Hey, new here

Hi just saying hello really, I care for my son who has a couple of long term health conditions. He is 14 and previously had cancer. We have many hospital appointments, lots of anxious waits for various test results constantly, I seem to spend most days on the phone trying to sort appointments, chase prescriptions, you know the usual stuff that goes with the territory! He didn’t attend school much, he has absd so done with us sent home, GCSEs fast approaching and I’m under pressure to keep him finishing his homework, classwork, so he didn’t fall behind but school know he’s already behind and not much is being done to help despite council education either becoming involved etc lots of meetings to add to the many medical appointments!
I’m a single parent and I also have a 17 year old daughter who is under camhs again. Don’t have a big support network and live in a small rural village so feels very cut off and isolated a lot of the time. My son’s dad doesn’t see him, since my son was about 6. Went through a long horrible court process, visitation order etc but he still stopped seeing him, settled down and started a new family, bought a house and advanced in his career. My daughter’s dad, well we managed to find him last year, they met, hit it off and she was so happy, and he’s never spoken to her again since, missed her birthday and has gone back to not bothering (which hasn’t helped her mental health).
Sorry for the long post. Have some lonely days when it feels like it’s just us battling through each day! Crying in the shower sometimes helps doesn’t it :slight_smile: I dream of relocating my little family to a coastal town away from where we are, I think in my mind I’d just like to escape all the stress we go through and the illnesses my son has and what he has to go through (knowing I can’t help him!) and seeing my daughter’s depression getting a grip of her, but I know all that would follow us wherever we go (I’d still love to do it though!)
Anyway, long hello… Hope you are all doing ok and would be nice to talk on here with others. I’m not always negative, some days things just seen to pile up more than other days don’t they, today is just another one of those days xxx

Sorry just seen all my typos. *Ebsa emotional based school avoidance… And he’s still enrolled at school. I’ve been caring since 2008 but we’ve had some difficult times lately with new diagnosis’s and other things so just wanted some kind of support because I don’t want to feel as rubbish and alone as I have before x

Hi Lucy, welcome to the forum.

Forget about moving to a coastal town, I live near Bournemouth and here services are mainly geared to the elderly, some of the highest proportions in the country, God’s Waiting Room or Costa Geriatrica!!! This is the area where Macarthy and Stone began.

Have you ever heard of an organisation called IPSEA?
They are the experts in special education issues.
Very helpful when my brain damaged son needed help to get the right school.
Might be worth talking to them. Too many councils are less than helpful.

Hi Lucy

Welcome to the forum.
So sorry to hear what you are all going through and without much support from people who should be playing their part.

Please copy and paste your post into the Carers UK help email for help and guidance.
Especially to ensure you are getting all that you are entitled to for each and all of you and to find support groups if you haven’t already.

I appreciate with your son it must be especially tough as he goes through adolescence and not being able to have some or all of the rights of passage. Are you in any forums that could be helpful in this sense? Carers UK helpline may be able to suggest some.

Carers UK information and support
Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

Keep checking back for replies tomorrow as well.

Thankyou for your replies and the welcomes, I’m not too sure how to reply individually sorry. Oh bowlingbun that’s put me off a little, I appreciate your honesty though! maybe we’ll head inland slightly nearer to a city so we might not be as far too escape to the sea. It’s selfish of me but I feel at peace the coast whatever the weather and the sea air is good for my son’s lungs. My daughter just wants to escape to anywhere for a fresh start! I haven’t heard of IPSEA, but I will be googling it. it’s great that they helped your son get into the right school. I was told mine should be in a community hospital school but they refused him. You’re totally right about the council’s, the woman from lincs council attended one meeting and that was it. nothing was put into place so we just face the same turmoil each day, it’s like groundhog day. Thankyou for your advise I will be looking into that :slight_smile:
Thanks Breezy, I will copy and paste my first post and get in contact with carers UK. I honestly don’t know why I didn’t do this sooner, I don’t think I’ve liked to face the reality of it maybe, and I still don’t but I don’t want to go it alone ( I know I’m not alone because i have my children, but certain things are better talked about with others… Not sure exactly what but just know I’ve held a lot in when I’ve wished I could chat with anyone who might even slightly understand) support groups would be great for this.
I try to have my son experience what his friends do, he isn’t always well enough but he managed a sleepover at a friend’s in August, had to skip the first part of the party which was lake swimming in an outdoor obstacle course kind of thing.
Anyway, I appreciate you both taking time out of your evenings to reply to my post, thankyou. And sorry for any daft typos again! x

No worries Lucy.
You aren’t alone, you are here.

