Young carers

kingfisherblue

Not exactly disability, more for my son who is classed as a young carer, but I would appreciate any opinions.

I have three childen, an adult daughter and two boys age 14 and 12. the 14 year old has Down's syndrome and numerous medical problems. He has received HRC since he was three months and HRM since he was three years old, so that gives you some idea of the care that he needs.

I'm a single parent and my kids see their dad for a few hours every Saturday. I wouldn't have any issues with them seeing him more frequently, but he moved to be with his new family and lives an hour away. He is happy with the current arrangements.

My youngest has always had problems regarding his dad leaving the family home. He was five at the time and has never accepted it. He has had some counselling, 1:1 sessions with a learning mentor at primary school, and has a lady coming into his current school occasionally from the behaviour team (for emotional problems - his behaviour in school is excellent according to his teachers).

He started at the Young Carers group a few months ago, due to his emotional issues. At first, a student would come out weekly for a 1:1 chat with him and he enjoyed this. She came for about six or eight weeks, but then moved to another placement and there are not enough staff for my son to have any 1:1 on a regular basis. He settled into the group reasonably well, although he didn't join in everything - he is quite a loner. The staff were happy with him, although once he did lose patience with another child and shouted. The leaders of the YC group told me that it had been a particularly hectic night and that they were surprised at the sudden outburst.

A few weeks ago, the group was split into two age groups as it was too large for the venue. My son's group has different leaders. He is happy that the group has split, as it is quieter and less boisterous, but according to one of the leaders, he is not very tolerant of others to say the least. He argues and sulks. He feels victimised and tells me that the staff pick on him sometimes - he says that he is blamed for anything that goes wrong.

For my part, I feel that one particular leader waits for me to collect my son and then she complains about him - every week! Tonight, it was that he didn't join in a game. The kids don't have to join in, and he isn't sporty. She also said that there is a bowling trip planned, but 'apparantly he doesn't like bowling'. I agreed that he doesn't enjoy it. He never has, and would rather not spend an evening bowling if there is an alternative (including staying at home).

Now, I'm not going to force my son to bowl if he doesn't want to. He'll simply give the group a miss that week. He genuinely doesn't enjoy it, and on other occasions when we have gone bowling, he would rather go to his nan's house and do a jigsaw with her.

I feel that the leader I mentioned above is quite negative about my son. She never says how much he has enjoyed something (and he does enjoy things). She has now started to come out to the car to meet me - this happened last week and tonight. Both times, she expressed her displeasure about my son not enjoying an activity or (in tonight's case) not joining in. She has commented that he is sulky and I agree that he can be at times.

He has now told me that he enjoys the group, but he doesn't like the new leaders. I'm trying to be fair to them, but maybe I'm too closely involved. It does seem as though this particular leader has an issue with my son.

I'm not under any illusions - he's no angel. Like most kids, he can be moody at times. He may well have given backchat, but if he has, and I've found out, he gets told off by me and has to apologise. I don't allow rudeness or bad manners and I'm known in my fqamily for being a bit strict at times - but always fair. If I make a mistake, I apologise.

I'm planning to ring tomorrow and speak to one of the senior staff. My son gets on well with both of them, and I would say that they are quite strict as well. I'm wondering whether it is that he has clear boundaries with them, and respects them as a result. I know he should respect the other leaders, but maybe he doesn't - I just don't know. I think I'll ask the senior leaders their opinions, as my son is now thinking about giving up the group because of the leaders - even though he prefers it now that it has been made smaller.

I try to give all of my children some individual time each, and I manage it most days. My disabled son goes to bed earlier than my youngest, so I spend some time with the younger one then. I also spend some time with him after the special needs bus comes in the mornings. These times are not a quick chat over my shoulder whilst I'm filling the washing machine - I take the time to sit down and have a talk about whatever my son wants to talk about (but my eyes do glaze over a bit when he talks about motorcyles, woodworking tools, or The Gadget Show )

I'm not sure if I actually have a question now. I think maybe I just needed to get everything off my chest.

Sorry for the long post and thanks to anyone who reached the end before nodding off

Savvy_Sue

I'm just going to ask how he is at school? Because while I wouldn't want to diagnose at a distance, and who's to say what's 'normal' anyway, he does sound remarkably like DS1 in some ways. And DS1 has 'fragments of Asperger Syndrome' - well that's the most official report we've got!

