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Support for ADHD

EmilyEds1982EmilyEds1982 Member Posts: 2 Listener
edited August 2019 in Parents and carers
Hi there. My five year old has recently been diagnosed with ADHD and ODD and is currently awaiting and ASD assessment (I suspect PDA but I know they don't diagnose in my area). He also suffers from anxiety and has several ticks, vocal and physical. He's on ADHD medication. We're really struggling at the moment with the rebound behaviour when the meds have worn off and struggling with sleep. He's always slept badly and even with Melatonin it takes him ages to get to sleep and he wakes up several times over night. I shout a lot more than I want to but I'm working on it. We don't seem to be able to access any support because he 'only' has a dx of ADHD. All the support and awareness in our area seems to focus on ASD. Also struggling with school as they don't think there's any point applying for a statement even though they've admitted that he needs a permanent 1-2-1. So any advice on that welcome! 
Phew sorry, that was a long one! 

 

Replies

  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @EmilyEds1982

    Good Evening & Welcome to our Community/family.

    I am very very sorry to hear about your current problems.

    We have got some good info for you below:

    https://www.scope.org.uk/advice-and-support/families-with-disabled-children/

    Please please let me know if you need any further help/support????

    @steve51

  • megan_parkermegan_parker Member Posts: 12 Connected
    Hi there @EmilyEds1982

    Welcome to Scope, I hope you find our community helpful.

    I am extremely sorry to hear about your current situation and I hope that speaking on here and meeting other people experiencing similar problems will help you and make you feel less alone.

    I am one of the Community Champions so if you need any advice or help, please do not hesitate to ask, we're all here to help!
  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Hi @EmilyEds1982 and welcome to the Community.  It is nice to meet you.  I'm really sorry to hear about your experience with your son.  I hope you manage to access some support for you and your family.  You have come to the right place as this is a very caring/sharing Community and there will be some members on here who have similar experiences as yourself.  Please keep in touch and let us know how you are getting on.  If there is anything else we can help you with then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    That sounds really challenging. I had the same issues with my son's school, you can go directly to your GP and ask for a referral to CAMHS to get support from the educational psychologist, then get support in school. ASD is often co-morbid (LINKED) to ADHD so worthwhile continuing with the diagnostic process. My son was extremely disruptive at primary school (noise and focus a trigger) and it took a lot of work (and good SENCOs on board) but he passed his GCSEs with a 1 2 1 support worker (all A*-B, including A* in maths) which was amazing given he was nearly excluded at the end of year 7. He's at university now, and still needs support from their disability team, but is thriving. You're an amazing Mum, you've got this. 
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello
    Have you posted in the autism forum on here? Hopefully someone else will be able to answer your questions. 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,951 Scope community team
    Hi @EmilyEds1982, does your currently have an EHCP or is this the statement the school are reluctant to apply for? Although schools normally request these, if they're dragging their feet or unwilling to refer, you can request it yourself via your local authority's special education needs department. 
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • EmilyEds1982EmilyEds1982 Member Posts: 2 Listener
    Yes we're in Wales so we don't have ehcps. The statement is the Welsh equivalent. I think I'm just going to press on without the school. A friend of mine who's little boy has the same diagnosis has been awarded full time 1-2-1 in the neighbouring county. 
  • Beverley_ScopeBeverley_Scope Navigate Posts: 84 Pioneering
    hi @EmilyEds1982
    Sorry to hear about all of your issues.  It can't be easy.  

    Even though it is statements in Wales, you can still self refer for one for your son.  It is always best to have the school's support as they will be required to submit evidence if your county decide to go ahead with the statement referral but any evidence is useful such as any reports from professionals such as Occupational Health, Speech and Language an so on. 

    Because your son is on the pathway for ASD, have you thought about using our Navigate service.  I am one of the parent advisers for the free service which is for parents of children on the pathway to a diagnosis or who have been diagnosed within the last year.  The service is designed to provide emotional support and practical advice over a six session period.  This support comes in the form of up to an hour long phone call each week for six weeks.

    If you feel that this is something that my help, you can either ring us directly for a referral on 0808 801 0510 or click on the following link to take you straight to the referral form.

    https://www.scope.org.uk/family-services/navigate/

    I hope that we can help you in some way.
    Take care,
    Beverley
    Beverley Davies
    Parent Advisor
    Navigate
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