Update On My 3 ASD Care-ees

I have three adult children on the autistic spectrum. The older two have Asperger's Syndrome and the youngest has autism and mild learning difficulties. The older two liove here with us and the youngest lives in a granny flat a few doors away. Our daughter, the oldest, suffers from anxiety, depression, sciatica and blepharitis and hasn't been out of the house for several years and therefore hasn't been able to access the medical help that she needs. The older of our two sons has psoriatic arthritis, for which he gets treatment and is also on medication. He also has kidney problems for which he is supposed to be undergoing a procedure but which the hospital has told us will not be happening anytime soon. the only medical issue our youngest has had is sciatic nerve pain in his leg, but that seems to have eased with medication and physiotherapy. Our daughter has never worked, but did some work experience, voluntary work and was a trainee in a social enterprise which made chocolate. That was when she was in supported housing but her placement there was not successful, so she moved back home and has not had any outlets since then. She had hopes of finding somewhere for her and  the older of her two brothers to move into together but that fell through when her health issues became worse. That brother has not worked either but was in a social enterprise for about 6 years until the pandemic struck and the enterprise closed down. When it did reopen it had strict restrictions which didn't suit our son so he didn't go back. Eventually they had a review of his case and decided that he had reached his full potential and no longer needed to be invokved with the enterprise. The youngest of the three is employed 4 days a week in a local business. He appreciates being employed but struggles with what is expected of him and in turn his employers and fellow workers don't understand his autism. His employment story is a long one - suffice to say he wants to leave and is getting some support with that but also pressure from people at work not to leave. That's as much as I have time to write - life is busy as I am also carer to my husband who had a stroke just over a year ago and now has aphasia as a result and I'm having to do a lot for him particularly financial-wise. 

Gillian

  • Thank you for your message, aidie. Sorry it has taken so long to reply. A lot has happened since I last posted. My husband was taken into hospital at the end of October with a stomach ulcer and loss of appetite, due to depression. From there he was discharged in November to a care home, a placement which became permanent as he couldn't do anything for himself.  His appetite continued to be a problem and he became less and less mobile and increasingly frail. Eventually he was taken into hospital on 26th June with breathing difficulties and a high temperature. He was diagnosed with a respiratory tract infection and aspiration pneumonia. Although he responded well to treatment at first his condition deteriorated and he passed away early in the morning of 28th June. Life is still busy with the job of informing all the official agencies of his passing.  God has strengthened us and helped us through this time. The family is doing fine and we're all gradually getting used to D not being around any longer. The eldest, a son, has been a great support, emotionally and practically.

  • oh my you have so much on your plate --- i have no idea how you cope