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Problems settling at bedtime - we're really struggling

5 replies

Jacksterbear · 09/07/2014 13:45

My 7yo DS has dxes of SPD, anxiety, and ASD with a PDA profile. His anxiety has always been very bad, particular over separation. He has never settled easily and has always had cuddles to sleep at night, from either DH or me (or will settle with either of his grandmothers but only if neither DH nor I are around). We've had some success with a weighted blanket which means the person settling him can just lie next to him rather than having to drape their arms and legs over him which was previously the case!

He's currently going through a terrible phase with settling to sleep. He cries and/or shouts and/or screams for prolonged periods (up to a couple of hours), says that he hates himself, is bad/naughty/rubbish, that it's all too hard, that he doesn't know what to do, that he wants to calm down but can't, and that he wants to go to sleep but can't. He hits himself with his fists and/or his pillow, throws things in his room, and curls up in a tiny ball in the corner of his bed, rocking and sobbing.

I think this phase has been triggered by his growing awareness that other children don't have to be cuddled to sleep at night - a couple of times, he has asked to be left alone but then ended up in a terrible state, obviously desperate to be comforted but not wanting to admit it. He is also going through a generally more anxious phase at school, worrying about questions from other children about why he is doing xyz differently from them. The phase has got much worse in the last couple of weeks after DH and I went away for a couple of nights (because we were at breaking point!) and left him with his grandma.

We saw the paed at the CDC last week and I mentioned this problem. She said she would send us a sleep diary and a "sleep pack" (presumably with some helpful Hmm suggestions for settling) and that we could discuss melatonin at a later date if all else failed. She is also re-referring him to CAMHS, who previously discharged him, but I'm not holding out much hope that they will be able to help.

We've now got ourselves into a situation where we have no routine at all at bedtime as we're so desperate to do anything we can just to get him to sleep. We've had some success with the Dawn Huebner books on anxiety and temper, so I got the "dread your bed" one, but tbh the suggestions seemed laughable in our current situation!

Sorry this has been so long. DH and I are exhausted and near breaking point. Any advice or empathy would be really welcomed!

OP posts:
PolterGoose · 09/07/2014 14:41

This reply has been deleted

Message withdrawn at poster's request.

Sahkoora · 09/07/2014 14:45

I am so sorry you are going through this. Parts of it are very familiar, my DS was the same.

The only thing that has helped is a melatonin prescription. He still doesn't sleep through the night, but for the first time in his life, DS has been tired! He will fall asleep much easier now.

Melatonin is a natural substance that the body should produce naturally, but often with ASD, this doesn't happen. It's not like sleeping pills and it doesn't drug DS or make him sluggish.

My paed prescribed it straight away after dx, he started on 2mg and has gone up to 4mg now he has grown a bit. Push for it, it might be what your DS needs.

None of the other methods helped a bit for us. I hope you get the help you need.

Jacksterbear · 09/07/2014 15:52

Thanks for the replies. Polter, yes I'm sure the end-of-year stuff is contributing hugely too. Had to keep him home yesterday (sports day) as he was in such a terrible state of distress in the morning. And a day off last week when he was clearly too exhausted and mentally fragile to go anywhere.

It's a vicious circle at the moment of tiredness > anxiety > tiredness, etc.

Sahkoora, interesting re melatonin. I had assumed the paed has to follow a tick-box set of recommendations first before prescribing it.

OP posts:
TigerLightBurning · 09/07/2014 16:35

I know someone who had a sleep therapist and they recommended no TV or computers etc 2 hours before bed.
It is difficult in summer though as it is so light. My little one has been staying up late but generally goes off by 10.

boobybum · 09/07/2014 16:47

We were also prescribed melatonin by the paed with no problems and although we no longer use if very often it can help at particularly bad times.
Have you got blackout blinds/curtains in his room as it is always harder falling asleep in a light room.
Would a visual schedule leading up to bedtime help?
Would a really good bounce on a trampoline help to release frustration? Then a relaxing bath, book and bed?
Would cuddling something that smells of you help him? We have only just got our NT 6.5 years old DD to go to sleep by herself and she has my dressing gown rolled up to cuddle!
How about a planned gradual withdrawal by you - eg. You say for the next 3 nights you'll sit on the end of his bed, then on the floor by the bed for 3 nights and then gradually work your way towards the door.
Good luck Smile

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