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No sleep

Zoe RossZoe Ross Posts: 1Member
edited August 2016 in Parents and carers
im a mum of a 22 month old and 22 weeks pregnant. My son has 1q21.1-21.2 microduplication he has a few issues. Just not sleeping and shutting off and no1 listens except send out another person to help who cant help. Im finding it hard to cope on 2-3 hours sleep in 24 hours and doesnt stop all day and im asingle mum. Any tips or advice would be appreciated
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Replies

  • Debbie_ScopeDebbie_Scope Posts: 947Member Pioneering
    Hi Zoe,

    Sorry to hear that you're struggling with the sleep issue, you must be exhausted!
    Have you had a chance to check out our Sleep pages on the Scope website? http://www.scope.org.uk/support/families/sleep/diary
    We offer Sleep Solutions in various parts of the country and you check on our Services Directory to see if we have one near you. Just type in your postcode and then in the keywords box type 'sleep' and that will bring all of our services up. http://www.scope.org.uk/Support/services-directory#panel-map

    Have you looked at whether you could be eligible for free childcare for 2 year old children? This could provide a little bit of a break for you. There's more information on the government website about free childcare for eligible 2 year old children so do check and see if you would qualify. https://www.gov.uk/help-with-childcare-costs/free-childcare-and-education-for-2-to-4-year-olds.
    If you have a Children's centre nearby it would be worth talking to them and seeing if they can offer any other practical advice or assistance.

    I'm parent to a 4 year old and from day one she did not sleep, we're only now at a point where she will sleep all night so I can completely understand what you're going through.

    All the best
    Debbie
  • ZeezeeZeezee Posts: 80Member Pioneering
    Hi Zoe, I am really sorry your struggling with no sleep being pregnant must be making it so much harder. My daughter is two this week and has quad cp with issues that stop her from sleeping. Ziyal sleeps one or two nights every 6-8 weeks but the rest of the time I am lucky if I get 3-4hours of broken sleep, one hour, 20 mins,30mins which add up to3-4hours. I am also a single parent and the way people look at you when you try to explain how little sleep you are getting and if they don't just blatantly come out with "well a lot of babies dont sleep" you can see it going through their heads. The complete desperation you feel after nearly two years of practically no sleep is indescribable.
    Anyway I phoned everyone I could think of and explained how difficult it was and kept phoning and phoning until someone listened, I managed to get funding for Ziyal to attend nursery two sessions a week for five and a half hours a day. My thinking was that when she got her 15hours a week funding at two she could just increase to three days a week, which she will do after Easter hols. She only had funding from Jan 16 to April 16 and it took me 4-5months to get it. Ziyal is at a private nursery as I found that they where more likely to agree to change the recommended 3 hours a day 5 days a week to 3 days a week for 5 hours because 3 hours is no good by the time the kids are dropped off you dont have time to sleep, but with 5 hours at least I get 4 hours sleep and when I am used to having broken sleep for two years 4 hours is absolute heaven. I dont know what area you live in, I live in M/cr and got the original funding from short breaks. If your son is only 22months now then he wont be eligable for the 15 hours untilthe first term after his 2nd birthday which with the situation you are in right now must feel like a lifetime away. I am terrible with computers but I know there is a way to give email addresses so if you need anymore advice just let me know and I will try to help. The most inportant thing to remember is it is only the parents who shout the loudest who get the help. It is completely wrong but experience with my 20yr old who was disabled taught me that, so start shouting. Good luck
  • zoeross666zoeross666 Posts: 2Member Listener
    Hi I'm from manchester only just seen this he's 3 and 4 months now and still doesn't sleep well.... Only just seen this now 
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Hi @zoeross666, hope you find the above information helpful and let us know if we can be of any more assistance. Fingers crossed for better quality sleep in the future for you!
  • zoeross666zoeross666 Posts: 2Member Listener
    Thanks my 16 month old has issues similar to my eldest and same sleep issues. He's soon being tested for same issue as me and my eldest 
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