Today we’re exploring a topic that many parents of autistic children can relate to: Sleep struggles. We’ll explore the challenges surrounding sleepless nights. We are sharing our personal experiences and discussing strategies that have helped us navigate this exhausting journey.
Key Takeaways
Common Sleep Struggles: Many parents of autistic children face significant sleep challenges, often exacerbated by anxiety and sensory sensitivities.
Impact of Sleep Deprivation: Lack of sleep can worsen not only behavioral issues but also sensory struggles and overall well-being for both the child and the parents.
Trial and Error: Finding effective sleep solutions often involves trying various strategies, such as bedtime routines, environmental adjustments, and calming techniques.
Role of Melatonin: Melatonin can be beneficial for autistic children who struggle with sleep, but its usage requires careful monitoring and sometimes experimentation with different forms.
Communication and Support: Open communication with children about their sleep needs and preferences is crucial in finding solutions that work for them.
Self-Care for Parents: Managing sleep challenges can be exhausting, highlighting the importance of self-care strategies for parents, including seeking support and prioritizing rest when possible.
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Transcript
[00:00:00]
Hello and welcome to the Autism Mums podcast. I’m Victoria. And I’m
Natalie. We are two sisters raising autistic children who know the
joy, the challenges, and the everyday moments. This is a supportive
space for honest conversations, practical tips, shared strength and
expert advice. Whether you are celebrating a win, surviving a
meltdown, or just trying to make it through the day, we are right
here with you.
Join us as we share the ups,
the downs, and everything in between parenting autistic children.
Natalie Tealdi: Today we are exploring a topic that many parents
of autistic children can relate to. Sleep struggles. We’ll explore
the challenges surrounding sleepless nights. We are sharing our
personal experiences and discussing strategies that have helped us
navigate this exhausting journey.
Victoria
Bennion: For us, the sleep challenges started in line with
when my son’s [00:01:00] anxiety hit a
real peak, and , it was all coming together at the same time. All the
struggles were getting so much worse and lack of sleep was one of
them. . He would just be up till the early hours of the morning.
It would get to 2:00 AM he’d
just be completely unable to go to sleep. And it was at a time when
he was so anxious as well. The lack of sleep was making everything
else so much worse.
It was making the sensory
struggle so much worse. It was making the anxiety the next day so
much worse ’cause he hadn’t even rested and he’s running on empty.
Natalie Tealdi: What sort of age was he then?
Victoria Bennion: He was eight. It was just something that
gradually, got worse., It was really, really exhausting. And we
weren’t yet at the pediatricians, and I didn’t know anything about
the link even because this was before we had a diagnosis, I just
didn’t know why he couldn’t sleep and we were trying everything.
We tried, going to bed
earlier. Maybe he’s overtired, and we’re getting to the point he’s in
bed and we’re past it. We tried baths, we tried [00:02:00]
turning the screens off earlier.
We tried, , listening to
music. We tried this lovely projector
We tried blackout blinds
again, which we still have from when he was little. , We moved the
room around. . He, didn’t like to be under the window for a while, so
move the bed. Mum found a, a spray, it was supposed to aid sleep and
you sprayed it on the pillow. We tried that. , Oh, weighted blanket
We certainly went down that route of trying all the things that we
could think of.
But actually for us, at that
point, nothing was helping. It was leading up to the pediatrician
appointment, , and I was talking fairly regularly to the secretary,
just sort of checking in on the list and things and talking about the
struggles.
And she said to me, do you
give him melatonin? She said, you need to talk to the doctor when you
get your appointment. Which I did, and she explained to me that a lot
of autistic people don’t make enough [00:03:00]
melatonin and that’s why they can’t sleep.
And she suggested trying a
melatonin gummy but then it explained that she couldn’t prescribe it
and gave me a website where I needed to go and order it from America.
So that’s what I did.
While I was waiting for us to
arrive, ‘ I mentioned it to a friend and she told me that she used
melatonin for her autistic child. At that point, we were getting very
little sleep so , she gave me a some of hers. She didn’t have the
gummy, she had liquid and , with his very restricted diet. I didn’t
even know how I was gonna get it into him, but I remember putting it
into one of his, yogurts and stirring it round and he just, he went
to sleep really, really quickly. It was within, 20 minutes. And he
was just. Flat out fast asleep. And you think that you’d be relieved
but I was in proper panic,
Natalie Tealdi: Oh no.
