feeling you'd get a lot out of it.

Incredible job on your blog; keep it up.


My daughter is 5 and still sleeps with me. It is important that she feels safe and secure. I'm not worried about what society says I should do. She has the rest of her life to potentially sleep alone. Why not have some snuggly, peaceful sleeps now!

Louise, I think you're right to trust your gut. It's so important that your son feel safe and secure and relaxed!

Thanks for this post.

It is not anyone's business as you but yours. That your child is the size of a 5 year old should not make the difference either. Even if he were a full grown man in size and age, and has pain, health issues at night, and you choose to sleep with him to sooth, comfort and care for him, that is up to you. And that it is on occasion and not all of the time is not an issue but one of choice as well.

My only concern in such scenarios is the overall harm this can do to a family in the form of the specific harm the parent is taking onto him/herself. Being sleep deprived can cause problems in any of us, especially over time. Is this doing overall more harm than good? Is there a less overall harmful way to take care of this issue so that you are not deprived of sleep, rest?

I have a friend who had a terrible car accident during after weeks of sleep deprivation due to her baby. She was so tired that morning that she was not in good control of driving. This is where the risks that come from parents' sacrifices for their children's comfort and needs need to be balanced. I see this also with parents of children who need to be lifted or otherwise physically supported, with parents getting back, muscle, body degeneration and pain from these activities. Where is the line, is the question.

Catherine -- Thank you very much for your thoughtful post. You're right -- I do try to justify my decision based on Ben's size and that it's not every night. But I don't need to justify doing what I think is right to provide comfort to my son in pain.

Your other points about loss of sleep and harm to parents are important. It is hard to strike that balance of ensuring our child's comfort but not at the expense of our own health. Hope we hear more from you!