Sleep Support

[SamC1234]

Hi all,
I am writing this post about my son Oliver. He has just turned 4 year old and is far along the autism diagnosis process.

We are having a horrendous time with his sleep - we obviously recognise this is a very common issue in autistic individuals but this is gradually getting worse and worse as time goes on.

To give you a full picture, ollies issues around sleep began around 18 months ago where he started to take a sudden dislike to his bed. He suddenly demanded to be walked to sleep in his pram which over time we accommodated. This was then paired with taking over an hour to get him down to sleep at night.

Eventually we were reluctantly prescribed a small dose of melatonin which really helped with this and to which he still gets. This helped with his sleep a lot until around 6 months ago where more issues surfaced. As he started to sleep in his pram, he became very attached to this. Whenever he had a meltdown he would shift himself into his pram to calm himself and would want to be walked to calm down. He made this pram his safe space which was completely fine with us.

Previously if he woke in the night - which wasn’t too common over 6 months ago, we were able to rock him for a few minutes and he would fall back asleep. However in the last 6 months he started waking up more and more and demanded to be walked back to sleep, and so we would have to walk him around where we live for however long this takes. He was generally waking up around 12-2 and requiring a 10 minute walk and would then fall back asleep. This was manageable if not slightly annoying, but we got by.

However, this last month or so he has routinely been awakening around midnight, falling back asleep after a walk but then waking up a second time around 3am which requires either a very large walk or he would not go back to sleep at all and would be up from this time. If he awakes at this time, he tends to half a mad hour or so and then by half 4 realise he was tired and demand to be walked again. He then falls back asleep around 5.30. He has started a new nursery recently and so is picked up by 7.50, so we need to wake him around 7.30 to ensure he is ready in time.

What we are also finding no matter when he wakes is that once he wakes up he tends to be in a very heightened state and takes a long time to calm down. We looked into this and have started giving Ollie magnesium tablets which have somewhat helped with this. This period of the last month or so has been extremely difficult and I do not want to overly dramatise our situation as I am sure there are others out there who have worse situations with sleep, but this is starting to have really negative effects in all aspects of our working and personal life.

We live in Scotland and as it is approaching winter, the feasibility and practicality of going on long walks is only going to become less and less due to the incoming poorer weather. Whenever Ollie wakes up through the night he tends to lie in his pram looking like he could fall back asleep any minute. It is almost as if his body requires sleep but his mind will not allow it.

We have a strict night time routine of bath, toast, melatonin, pyjamas on and into the pram for a walk at the same time every night so this isn’t a case of a lack of routine.
If anyone has any suggestions or advice at all, we would be extremely appreciative of it. We have sought out occupational therapy, sleep nurses within our health service but not had a lot of help.

Thanks and apologies for the long post.

 

[Rodafina]

Sounds stressful.

Does Oliver use words for communication?

What do you mean when you say he demands to be pushed in the pram? What does this look like?

 

[tazz]

I don't have any specific advice unfortunately. But I used to look after a 4 year old with a development delay and she would take about 1 or 2 hours to get to sleep. During that time she would display very challenging behavior. And then be awake again very early. We had a sleep nurse for a while but then that service ceased. So I just wanted to say I feel for you in this situation.

For the kid I was looking after, the problems lessened eventually - as they got a little older. Routine seemed to help. But it took a long time.

 

[ra49]

Having not had children, no experience, but still 2 thoughts: chamomile tea with the toast and melatonin, and lavender spray on the pillow, bedclothes, and in the pram. They won't make him sleep but may help him settle.

Oliver is 4, so how does he self-amuse during waking hours? Is there a toy or stuffed animal that can become his special bedtime buddy? Maybe a buddy can help him not feel alone in bed or pram? More secure may result in less trouble.

Is Oliver verbal enough to understand explanations about weather? If the weather is perfectly dreadful so that walk will not be possible, can you distract with an alternative before the meltdown begins? For instance, would he like making a blanket fort and camping in the living room instead of the walk? You could build it together before bedtime routine begins with the understanding that this will be the thing instead of the walk tonight?

it is 4am here and I have been awake since 1230am - each person has unique sleep pattern - once he is a little older, he may not need your involvement during his wakefulness but you will have to be vigilant about overnight safety

Wishing you every good luck and some sleep!