Seasides can so easily be romanticised and then a big disappointment to people who make the move.
Yet for others it is the best thing they have ever done.

Like any town or village they are liable to change for the better or worse in terms of problems and facilities. Blackpool and Brighton are absolute opposites to Bournemouth, there are some very sleepy coastal towns and villages and some that are very problematical or ghost towns in winter because they are mostly holiday lets now and some that are in danger of crumbling into the sea.

The main thing is your son’s support system, if it is great and his friends too then how would it be for him to move and be a strange with no guarantee of friends and support system there? Your daughter will soon be 18, she is already at an age to join the armed forces and soon she can work on cruise ships, go abroad to work, take up nursing, go to uni, the world is her oyster. However if she is a homegirl type then understandable if she wants a fresh start elsewhere.

Perhaps try homeschooling. Nice to meet you too and welcome.

None of my parents are disabled, and they are my support system. I’m a physically disabled person who is currently aged 26 right now but nearly 27 who lives alone with her dog. My still working parents do help me out from time to time but they both like to have their own lives as well. In the slow process of adopting my first ever child, the time has now come for me to do so.
Prayers are being said for your family. That cannot be easy on the pair of you however. I know the pain of chasing up the hospital doctors for answers to my questions. It sucks seriously. I find that it helps me to cope if I start taking notes. It must be hard but try making new friends again slowly.

Sorry I’m confused with your post.
You are in the process of adopting a child?

Thanks again Breezy for your reply. I hope things are ok with you? I meant to get on here sooner to reply but there hasn’t been the right moment to just stop and collect my thoughts for long enough, busy week but in a good way really as was a great week for school as son managed four near enough full days in :slight_smile: Yes, the fact he has his friends (and he’s close to GCSEs) is the main reason for not going anywhere quite yet, I don’t want to uproot him when he’s gotta little bit of stability in that way, I suppose you’d call it. I feel like I’ve missed opportunities to go in the past, at the time it felt like there was always a reason to not move away and now I regret that we didn’t do it when things were so much simpler to how they are now! Never really thought about how things could change so much, I don’t think I wanted to think about it! My daughter had made plans to travel to America, meet her friend who lives in Texas, perhaps study there but her mental health since went in a downward spiral. she left sixth form last year where she was studying first year of A levels, changed over to college to do a totally different course but something she’d always had a love of (animal care) and it was around this time her mental health and mood got pretty bad/low. College un-enrolled (?) her ( she didn’t feel able to face going in her anxiety was through the roof) and previous eating disorder a few years ago I feel is lurking because of her low mood/depression/anxiety, so I will be relieved when she has her first camhs appointment in a few weeks, it feels like it’s taking forever to come around and I’m wishing the days away :confused: she’s starting a YMCA course soon where she will only need to go in twice a week for a couple of hours, tiny class sizes and it’s for teens who have similar reasons for not being able to face busy college environments apparently. The staff there tell me that they’ve had great feedback from students and it’s built their confidence up. I shouldn’t but I know deep down I’m pinning my hopes on this really helping her along with camhs & me and her family (brother, maternal grandparents). So my daughter’s mental health is another reason for holding off on a move, I know that camhs will hopefully help her (they helped her before with eating disorder recovery) and I have no idea what other areas of the UK are like for being able to access this kind of support but I’ve read it’s very difficult and virtually impossible to in some places. So I won’t be rushing into things but eventually it would be nice… We haven’t narrowed down any particular areas but I always home in on Cardiff area… Ticks lots of boxes but have never even been to that city so we’ll have to explore the area, love South Wales though.

Hi Thara, thankyou for the welcome and reply :slight_smile: that’s amazing that you are planning on adopting, I wish you lots of luck and hope that everything goes well. It’s good that your parents can help support you when you need them to and dogs are just amazing (dog/animal lovers here!). I used to keep a diary with all the various notes and conversation key points etc between doctors and me etc but now I get a big calender with bigger writing sections in each day, so I just scribble notes (quite small!) in these, I find it easier as it’s always in the kitchen on hand and I can quickly glance at it. I did think about homeschooling when things were really bad with trying to get into school. On those days we went through work sheets we’d found online and the work provided by school online, it was a struggle. I’ve read that you should to ‘de school’ or similar? My son became very frustrated and could only manage 10 minutes of study, it was stressful for us both but I think the fact that it’s me who makes him do all his physiotherapy/nebulizers with him 2/3 times a day (he doesn’t like doing it but he has to), putting his diabetic ports/sensors on (same again with not wanting to apply them), I think it was too much of ‘me’ for him to deal with. And I, hands up, found it difficult getting him to focus but knowing it was down to me to make sure he was focusing and learning. I can see how well it works for some kids though, during lockdown my daughter was just loving being able to study in her own way, in her own time, she really enjoyed it, more so than being in school (her mental health was good at this point) but they are very much ‘chalk and cheese’!

