Dr. M.O. Réthoré works as a pediatrician at a major Paris hospital. For years devoted to genetic research, she has extensive experience with both children with Down syndrome and children with other conditions.
In this interview, she offers practical advice on nighttime difficulties.
What are the biggest sleep problems in children with Down syndrome?
Newborns with Down syndrome sleep more than other newborns. They doze through much of the day and show little sign of wanting to feed. For a mother already grieving, nothing is more maddening than watching her baby refuse to nurse. What's more, they don't wake their parents at night in those first weeks. The siblings who come later won't be nearly as "easy".
So can we say that children with Down syndrome sleep easily?
These children generally don't face major sleep difficulties—except when they have a cold. They often develop nasopharyngitis, which causes difficult, noisy breathing. In any case, they have very noisy night breathing due to nasal aplasia: they breathe through their throats. It's like snoring, which disturbs the parents' sleep and makes them anxious. You can improve things by putting saline solution in the nostrils and tilting the child's head down so he doesn't swallow mucus. Once the adenoids disappear, this problem goes away.
Apart from this noisy breathing, do you see other nighttime difficulties?
One bad habit: the child who "sucks on nothing"—really their own tongue—until around age ten. Also, nearly all children with trisomy 21 have restless sleep. They sleep but rock in bed, kick off the covers, and create noise in the process. Sometimes they move so much—bumping against the walls around the bed—that neighbors complain. You can dress them in pajamas suited to the season and, to muffle the rocking noise and respect others' sleep, surround the bed with soft fabrics or pillows.
What advice do you give so these children fall asleep and sleep peacefully?
A toy chosen by the child, not imposed by the parents, can be excellent. A teddy bear or elephant usually pleases the parents more than the child. It's better to let him choose the object that will make him feel safe at night.
A nightlight or fluorescent object can work, but only if the child positions it so he can see it. If you place it arbitrarily, he won't pay it any attention. He needs to organize his own night.
Do you favor medicine to help them sleep?
No, because medication generally has the opposite effect. The syrup that works for other children excites the child with Down syndrome. Of course, when mom and dad have friends over, the child will act up more than usual, like any child in the world. So you either take your chances and risk scolding the child constantly and ruining the evening, or—as many parents do—you leave him with a family member or trusted friend nearby. Parents shouldn't feel guilty about leaving their child with someone occasionally. Life must go on, with respect for everyone. When the child comes home, you make a fuss over him, share a piece of dessert, and show him lots of tenderness.
To encourage peaceful sleep: prepare the body, prepare the heart, prepare the spirit.
To encourage peaceful sleep: prepare the body, prepare the heart, prepare the spirit.When your child wakes at night or very early in the morning and rushes to your bed, what should you do?
This is when you have to resist the temptation. Parents—especially the father—need to step in. When your child climbs into bed at three in the morning, this is not the moment for cuddles. The father must find the courage to get up, pick up his little treasure, and carry him back to his own bed without cuddling—but gently, not roughly—and say: "Listen, it's nighttime. Mom and dad are sleeping." The child will scream. You close the door—don't slam it, or you'll show anger—and say: "The door is closed. Now you sleep. See you in the morning."
If he gets up and plays with toys in his room, well, he's living his life. As long as he's not in your bed and not making a fuss, there's nothing to say. If you find him asleep on the floor next to his bed, don't make a drama of it. The more fuss you make, the more you cement his attention on that behavior, and the more he'll do it. It's a bit like anorexia in children.
Make sure the room has shutters or heavy curtains. Since you tend to put these children to bed early, it's natural they wake early. The moment light appears, they wake up—like little birds.
More generally, what should you do when your child has a bad dream or a nightmare?
All children have fears and nightmares, especially toward the end of early childhood. Even in sleep, the child may start screaming, thrashing, panicking. You need to wake him gently but fully—get him on his feet, speak softly, and let him talk. Very soon he'll fall back asleep without slipping into the same nightmare (theoretically!).
What can you do to calm anxieties before sleep?
After the age of night terrors, there may come—not inevitably—a time of bedtime anxieties. In all cultures and in many hearts, there's a connection between night and death. Some children and teenagers refuse to sleep, afraid of falling asleep. Preparing the body, the heart, the spirit can help overcome these fears.
Preparing the body: wash, put on pajamas before bed.
Often, especially with small children, too much time passes between bath, pajamas, dinner, and bed. Make it a habit to do all body care right before bed, so there's a real break between day and the beginning of night—with the child's agreement, of course.
How do you find the right time to put him to bed?
Everyone has their own clock, which changes with age. You might think it helps to put a restless child to bed very early. It's certainly relaxing to see the little troublemaker sleep—you love him, but he's exhausting some days! But it's not always a good idea, because instead of sleeping, he might excite himself and not fall asleep until much later. You might let him spend time alone in his room, or with someone who shows affection, in silence, and then gently to bed when his eyes start to close. Stay nearby, stroking him or speaking softly.
A teenager or young adult may go to bed later than his parents. That's the natural order. Help him organize his evening, decide together when to sleep and wake, and help him stick to it.
If he's anxious, talk with him about this fear. Let him make his own bed, choosing the objects that comfort him.
Often a child shares a room with a brother or sister. If possible, give him his own small space. Make these changes with him. If he needs a new bed, go buy it with him. If you impose a new arrangement, his only thought will be to escape.
You mentioned preparing the heart?
In many families, everyone waits for dad to come home to put the children to bed. Dad arrives, there's celebration—perfectly normal—then suddenly: "Enough now, time for bed!" In minutes you go from wild fun with dad to alone in bed. The child can't understand why you're "dropping" him like this, so he screams. You go to him fifty times, you end up spanking him—almost like a grandmother.
It's better to have fun in the morning, when he wakes up. Just organize it that way.
Before putting children to bed, it's time for cuddles, stories, music on your lap or beside someone you love.
And preparing the spirit?
That remains a mystery, each person's own secret.
In monasteries, one of the profound moments is the singing of Compline. It seems to me that families could find strength, after the cuddles, to gather around the bed and say a prayer together, be silent, give thanks, and wish each other goodnight.