This Week’s Podcast

This week our topic is one that is a top request by parents: sleep. I covered it a bit with Dr. Joshua Feder in a previous podcast. Although neither this episode’s guest nor I are sleep experts, we want to come at the topic from a Floortime lens and present some helpful information. My guest is Colette Ryan, an Infant Mental Health Specialist, who is finishing up her PhD with Fielding University on the topic of parent self-efficacy–which we will podcast about in a few months. She is a DIR Expert and Training Leader with The International Council on Development and Learning and has just accepted a new position starting a new Floortime Reggio Emilia school with a group in Tokyo, Japan!

Which part of sleep are we struggling with?

From ICDL’s parent support meetings that I facilitate, parents come with all of these struggles: My child has difficulty falling asleep, staying asleep, or waking too early. I shared how my son breast fed every 2 hours until he was in the hospital at age 28 months and then continued to nurse until age 5 and a half, because it was the one sure way I could help him stay regulated. Even though it was no longer every 2 hours, I did not get a full night of sleep that entire time, and he didn’t sleep through the night until at least a few years after that. It was exhausting!

Colette added that 50 to 80 percent of autistic individuals have sleep challenges. Is it that the problem is falling asleep? Colette wonders if it’s the person’s sensory system? Is it difficult for that individual’s sensory system to calm down? What about staying asleep? Is it that the person is going through the sleep cycles and waking in the middle of the sleep states? And if an individual has a hard time waking in the morning, at what point in their sleep cycle are they? There are four points in the sleep cycle and we need the restorative sleep for our cognitive and mental health, Colette says.

Colette continues that there are other children who wake up much earlier than we want them to, and this is many children–not just those with a diagnosis. Their body doesn’t allow them to know that if it’s still dark, they should go back to sleep. This logical thinking is a higher capacity of ‘if…then‘. “If my caregivers aren’t awake yet, I shouldn’t get out of bed.” Sense of time is also in the sixth Functional Emotional Developmental Capacity (FEDC), so if you wake up and it’s 4:30AM, that might not mean much to the individual who has not yet mastered this capacity.

The ‘I’ impacts sleep

Individual differences will impact a child’s ability to fall asleep, stay asleep, and wake too early. These include arousal level, and their tactile, proprioception, and/or vestibular systems. Colette says we don’t need to be an Occupational Therapist to see how these factors can affect our child’s sleep. Colette says that some children need to move to stay regulated and by attuning to the child in front of us, we can figure out if our child maybe does need to run and jump or move around in order to be regulated enough to settle in order to go to sleep. Even with sleep, we need to attune to what the child needs. Use aromatherapy–if that’s what your child likes. Dim the lights–if that’s what your child needs.

Screen Time

Screen time needs to stop fairly early before bedtime, too, Colette states, because using screens activates that pleasure centre of the brain, and if you don’t know when to stop, you get over-aroused. I mentioned that I had heard that screentime stimulates the visual system, and that makes you crave more visual input. This is hard for parents because screens are what give us a break to do the dishes or other things. And we know from my podcasts with Occupational Therapist, Maude Le Roux, that the visual and vestibular systems are very much connected.

And screens aren’t going away, Colette says. When is it appropriate to watch the screen? What are we watching on the screen? How long are we watching the screen? And there’s passive and active screen watching, as well. If we can do active watching with our children, we’re still using the relationship piece to comment and use our affect about what we’re watching together.

Sensory considerations, Regulation, and Attachment

Next, we talked about tactile input. Perhaps our child doesn’t like the texture of their pajamas if they’re picky, or a tag is bothering them. Maybe the sheets or blanket don’t feel good against them. Maybe it’s their pillow. I shared that my son always kicked off his blankets and still kicks them around in his sleep today. Colette says it could be the feel of these things, the smell of them, or the type of pillow.

What we know about sleep is that we need restorative sleep, Colette repeats. If we don’t get that, we see more dysregulation the following day. We could have behavioural issues because of not getting that sleep. Dr. Gordon Neufeld talks a lot about the need for a sense of safety and the attachment piece as the pre-eminent need, even before hunger. Colette says that we are wired for it. You could also put Mom or Dad’s shirt next to the child when they sleep so they feel safe when they wake between their sleep cycles to help them fall back asleep. 

Colette brought up secondary altriciality and how we come into the world needing someone to take care of us, so those first relationships are about survival and are born with attachment-promoting behaviours. After that, it’s about really liking the feeling of being with the person. We talked about separation anxiety that our children can go through in transitions, and sleep is a transition from being in the comfort of our caregiver to having to regulate ourselves to sleep, which we may not be developmentally ready to do.

How do you perceive the world that you are in when it’s time for sleep and does it feel safe for you?