 

[SamC1234]

Sounds stressful.

Does Oliver use words for communication?

What do you mean when you say he demands to be pushed in the pram? What does this look like?

Hey, not really he is currently non-verbal with very limited understanding of language.
Essentially he will have a meltdown which only stops when he is being pushed in the pram, we think it gives him the sensory input he is craving at that time. If we don’t push him he will cry and kick his legs in frustration

 

[MNAus]

For the record, we're not experts here. We're a forum full of autistic people. YMMV.

That said - and as a dad of three, 2 of whom are on the spectrum - IMO the pram is not a good thing. It's serving too many purposes, and it's removing his ability to self sooth. Please get a second, third and fiftieth opinion on anything I say, but I think the pram needs to go. Autism doesn't require a person to be walked round in a pram at the age of 4. This might not even be related to autism (we had a nightmare re: sleep with our non-spectrum oldest). The routine before bed sounds good, until the point where you push a four year old around in a pram. Aside from the fact that you're pushing a four year old around in a pram it sets a dynamic where you are trying to get him to going to sleep, and he is deciding if you've hit the mark or not. The routine is not about "here's the things we'll do for you" but it should be about his actions, and getting used to the things HE has to do (sometimes with your help).

 

[Rodafina]

Hey, not really he is currently non-verbal with very limited understanding of language.
Essentially he will have a meltdown which only stops when he is being pushed in the pram, we think it gives him the sensory input he is craving at that time. If we don’t push him he will cry and kick his legs in frustration

Thank you for explaining.

I have more questions.

Do you think it could be related to night terrors? Lots of us have shared having those (even into adulthood).

Do you think he might respond well to a change of scenery in his bedroom? Someone here recently gave the good advice to try putting a tent in a child's bedroom to help them stay in their room and it seems to be helping.

This thread might help...
https://www.autismforums.com/threads/child-wants-to-go-downstairs-every-night.45608/#post-1038536
In this other thread, post number 28 is interesting about night terrors...
https://www.autismforums.com/thread...king-up-for-hours-at-night.44933/post-1015214
I hope you are getting some sleep in for yourself when you can. Hang in there. It's so hard to live a sleep deprived life. Hopefully people here can help your family.

 

[SamC1234]

Having not had children, no experience, but still 2 thoughts: chamomile tea with the toast and melatonin, and lavender spray on the pillow, bedclothes, and in the pram. They won't make him sleep but may help him settle.

Oliver is 4, so how does he self-amuse during waking hours? Is there a toy or stuffed animal that can become his special bedtime buddy? Maybe a buddy can help him not feel alone in bed or pram? More secure may result in less trouble.

Is Oliver verbal enough to understand explanations about weather? If the weather is perfectly dreadful so that walk will not be possible, can you distract with an alternative before the meltdown begins? For instance, would he like making a blanket fort and camping in the living room instead of the walk? You could build it together before bedtime routine begins with the understanding that this will be the thing instead of the walk tonight?

it is 4am here and I have been awake since 1230am - each person has unique sleep pattern - once he is a little older, he may not need your involvement during his wakefulness but you will have to be vigilant about overnight safety

Wishing you every good luck and some sleep!

Thanks for this, I really like the fort suggestion. Ultimately I am really keen for him to be back in his bed to sleep. We have literally tried everything to try and make his bed more desirable for him, recently we bought a ‘snuggly’ tent canvas that goes over his tent that we thought might mimic the closeness and compactness of his pram but that did not work.
During waking hours, he tends to be groggy for about 30 minutes and then comes to and goes about his day as he normally would - being very active. He has never really been one for teddies etc but again worth a try. The lavender spray is worth a try for sure.
Thanks for the reponse

 

[SamC1234]

For the record, we're not experts here. We're a forum full of autistic people. YMMV.

That said - and as a dad of three, 2 of whom are on the spectrum - IMO the pram is not a good thing. It's serving too many purposes, and it's removing his ability to self sooth. Please get a second, third and fiftieth opinion on anything I say, but I think the pram needs to go. Autism doesn't require a person to be walked round in a pram at the age of 4. This might not even be related to autism (we had a nightmare re: sleep with our non-spectrum oldest). The routine before bed sounds good, until the point where you push a four year old around in a pram. Aside from the fact that you're pushing a four year old around in a pram it sets a dynamic where you are trying to get him to going to sleep, and he is deciding if you've hit the mark or not. The routine is not about "here's the things we'll do for you" but it should be about his actions, and getting used to the things HE has to do (sometimes with your help).

