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Newbie here - Carers UK Forum

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Hi my names Ann-Marie I've Been a carer for what seems like forever and fed up having to fight at every obstacle put in our way. I care for my 3 kids 16 20 and 23 their problems range from autism learning difficulties to mental health issues. So here I am as speaking to family who are not carers and live so far away they just don't understand
Hi and welcome, Anne-Marie.

Yes it certainly seems that only those that have 'been there and got t-shirt' are able to grasp just how wearing caring can be.

I believe that you will find support here though, I know its been v useful for me over last couple years.

What do you think are main issues currently (if you able to put finger on them that is)

Hi I guess it's the lack of help or surrport when they reach 20 and trying to claim benefits on their behalf have just managed to get my 23 year old on esa again but will see how long it lasts due to his social phobia anxiety agrophobia depression he can't jump through their hoops. My 20 year old has a statement of special needs so I'm keeping him at college as long as possible as one at home 24/7 is enough to deal with but he can't get esa and stay at college so financially. Giving them pills alone does not help at all my son waited 9 months to see a Councillor then got 6 sessions 1 hour a week not even enough time for him to feel comfortable and it was over
Thank you for your reply
Your son with autism needs to have a home away from you. My son went straight from college to a residential home, and then into a supported living home.
If you don't do it at this stage, then from my friends' experience, once you have an adult child living at home with parents it's more difficult to get supported living later.
Yes I agree it is harder when they become an adult but I can't send him to residential home he would never cope with that supported living is a possibility in the future.
Find out what is available in your area before saying it's unsuitable. I would never have believed my son was capable of some of the things he's managed to do.
M was the happiest he's ever been when in the residential home. It was like a manor house, with walled gardens (he loved growing veg there) with lots of friends to talk to, lots going on, trips out several times a week. The woman who ran the place was amazing. It's the people, not the place, that are most important. Sadly the place closed down, due to government changes.
He's much more isolated in the supported living, with no friends nearby.
Ann Marie - I can't even begin to imagine what it must be like having three children with 'special needs' / MH issues of any kind, let alone without any sign of a father/husband to share the difficulties with you (sorry if I'm jumping to conclusions here, but you don't mention a partner/father-of-your-children so may they are absent from your lives??)

May I ask a difficult question, but it is very probably one you have thought about yourself, but here goes -

Do you think that your oldest son's mental health issues are 'not unconnected' to the fact that he grew up with two younger brothers both of whom have distinct 'special needs' in terms of their conditions?

I say this NOT to add to the worries that of course you already have, but only to say that, alas, so often, it is the 'non-special-needs' child who ALSO has to 'pay a price' for the adverse family structure. I'm not saying it is something that could have been avoided - special needs children ALWAYS take 'more care' than an 'average' child (I don't want to say 'normal' as it can sound perjoritive, but like it or not, special needs children DO take 'more care').

Is your oldest getting any kind of counselling for his phobias (which are VERY understandable in the circumstances I would say - it can't have been an easy childhood for him for so many reasons). Does he have any other family members (ideally his dad of course....) to turn to (uncles can be great!).

He may, you see, be highly reluctant to 'assign' his issues/problems to his family situation - I do think one of the burdens that the 'non-special-needs' (I'm going to say NSN for short!) children can have is that basically they feel guilty if THEY have any problems, because they can see that their SN siblings have FAR more problems than they do....conversely, they may (subconsciously, not deliberately) seek to either 'compete' for your attention (which is, again very understandably, more focussed on the SN children), or, perhaps, seek to 'justify' any attention they get from you by 'adopting' issues of their own....

How open have you been able to be with him, do you think, or he with you, about the inevitable stresses that his siblings' SN have placed upon both you, and him?

Another POSSIBLE complication is that if, say, your husband/their dad(s) have not played a part in the household, that you have (again, subconscioiusly, not deliberately) 'turned to your eldest son' to 'play that role'? I know that when I was widowed when my son was in his mid-teens, I had to be SO vigilant against trying to turn HIM into 'the man of the house'......so I'm wondering whether something similar has happened with all of you? That because your oldest is NSN you maybe 'leant' on him more than he felt he could cope with?