I agree that having a chat to the senior leaders might be useful. If someone was determined that DS1 should do something / try something "because he might enjoy it this time", it just never worked. And once we'd twigged this, life was much easier ... It meant that on school trips staff had to be made aware that trying to force him to go to discos etc was probably not worth the effort!

kingfisherblue

He's fine at school, Sue. The teachers are pleased with his behaviour, attitude and progress. He's above average in everything except sport, which he just doesn't like. He did have one detention for forgetting to do his homework, but other than that I don't think he has been in any trouble.

He is a library assistant, he helps to write the school's daily blog and contributes ideas. He is in the aircraft modelling club and has just joined the creativity group. I read the online praise wall regularly and he has appeared on it three times - no one else has been mentioned that frequently.

I've never seen any traits of autism or Asperger's, except for a need for routine. He does tend to get stroppy if his routine is out of sync, although less so now that he is older.

He has been assessed for dyspraxia because the school nurse in primary thought he might be dyspraxic. I said he wasn't, and the paediatrician couldn't work out why the nurse had thought he might be, as he showed no signs of it. His main problems are low self esteem, lack of ability in coming to terms with his dad starting a new family elsewhere, and the need for someone outside the family to spend some time with him on a regular basis. I think the need for this stems from the fat that his dad left, and he wants to feel that someone is interested in him. Although he sees his dad every week, dad is often watching the horses on TV, or is down at the bookies, or shouting at his daughter from his second marriage (the little girl is very demanding and naughty, and my son resents his sister and the fact that she lives with both her parents. He also resents her coming with dad at weekends, as he feels dad should spend this time with him and his brother)

My son loves helping with stuff like fixing locks, putting up shelves, etc, and I'm encouraging him with this, as it is making him feel better about himself.

He blames himself for his dad leaving, even though I have reassured him that he is not and never has been to blame. He told me last year that he must have been really naughty for his dad to leave.

He is a lot better than he was, but still is a mixed up kid at times. I had seen massive improvements and an increase in confidence, but this has been knocked back since the new leaders at YC started. TBH, I feel that they don't understand children much, or possibly that they just aren't interested in the kids who don't do exactly as they want. I run Rainbows and Brownies, but wouldn't be complaining to a parent every week, especially about minor matters. If it was that bad, I would suggest a meeting to try to sort things out.

HB58

I hope that a chat with the senior staff helps to sort these issues out, it is a real shame that your son is starting to not enjoy his time at the club. You seem to have a fairly balanced view of your child, it's not as if you think he is an angel.

FWIW, I have always hated things like discos and bowling. At least I am old enough to make up my own mind, I was pretty miserable as a teenager when I was expected to join in with that sort of thing!

nlj1520

You poor thing and your poor son! It seems to me that the new leaders don't realise that your son doesn't need to join in activities to enjoy the fact that they are going on around him. You said that he is a bit of a loner..........so am I and they should respect that in your son.
Is there any way that he could get some counselling around his sadness around his dad leaving? The local Child and Adolescent Mental Health Service may offer something? Sometimes charities have access to counselling.....try your local Carers charity. They probably run the group he attends now.
Hope you can sort something out and all the very best to you all.

[Deleted User]

KFB your lad sounds like a great lad,it sounds like it this YC leader who has the problems not your son,they should be far more understanding of young people who have "issues",I seriously wonder how much experience people like this have of the "real world"
I hope it all works out,he`s a very lucky lad having such a great mum !

kingfisherblue

Thanks everyone.

nlj, he had couhnselling through CAMHS last year, but in our area you only get it for six weeks. He was just starting to get somewhere and it stopped. I can reapply after a year, so a couple of months to go. I did ask his school, and they had someone from the behavioural team visit, as emotional problems are dealt with by this team. She's seen him twice since Christmas, so not really enough for him, but services are stretched. She did understand that my son is a loner though, and agreed that some kids are not inclined to have masses of friends. He does have a few friends, but no one close.

I have asked several times for a mentor at school, preferably someone who can just spend 30 minutes with him each week, but nobody has been forthcoming. I can understand that in a way, as it would be a teacher after school, but I can see that this time would prevent his problems increasing, so it would be in the school's interests to help now, before he does develop any bad behaviour or his work suffers.

