Published on 12, July, 2020
Hi
I'm Lee. I joined the NAS many years ago as both a professional working in a care environment but also I had a personal interest in autism and the way it effects people in different ways.
My nephew and niece both have duel diagnosis of autism and adhd/add and I suspected this came from my brother who only recently began to acknowledge what i've been saying to him for many years about his own behaviour being typical of autism.
When I joined this site I felt that I may be somewhere on the spectrum but never really did anything about until recently. I was officially diagnosed with HFA in May 17 aged 46.
So now my membership of this site has a bigger significance than before.
Regards
Lee
I am a mother of a 19 year old son who has severe autism and learning disabilities. Having taken on the job of travelling 104 miles daily to take him to school and home . I find that I am totally physically and mentally drained. Me and my husband care for our son together with no outside help or family help ( I have a big family who have chosen to ignore our family). We have an older son who is a star, and loves his brother so so much . Having taken on this school run since last Sept, because the transport provided was neglectful of our son I feel like I am at breaking point. So I have had to good away few a few days alone. But I feel so very very bad about that, and the guilt is horrific!! How can I leave my home and family. They need me , but I nothing to give..,, I'm burnt out.
You definitely sound like you need support. Whether that's a local service or respite. You need time out otherwise your burn out will make you ill and then it will be even harder to cope. There should be no guilt in wanting some personal time.
You know at some point you will need to consider long-term provision. Seeking respite now and then eventually independent supported living or residential will allow you to play a key role in setting up his life, but also maintaining yours and your families quality of life. Everything about your existence cannot be focussed entirely on your son. It's not selfish, it's giving you the strength to cope longer term and seeing your son settled and being supported the way you would expect.
Thankyou for your advice, its comforting to know that its ok to step back and take time out to recover.
Best wishes to you and your family
They are lucky to have you as support
Take care x