Help needed with my 2 sons — Scope | Disability forum
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Help needed with my 2 sons

mrs_mckee_82 Community member Posts: 1 Listener
my son has significant delays in his development he done so since he was 12 months old he got referred by his consultant at 17 months old but the CDC refused to have him in there list until he turned 2 so we are now 6 months through our 12 month wait for assessment.

he goes to a special need nursery called KIDS he has been going since November and he is coming or of himself he still doesn’t talk just makes noises, he still doesn’t acknowledge children his own age he much prefers children older or adults. he has sensory processing issues, no social skills, no sense of fear, his pain threshold is through the roof he feels nothing, he doesn’t understand emotion if we pretend to cry he thinks it’s funny and laughs, if we try and discipline him and raise our voice he also thinks that’s funny, he won’t feed himself, he sleeps relatively well waking just once in the night on a good day on a bad day he could wake up and then be up most of the night, he won’t eat bland food it has to be of strong flavours, he explores the world by either smelling everything or puts everything in his mouth.

He claims DLA and is entitled to his 15 free hours a week for nursery

i guess the reason for my post is I’m just worried that we have gone through everything we have for him and will all be in vein and they won’t give him the diagnosis he needs. 
If he doesn’t get his diagnosis does his DLA stop? 
The EHC we are starting with his nursery now will that also stop so will he have to go to a main stream school?

i also have a 19 month old who is showing signs of ASS he doesn’t play with any toys he spins everything and himself, all he does all day is run back and forth he is a very fussy eater he is still on 10 month old baby jars that’s all he will eat and he doesn’t sleep if I get 4 hours sleep a night I’m lucky he is also under a consultant who is reviewing him in August to looking at referring him also. He is super super clingy to me. He has just started the same nursery as my eldest son and we are having to slowly introduce him to it leaving him just for an hour for one day at the moment.

Even though both of my boys don’t really play with toys (my youngest more then my eldest) they both know how to work you tube without any assistance from me or dad. 

i just feel so alone my husband is great but I am them both all day everyday and the stress of having to keep on top of day to day duties (my husband does help when he can but he works full time) having to manage with 2 non verbal boys both with 2 different needs.


  • jaycee6
    jaycee6 Community member Posts: 52 Courageous
    Hi mrs mckee..Please stop worrying,,It sounds like they both need help.AS the Ehcp has been started push for it to get done.This is the way to get help for your children.It is harder when you dont have a Ehcp for your child .Dont worry about you tube a lot of disabled children learn that one at a early age..It doesn't mean they dont have other problems.Wishing you all the best
  • despondent
    despondent Community member Posts: 88 Connected
    edited April 2018
    Dear Mrs McKee, I am so sorry that you are having such a difficult time. Does your nursery have a bullentin board, whereby you could invite other parents whose children attend the nursery for coffee mornings to share your worries and concerns together. Your children are being looked after by staff who have trained in special needs. They will be carrying out observations on your sons' emotional, physical and educational development. They will not diagnose your sons, but they will be able to give you a report for your Consultant when you have your appointment. Please make an appointment with the staff to discuss your children, and to get advice on what you can do to help them. Hopefully talking with them will help to allay some of your fears.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    Welcome to the community @mrs_mckee_82
    As a mum, I know it's easy to worry about our kid's futures but it sounds like you are doing a grand job and whatever happens, you will fight to make sure they get all the support they need.

    You sound exhausted and stressed out, when my kids were younger I went to an amazing parent and toddler group where I met some great friends and we helped eachother through the tough times (we are still friends 15 years later!)

    Being a stay at home parent can be quite isolating, are there any groups you could attend? Or perhaps an evening where you can take a bit of time for you? I joined the WI to get out and meet other women and it has been fantastic!
    Senior online community officer


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