G was 15 months old when we were told he had a life-long learning disability.
When you’re told that your child will “never fully grow up” and “will never be capable of leading an independent life” it’s pretty hard to think to the future without complete dread and fear. So we didn’t! We “parked” that one and focussed on surviving each day. Let’s face it there’s enough to be getting on with and with G and two other young children to care for getting through each day was enough of a challenge in the early years!
Time went by, I adjusted to my new circumstances and like it does for all of us, life just took over. Then, when he was almost 14 we entered the phase commonly known (in our world) as Transition. This, I discovered is the time I had to take my head out of the sand and really to start think about his future as an adult and plan ahead. It’s a scary time for families. Though not quite as tough as the initial diagnosis, in my experience it comes a pretty close second in the emotional stakes and I felt as equally lost in the system as I did at the beginning.
Like most parents during this stage I didn’t know what I didn’t know. I did know however what I didn’t want for G, and I’ve decided in hindsight this is a pretty good place to start.
I knew I didn’t want him always living at home with us. I’d bumped into enough kids who had left his school, now in their 20’s who seemingly had very little to do. I’d seen them wandering around the supermarket with their parents when college finished and there was no more formal education to be had.
It was easy to believe that there was a “black hole” in adult services because I heard all about it from other parents. Many of them seemed resigned to the fact that they would always be caring for or supporting their child and their lives would get smaller, but I knew I didn’t want this for G and I was selfish enough not to want this for myself either.
My big wakeup call was a woman I saw frequently in our village. She was probably in her 70’s and she had a son in his 40’s. He went everywhere with her. She was obviously devoted to him and was doing what she thought was right. It’s easy to think that no one could possibly look after your child like you can and I don’t blame anyone for wanting to keep them safe at home with them, but I couldn’t help wondering what would happen to him when she was no longer around. I think it’s the fear of this that haunts families like mine more than anything. It’s something you try not to think about but, it’s always there.
As the years went by she became more frail and unsteady on her feet, using two sticks to walk. He became more and more bedraggled and unkempt looking. I don’t see them anymore! I wonder what happened to them and I wonder where he is and what he’s doing.
Yes, this lady and her son were my wake up call. I knew whatever happened I wanted G to be settled, safe and happy. I wanted him to be used to not having to depend on us for everything. The longer I kept him with us at home the harder I knew this would be for him and us. I didn’t want his two sisters to feel they had to take over from me either. I wanted them to have a life of their own and although I know they will always feel a sense of responsibility towards G I didn’t want them to have to deal with his day-today support. But, most of all I wanted him to have a good life!
I was lucky that I had friends who had already been through this stage, who could offer their advice and share their experiences. I heard some really inspirational stories. They showed me what was possible and helped me to dare to dream. I’ve learnt a lot over the years and as most of my work for the last few years has focussed on “transition” I also know that some of my experiences are similar to other parents.
So for all you parents out there who are approaching (or in) this stage here are a few of my tips to get you started…
- Don’t Panic – take small steps. The whole thing can be pretty overwhelming so look at the things you need to know now and park the rest for later.
- The best place to start is to learn about person centred planning. Even better do a course and learn to think and plan in a person centred way – I found this particularly useful for G as he doesn’t use words to speak but it’s equally useful for everyone else. It also helped me to see G as an individual in his own right and see things from his perspective and this really helped.
- Think about what they like doing, what they’d like to do not where they will go i.e. think about getting a life not a service. It’s hard to imagine when your child is at school that there is a life outside educational institutions and sometimes I think we are looking to swap one institution for another when what we should be looking for is an “ordinary life”
- Know their rights (and yours) – It’s a bit of a mantra of mine but knowledge really is power. I sometimes feel you need a Degree in social and health care to understand this complicated system but Community Care Lawyer, Luke Clements has written ten top tips to adult social care for carers, which is a pretty good place to start. http://www.challengingbehaviour.org.uk/cbf-resources/information-sheets/ten-top-tips.html Find out about the Mental Capacity Act and learn about what benefits they may be entitled to in their own right. (Mencap has some useful factsheets but lots of other organisations do too so get searching!)
- Do your research. Talk to lots of other parents and talk to lots of different provider organisations to get a feel for what they may be able to offer but go armed with what you and they would like. With a personal budget you need to think of yourself and your child as “consumers” the market place is growing so shop around. There is lots of information and useful websites out there to so look around for some positive stories to give you inspiration. Look outside the traditional services, be creative and don’t be afraid to dream
- Be prepared to “drive” the process yourself if the school isn’t. The process starts with schools and they sometimes only focus on education rather than the bigger picture…always keep the bigger picture in mind, you’re planning for the whole of their life not just college.
- Don’t rely on individual professionals to have all the answers – In my experience, whilst they may have the knowledge in their particular area of expertise they often don’t have the required overview you’ll need at this stage. Also, if they tell you something you think sounds wrong or unfair then check it out because it may well be.
- Don’t scare yourself listening to other parent’s bad experiences. This was their experience, it doesn’t have to be yours (and avoid watching Rosa Monckton documentaries!!) stay positive and look for the positive stories to give you inspiration.
- The following advice was given to me by another parent…When times get tough and you don’t think you’re getting anywhere you have to have resolve and persistence – Never give up – there is always a way if you stay strong and focussed. ‘No’ mustn’t mean no – it just means let’s find another way.
Well that should be enough to be getting on with. But, if you want more I wrote a guide to transition which is available on the OxFSN website www.oxfsn.org.uk it was written for Oxfordshire parents but the process is the same wherever you live. Bits of it are out of date as it was written three years ago, so we’ve got some funding to update it and this will happen soon. If you have some inspirational stories to share please get in touch. Check out some of these other great websites too. http://www.preparingforadulthood.org.uk/ http://www.transitioninfonetwork.org.uk/home1.aspx
Oh just one more thing…. Once you’ve armed yourself with all this information and, when your child reaches 18…CELEBRATE!! You’re amazing!! You’ve survived an extraordinary parenting experience, coped with things that few people have to cope with and lived to tell the tale! You’ve simply entered a new chapter in yours and their lives. Of course it will be full of challenges but then so were the last 18 years. Pour yourself a large glass of your favourite tipple, take a deep breath and meet those challenges head on, just like you always have!