I held off getting a motability car as I thought the rules were too onerous and I would just break them. However, since going through the process of getting one it seems clear that it is accepted that the car is likely to be used as the main family car, whatever the journey and whoever the passengers. I do justify it to myself now that DS is not here most of the time because we have to travel further to see/collect/drop him and use it with him 100% when he is home. I will worry about the changes to the rules when they come, I think we have been extremely lucky to get what we have in the meantime.
How well I remember thinking that DS would never go to residential, just the thought of it made me cry as no-one could look after him, and more importantly love him, like us. Looking back I can see that it was a process for us. Our first step was trying medication, having tolerated and managed his tantrums and violence and got to the point where it clearly wasn't working. Risperidone worked like magic, he continues to take it, and I am sure it kept him at home longer than he otherwise would have been.
The next step was respite. We got to a point where we no longer wanted people coming to our home, that was fine when he was younger, but we wanted him to be able to stay away from home somewhere safe where he was happy and that had good facilities. DD was also a toddler then and we couldn't do anything with her and she was beginning to feel it. People always say that the siblings "know no different" but she certainly knew that her friends did not live like we did, no freedom, no holidays, no spontaneity, few visitors, Christmas alone. We got one weekend (2 nights) respite a month per year for a couple of years. It was bloody fantastic! And, again, I'm sure kept him with us for longer than he otherwise would have been. We'd always had problems with him at home, destroying the garden, sleep issues, unable to fill his "leisure" time in any way and with very limited facilities and space in our urban home with tiny garden. But things had always been good at school so it worked. Then he went through a very bad phase, I think it was a regression, where he couldn't even go to the things he enjoyed, everything was a challenge to him, even the simplest things. He started touching everything which turned into tapping, then hitting. Our best carer couldn't take him out any more and nor could I, and I'd always been able to get him to do what I wanted, even when he was upset and didn't want to. And school called us in because they felt they couldn't meet his needs. I can't fault the school as they bent over backwards to help him but it just wasn't working, he needed more.
Our Paediatrician had talked to us over the years, very gently, about residential at some point, so we had his support and he was a big noise in the borough and was listened to. DD is 7.5 years younger than DS so that was another issue. She couldn't have friends round after school as he'd be running around naked and wiping poo as he went, we couldn't go to the park with other kids after school or do anything spontaneously as we had to be home for DS's school bus. Plus my health was suffering and we worried about the age gap between a teenage boy and a younger sister and all that might entail. So we started to think about DS's needs and the reality was that he needed more space, better facilities, more structure, able carers etc. It has turned out to be the best thing we did for him primarily, but also for all of us. Mind you, we were very certain that it was the right thing to do and he goes to a fantastic school that is not too far away so we had NO GUILT. We do miss him but we do not feel guilty. He started when he was 12.5 years old on a termly basis for 44 week per year. I strongly recommend going for termly as you can have them home any weekend you like that way but also have weekends for the rest of the family. We now have holidays and, instead of worrying about him not coming away on holiday with us, we see his visits home as his holiday when he gets spoilt and pampered. My other big recommendation is to seek LAC (Looked After Child) status for your child. I know a lot of people react against that term but, in my experience, it has been only good. We have retained Parental Responsibility but, being LAC, there are a lot more controls and responsibilities on the Local Authority. We have a lot more opportunities to discuss how things are going with regular LAC reviews, his Social Worker (and we have a named one) has to visit him on a regular basis and, I believe, DS has more rights one he becomes an adult, having been LAC.
We went to visit him yesterday because I have been very unwell over the summer so literally could not have him home and we are now working up to getting back to "normal". The school were fantastic in keeping him there, looking after him and having a proper, planned schedule of holiday activities and outings. When we visited yesterday, as always, it reminded us how good it is for him with lots of space, great facilities and excellent staff. The staff are amazing, not only because of the job they do, but because they do really care about the kids and a lot of them tell me regularly how much they enjoy being with DS and how well they think of him and KNOW him as an individual. We cannot offer DS anything like the environment he needs as a big, growing teenage boy.
I suppose my last word is that DS went to residential school at a point when DD still loved him and we decided that we didn't want to wait until she didn't iyswim.