Colette Ryan, Infant Mental Health Specialist

Colette also stresses that we’re talking about a perceived sense of safety rather than physical safety. It could be that the sheets feel funny, so I don’t feel safe, or it’s too dark, or not dark enough, or I can still hear people talking, but can’t process what they’re saying, so I don’t feel safe, and can’t fall asleep by myself. This makes Colette think about Dr. Stephen Porges’ Polyvagal Theory.

Sleeping next to our children

Next, we talked about how many parents of autistic children find themselves needing to sleep with their children in order for the child to fall asleep. This was true for me for many years. I recall hearing a presentation at the DIR conference in New York in 2020 by two staff members of Threshold Community Program in Atlanta when a staff member of the Rebecca School asked about how to help parents who are sleeping next to a child who is already in puberty.

I cautioned parents listening who still sleep with their children to start the process of getting them used to sleeping in their own bed earlier than I did. We need to set firm limits with our children and when we don’t, our children feel unsafe because they don’t know what the limit is. Dr. Neufeld talks about this, and Colette says that Dr. Greenspan has a great radio show about limit-setting (discipline) on ICDL’s website where he stresses that you can’t set a limit on somebody who you don’t have a relationship with.

With sleep, Colette continues, we get into patterns. We get into patterns with everything we do. Sleep is something that both parents and children need, though, so many parents are doing whatever needs to be done in order to get a good night sleep. But for some people it’s not a good sleep because they’re sleeping on the floor or in a twin bed with a ten-year-old. When you set a limit of sleeping in your own bed, it will be difficult for several days, until the individual finally realizes that this is a new pattern of behaviour. The parent will then continue to let the child know that they will provide what the child needs to feel safe.

Setting Limits

I shared that Dr. Gil Tippy gave me a reality check when he told me that if I wanted my son to sleep in his own bed, I should prepare to set the limit when I can plan to go 3-4 days or up to a week with no sleep. You set the limit and you let the child have the tantrum and stay firm that this is the parents’ bed and that is your bed. This brought up the topic of tantrum versus meltdown where I brought the example of my son as a baby crying and escalating to the point of vomiting if I left him in his crib to sleep. I wouldn’t do that to a baby.

Colette points out that as a baby, he wasn’t there yet, developmentally–the ‘D’ in the DIR Model. We would want the child to be developmentally ready to have that limit of staying in their own bed. It is a trial and error because if it is a meltdown with an older child, you would have to know if it’s a tactile issue that is causing it, for instance (or something else). There is no prescription. It really is an individual journey that is trial and error to determine what works best for your unique family circumstances.

I confessed that I just didn’t have the energy and just gave up and would lay next to my son until he fell asleep. But sure enough, exactly what Colette described would happen: he’d fall asleep and I’d be awake. As soon as I fall asleep, he squirms and wakes me out of my sleep cycle. Colette mentioned that not getting a good night’s sleep impacts our self-efficacy as parents. Do we feel successful if we did not get our restorative sleep and are overly tired, finding it hard to regulate and co-regulate?

Interoception

When we think about Individual differences, we also have to think about Interoception Colette wonders if there is a constipation issue? Is there a reflux issue? Laying down to sleep when you have reflux is painful, she says. What about headaches–especially during allergy season? You might need to have a pillow that raises the child’s head higher. Another thing that effects autistic children is seizures. My son has an irregular EEG and is at risk for seizures, which he has had in the past, and there are parents in ICDL’s parent support group have children who have seizures. This is something that is really out of our control as parents, and can make us feel so helpless, I tell Colette.

Colette says that this is another thing we have to attune to. We figure out what our child needs to feel safe which includes their sensory system and that interoception piece. I talked about that interoception piece of feeling when you have to have a bowel movement that can also impact the ability to fall asleep. Colette brought up children who may not feel when their body is tired and requires sleep. If you don’t understand that signal, the idea that you need sleep escapes you.

In the long run, it’s so much benefit for everyone in the family if you take those difficult 4 or 5 days, or weeks, to make that new routine of everyone sleeping in their own bed, so that everyone can get that restorative sleep and be able to function at their best each day. Colette also talked about research that suggests many with an autism diagnosis may not have that memory piece that helps them recall what it feels like when they were tired last night and went to bed. It’s like it’s a novel task each night to go to sleep (Neil et al., 2016; Pellicano & Burr, 2012).

Regulation

Amy Lewis and Heather Spann teach us through Powerfully You about regulation, breath control, and staying regulated within your window of tolerance, Colette says. If you’re not in that window, you might not be able to fall asleep. It made me think of the frantic nature of bedtime and how we use a lot of words and a more firm tone, which can throw our children out of their ideal regulation window. We always say that we want to slow things down with our kids who may struggle with processing things quickly in real time. In addition, some children may need to move a lot in order to get to a calm and quiet state.

