Published on 12, July, 2020
Hi all, I hope you can add some words of comfort.
I'm a 28 year old mom to my son who is 2 years, 3 months old. As of the moment, we are at the beginning of our journey. My son has been seen by several health professionals who have all indicated he is on the spectrum but we are having to jump through the hoops to get a formal diagnosis.
At the moment my son doesn't speak any words, he struggles with social interaction e.g. doesn't make eye contact, doesn't have an awareness of his environment, isn't interested in forming relationships with other children/ people. He also has zero awareness of danger and no stranger danger. He doesn't rock, or spin but does flaps his hand when excited and doesn't occasionally bit his arms (not to excess though).
I'm absolutely terrified about his future, I'm unsure about where he will come on the spectrum but even so, I'm scared about whether he will form relationships, have a fulfilled life and generally be happy. I have seen lots of stories of people living amazing lives living with Autism, but it's currently hard for me to see into the future like that and I'm losing sleep over it.
Has anyone else felt like this? Sorry for the long post, my head is just constantly swimming with thoughts and concerns.
Hello,
I think I understand how you are feeling to a degree.
My Son turns 19 in April this year.
His Mum (my wife) died of cancer a few years ago.
He went to a special school and did GCSE's
He was supposed to start at a local college in September 2021 but did not attend due to anxieties.
He lives at home and never goes out anymore. Not for over 2 years now.
Just wears pyjamas all day.
He can talk and cook basic meals for himself, if I go shopping to get the meals or ingredients.
He was receiving dla but , of course, on turning 16 this ended and my son did not wish to apply for pip....so he receives no benefits ie pip or UC.
I feel I can leave the house to go to work 4 days a week (as a mental health nurse) as he can keep himself safe at home with using the cooker etc and can shower, change his clothing and change his bed sheets.
Spends a lot of time on his phone, watching YouTube, podcasts. Sometimes playing video games.
He does show an interest in current affairs.
I'm 52 now and obviously won't be around forever.
My wife had a better relationship with him and engaged and could communicate with him much more naturally and effectively.
I have come to realise a while ago that he will be living with me forever and i worry about what will happen to him when I die.
I do have a will and my older sister is executor of this, but I do not want her to be responsible for him once I die.
She has her own life.
I have another partner now who is amazing, but I don't want her to feel responsible either.
Although she says she will stay with me and is not put off by my situation, if i'm honest, i don't know if she will stay with me for much longer because of my home situation with my son and not being able to have the relationship she says she would eventually want with me. (Potentially living together and marriage)
If I knew I would be in this situation, I would not have joined the dating site and would have made the decision to remain single.
I admit that although i was a good and supportive husband for 17 years, I am a bad parent to my Son and that I cope by having my head in the sand and going shopping and going to work to dissosociate myself from the situation I am in.
Thankyou for listening.