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Starting the diagnostic pathway for possible ADHD and PDA (my son)

Flossie73Flossie73 Member Posts: 5 Listener
edited March 4 in Parents and carers
I'm a mum to a 10 year old boy who has Autism.  We have just moved back to Cornwall to be nearer to family.  Starting the diagnostic pathway again for possible ADHD and PDA which feels very overwhelming! x

Replies

  • 77cp77cp Member Posts: 21 Connected
    Flossie73
    Welcome to the community. Where do you live in Cornwall? My daughter lives in Cornwall and has a son with Down's syndrome. He goes to a special school and he is collected by taxi. Hope you manage to get things sorted out
  • steve51steve51 Community champion Posts: 6,169 Disability Gamechanger
    Hi @Flossie73

    Good Morning & Welcome it’s great to meet you today 😃

    I’m part of a team of Community Champion’s here at Scope 😃

    We have got some good info/advice here on our site/community that will hopefully help.

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

    Please please let me know if you have any further questions?????

    @steve51
  • chiariedschiarieds Community champion Posts: 1,659 Disability Gamechanger
    Hi @Flossie73 - Welcome to the community from me too. I hope it helps you & your son being nearer your family. I'm sure their extra support will be appreciated.
    It must feel overwhelming looking at further diagnoses, but please know people here will do their best to also support you. Please talk here any time & let us know how you're getting on.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 5,573 Scope community team
    Great to have you with us @Flossie73! Many of our members have children who are going through a similar situation, so I hope we'll be able to support you. :smile:
    Senior Community Partner
    Scope
  • Chloe_ScopeChloe_Scope Administrator Posts: 7,598 Scope community team
    Welcome to the community @Flossie73
    Community Partner

    Scope
  • Flossie73Flossie73 Member Posts: 5 Listener
    Many thanks everyone for the lovely welcome!  We have just started to list all of the professional reports that are now needed in order to review W's EHCP. Will keep you posted! 
  • Chloe_ScopeChloe_Scope Administrator Posts: 7,598 Scope community team
    Hi @Flossie73, just wanted to check in to see how things were going. :)
    Community Partner

    Scope
  • Flossie73Flossie73 Member Posts: 5 Listener
    Good thanks Chloe, I've contacted Sendias and they are coming to see me next week - the key worker has personal experience of PDA so will be an invaluable help to us.  IPSEA have also said that we have a very good case in naming the specialist school we would like for W.  Thanks for checking in, have a lovely weekend, Sarah x
  • Chloe_ScopeChloe_Scope Administrator Posts: 7,598 Scope community team
    This is great news @Flossie73! I really hope the meeting goes well this week. :)
    Community Partner

    Scope
  • Sorry_SusanSorry_Susan Member Posts: 18 Connected
    My daughter has PDA but we chose not to get the badge as we were advised not to go down that road. I do however treat her as PDA and it makes a massive difference to her behavior. 
    All I can say as encouragement is that it will improve as you learn to manage it. 
  • Flossie73Flossie73 Member Posts: 5 Listener
    Hi Susan, 

    Thanks for your reply and encouragement.  Like you, we are using PDA strategies at home to create a low demand environment which does seem to be helping our son.  I fear that without a diagnosis we will be unable to get him into the only specialist school near to us that recognises PDA :(  It's a difficult balancing act and we have a long road to travel, especially though the teenage years!  May I ask, how old is your daughter now and she did you start using PDA strategies?  

  • Sorry_SusanSorry_Susan Member Posts: 18 Connected
    @Flossie73 we should have started much earlier as we always knew she was different, but she was our normal. We only started at age 13 when all hell broke loose. She is now 16 and (mostly) happy and settled. Attendance at school dipped to around 50% but she studied at home. She is now 16 and found A-levels. She chose to go to boarding school and that was a good call. We have some tough times, but compared to 3 years ago it is a doddle. I get frantic calls at 3am sometimes, but she is mostly holding her own.
    The autism diagnosis was godsent. Us knowing the PDA part made a difference.
    Her maturing a bit helped as well, but I think the big game changer was us knowing that she was not being an absolute pain on purpose. 
    I am rambling!
  • Flossie73Flossie73 Member Posts: 5 Listener
    Hi Susan, 
    So pleased to hear things are better for you all now and that your daughter has found fulfilment and happiness.  We have just turned that corner of understanding that W is not doing this deliberately but out of extreme anxiety.  My frustrations have now turned towards the professionals who still seem to want to send us on yet more parenting courses!  Here's hoping we can weather the next few years of teenage hormones. May I ask, did you ever have any involvement with CAHMS and if so, did they have an understanding of PDA? 

  • Sorry_SusanSorry_Susan Member Posts: 18 Connected
    Hi @Flossie73,
    I went on one of the parenting courses - Forest parenting course - for children with ADHD. That was all they had to offer at the timed I was near melting point. 
    It was the BEST ever course. My lovely has ADD and ASD and (some) of the ideas were brilliant. What was the best though was having other parents in the same position and nobody judging, not even the councillors. I felt supported, understood and cannot praise the course enough. 
    I only ever attended that one course, cannot say my local authority inundated me with help!
    Re CAHMS, we are on a waiting list of another 40 weeks to be seen. I use all my spare pennies for private therapists as the wait is so insane. 
    Good luck though, and if you need to talk, feel free to contact me re our ASD / ADD journey.
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