Meant to add, making new friends would be nice but I’m certain it’s easier said than done. The lack of time and the different outlook I feel I have now maybe complicates it. Niggly things that used to wind me up, just don’t anymore. Things that used to seem problematic usually have an easy fix, things that used to bother me don’t anymore because if its not health related, there’ll be some kind of solution and it’s not worth a great deal of worry! I have a couple of friends and we stay in contact over the phone mainly although they don’t live far away only forty minutes drive away. Another is in Australia and I really miss her and her daughter. The fact is, and I feel like a horrible person/friend for admitting this, I struggle to connect with them. I don’t know if this is because of what we’ve been through as a family, seeing my son so ill, his health deteriorate, my daughter’s struggles with her mental health ( I know so many people have mental health problems, I have anxiety which probably doesn’t help my overthinking this!) I just have difficulty in relating to the few friends here that I do have. I sometimes wonder if it’s just me because like I say, what we’ve been through and go through etc, or if it’s a common carer feeling but I read some of the posts on here and I think it must just be me! I used to have more in common with my friends but I think as my son’s health has changed, I just feel like I can’t relate to the majority of things they talk about, and yes it probably does make me a bad person but the problems they rant about to me like their decorator bodging up decorating their new kitchen, I just wonder how anyone has so few problems in life can find this to be the most terrible thing to happen. Which probably is a judgemental thing for me to think, but it’s the truth. I think most people going through life and ask it throws at them would likely give anything to have a crap paint job in their kitchen as being their biggest worry. I stopped sharing stuff that’s going on with us, because the times that I did the response I used to get was, everything will be fine stop worrying… etc. I get that people don’t know what to say, I lost contact with other friends when my son was diagnosed with cancer, they’d walk the other way to school and avoid me the few times I was able to drop off my daughter to infant school when I had my son well enough to be off the ward and with me. But at that time, just a hug would have been enough, not finding the right words, I don’t think really there are the ‘right’ words? I just think all of what has happened has changed me, and I think it’s why I want to eventually move away, and I look forward to us doing that. Sorry for rant.

No, it’s not just you. My son is 43, has severe learning difficulties, brain damaged at birth, but that wasn’t diagnosed for years. In the meantime, I was labelled a bad mother.

(No one ever noticed my perfectly behaved eldest son who exceeded all his milestones).

My youngest was very hyperactive when he was small, expelled from the normal playgroup, then special needs playgroup. None of the people at the mother and toddler playgroup wanted to keep in touch. I became more and more depressed, when I was introduced with the wrong Christian name I was so low I didn’t even bother to correct them.

I was very lonely. Things looked up when my son started primary school, in a special class. The teacher soon realised that I was not the problem. On the first day of Autumn term, when he was 6, I took him to school. She ordered me to go home, and go to bed. To forget the ironing etc.etc., to go to bed. I was utterly exhausted, this was the first time anyone really saw me as a person in need of help since my son was born.

Three years later I had my confidence back, led a special needs charity, then went on to do an Honours degree in Business Studies. I had found “me” again. I have few friends, mostly people who themselves have a child with special needs. We all feel the same. My closest friend and I have been friends since we were 12. Her priorities are so different from mine. I’d just be overjoyed if my son could read 20 words. Neither set of grandparents would care for him overnight, I never had a proper holiday in 16 years. My health was ruined forever, and my son became a boarder at school, then a farm college. So sad.


Even though I have mobility issues I had the same age old issue. I ended up getting Milo my beloved dog purely out of desperation in order to get out and about on my own. At parties I have to sit down after a hour to talk to others safely. But I still love life. It has certainly been so tricky to find a good local care company so I am now considering other options. Like a personal assistant, or a full time live in carer instead.

I can understand what you are currently feeling. Simulation is so important. I tell my own cognitively disabled mother this all the time. Find a effective way to make new friends. Visit a free library in town, or attend more social events. Good luck. Even if it is just a hour to play a nice game of something that counts too. Seriously. I started going to my closest library more often these days to see different people and talk to them about literature.