Some things have definitely changed in my relationship with my son as he has grown up. I have found life much more difficult since he reached 21 and was no longer offered education.
We had talked about him getting a work placement, but when he was sent to the assessment centre he failed to reach work standards. At the time I wasn't too upset about this, though, as I felt he was not capable of the work they were looking at for him.
Moving into adult services was not an easy task. There were no placements available, so I had to give up work to care for him on a daily basis. We asked for direct payments, but we were refused because they felt he did not meet the criteria. Finally, the only option we were given was a day centre.
At the time this affected me badly, as once again I had to give up my life to care. It also made things difficult for the rest of the family as I could not earn a wage and we had to do without things like holidays, which we just could not afford. It is only now that my son is 27 that we've started thinking about going away again, as it just hasn't been a priority. My daughter was also affected by the situation - she went to university at this time, and we could not help her financially as much as other parents.
In the end, with the support of our son's respite provision and a fantastic key worker, we decided to fight the system.
In the end, with the support of our son's respite provision and a fantastic key worker, we decided to fight the system. As a result, we were able to access an independent day service that gave him more choices. Up to 2 years ago he also had a fantastic respite package of 10 weeks per year. However, in the last 2 years the county council has reduced the beds from 41 to 15 and closed 2 respite homes. Since May 2007 we have had no breaks at all.
My son did move out at one stage and lived independently for 18 months. This was the most stressful time of my life. I spoke to him more in this period than I did when he was living at home, as he would call constantly about all the things that were going wrong. He did not get enough money to live on, he was bullied and the support provided by the care agency was totally unsuitable - they let him down badly, and at this time they were not monitored by the local authority. In the end he came home to live with us and has decided to stay.
Throughout this period it was hard to find out who was who and who we should be talking to. We had a lot of help from our son's college tutor and from his respite provision but the transition to adult services was horrendous. We received no information about funding from the local authority, and no training in person-centred planning. When my son turned 18 I was told nothing and ended up losing out. I had to fight to get the lower rate of mobility, which they'd refused for my son - they felt he did not qualify as he was able to walk. It was only through constant challenges with the Disability Living Allowance that we finally received lower rate mobility.
When it came to thinking about jobs, we mainly received support from the key worker at our son's respite unit - we didn't get any help from Connexions. I work with advocacy organisations, so I have been offered services whenever I've needed them - but I know this is not the case for others. As a mum, I have not received much information at all.
We now have boundaries where we cannot do things as husband and wife, as one of us has to support our son.
Although I try not to let relationships within the family change, things are still difficult. We now have boundaries where we cannot do things as husband and wife, as one of us has to support our son. Even if we just want to go for a meal we have to get someone to sit in with him, or we have to take him along with us, which does not allow us to talk as our son likes to do all the talking. My daughter has always felt second best, as her brother's needs have to take priority. In the transitional period she was taking her ‘A' levels, but she dropped out of some of them because of the pressures at home.
My husband I have never had the luxury of support from our parents, and neither of us have any family as such, so we are basically on our own, except for council services. We do have our daughter, although I do not like to pressure her into supporting her brother as she already does more than her fair share without being asked. We do have family friends, my work colleagues and quite a few people from our son's services that give him lots of support though.
As a family, we just take life with our son day by day and work things out as they happen. Our experiences as a family have made me determined to fight the system and get everything I can though. I have been involved in campaigning against the closures and cuts to services - I'm still fighting the battle. We're also looking at going ‘In Control' in April, when our local authority starts the process. However, in reality my son is possibly not in control of anything and that is how he likes it - he chooses not to be in control, he says just ask my Mum! I sometimes wish I lived in his world.
Advocacy: the process of supporting people to communicate what they want to say.
Direct payments: in some cases, individuals may be able to receive support for their local council as cash, allowing them to choose the services they want for themselves.
In Control: a programme to help people take control of their own money.
Person-centred planning: an approach that involves listening to what someone wants from life and helping them to achieve it.
Respite: allows you as a parent to take a break from your role as a carer.
Disability Living Allowance (DLA): a benefit for people who need help with personal care or who have walking difficulties.