Victoria Bennion: Because we had been for weeks and weeks of no
sleep, that this was completely [00:04:00]
foreign , this seemed really unusual
so that was, probably my
introduction to sleep struggles.
Natalie Tealdi: . Our started a lot earlier, so our son. Gave up
naps really early, like 18 months old. I think 18 months to two years
was a real time where we noticed things changed. But being our first
child, it was quite tricky to really recognize the differences, I
suppose. It’s only now that I have my daughter and she sleeps really
well, but I realize, , what an issue that was for our son.
But, , bedtimes would take
hours and hours, hours and hours. And he even now is too scared at
night. And we tried everything you can think of like changing the
bedding. He doesn’t like wearing pajamas ’cause I don’t think he
likes the feel of the material of the pajamas against the duvet
covers.
We tried changing his room.
Different room in the house.
Victoria Bennion: [00:05:00] Something
that we didn’t mention was once you get to sleep, staying asleep,
didn’t necessarily happen either and.
Natalie Tealdi: No,
If our son wakes up at, in the
night needing the toilet, he thinks I’m gonna get up. No. , And he’ll
just get dressed at four o’clock in the morning because he’s awake
and then trying to convince him to go back to sleep.
It can be really hard.
Victoria
Bennion: Four o’clock’s an amazing time to get up and
start your day. You could get so much done.
Natalie Tealdi: Yeah, so I think anxiety around sleep is quite a
big thing. But like you, melatonin is our friend.
And it does feel strange
given, I think maybe ’cause it’s not prescribed, it feels odd and
you’re buying it from the internet, but it’s recommended by the
doctor,
Victoria Bennion: Did you tell anyone about using melatonin? I just
wonder what reaction you got was everyone positive around you?
Natalie Tealdi: do you know, I don’t remember any conversations
that have been
but it’s not really something
I talk about a lot, to
Victoria Bennion: I mentioned it to somebody I was already anxious
about it. And she [00:06:00] said, she
had heard that it can stunt growth and I. There. Were , , other side
effects and it’s worrying, isn’t it?
Because you are already not
sure if you’re doing the right thing. But if he doesn’t have it,
literally can’t sleep and he can’t function, he can’t at all access
school or life in any way. ’cause Absolutely exhausted.
Natalie Tealdi: And what does that do to your health? If you don’t
sleep
enough, you know that’s bad
for your body too.
Victoria Bennion: It’s really bad for your body, but it’s all these
things you’re trying to balance, isn’t it?
You’re picking the right thing
or the wrong thing and . I think it’s tricky. It’s tricky. But, , my
sons now have melatonin for a couple of years and, , , it’s a
lifesaver for him. He knows what he’s taking. He wants to take it and
if he doesn’t take it, he still can’t sleep.
It’s that straightforward.
Really?
Natalie Tealdi: Yeah. We do find we need to take a break from it
now and again. ’cause sometimes I think, I dunno if your body builds
up a resistance to it,
but we do find that it doesn’t
work.
Victoria Bennion: I think I’d heard that. And we do take the breaks
as well. , Usually in the school holidays and not [00:07:00]
for the whole school holidays, but we’ll try and take a week. But
it’s challenging for him.
Natalie Tealdi: . Our son gets really upset if he can’t sleep, and
I think he also expects it to happen immediately. You know, as soon
as we finish stories, turn out the light and he thinks he should be
asleep. So it’s, educating them around. It takes some time and take
some deep breaths,
try and relax, but we still
stay with him while he falls asleep.
Cause he doesn’t like to be
alone.
Victoria Bennion: we have exactly the same. , We’ve had the odd
spell where he’s been really keen to try, particularly if he thinks
he can step a little bit later ’cause I’m gonna do it myself. And
once or twice it’s worked. But on the whole, it causes a lot of
anxiety.
We’re not there yet.
Natalie Tealdi: We’re not either, which is interesting ’cause my
3-year-old is quite happy to pretty much go to sleep on our own. So
Victoria Bennion: that’s very difficult.