I 100% agree with what you’re saying and I feel we have made a Rod for our own back with the pram. However, we have tried so many different things to try and make his bed more desirable for him to no success at all. I feel due to his ASD his intellectual level is just not at the stage it needs to be for him to be able to self soothe. How we could teach that to someone with such a little understanding is the difficulty.

 

[SamC1234]

For the record, we're not experts here. We're a forum full of autistic people. YMMV.

That said - and as a dad of three, 2 of whom are on the spectrum - IMO the pram is not a good thing. It's serving too many purposes, and it's removing his ability to self sooth. Please get a second, third and fiftieth opinion on anything I say, but I think the pram needs to go. Autism doesn't require a person to be walked round in a pram at the age of 4. This might not even be related to autism (we had a nightmare re: sleep with our non-spectrum oldest). The routine before bed sounds good, until the point where you push a four year old around in a pram. Aside from the fact that you're pushing a four year old around in a pram it sets a dynamic where you are trying to get him to going to sleep, and he is deciding if you've hit the mark or not. The routine is not about "here's the things we'll do for you" but it should be about his actions, and getting used to the things HE has to do (sometimes with your help).

Also just to add on this, there is a lot of focus around the fact he is 4 on your post which I understand. However, he is very attached to his pram and we have a specialised pram for him that more than holds his weight and size.

 

[MNAus]

I 100% agree with what you’re saying and I feel we have made a Rod for our own back with the pram. However, we have tried so many different things to try and make his bed more desirable for him to no success at all. I feel due to his ASD his intellectual level is just not at the stage it needs to be for him to be able to self soothe. How we could teach that to someone with such a little understanding is the difficulty.

Self soothing is often learned pretty young, it's not something that requires intellectual capacity I think. It's really difficult to give good advice because we really don't know your little one, and it's difficult to understand the extent of his autism. My instincts (which are a mile from being professional advice) are that you should find a way to put him in charge of a ceremony in which he says goodbye to things that no longer need to have a part in his life and introduces new things. Without knowing his autism, that might need quite clear and agreed steps planned, but should be pitched as entirely positive. So not "we're going to get rid of the pram" but "do you think you're old enough to sleep in a big boys bed?" perhaps suggesting that there are babies out there who would dearly love a pram to sleep in and who would really enjoy that comfy pram that he looked after so well?

Ultimately you might have to face a couple of weeks with little sleep and simply bringing him back to his bed time and time again. But, it's hard to tell if that would be a good idea without a better understanding of him. Given that he's actually telling you what needs to happen (which certainly is not something you need to do for kids with autism) I think it might even need him to throw a couple of tantrums, or maybe more. You need somehow to change this dynamic, because him being in charge of the action does no-one any good.

Also just to add on this, there is a lot of focus around the fact he is 4 on your post which I understand. However, he is very attached to his pram and we have a specialised pram for him that more than holds his weight and size.

Like I say, it's tough to know without knowing how his autism presents. Perhaps you could explain why he has this custom built pram? I wouldn't want to suggest removing something he is physically dependent on.

 

[Jemmad896]

Self soothing is often learned pretty young, it's not something that requires intellectual capacity I think. It's really difficult to give good advice because we really don't know your little one, and it's difficult to understand the extent of his autism. My instincts (which are a mile from being professional advice) are that you should find a way to put him in charge of a ceremony in which he says goodbye to things that no longer need to have a part in his life and introduces new things. Without knowing his autism, that might need quite clear and agreed steps planned, but should be pitched as entirely positive. So not "we're going to get rid of the pram" but "do you think you're old enough to sleep in a big boys bed?" perhaps suggesting that there are babies out there who would dearly love a pram to sleep in and who would really enjoy that comfy pram that he looked after so well?

Ultimately you might have to face a couple of weeks with little sleep and simply bringing him back to his bed time and time again. But, it's hard to tell if that would be a good idea without a better understanding of him. Given that he's actually telling you what needs to happen (which certainly is not something you need to do for kids with autism) I think it might even need him to throw a couple of tantrums, or maybe more. You need somehow to change this dynamic, because him being in charge of the action does no-one any good.



