I wish I could give my life to my son

[Catsneverjudge]

I can't honestly remember a time in my life when I have ever felt so desperately low,
I'm 47, single mum of four (eldest and youngest are severely disabled - two different unrelated disabilities).

My eldest son is the age now that I was when I gave birth to him (23).
For his first year of life his development was normal. He was a happy smiley baby. Reached out for toys. Held his arms up for me to pick him up. He'd even started to babble.
Then when he turned one year old it was as though a light had gone out. He lost all eye contact. His smile had been replaced by a blank expression. He showed no interest in toys and no matter how hard I tried I just couldn't reach him.

He has never spoken a word in his life.
He lives in adult supported living but requires 24/7 care and supervision (two carers when out and about).
I have always felt incredibly guilty that I can't care for him myself now he is an adult, but my youngest child at home also has additional needs.
My eldest son is completely locked in his own world. He has no awareness of Birthdays or Christmas. He spends his time rocking back and forth while shaking a rattle.

I just keep thinking of the life I had at 23 when I was pregnant with him, compared to the life he has now.
I had the independence and freedom that he will never know.
I was in a relationship (with his father). I had a job, friendships.... just all those things I took for granted.
I have begun to despise myself for having the life he will never know.

I have never heard his voice, yet I find myself just longing to sit and have a chat with him.
I just feel so alone. I can't talk to anyone as I don't want to be a burden to them.
I just find myself with tears streaming down my face without realising I am crying.
There are so many reminders of the life he could have had.

I am finding this level of sadness quite overwhelming as I have never experienced it to this intensity.
I've had plenty of emotional setbacks along the way, but this is just something else. It scares me how low I feel if I'm honest.

I’m so sorry OP. I think it would be good if you can get a doctors appointment to discuss how they can help you. Also try to separate your understandable sadness for the life your son doesn’t have, and how his life is for him. He may be content in his own way.
I really feel for you and your sadness and hope you have someone there who can look after you. Xxx

I don't know what to say. I wish I had words of wisdom or comfort. I can't imagine the heartbreak you must feel.
I work for a charity that provides residential care for adults with disabilities. All I can tell you is that the caters that work there are overflowing with care for the people they support. They get to know each individual and do everything they can to give the person experiences they will enjoy even if only fleetingly.

Your son is loved. He is being looked after. You have and are doing what is best for him.

But that doesn't take away your sadness for him. All I can suggest is that you continue loving him as you do, and make sure your other DC know how much you love them too. Let them show you how proud they are doubtlessly of you.
Sorry, that all sounds so glib. But I wanted you to know that people are willing to 'listen' to you.

My heart goes out to you. It sounds really difficult. I have used counselling a lot in my last decade and it has helped me enormously. I do think talking to someone would be good. Of course you are not a burden. Friends would listen or a good counsellor if you can access one?

We are the same age and I find myself being sad a lot just now for the past and worried about the future. It's perimenopause for me intensifying the feelings. That is not to dismiss your completely valid feelings, just to say that perhaps that might be in the background and you won't always feel quite as you do now?

I don't have many words after reading your story. I can feel your sadness through. Thinking of you OP. You sound like an incredible woman Please find some real life support to talk all of this through

I’m sorry OP. I too have a DD who’s autistic and I’m petrified for the future. Wish I had some wires of wisdom but today’s been very taxing ♥️

Your post is heart rending.

Have you ever had grief counseling?
You've gone through a long and very difficult bereavement in a way. It's not so acceptable to mourn the child you had for a year when he is still so very present - but unreachable. This can have a devastating effect on you because you've suffered a loss you can't talk about.

My son is disabled so I kind of know what you feel. Your not alone. He is year 6 and in the last year of juniors. His sister is year 3. They should be at school together. He should go to the local secondary like his older brother. They should all have gone to the same schools. I think this year how utterly unfair this all is. Tbh I find it does me good to get mad, get upset, feel desperate and cry. Much better than pushing it all down.

Yes it's unfair, no you and him don't deserve this, no it's not OK.

I keep telling myself that ds is happy. In fact he is the happiest of my kids. His elder brother is extremely clever but depressed. I think being happy is an underestimated.

I wish I could say something that would help

Hello, I completely understand. I’ve 3 children (23/20/8), eldest and youngest have ASD, eldest in supported living. He is verbal and independent in the sense he can travel to some extent independently, but, has no friends/job. It deeply saddens me (your post triggered my tears). He came home tonight to stay and I just find it hugely exhausting. I have to do everything for him, make him a drink/dinner etc. my youngest has to now sleep in my room so my eldest can have his bed, I just find life hard most of the time. The only time is switch off is when I’m at work. I was also a young mum (18) and struggle with how challenging life has been due to the disability that my eldest has (and now my youngest), the constant battles I had with education were completely unacceptable. I so wish our lives could have been different. I feel jealous of people with their kids who have no issues and just how straightforward life is.
im single and tbh can’t imagine ever meeting anyone, it’s just so lonely, and I honestly don’t think many people fully understand how challenging life can be.
I have no suggestions but just to let you know you’re not alone and I’m so sorry you’re feeling like this. Lots of hugs xx

OP I have no experience and therefore no wisdom to offer but I wanted to send you some kind words as I cannot imagine how hard that must be.

It is deeply sad and unfair, but the chances are that your lovely DS is not thinking about what you had and what he hasn't. This torture is yours alone - so whilst i completely understand your sadness at not being able to give him what you had - he is probably not feeling anything like the loss that you feel.

You have nothing to feel guilty about - nothing. Please make an appointment with a GP who might be able to put you on a path towards some sort of respite from your sadness.

I wish you all the luck in the world.

My children are also severely disabled (but younger and not profoundly disabled). I also struggle with similar thoughts to those you describe and also feel incredibly sorry for myself at times that this is how it's all worked out.

My advice, even though it maybe sounds trite, is to try to find the joy. Could you ask his supported living carers to help you take him out for a day? Perhaps to a hydrotherapy pool or adult day centre for disabilities or a sensory room for adults? Even very profoundly disabled people experience positive feelings and gain from nice experiences. There will be something he enjoys.

How old are your other children?