Sleep clinic diary of a 3 year old with SEN and horrific sleep issues.

[sequeena]

We have co-slept with Thomas since he was 2 weeks old. It started in hospital when he had sepsis and we carried it on from there. Thomas has always had his own room and bed and in the last 1.5 years we've gone through several phases of putting Thomas in his own bed/room. None have worked.

Thomas was recently diagnosed with sensory processing disorder. When in his own bed he would become so distressed that he would headbutt the wall and the bed posts. We took his bed away so it was just the mattress and he still headbutted the wall and harmed himself (biting himself, chewing the inside of his cheeks so much he had ulcers etc).

Most recently we've had his bed right next to ours so I can literally keep my arm on him throughout the night. It is still too much for him. We cannot do any CC/CIO because of his self harming.

My big fear though is Thomas being sick. Whenever he is unwell and vomiting he will always vomit in his sleep. He sleeps on his back and never moves so chokes on his sick. This happened again a few days ago and again I heard him choking and was able to quickly get him up and over the edge of the bed.

Tomorrow we start a sleep clinic with Thomas' disability health visitor and community nurse. The main is to get him to sleep through the night (he gets around 4-5 hours broken sleep) but the secondary aim would be to get him in his own bed.

I know they will have all sorts of suggestions to get him in his bed but how do I get over the fear of Thomas vomiting and choking? I am so scared that I will not hear him and he will die it's not even a case of when he's ill bring him into our bed as he vomits without any signs of being ill. I'm so worried

 

[AngelUK]

Oh my goodness Sequeena, I am not surprised! I would be worried sick too! But surely if you mention this to them, they will take it into consideration?
But maybe the ultimate aim is for him to sleep in his own room and his own bed but it doesn't have to be soon? Maybe concentrate on getting him to sleep longer for now and then see how he copes a year down the line? Don't be pushed into anything you are not comfy with. At worst they cannot help you and you have to continue as is for now but I really hope for your sake too that they can at least help a little. FX so much for you and Thomas!

 

[KatieB]

Oh sweetheart, I can't imagine how very tired and worried you are about this. I hope you get some insight or advice and the appointment goes well xx

 

[bookworm0901]

Video monitor!!! I use it on my 2 year old just so I can close his door and have peace of mind. I always use them on my newborns too so I can have peace of mind and not feel the need to look at them for every squeak and sig .

 

[sequeena]

Thanks all. I'm so scared and with his sleep as it is I'm exhausted. I think long term a video monitor may be the only answer but for now I'm just going to tell them I want to get him to sleep longer. I'm not bothered about him being in his own bed or room.

 

[sequeena]

Angel if this clinic doesn't work our only option left is melatonin. I'm not keen on drugging him but it's the only choice. We've just started the statementing process so he needs sleep to go to school.

 

[SarahBear]

Is moving him to his own bed a NEED or is it something you're being pressured to do? I can understand your fear and don't think I'd move him out of my bed if he were my child. If I did move him out of my bed, I don't think I'd feel comfortable putting him in his own room with the description you gave.

Edit: Just read the rest of the thread. It sounds more like they're pressuring you than it being a requirement. If that's the case, I really wouldn't move toward his own room at this point in time. It does not sound like he's ready to move out of your room. Personally, I think young children are meant to sleep with their parents anyway. I read somewhere that it's best for children if you sleep near them for at least their first 3 years of life. Thomas being disabled, may need that for longer than a typically developing child.

Disclaimer: I understand I'm not in your shoes and can respect whatever choice you make as I know you've got your child's best interests at heart.

 

[Button#]

I agree you should concentrate on getting him to sleep longer and not worry about moving him into his room yet. If you're happier with him in your room and he's happier with it then go with the easy option. He's more likely to learn to sleep better if he feels like he's in a safe place anyway.

 

[sequeena]

Thank you. I'm glad I'm not alone in this. I do feel extremely pressured. We're like a HVs nightmare - co-sleeping, not potty trained, still having to feed him with a spoon etc.

I'll see what they have to say tomorrow. I'm sure they'll be totally fine with it under the circumtances but I always feel on edge with things like this. I'm only doing the sleep clinic because I absolutely have to. His paediatrician says we have to do this before melatonin is considered an option.

OH and I are completely fine with him co-sleeping with us for longer. We bought a kingsize bed because of it and will soon buy a super kingsize bed to accommodate him as he grows. It's usually just me here anyway as OH works nights 5 days a week.

 

[SarahBear]

I agree you should concentrate on getting him to sleep longer and not worry about moving him into his room yet. If you're happier with him in your room and he's happier with it then go with the easy option. He's more likely to learn to sleep better if he feels like he's in a safe place anyway.

completely agree

 

[Button#]

Good luck at the sleep clinic, I hope they can suggest something that will help.

 

[MiniKiwi]

You'll probably get more rest having him close to you anyway. I hope the sleep clinic manages to help him to sleep longer at night.

Sending lots of hugs and support, you must be exhausted

 

[lau86]

You know him best and if you feel he's not ready I would keep him with you. I can't imagine how tired you must be x

 

[sequeena]

Well my worries were pointless because they are totally fine with him being in our bed. They said after this course finishes I'm welcome to come back whenever to keep tackling sleep and to get him in his bed when we're ready.

Most of the parents had autistic children. Thomas was the only one with GDD, HMS and SPD. They have no clue how to tackle his self harming or his need to stroke me for hours every night so are going to speak to OT and hopefully they will have a plan next week.

Most of it was explaining sleep why we need it sleep cycles sleep.routines etc all of this I know anyway. They said a 3 year old needs 11 hours of sleep per day with a nap too. Lol sounds like heaven.

They've give me a diary to fill in and we're back next week. I'll use this thread now as a sort of diary. It might help someone or you may have susuggestions for me.

 

[AngelofTroy]

I really hope they can offer suggestions sequeena, you must be exhausted. I know a girl (with ASD actually) who self harmed at night and her parents slept in shifts for years, melatonin helped them in the end but I hope OT have some suggestions you can try first.

 

[sequeena]

I feel like I'm stuck between a rock and a hard place right now. I am implementing this routine but his SPD has gone into overdrive. He doesn't understand what's happening. He can't switch off. I don't know how they expect me to do this when even they don't know how to help with his SPD.

 

[AngelUK]

I feel so bad for you! I don't know how you are still so sane and so grounded as you appear to be! I am sending you tons of hugs and please know that I am really in awe of you. You are a great mum and I really hope you can sort something out very soon!

 

[Zephram]

With the vomiting/choking thing, are you able to move him once he's asleep? It might help with your fear a bit if you can roll him onto his side once he's asleep.

I realise you don't want to medicate him for his sleep, but if it helps all of you sleep better then it's okay to go ahead. If the sleep clinic doesn't help, I'd really encourage you to pursue it.

 

[irish_cob]

The only thing I'd add is try not to think of melatonin as drugging him, it isn't a drug, it's a natural substance that we all make so it's like giving him a vitamin, not a drug (if it comes to that) xx

I agree with previous posters, you are amazing!

 

[HappyAnjeL]

Hope you get to start sleeping soon! I would leave him in your room for now if that's what you're both comfortable with.. But fwiw video monitors are great.. With mine I can see and hear every breath she takes.