I brought up having structure and predictability for bedtime, and setting expectations. A predictable schedule really helps children, then within that structure we can expand and stretch through play. Even if our kids are not yet interoceptively aware of the sense of time, knowing what’s coming up in a schedule supports their regulation. At my house, we have bath be at bedtime, which gives a lot of proprioceptive input, having water around the body, which supports calming down before sleeping.

Following bathtime, we will look at a few books, then do lights out. Proprioception is very organizing, Colette says. By attuning to our kids and helping them organize–using the relationship that creates a routine with the favourite books–it forms a nice pattern for bedtime, she adds. Dr. Gerry Costa talks about needing ‘A.G.I.L.E.’ (Affect Gestures Intonation Latency Engagement). We can use our affect to support the regulation that’s needed to fall asleep. The ‘L’ is for ‘latency’ and Colette says that Dr. Costa says “Less language, longer latency“. That is, let’s use our affect rather than our language. Affect is a great motivator.  

Follow the Child’s Lead

This discussion around affect made me think about how we follow the child’s interests. Recently in the ViSPA podcast, with the free, 150-page PDF download, my son and I started doing the ‘Magic buttons’ game Toni Tortora described at bedtime, as well. My son really looks forward to doing this activity. We can figure out what works for our child based on their developmental capacities, their interests, and their individual differences.

In Functional Emotional Developmental Capacity 3 and 4, this is where play is about playing out what a child has seen on a show, for example, Colette explains. Getting into a pattern of acting out a bedtime scene from the show ‘Peppa Pig’, for example, might be an idea that supports a child’s sleep. There’s a lot we can suggest, but think about what they like. What helps them relax? 

There’s the Qigong massage that works well to support sleep in some individuals, Colette continues. I shared that Occupational Therapist, Maude Le Roux, talks about giving deep pressure massage when they wake up and when they go to bed and I did that instinctually with my son when he was a baby, and he still enjoys leg and foot massages at bedtime. Colette adds that maybe you do olfactory support before bed. Colette is confident that parents can figure that out. 

Nightmares

When our children get symbolic, they may begin to have nightmares. Colette says that a Floortimer is the only person who will cheer when you tell them this, because they are excited that the child is becoming symbolic. Your brain will have storylines in your head when you get into a certain cycle of sleep. When kids wake up and don’t know what to do about it because they had a storyline and are suddenly awake, Colette prefers to talk about it.

Colette suggests asking your child about what was happening in their storyline. Suggest writing it down or drawing it out. It helps them make sense of them. If they had a dream about Marshall and Chase from the show Paw Patrol, Colette suggests playing it out. Even if it’s a negative storyline, she continues, you can say, “Wow, that must have been hard for you. Do you want to tell me about it?” Or, you can simply say, “That is a big feeling!” We address storylines differently depending on where your child is developmentally, and Colette gives an example for FEDC 4, 5, and 6.

Other Concerns or Setbacks

I mentioned how there’s always something that comes along, and a new routine that’s working may not last forever. Things change. Routines change. T. Barry Brazelton’s work on TouchPoints where he talks about things falling apart for a little while and building up resiliency before things come back together again, is helpful, Colette says. I mentioned my podcast about Developmental Growth Spurts that talks about this, as well.

Is the individual having ‘bad’ dreams or do they have bedtime separation fear? Fears from being alone or doing the hard thing of going to sleep by yourself can be overwhelming, Colette says. She sometimes has parents put one of their worn (and unwashed) shirts on the child’s pillow, so as the child is going from sleep state to sleep state, they can sooth with the scent of a caregiver rather than waking up with the fear and alarm of being alone. 

Sleep cycles can become disrupted for many reasons, and Colette prefers melatonin to medication if possible. Many times the individual needs to get back into a cycle that fits the family’s needs and the melatonin can support getting into a better cycle, she suggests. 

Does the family have a bedtime routine with visuals? It really does not matter if the time changes for when a child goes to bed, Colette says, as long as the routine is the same. Remember that some kids have decreased meaning making for words, so just talking about the routine is not always enough. The visual representation can be really helpful, Colette adds.

Another Sleep Podcast

Check out this sleep podcast from Toronto’s Holland Bloorview Kids Rehabilitation Hospital on autistic teenagers and sleep.

This week’s PRACTICE TIP:

This week let’s think about our child’s sleep and wonder about their individual differences and their impact on the child’s sleep. 

For example: Does your child have a hard time calming down to fall asleep? Do they have sensory considerations that impact their ability to feel safe in bed?

Thank you to Colette for our candid discussion about DIR considerations around sleep. We hope you found it very enlightening and will consider sharing this post on social media.

Until next time, here’s to choosing play and experiencing joy everyday!

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