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Struggling with son waking during the night

karina2014karina2014 Member Posts: 3 Listener
edited March 2018 in Parents and carers
My son is 4 and has been diagnosed with asd I've been begging for melatonin and keep saying there is a waiting list to see a clinical nurse it's making me I'll he can wake up every hour or tops is 4 hours I really need some help I feel that he has been diagnosed and then I've just been left without any help and I'm struggling to cope I really need respite 

Replies

  • gnmeadsgnmeads Member Posts: 185 Pioneering
    Hi
    Welcome to the Scope community and sorry to hear about your sons condition.  Try contacting the National Autistic Society they were very helpful with my son a few years back.http://www.autism.org.uk/
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Karina, @karina2014 and welcome to the community. I remember despairing of getting respite, and my heart goes out to you. The best thing I think I can do for you is to tag our parenting advisor, Vikki, to draw their attention to your post. @ParentingAdvisorVikki . I'm also going to tag @VioletFenn , our ASD advisor.
    I know it's difficult and I suspect that you've been struggling for much of the past 4 years. I admire the courage that has got you so far. Please bear with us now and we will try to help you.
    Warmest best wishes
    Richard

  • ParentingAdvisorVikkiParentingAdvisorVikki Member Posts: 45 Connected
    Hi @karina2014
    First thing I would advise is to look for stimuli in your sons room. Anything tiny, including the standby light on a plug or tv can trick the brain into thinking its day. Mad I know, but it works. If theres stuff you can't unplug then try and cover with some black electrical tape. 
    Second thing I would advise is to look at your routine. How he goes to bed, How he settles, what you do if he gets up. I would apply the silent technique when putting him back to bed. If you aren't familiar with it, it goes; First time they wake up you tell them "its bed time sweetheart (or whatever you call them) and you take them back and re settle them. the next time its "its bed time" and take them back and re settle. The third time they get up you do not speak to them. you take them straight back to bed. and carry on like this. It will take a while.

    I do sympathise tho. We suffered 3 years without melatonin. Is it your GP you are asking for melatonin or your children paediatrician? You can ask for an emergency paed's appointment. And ask for help.

    Have you entered in any parents support? If you let me know what area you are in I can point you in the right direction. There are plenty of us tires ASD mummy's out here! 

    I would also say that melatonin just gets them to sleep, doesn't keep them asleep. 
  • karina2014karina2014 Member Posts: 3 Listener
    I do all the putting him back to bed saying nothing and he has a night routine he dosnt watch telly for a hour and half before bed I've bought sensory tent and I can read in there and his room is pitch black I got blind and black out curtains I've literally tried everything even other parents said try piraton I tried that I've tried so much I'm at my last resort I've been to autism meetings and just get told I have to speak to pediatric people which I've been on the fone to them for the last month and half asking for appointments or just to speak over the fone I've now gone out my way and had to make myself skint I've paid for weighted blanket as dla has also declined him having dla as he is under 5 so all the things I'm doing is what I shud be doing already I'm really stuck and I'm so close to just giving up I no it sounds bad but I'm not well myself I have fibromyalgia and depression and anxiety and ptsd it just seems he has been diagnosed and I've been pushed aside he also has hypomobility and lose ligaments and knocked knees he has to have physio and special insoles in his shoes I've asked his nursery for a ehc and they are refusing to do 1 for him I'm so stressed

  • ParentingAdvisorVikkiParentingAdvisorVikki Member Posts: 45 Connected
    Ok, lets see if your GP can move it along for you? they can always write to the paediatric consultant and hurry things along for you .
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Karina @karina2014. Just reading through the posts here. Can I ask what area of the country you are in? Not your address - that's not safe to share here, but just roughly where you're located?
    Best to you,
    Richard
  • debmusdebmus Member Posts: 2 Listener
    My son is 4 and has been diagnosed with asd I've been begging for melatonin and keep saying there is a waiting list to see a clinical nurse it's making me I'll he can wake up every hour or tops is 4 hours I really need some help I feel that he has been diagnosed and then I've just been left without any help and I'm struggling to cope I really need respite 
    Hi Karina2014. I can totally relate to you and send you a hug. My son is a 13 year old autistic boy and is not sleeping. He just won't go to bed until early hours of the morning, saying he isn't tired! So I can't go to bed at a reasonable time either!! He thinks he can play on his Xbox to all hours of the morning until he feels ready to sleep!!  His behaviour is so challenging when asked to come off his Xbox. I'm like you need a weekend away to sleep!!
  • karina2014karina2014 Member Posts: 3 Listener
    I've asked my doctors and all they keep saying is they can't doo anything as it has to be the clinical team and I'm England Ashford Kent 
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hi @karina2014

    I've been wracking my brain about your situation and would give anything to be able to help. Have you by any chance checked out your local authority website? It seems that your town has a fairly active voluntary sector and just starting an enquiry there might lead to something. https://www.ashford.gov.uk/your-community/voluntary-and-community-sector/ There's an email address for a Michelle Byrne on that page that just might be worth a try.
    I am so sorry that this is so little.
    Sincere best wishes,
    Richard
  • super37potsuper37pot Member Posts: 2 Listener
    Hi my daughter is on circatin and bio melotonin. She still has problems. I dont mean to put you off by saying that everyones differant but you do need to have breaks from taking the medication though. Also i find if you take her to a soft play or a playground and use up some energy i find that helps with the medication. My daughter is autistic and adhd.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Do you have a social worker or support at nursery?
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • super37potsuper37pot Member Posts: 2 Listener
    I do have a social worker but it took time to get one. When my daughter was at nursery she was assessed and was then given appointment to see a pediatrician. As soon as she was diagnosed she was given 1 to 1 support and in main stream school till she was in year 2 we then moved her to a special school my daughter is now 10.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I meant @karina2014 lol but gtk
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger

    Strategies to Improve Sleep in Children with Autism Spectrum Disorders: A Parent's Guide

    Many children with ASD have difficulty with sleep. This can be stressful for children and their families. This informational booklet is designed to provide parents with strategies to improve sleep in their child affected by autism spectrum disorders (ASD). The suggestions in this tool kit are based on both research and clinical experience of sleep experts.

    Download the Sleep Tool Kit (Parent Booklet) here!

    "These materials are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS, or Autism Speaks."

    Sleep Tool Kit Quick Tips

    Here are some other ideas that might help improve a child’s sleep. We call them “quick tips” and they may be used in addition to the Sleep Toolkit.

    Start by reading the Sleep Toolkit. Then look at these additional ideas for help with:
    · Using a Visual Schedule to Teach Bedtime Routines
    · Images for a Visual Schedule · Using a bedtime pass
    · Sleep Tips for Children with Autism who have Limited Verbal Skills

    We developed these quick tips based on questions and feedback from parents. If you have other questions or ideas about other tips that would be helpful, please let us know by emailing us at [email protected].

    Download the Sleep Tool Kit Quick Tips here!

    "These materials are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS, or Autism Speaks."

    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • hartill77hartill77 Member Posts: 97 Courageous
    Hi im new to the site.  My Daughter is 11 and is autistic and has trouble with sleep. We use cerebra.org.uk, we had a telephone consultation and she keeps in touch by email. You could go on to the  website and contact them. We had to keep a sleep diary for 2 weeks before our telephone consultation. 
    Hope this helps. 
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Welcome to the community, @hartill77
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