Just popped into say hello

whatsthealternative
whatsthealternative Community member Posts: 7 Listener
in Start here and say hello!

Hi folks,

I decided to pop on to say hello, I have an adult son with ASD learning disabilities, Hyperacusis, and Sensory processing needs who is now living in his own home with full support, which consists of myself and his wonderful team. and doing well, his first care package support provider were not a match and so we opted to remedy that so was changed to his current, who I absolutely cannot fault 😍 Happy son, Happy mum 😍

I also live with My partner who copes with PTSD, CTSD ASD and other underlying additional needs so I thought popping on here maybe helpful, insightful and nice way to meet other people. I hope everyone is doing well and staying positive x

Comments

  • Jimm_Scope
    Jimm_Scope Posts: 5,057 Online Community Team

    Hey @whatsthealternative, sounds like things are in a good place 😊 that's lovely to hear. Hopefully this can show people that there is help and support out there, even if it can be a bit of a hassle or fight to get it. How is your son doing?

  • whatsthealternative
    whatsthealternative Community member Posts: 7 Listener

    Good morning Jim, how are you? sorry for the delay in replying, it's been a busy few days. The I way look at things, is first, I figure out where the support is that is needed, then make sure that we have what that support is, so that has included support for my adult son, who was diagnosed aged 17months with ASD, learning disabilities, hyperacusis and sensory needs, pushing for and receiving his early diagnosis has been key, then similarly the support needed for both my partner and myself, as my partner has had ongoing mental health needs for many years which we finally got to the bottom of the last couple of years. I however had no disabilities until relatively recently and had no disabilities until…

    Back in August of 2021 I was rushed in to hospital with a rather unique bowel obstruction which left me with long term mobility needs, so I have had to get used to how those have effected me, which as you can imagine took a little adjusting to, and took a little time to re calibrate that balance again, however once I figured out that I could still do the same things I did before, just in different ways that was the catalyst to feeling less stuck. I soon learned that nothing ever stays the same, and the only thing that IS constant is change.

    SO I reached out to my housing association and OT and was assessed for our home to be adapted, I was provided a low level access shower and grab rails and a full bathroom refit as well as my downstairs toilet being fitted with a raised seat and grab rail, and a secondary banister to help me get upstairs and WOW what a difference, I had help applying for my then PIP which will be changing to ADP soon but as I don't need to do anything for that changing over thats all going according to plan too.

    I also had my partner assessed back in 2022 and we finally had him seen by a mental health Dr who diagnosed him with PTSD and CPTSD he has also recently been separately diagnosed with ASD and ADHD with an additional appointment in the pipeline to see a Trauma specialist (who that will be right now we are not sure) but at least it's going to happen which is the main thing.

    One thing I will say though is that our local housing association LINK and our WRO from LINK have been worth their weight in gold we have had the support needed in various avenues in our lives which has been really wonderful, when you have the right support both generally physically and with regards to any mental health needs it can make all the difference in the world, so I just wanted to spread the word, that there is help out there, and would encourage others to reach out to the right people as it IS there, I have kept at it to try to get the support for my partner and although its taken around 2 years we got there in the end.

    And as for my son, as well as my partner and I and of course our family, he also has a lovely support team around him such as his OT, SALT, CLDCN, SW, Dietician and EARS Independent Advocacy Service SCIO and Independent Advocate – Learning Disability & Autistic Spectrum, we all work together to ensure my son has what he needs and that all support he receives is person centre led, which has helped him tremendously however I can help anyone in anyway I am happy to.

    With love and blessings

    Lors (Scotland)

     

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