Do you think he feels a sense of 'crushing responsibility' towards you and his brothers? That he feels he 'should' become 'the man of the house' and 'look after you all'?? And that is just 'too much' for him to cope with now?

I am not saying any of the above 'is so', merely 'throwing it into the ring' for you to consider. Obviously, the goal is for your oldest son to have the fulfilling life that is his due (every child's due), and the issue is how to achieve it. But sometimes we have to understand where the 'blocks' are, so that we can deal with them, to move forward into a happier place for ourselves.

Wishing you as well as can be, in a VERY challenging situation for you - kind regards, Jenny
PS - one more 'dark though' to throw in (again, NOT saying this is so, just asking if it might be!).....do you think that you feel 'anger' (or in that ball park) at your oldest, for 'making a fuss' about something that after all, is, in comparison with his siblings, pretty 'trivial'.????

Do you feel that it is his younger siblings 'who have the problems' and that he should NOT have 'problems' which are no where near as 'real' as those affecting your younger two???

Again, I stress I'm only 'asking' to see what the underlying dynamics might be that could possibly be affecting your son....

Also, just to say, that of course 'anxiety' in him is highly justified - at a young age he has seen a side of life that many of his peers are blissfully unaware of....your oldest KNOWS that 'bad things happen to good people', and that can be highly anxiety-inducing. He KNOWS the world is not a 'safe and happy place', simply because of his brothers' problems. That can be very isolating for a young man or woman. He may well feel 'apart' from others of his age group. I know my son will always feel 'different' from those who never had to cope with tragedy in their lives - and, at the same time, will ALWAYS have something in common with anyone who HAS had tragedy in their lives. Coping with 'bad things' as both your oldest, and my son (a couple of years older than yours), has, I know, 'matured' them 'before their time'. This is both 'good' as in, they are wiser and less immature than many of their peers, but 'bad' (or perhaps 'sad' is a better word) because it 'drags them down' from 'easy happiness' (especially when they see 'easy happiness' .....'carefreeness' ..... in their peers.....)

Again, all this is only 'my thoughts' and may well NOT apply to your son's situation at all.
Hi so yes I have looked at all the options available for my 20 year old atm he's happy been attending a special needs collage this is his 3 Rd year and has lots of friends their and gets counselling does life skills ect and is doing OK and my hope is by the time he finishes will be ready for support living.

Hi Jenny yes their father was in their live up until around 5 years ago is still in touch but no is not much help.
I have 4 children my oldest is 28 and has no special needs he works full time and yes he has taken on some of the responsibilities at times. I would say I noticed my 23 year olds problems when he started secondary school as at the same time I was finding out about autism with is brother I went to his school a few times as he didn't socialise except with the two other kids who also worked in the library to keep away from people but as he was so clever unlike his brother they told me they had no concerns as he was above all in his class he left school with A* or As got offered a place at university and made so many excuses why he couldn't do that and went to a local college when he reached 20 his course ended and he went totally down hill from there I went to the doctors I don't know how many times asking for some help to be told time and time again he had to go himself. But he couldn't eventually we managed to get him their and they told him he should do some exercise and gave him the number for the ymca help line I was like are you joking he needs a mental health assessment and was told it would be at least 18 months wait to have one by this time a year and a half has passed and I'm at my wits end so we scrape together £500 to get him a private assessment from a reputable psychiatrist getting him there was not easy at all but he knew he needed help. Anyway he got diagnosed with surver social anxiety social phobia OCD with as having no help had lead to agrophobia as a coping mechanism he advised 12 to 18 months intensive CBT therapy but unfortunately I could not pay privately so went back to the doctors thinking ok now we have proof of his problems he will get the help he needs but he had to wait 6 months for the therapy and all he got was on hour a week for 6 weeks and we are back on the waiting list again he has since also been diagnosed with deppresive disorder and put on medication but pills alone don't help in my opinion he has AS as his problems and his brother and sister are pretty much the same his sister only got diagnosed last year and like him her problems began to be much more noticable when he/she started secondary school except he hid away she gets angry and punches walls ect when she can't cope