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bad day - Carers UK Forum

bad day

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Hi all today my post is about my 12 year son who has Cerebral palsy.

My heart is breaking for him he is so confused, frustrated and angry at the minute. I know his hormones are kicking in and his personality is forming and for any other 12year old this is normal.

It took all my strength not to cry in front of him when he told me that he thinks nobody likes him or that even us his family loves him..

He has a 7 year old sister who loves him dearly and increasingly wants his love and attention however my sons sees her as an irratation and takes most of his frustration and anger out on her over the simplest things.

I tried speaking to him to let him know how much we love him and how we are all worried about him that he can't express how he is feeling or how I feel helpless to help him.

My son has always been a fighter even when he was in intensive care fighting for his life as a baby he never give up. I know how fighting can be tiring and frustrating but he has shown the world that he is determined my climbing the tallest mountain in N.Ireland although a struggle he did it but did his way. He was recognised for this by the UK childrens charity Cerebra and won a UK prize for achievement and last year received the Presidents Commendation from the Boys Brigade UK which lead to him having a standing ovation on parents night.
I think my boy is still on the top of the mountain as he is lost and I don't know how to help him..

I think the forum is great but a lot of carers seem to care for your parents and older people which in itself is hard as I also care for my mother ... (another story).

Is there anyone out there in a similar position as me.... Who look after younger people. My son although he has cerebral palsy is mentally fine he is affected mainly by balance and co-ordination.

My husband and I have been told that we have done amazing work with our son as children with similar CP to my son can't do as much or are less independent. We have always supported our son and told him he can do anything he wants but he does it his way.

I just feel to helpless at the minute as I don't know how to help him now. He has spoken to his school counselling service but told me he didn't want to go back... as he thought it didn't help...

Is this just life and a mother son relationship that as they try and work out who they are become distant and thinks the world is against them ?

I am heartbroken I have always been able to help him, encourage him, and now I'm in maze not knowing which way to turn to help him find his way...

Life is tough and Love can be tough.

Thanks for reading
Love and God
Bless Image
My son is now 34. Brain damaged at birth, but fit as a flea, strong as an ox but can't write his own name properly or do any mathematics whatsoever, even 2+3. For children who are different, sometimes they just have to slowly find their own way in life. Actually, it's the same for all of us really. I'm now 62, and have come to realise that I welcomed opportunity whenever it came my way, and I've had a lot of fun too, and my share of heartbreak. Perhaps you both need to focus not on the huge "what am I going to do when I grow up" type things, but what can we focus on today, this week, this year? Where shall we go for holiday, etc. etc.? To concentrate on things he does like, in the hope that one day this might turn into something work related. Although that may not always be the case. (I love sewing for myself, just hate being paid to sew). Also concentrate on doing things as a family group, because at 12, he probably won't want to go on holiday with you for many more years!!!
Hi my son is 28 years old and has Duchenne Muscular Dystrophy - a muscle wasting condition that is usually fatal by the late teens/early twenties. I just wanted to say it is very hard when our sons hit puberty but it does get easier and they do come through it. Not so easy when you and they are living it! We went through the hating himself and hating everybody and all the worries over self image etc. My son is now a confident young man who advocates for others in a similar position to himself - I promise you it will get easier through time. My lad went to Uni and graduated with a 2:1 Honours degree. I think a lot of what they suffer is through frustration. My mum said that maybe he had been given the brain he has because his legs don't work but I think thats bull - having the intelligence just makes it 10 times harder because they know exactly what they are missing out on. I used to wish that maybe it would have been better for him to be less brainy and a bit more emotionally stable but he has turned out more than ok. All you can do is to keep loving him and keep being there for him when he needs you.

Eun
I don't have kids myself, but my sis has CP and I watched her go through a very similar issue.

She was initially mainstreamed but went to a special school for secondary education, and although we as a family were involved locally with disability groups my sis never had friends who were disabled. Not because she lacked social skills, but because she didn't want disabled friends, she wanted non-disabled friends. Unfortunately, she had little opportunity to make non-disabled friends.
I think she resented her disability, and for a long time couldn't accept it, especially during those difficult teenage years.
I don't think it was necessarily bad for her though. She was raised to be as independent as possible and has always been very assertive. Now she copes well, doesn't get frustrated really, and even socialises with disabled peers. It was a long process getting to this point and I can't say one thing made the difference, but I can spot a couple of things:-
- her independence...not just being able to perform tasks for herself but figuring out how to comfort herself without having problems 'solved' by others. Basically the ability to self-soothe. With my sis it just takes listening to her sympathetically. It took me a long time not to rush to sort the issue out for her.
- she knows her own mind, and is very perceptive about other people. I often thought she had a kind of victim mentality and I would try to 'correct' her world view, but I was wrong to, and I needed to recognise and trust her ability to read situations.
- improved day care. she had awful experiences in the past which made her reluctant to participate and meet peers. It's much improved now.
- treatment for depression. This REALLY helped.

I'm not sure I have much advice for you lovecanbetough, just wanted to share our experience. I think your son is going through a natural part of growing up that is exacerbated by having a disability. My opinion would be that self-acceptance (regardless of what you're accepting) is always difficult as a teenager, and the frustration he feels is a rite of passage. And although it's difficult to watch, your family is navigating this the best way possible, you seem very loving and supportive.
Hi Eun and Frito Image

Thanks for taking the time to reply.

Eun part of your reply was like you were talking about my son he has real issues with his appearance and how he thinks others feel about him.

Both your replies have given me that hope I was craving for yesterday Image . My son is very bright which I think it makes it harder as he does know what he is missing out on.

Like your sister Frito he wants ''normal friends'' if that word even exists he finds it hard to speak to or make friends with children with disabilities. We had him in the RDA for over a year the first 4 months he loved the rest of the time is face said it all and we withdrew him.

He prefers single sports like swimming as if he is in a team he feels he is letting them down because of his disability.

I tend to take each day as it comes but I do want him to have his dreams and he can and will achieve them. Both your replies have taught me that.

You are both special thank you
Love and God bless
Lovecanbetough xx