I did try ringing YC today, but the only person in the office was the leader that seems to be the problem. The others were out - they do outreach work in schools, and one of the senior leaders works on two sites. She'll be in tomorrow though, so I'll try again then. I'll let you all know what happens.

Woodbine, thanks for being so kind. I don't always feel like an adequate mum, never mind a great one, but I do my best. Even if I don't manage to sort things out, my kids know how much I love them because I tell them and I show them by spending time with them and taking an interest in their lives. I've even managed to sort out a few woodworking jobs for my son, fixing wooden toys at the local community nursery - he's delighted and is now thinking about plans to make a wooden garage. Another lonely occupation, but one he would enjoy so much. It's a real shame that there are no woodworking classes nearby, as he would benefit greatly.

skipsmum

Kingfisher, you are a more than adequate mum. Its very hard to "ration" time when you have a disabled child -much harder than two children with a big age gap. Its possible the carers group just isn't right for your DS at the moment - my DS2 dropped out of cubs because he struggled with the odd boundaries they set. My friend's daughter went to the carers club twice but was bored witless - different kids need different things.
Re mentoring, you could try to get it through respite - we had a sibling-of-disabled child for 2 hours weekly so she could have time away from her brother who had high care and attention needs. Or possibly,
when our disabled son started mainstream college we paid another boy in his class to get the bus there and back with him as a sort of bus-mentor, this workedd really well for us.
I'll have a bit of a think and see if I can come up with some more ideas - I think you are doing really well in a difficult situation: don't let it get you down! xxx

Savvy_Sue

I agree, repeat after me, I AM DOING A GOOD JOB! Honestly, we all feel this way, but you really do sound as if you're doing OK with this!

kingfisherblue

Thanks skipsmum and Sue - I was struggling the other night and really felt useless.

Right, an update. I have managed to speak to the senior YC leader yesterday. The other leader had spoken to her about my son once, but hasn't mentioned him since. The senior leader is disappointed that my son no longer wants to attend, and agrees with me that the group can be of great benefit to him if we can sort out this current problem. She acknowledged that the other leader doesn't seem to be dealing with things well, and commented to me that I must be getting weary of her meeting me with minor issues and non-issues. I did say that I feel this woman is moaning and that if she can't run a group without the need to speak to me about everything she doesn't like about my son, maybe she isn't the right person to run the group. I also said that she doesn't seem to approach other parents each week, and seems to be singling me out.

I was offered a copy of the complaints form, but I declined. I explained that my intention is not to get this lady into any trouble or to undermine her in any way, but to move forward in a constructive manner so that my son can enjoy the group, which I believe offers a great service on the whole. I would prefer to sort this out at a lower level of intervention of management, and will only escalate it to a formal complaint if absolutely necessary.

I did say that I felt that this lady did not understand that children like my son have a difficult family life, and also that my son was diagnosed with depression last year so this could affect his behaviour - not an excuse, but a request for a little understanding. The leader has been made aware of his particular problems, so should take his depression into qaccount and ask for help if she needs it. However, she has always reported that the group has been fine, and has only mentioned my son once, a few weeks ago.

The senior leader will speak to the other lady next week, but because of staff holidays and working two sites, it will be Thursday. I don't know whwther my son will attend YC on Wednesday yet - he says not.

The senior leader is also in the process of arranging a small group session for those children who need more input. This will be a bit more formal and will help the children to face any problems. It will run for six weeks and she will include my son. She is running it herself, along with another colleague. The senior leader is also going to speak to school about getting a mentor for my son to see each week, as she understands that it is something that will help him.

Hopefully, everything will be sorted out. I would like my son to continue going to YC, but to be comfortable going. I'd also like this member of staff to understand that her current actions are not helpful and that my son feels 'picked on' - his words, not mine. I really do believe that YC groups can be beneficial to children who have a disabled member of the family, and I would like it to be a positive experience for my son as well as the other children who attend.

I have tried to include everything and be honest - as I said, my son is no angel at times and can be moody. I also wondered if I was being over critical or unfair. So my apologies for the long posts - I wanted to include details as much as possible, to give a complete view of the situation as I see it.

Thanks to everyone who has commented and offered opinions. You have been a great support, as always. I'll post back next week and let everyone know what happens next.