Writing a blog about family life – good times and bad – has turned out to be a great comfort to Neil and his family as well as a support to other families. Read More...

Gail Hanrahan reflects on her own experiences of fighting for change and how participation and strength in numbers can make a real difference for families. Read More...

Jo, mum to Greg who has autism explains how support with accessing local leisure facilities has helped to give everyone in the family a short break when they need it most. Read More...

I’ve decided my Fairy Godmother has deserted me. I imagine that her in tray is full of requests and IOUs from me because she isn’t returning any of my calls. Read More...

Guarin has been having a difficult time of it and has had a number of days off school this year for all sorts of reasons. Read More...

Callum is now 25 kilos and lifting him has become more and more challenging. Although we have a temporary hoist in his room there is still a lot of lifting to do on a daily basis - lifting his legs, moving him to a more comfortable position, picking him up when he has been sick or ill – there’s no time to use the hoists and risk them getting covered in mess. Instead I lift Callum into his wet room. Read More...

Work! Oh gosh where do I begin to try and catch up with the mountains of paperwork, everything is really getting on top of me. My website needs updating, I have 2,000 e-mail addresses to input into a contact database and the days slip through my fingers like water. Read More...

Since Callum had his op in February, the last few months have felt like a whirlwind. I cannot put into words how tired and exhausted I am and how exasperated I feel with the whole care system. Read More...

Our bags are packed and I’m heading off to Bristol now for Callum’s operation tomorrow. My heart aches for him. I have to be strong and focused now. Read More...

I worked out that my hourly rate for looking after Callum is 57p per hour. Read More...

It seems that services for disabled children and their families are stretched to breaking point. I have asked for some help after Callum’s operation from a hospice and they haven’t got any space until June. Our local hospice has put in a crisis package that extends to two extra sessions, a total of eight hours. And Social Services have increased Direct Payments by less than one hour per day. Read More...

Callum ate loads for dinner and I was so happy as he munched into his paella and nearly a third of a cheesecake. He has put on nearly 6lbs this year which is brilliant for him. Read More...

Less than a week until Callum’s operation and the doctors told me that they were going to cancel and put it back until 15th May. Read More...

Callum hated having his brace fitted and went crazy, kicking his legs and thrashing about. But the brace is a necessity – it will enable us to manoeuvre him into standing and sitting positions so the bones don’t seize and the pain will be reduced. Read More...

I have been really touched by all the people who have been offering me help and support leading up to Callum’s operation. My friend said she would help me make Callum’s new wardrobe of Velcro, loose clothing; one of Callum’s carers said she would come to Bristol hospital one day to give me a break and my lovely Reiki ladies have said they will come and give Callum some soothing therapy before the operation. Read More...

I can’t imagine how scary Callum’s world must be sometimes. I wish I could explain to him why he has to go to all these medical appointments and why he has to go through painful operations. I find it distressing to think that he doesn’t understand that it is all to help him in his day to day life. I just would love him to know it is for his own benefit to give him a better quality of life. Read More...

We have been suffering from anti-social behavior problems where I live and I went to see our MP about it. She was genuinely concerned and has said she will look into it for us. I’m hoping that the more people I get involved, the quicker the situation will be resolved. I feel I am fighting a multitude of battles at the moment. Read More...

Callum is in really good heath right now. We have all worked really hard to keep him well and it shows in how bright and healthy he looks. Read More...

I have had a distressing night. Guarin, who is normally such a delightful, caring and well behaved boy, tonight became very angry and gave me a torrent of abuse. Read More...

This weekend I am taking Guarin go-karting, as he has been a little neglected of late. He keeps coming to me for cuddles and reassurance and one night after school, had curled up in my bed and written me a little note saying how much he loved me. Read More...

I’ve decided to write to Children’s Minister, Ed Balls, and the Minister for Work and Pensions, James Purnell, about the difficulties for parents finding childcare for their disabled children. My experiences over the last year highlight some of the barriers and obstacles that many parents with disabled children face. Read More...

Callum turned 12 the other week and, for his birthday, my friend took some lovely pictures of him and the family. Guarin loved his picture being taken but unfortunately the same couldn’t be said for Callum – he wasn’t happy at all! Read More...

After a week of being really very poorly, I’m gradually getting better and am now working flat out to sell my bags and jewellery. I’m averaging two bag parties a week which may not sound a lot but is as much as I can manage whilst also caring for Callum. Read More...

I don’t feel Callum’s respite placement is working out very well. He really doesn’t seem to cope with the change in routine and being away from Guarin and me, and everything that is familiar. Social services have said I can give up the residential social care weekends which are four nights a month and in return have £50 per night to buy in care. But I am unconvinced that £50 will be enough to get someone to look after a severely disabled child who has life-threatening fits throughout the night and is often sick and needs his bedding changed. Read More...

I’ve had another flu type virus, probably because of being run down, I’m convinced my immune system never gets enough time to fully recharge. I really have been so tired recently. Callum has taken to swiveling himself around in bed, kicking off the covers and then getting cold, so he wakes me up by banging his feet against the board at the bottom of his bed. An able bodied child would wake up and put the cover back on, but Callum can’t. It’s all these little incidents that other families have no concept of, and that contribute to parents with disabled children feeling worn out. Read More...

Guarin has been offered a short break away in Cornwall, arranged by the local Caring for Carers team at Barnardos. I’m so pleased for him and hope that he will have a fabulous time. He misses out on a lot and I think a break away with other children in similar situations will be a real treat for him. Read More...

Today I had a letter from the Post Office and they will compensate me for the mail shot that went so horribly wrong. It’s great news, because I spent a lot of money on it and to have it messed up was really depressing. Read More...

I was thinking about my stress levels today and there is a tier of stress that I think parents with disabled and sick children are under. Read More...

Callum had a terrible night, he was sick again all over his bed so it needed stripping and re-making at 3.30am. It took me 30 minutes to sort him out so I was wide awake and found it hard to get back to sleep. The rest of the day I have felt tired and a bit touchy. Read More...

I’m reflecting on what the Doctor said about Callum during the hospital appointment. Oh boy what a terrible time he will have. Because of his Cerebral Palsy his left leg is subfluxing - this means that his hip is coming out of the socket. X-rays show that it is already 55% out and without an operation he would be unable to move his legs without severe pain so there is no option. Read More...

Callum went to Bristol hospital today with an appointment time of 3.45pm but we didn’t see the doctor till 5.15pm. It was really stressful waiting around, as unlike other kids Callum couldn’t really get out and play so he was stuck in his wheelchair frustrated and angry I guess. Read More...

Today I woke up to find my car had been vandalized - thick white gloss paint was all over the back of it and on the drive. I have spent the day seeing police and giving a statement. Read More...

I haven’t been doing this blog lately as so many other things have taken over. Sometimes I feel like I’m just hanging on by my fingertips. Read More...