I did have trouble with both
of mine. My other child, . She never slept. I remember talking to the
health visitor and saying, you know when they said that you’re
[00:08:00] gonna be sleep deprived when
you have a baby?
And I didn’t know that it
meant no sleep. It wasn’t until I have my son who’s the one with the,
the sleep is now, but I was like, oh, some babies still actually
sleep. ’cause he did, but she didn’t
she didn’t sleep through the
night till it was gone 18 months for sure. And then she needs
somebody to sit with her till she was about eight.
So it varies, but sleep
difficulties, , they’re challenging.
Natalie Tealdi: They’re a killer.
Victoria Bennion: Yeah, they are killer. Yeah. I think for you, you
certainly have these really, really early starts, don’t you? So you
have to sleep in, do you stay till he goes to sleep and then.
Natalie Tealdi: And then one of us, when it’s our bedtime, one of
us sleeps in with him the whole night because he will wake up and
then he won’t be able to go back to sleep, and it ends up in
meltdowns and then nobody sleeps.
Victoria Bennion: Especially if he’s thinking four o’clock is time
to get ready for school you just have to do what works to help your
family tick along and bearing in mind what you’ve got coming up the
next day. It’s all a big juggle and a balance, [00:09:00]
isn’t it?
Natalie Tealdi: Definitely. And , you have to really come from
that point of understanding and try not to get across. ’cause ,
obviously you’re tired and you’ve got loads of things on your mind
about what’s gonna happen the next day. But deep breaths and support
them. ’cause that’s number one
thing, isn’t it?
Victoria Bennion: That’s it. And , it’s hard for parents and carers
when we are getting tired. If everyone is sleep deprived, no one’s at
their best. So I do think that that is a real, real challenge.
Natalie Tealdi: Yeah.
Victoria Bennion: When I have my daughter and, she was a baby in,
in sleep.
As I said, was very few and
far between. , It did make me really reflect on the fact that it is
like a form of torture, sleep deprivation, and how impaired you are
the next day when you’ve not slept. I read a study about it, , it was
comparing it to somebody who drank a lot of alcohol.
You were impaired. To such a
degree. Coordination’s all off, you can bump into things. Your
thought processes aren’t very good. It’s very, [00:10:00]
very hard for families who are trying to operate when they’re caring
for a child, who can’t sleep.
Natalie Tealdi: Yeah.
Victoria Bennion: So what tips would you share from your journey on
managing a child that doesn’t sleep well.
Natalie Tealdi: Don’t let your melatonin run out. I nearly did
that recently.
Victoria Bennion: Yeah. There was a supplies shortage, wasn’t
there? I know. , We were low.
Natalie
Tealdi: I was okay with the supplies shortage. I was on
that, but, I just forgot and didn’t realize we’d run out. But luckily
we have friends who have it, so I could, filled a gap. I think it’s
just supporting them as much as you can.
What do they need? Like with
our son not being able to wear pajamas, once he was able to
communicate that, that was really helpful. So we don’t bother that. ,
Victoria
Bennion: My son likes thick, fluffy pajamas and would
really like to wear them all through the summer as well.
Natalie
Tealdi: Yeah, I’m like that.
We tried different bed covers
that you can get, those stretchy sheets that go over, which provide a
bit of pressure. We tried that.
He liked it, but then when it
went to actually sleeping in them, he didn’t [00:11:00]
want to continue. So I think it’s just different things work for
different people, don’t they?
Victoria
Bennion: Try the different things down the list. We’ve got
a waiter blanket, but it didn’t do a lot for helping my son sleep.
But then I’ve heard of people who worked really, really well for
Natalie
Tealdi: You get these bed tents as well, some people
really like those, don’t they?
Victoria
Bennion: Yeah. That was one of the things we tried and my
son had spells where he’s found that reassuring to have the bed tent
feel safer.
Natalie
Tealdi: I find warmth helps. But more so in the winter,
like a hot water bottle or one of those microwaveable, teddies are
quite helpful for getting him
Victoria
Bennion: Yeah. The right temperature’s important,
my
son will, need to spend
a lot of time rearranging his bed too. Everything has to be, in the
right position. He needs time allowed to rearrange all things that
are on the bed. So they’re all in the right places.
Natalie
Tealdi: we have that with where the covers are.
