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Desperate for help

Emily

I'm typing this whilst crying my eyes out so excuse any typos.

My daughter is 3 she is non verbal and awaiting her autism assessment. 

At the minute she isn't sleeping very well. She goes down like an absolute angel at 6pm. Wakes up at 9pm when I'm about to go to bed and it's game over. She won't go back to sleep till 4am. Weekdays is school for eldest and nursery in afternoons for youngest (who I'm talking about) we have to wake up at 6am. I've had 2 hours sleep. It's been like this for a month now. My eldest is very much struggling to cope with it all too because my youngest keeps her up at night.

I've spoke to numerous pharmacies and my GP and they can't do anything because she isn't fully diagnosed yet with autism im terms of medication. How is this right?! I mean she is having hardly any sleep this isn't normal this is worse then a newborn. She's up screaming and kicking away. Not in pain I don't think. Pain is mostly with me as I'm the one she kicks.

I'm being physically hurt day in and day out by her. She whacked me in the eye last night and it still hurts. 

I wish she could talk to let me know what's going on. 

My husband is in the army and we move around a lot and I have no friends here. Every day I'm crying my eyes out with no support. I'm struggling mentally and physically with all of this.

Someone put there please tell me it gets better. Tell me its not for life. I just want what's best for her and I want to help her sleep.

  • Hello, sorry to hear your finding things hard just now, it does sound really tough. 


    A weighted blanket or a soft weighted teddy bear at night may help. Hug-A-lumps bears are fantastic we all have one each in our home. John Lewis have great quality weighted blankets but I’m sure places like Argos even sell them nowadays. A self cooling gel mat to lay on top of could help to. My youngest lays on a cooling mat with his weighted blanket and his weighted teddy bear when getting settled.

    Maybe she would prefer to sleep in a pop up dark tent? For years my eldest son slept in a sleeping bag on the floor and that was his preference over his bed.

    A peanut ball to bounce and roll on is very popular in our home My wee one is constantly on his. At bed time we play catch with an inflatable ball. It’s a really good for getting energy out. 

    Definitely agree with Pixie about moving her bed time to later. Both my children now go to bed much later than a typical child of their age. I know the downside to that is sacrificing you having child free time in the evening.

    Possibly not what you want to hear but melatonin isn’t a quick fix and some children it doesn’t work at all. Both my children take melatonin, one has liquid form, the other has tablet form and neither child stays sleeping. They both still have badly broken sleep.

    If you can try link in with your local carers centre and let them know your situation see what suggestions they have for you.

    Does the area you live in have a Local National autistic society? If so sometimes they do webinars with speakers and courses for parents who have an autistic child. Ive found them really helpful. 

  • in reply to Lotus

    Also, You asked:

    Emily said:
    please tell me it gets better

    Here is a link to information about a world famous autistic woman who didn't speak until she was nearly 4. she had early speech therapy so you could try to get this for your child:

    https://www.templegrandin.com/templehome.html

    I hope this gives you some hope for the future.

  • Hi Emily and welcome to the forum - I'm sorry to hear about the problems you are having with your child.

    I don't have experience of this myself - the only thing I can think of is moving her bedtime to 9pm to match yours, so you get more sleep.

    There is some information on this website for parents about sleeping here:

    https://www.autism.org.uk/advice-and-guidance/topics/physical-health/sleep/parents

    Hope things improve soon - take care.