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...