Like I say, it's tough to know without knowing how his autism presents. Perhaps you could explain why he has this custom built pram? I wouldn't want to suggest removing something he is physically dependent on.

Hi mum here

As my partner had mentioned, he has a very limited understanding of language. For example he doesn’t understand simple commands such as “shoes on” or “coat on” so being able to reason with him won’t work unfortunately.

The pram was purchased for his own safety as he elopes and won’t come back even if we shout his name etc. Having the pram means we can access so much more as a family and most importantly keep him safe.

The walking in the pram started when he began to have reoccurring ear infections (2 grommet surgeries later we are hoping this is resolved). He had it really tough with ear infections with 10 courses of antibiotics in the space of 8 weeks and so the pram walks were the only thing that soothed him and I think maybe with the slight tilt on the pram it helped with the pressure build up of the fluid in his ears. Obviously we did what we could to help him during this time especially because he couldn’t communicate to us. But now his ears are better… we are left with this routine, we are in so deep it’s like where do we even begin?

Thank you for everyone’s advice we really appreciate it.

 

[MNAus]

Hi mum here

As my partner had mentioned, he has a very limited understanding of language. For example he doesn’t understand simple commands such as “shoes on” or “coat on” so being able to reason with him won’t work unfortunately.

The pram was purchased for his own safety as he elopes and won’t come back even if we shout his name etc. Having the pram means we can access so much more as a family and most importantly keep him safe.

The walking in the pram started when he began to have reoccurring ear infections (2 grommet surgeries later we are hoping this is resolved). He had it really tough with ear infections with 10 courses of antibiotics in the space of 8 weeks and so the pram walks were the only thing that soothed him and I think maybe with the slight tilt on the pram it helped with the pressure build up of the fluid in his ears. Obviously we did what we could to help him during this time especially because he couldn’t communicate to us. But now his ears are better… we are left with this routine, we are in so deep it’s like where do we even begin?

Thank you for everyone’s advice we really appreciate it.

Hi mum (that sounds odd...)

Of course, we all do what we can to help our kids. Don't worry that anyone thinks you're doing anything other than the best by him. But yeah, that sounds tricky indeed and beyond the ability of simple advice to assist. This might require a few steps back before going forwards (and I would guess you probably have the same feeling). But really, I'd just be guessing. I guess the position you're in is that you suspect you know what needs doing, but you're concerned that you might burn some bridges in completely the wrong direction. Do you have supports in place? You really have my sympathy, we go through phases of this with our youngest and it can leave you feeling desperate. But our boy is not yours, and I can't tell you that the approach we took with him will work with your son.

 

[Rodafina]

Hi mum here

As my partner had mentioned, he has a very limited understanding of language. For example he doesn’t understand simple commands such as “shoes on” or “coat on” so being able to reason with him won’t work unfortunately.

The pram was purchased for his own safety as he elopes and won’t come back even if we shout his name etc. Having the pram means we can access so much more as a family and most importantly keep him safe.

The walking in the pram started when he began to have reoccurring ear infections (2 grommet surgeries later we are hoping this is resolved). He had it really tough with ear infections with 10 courses of antibiotics in the space of 8 weeks and so the pram walks were the only thing that soothed him and I think maybe with the slight tilt on the pram it helped with the pressure build up of the fluid in his ears. Obviously we did what we could to help him during this time especially because he couldn’t communicate to us. But now his ears are better… we are left with this routine, we are in so deep it’s like where do we even begin?

Thank you for everyone’s advice we really appreciate it.

Maybe you’ve already tried this, but do you think it would work to put the pram in his bedroom? Taking away the walking element could help you and your husband get some rest, too.

 

[tazz]

Just brainstorming...

A hammock or rocking chair? Maybe it's the movement of the pram that is good for him.

 

[Kirito]

Hello,

As an Aspie I can only recommend what I have seen work. Walking produces a level of stimulation but it may be more related to frequency. Walking fast may not be as effective as walking slow, or visa versa. It may have less to do with vibration he feels but sound. Being walked in a pram produces recurring sound which can alter in relation to the pavement as the wheels roll, the wind blows or any of a thousand other variables. The same can be said of instrumental music.

