Are NHS right asking me to ignore meltdowns?

Good morning, 

I would really appreciate some input here, 

As some forum members maybe aware my daughter has severe sleep problems and has done for years! We finally got accepted by the specialist health visiting team who have put together a routine based plan with strict instructions on how to respond to behaviour, 

And I do understand that children will resist change and have tantrums which I'm supposed to ignore as we are "reversing learned behaviour" I have always had routine for bedtime and she is the only one of my children with a problem.

Let me describe the last few days on this plan and I would like to know if as autistic adults you believe it to be harmful, I do but maybe I'm being soft as I don't like her upset.

Day one her teachers and support worker had told her how well she was going to do following the plan (she will never disobey a teacher) she followed the plan precisely to the minute. During the night I heard her awake repeatedly saying "I must stay in bed, I must not be bad, I can't get up" this broke my heart but I did as instructed and ignored it. When she got up she was anxiously flapping her hands and crying she had wet the bed as she didn't think she could go to the toilet.

Day 2 strictly following times again spent hours during night repeating "I mustn't get out of bed" really anxious when she got up

Day 3 same as day 2

Last night followed plan got up ten mins later had tantrum I kept putting her back in bed repeating the instructed phrase "goodnight.... It's time to go to sleep" she did this for 3 hours then she got to the point of throwing the drawers out of the cabinet, hitting kicking and biting me she has hurt her foot kicking a wall, she got to a point she was literally screaming "I did the plan why are they making me. How is this helping me it's hurting me. I wish I was dead"  that really got me but did as told and put her back to bed that triggered a meltdown which I genuinely believe is totally different to a tantrum she was totally overloaded now I'm supposed to ignore that as "she will learn" I couldn't how can I be asked to ignore a child at their most vulnerable? I calmed her down and sat with her for hours until she finally got to sleep 

Update she has slept a few nights since then, well not sleeping just laying quietly in her bed repeatedly saying I must stay here I'm not bad. This feels wrong 

To me this seems cruel. And neglectful and I feel it could be very harmful to her, or am I just being to soft? 

Parents
  • Hello! How old is your daughter?

    My son's older now and thankfully out of this stage. Have you tried the following to help (I did this for my son so thought worth mentioning)

    If you have the space seperate playroom and bedroom (just a bed in her room when its time to sleep)

    Soft bedding (if she is sensitive to touch try flanellete or get her to choose the fabric she likes)

    Pyjamas - same as bedding

    Black out blinds! 

    Neutral coloured walls with no pictures (yes its plain and boring but my son actually likes it and is distracted by pictures even in school)

    Ask her about her matress (maybe get a topper if she finds it lumpy - I find mattresses a nightmare I'm now on memory foam as is my son)

    heavy duvet! My son has a double high tog duvet as he loves the weight

    Get her to choose a pillow she likes

    Plain bedding nothing bright - we went for plain blue

    bath and hot chocolate before bed then we spent 1 hour in his sleep room reading! I'd often fall asleep too 

    Before we read we chatted about his day, it got things off of his mind. It helped him process the day I think

    You may have tried all of the above but as a fellow mum who had to figure this out alone I thought I'd pass it on. 

Reply
  • Hello! How old is your daughter?

    My son's older now and thankfully out of this stage. Have you tried the following to help (I did this for my son so thought worth mentioning)

    If you have the space seperate playroom and bedroom (just a bed in her room when its time to sleep)

    Soft bedding (if she is sensitive to touch try flanellete or get her to choose the fabric she likes)

    Pyjamas - same as bedding

    Black out blinds! 

    Neutral coloured walls with no pictures (yes its plain and boring but my son actually likes it and is distracted by pictures even in school)

    Ask her about her matress (maybe get a topper if she finds it lumpy - I find mattresses a nightmare I'm now on memory foam as is my son)

    heavy duvet! My son has a double high tog duvet as he loves the weight

    Get her to choose a pillow she likes

    Plain bedding nothing bright - we went for plain blue

    bath and hot chocolate before bed then we spent 1 hour in his sleep room reading! I'd often fall asleep too 

    Before we read we chatted about his day, it got things off of his mind. It helped him process the day I think

    You may have tried all of the above but as a fellow mum who had to figure this out alone I thought I'd pass it on. 

Children