Very specifically has to be a
[00:12:00] certain way. If there’s too
much cover over one side, that that’s really frustrating for him. So
yeah, it’s just sort of supporting and allowing that extra time,
isn’t it, for
Victoria
Bennion: Yeah, allowing the extra time knowing that you
might just have to try lots of different things. , And speaking to
the pediatrician, speaking to them about melatonin and how much you
should be giving, I. Then that’s not always straightforward because
it depends how your child is about, the way that they like to take
it.
We found it came in different
forms. As I mentioned, my friend who lent me some, it was a liquid.
But we actually use the gummies now. What do you use?
Natalie
Tealdi: We use the liquid, but there are dissolvable
tablets that just dissolve in the tongue.
Victoria
Bennion: Even if you decide to go down the melatonin path,
then you might need to experiment with the different ways it comes
and what your child can tolerate and not all children like it. My son
does something.
, I think it’s worth covering,
is when you give the melatonin, because when we first started taking
it, he would take [00:13:00] it, but he
wasn’t in bed, he wasn’t at that point, so he wasn’t relaxing. And
I’ve heard from children who take it, you can push through it,
Natalie
Tealdi: yeah, we definitely have that. We usually give it
about half an hour, 40 minutes before we want him to be asleep. But
sometimes, things happen and it gets delayed and if you go past that
point, then he can’t sleep
Victoria
Bennion: It won’t work. We try to do it. When I know that
he’s about to get into his whole bedtime routine, usually before he
cleans his teeth. I mean, before we start the, the process of working
up to clean our teeth, at that point where we’re trying to, wind
down.
Natalie
Tealdi: Yeah.
Victoria
Bennion: he has it when he is in bed, I would say that 20
to 30 minutes seems to be how long it takes my son for it to kick in.
Natalie
Tealdi: Yeah.
Victoria
Bennion: So what are your top tips for getting through the
day when you haven’t slept? Let’s look at it from the parent care
point of view.
Natalie
Tealdi: Taking out anything [00:14:00]
non-essential from your day. If you’re gonna do the food shop that
day, oh, I’m not gonna do it now. I’m too tired. And it’s just
grabbing moments when you can. If I can do like a five minute
meditation or something in my day just to shut my eyes, if I can have
a nap, that would be amazing.
But it doesn’t often happen.
Sometimes I might ask my mom to pick up one of the children so I can
have an extra 15 minutes. , Get to bed early that night if you can,
that kind of thing. And caffeine. Lots of caffeine. Caffeine is my
friend.
Victoria
Bennion: I’m really sensitive to caffeine, so I can’t do
that quite the same as you, but I maybe get more of an MPH from just
a bit of chocolate or, I’m not advocating anything particularly great
here. I’m sure that if anyone in the health professions, listen, they
probably got some better tips.
Natalie
Tealdi: Yeah. Yes. .
Victoria
Bennion: So I will say that it was recommended to me by a
health coach , protein, you know, try to make sure that your meals
have got protein in. And I do find that that helps particularly
around the middle of the day. And also I will, I will pop in a hot
chocolate and I’ll put in some [00:15:00]
chocolate for me.
That helps just wake me up a
little bit. And if I get really desperate, I will have some, ,
Coca-Cola. But I have to be really careful because I goes the other
way and then I don’t feel very well from the caffeine. But yeah, just
count down to the next night and hope that everyone’s tired and you
can catch up.
Natalie
Tealdi: Actually, you say catch up. I think I used to do
that. I used to keep a little record, like, oh, I’ve had one hour
less sleep or two hours less sleep. And actually it was mum who said
to me. Just stop recording it, stop thinking about it like that
because it’s just not good to think that you’ll ever catch up.
Victoria
Bennion: Yeah. Okay. Ketchup’s probably a bad way of
phrasing it, isn’t it? But yeah, that you’ll get some hours in that
night and you’ll feel a bit better tomorrow, and you just keep
hoping.
Natalie
Tealdi: We hope today’s discussion on sleep struggles has
resonated with you and provided some valuable insights. Remember,
it’s okay to seek help and try different approaches to find what
works for you and your family.
Thanks for joining us today on
the Autism [00:16:00] Mums Podcast. We
hope you have found a little support, a little solidarity, and a
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Until next time, take care.