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I need some advice with my 9yr old son with ASD

Sarahadams1Sarahadams1 Member Posts: 1 Listener
I was wondering if anyone can advise me, my son was diagnosed with ASD last year, he was given sleeping tablets to help him shut off at night, he is 9 now and is becoming very clingy to our home, he hates to go out, would stay at home 24/7 if he could and is constantly complaining if we ever go anywhere, it’s causing chaos within our family, we have a 6 1/2 year old girl too and it’s tough for all of us to keep hearing negative things, treating him is like a punishment to him, the only thing he likes to do is play. We are now finding ourselves avoiding going out to places because it’s easier to stay at home but that has to stop as it’s not healthy for our family, can anyone suggest anything. 
I have another appointment at the hospital to see the Paediatrician in Nov to maybe give him some daily medication to see if it helps and to give us some advice, please help.xx

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Sarahadams1 and a very warm welcome to the community! Thank you for sharing this with the community and I imagine this has had an impact on the whole family.

    Scope has a national mentor service that provides emotional support for parents, called Navigate My colleagues at Navigate have lots of experiences from diagnosis to dealing with the day to day.

    Also, if you are based in East London, Leeds, Northamptonshire and Peterborough you will be able to access Sleep Right which is a service to improve a child's sleep. Our sleep practitioners specialise in working with disabled children. They will give you practical advice and suggest steps you can take to help your child sleep.

    Have you been in touch with the National Autistic Society? They have a helpline and resources which you might find beneficial.

    National Autistic Helpline

    0808 800 4104
    Monday to Thursday 10am-4pm and Friday 9am-3pm

    We also have an Autism advisor here on the community who may be able to offer some further guidance: @SparkleSheffieldAutismAdvisors

    Please do keep us updated and I hope the appointment in November is beneficial. :)
    Community Partner
    Scope

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  • paffuto10paffuto10 Member Posts: 388 Pioneering
    @Sarahadams1, hello there :)
    Sorry this is quite a late reply, I've only just spotted your post. 

    We used to have the same problem with our son (he's adult now) 

    We were lucky enough to have a learning disability nurse who devised strategies for getting out of the house with minimum chaos!! 

    I wonder if you are able to access a learning disability nurse? Ours was provided through the education system but son did attend special school so that would have helped. 
    You could maybe ask about this at your paediatric appointment in November? 

    I remember one very successful strategy was for everyone else to quietly get ready first and wait in the car, leaving just one person with son. 
    (everyone getting ready together was just too much for him) 
    Son was then told by the one remaining person that we would be leaving in 5 minutes and given info/times on where we were going and what time we would return.

    Also, whatever his favourite game/ toy was, that he could return to that as soon as we came home and extra time (stay up later) to play with it. 

    Another strategy was to have everything ready in one place at the door - shoes, coat, bag, toy, whatever. So basically, getting ready as quickly and quietly as possible. 

    Difficult I know, isn't it? Hope I have helped a bit. 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Thanks for sharing your experience @paffuto10, I'm glad to read you were able to find strategies that worked with your son. 

    How are you doing today @Sarahadams1?
    Senior Community Partner
    Scope

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  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @Sarahadams1 I’m Emma, one of the Community Champions. Welcome to the community. Please keep us posted with how you are getting on. It’s great to have you here.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hi again @Sarahadams1, I just thought I'd also mention our Navigate service to you. It's a free service to help and support parents of children who have received a diagnosis in the last year. You can read more about it here: https://www.scope.org.uk/family-services/navigate/
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • Beverley_ScopeBeverley_Scope Scope Navigate service Posts: 84 Pioneering
    edited September 2019
    Hi @Sarahadams1

    My name is Beverley and I am one of the parent advisors for Navigate here at Scope.
    It must be really hard for you trying to support your son with his needs and also trying to keep the family life going for your daughter.

    Many parents of children who have autism find it hard to go out and about for different reasons.  Sometimes it is because of the problems that arise when out or sometimes it is because the child may suffer from anxiety about being outdoors or transitioning from place to place.  As @Chloe_Scope said, the National autistic Society is an excellent placed to start as they do have a helpline.
    Another good web site is Autism Speaks https://www.autismspeaks.org/ which has a huge library of advice, information and tool kits for parents in a variety of situations.  

    As @Adrian_Scope also said, we are here as a free service for parents of children who have been diagnosed within the last year with support, advice and practical information if you feel that it is for you.

    we are open to take calls for referral Monday to Friday 9am - 8pm and on Saturdays from 9am to 12pm.  Our number is 0808 801 0510.  As Adrian also said, you can complete an online referral form which is above.

    please get in touch if you need support or you feel that we can help  :)

    Beverley Davies
    Parent Advisor
    Navigate
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