My daughter, who is not autistic, responded to a sleeping issue by playing Mike Oldfield's Voyager album. Sometimes she still put music on her computer at night to sleep, even though she is in her twenties now. I use music regularly for sleep. Running 10 hour sets of Skyrim music off youtube, where there is ambient background of wind, rain, snow, people walking, fire places burning logs, creates a repetitive pattern with enough randomness to prevent it from being a loop soundtrack. Autistic brains look for patterns. It is hearing, seeing or feeling a pattern that can trigger us. We attach such triggers to events. Some are good and some are bad.

I am not a clinician, just someone who was first diagnosed as Aspie at 47 years old, and thus not preconditioned to the standard rhetoric. I discovered most of what I have through my own research and experimentation. I discovered music as a sleep modality when I found that certain background music puts me to sleep at work. I have had sleep issues for decades, some related to being in the military. What I know is that I am not the first Aspie I have found who uses music for sleep.

I hope this helps.

Derek in North Providence RI USA

 

[SamC1234]

Hello,

As an Aspie I can only recommend what I have seen work. Walking produces a level of stimulation but it may be more related to frequency. Walking fast may not be as effective as walking slow, or visa versa. It may have less to do with vibration he feels but sound. Being walked in a pram produces recurring sound which can alter in relation to the pavement as the wheels roll, the wind blows or any of a thousand other variables. The same can be said of instrumental music.

My daughter, who is not autistic, responded to a sleeping issue by playing Mike Oldfield's Voyager album. Sometimes she still put music on her computer at night to sleep, even though she is in her twenties now. I use music regularly for sleep. Running 10 hour sets of Skyrim music off youtube, where there is ambient background of wind, rain, snow, people walking, fire places burning logs, creates a repetitive pattern with enough randomness to prevent it from being a loop soundtrack. Autistic brains look for patterns. It is hearing, seeing or feeling a pattern that can trigger us. We attach such triggers to events. Some are good and some are bad.

I am not a clinician, just someone who was first diagnosed as Aspie at 47 years old, and thus not preconditioned to the standard rhetoric. I discovered most of what I have through my own research and experimentation. I discovered music as a sleep modality when I found that certain background music puts me to sleep at work. I have had sleep issues for decades, some related to being in the military. What I know is that I am not the first Aspie I have found who uses music for sleep.

I hope this helps.

Derek in North Providence RI USA

Thanks a lot for this, I find it really interesting learning about how different individuals’ minds work. I definitely think there could be something in this for us. If Ollie does not sleep by the time we come back into our house he gets upset. We put a blanket over his pram at night to share our light so he has no idea where he is visually, but he must recognise this by the sound of carpet etc. so you definitely could be right that it is the noise that is giving him sensory input. We will give this a go tonight, if nothing else if it prevents going for a walk will be a massive win for me.
Thanks a lot

 

[SamC1234]

Maybe you’ve already tried this, but do you think it would work to put the pram in his bedroom? Taking away the walking element could help you and your husband get some rest, too.

Have tried this unfortunately, it is the input both through sound and movement he enjoys in the pram we think and he doesn’t get any of those things by being stationary in our flat

 

[ra49]

Oh my when we get older our memories do slip a bit . . I can't quite remember now as it was 1980s . . A girl I worked with had a baby less than 2 years old (so pre-verbal) - he was colicky and couldn't rest, only fuss and scream, poor little guy

. . It seems to me that she discovered that putting his baby carrier seat thingy on top of the clothes dryer and running a load of towels worked: between the heat and the vibration, the baby was able to settle and rest

Altho I have no idea how this may help your boy but fingers crossed as all of you need a long sleepy night <3

 

[ra49]

Hey, Sam and Jemma- I thought of something - my physical therapist put me on a mini trampoline last week and it is My New Favorite Thing !!!!! I do not like to be jiggled or bounced but this thing is wonderful to my brain
It is about 4-6" high off the ground and maybe 40" diameter
Not for Oliver to stand but if it you entirely covered it with a blanket and sat him, and sat next and just barely reverberated it with your hands a little bit, maybe it would give a vibration plus a motion that he could find relief?
Hopefully for you. xoxora