Planning the Journey

Planning a future for a child with additional needs is difficult; parents face so many uncertainties. We don’t know at an early age their potential strengths. We know the future will one day arrive, and we know they will be somewhere without us, but we’re not always sure where.


It’s like planning a journey without knowing where you’re going, let alone how to get there.


This uncertainty applies to all aspects of their lives: their daily living skills; what they will be doing with their day after full time education finishes; who they will spend time with; and their financial situation.


What we need as parents is a picture in our minds of their future life. We need to be able to imagine what they will be able to do in the future and what shape their life will take. What we need is a Route Map.


When we start their lives with them, we don’t have a map or a plan or anything. So what do we do about future planning?




And that’s worse.


Because the problem of what shape their life will take is too big, we get stuck in inertia. Paralysed like the rabbit caught in the headlights. Hoping things will get better.


But hope is not a plan. We need something more. As far as is possible we need to separate the interconnected parts of their lives and think about them individually, and then how they will make up a whole. We need to break the process down and then put it back together.


Perhaps I can explain this better with the Red Giraffe Route Map.

We know there are all sorts of parts to living in a home of our own, from washing, cooking, cleaning to food preparation, shopping and budgeting. Then there’s the other things like property maintenance for when the dishwasher breaks to locking the doors at night. We have combined these skills under Daily Living, and to make it easier likened it to a train line on the Route Map. Whatever level of independence you aspire to, they will need some or nearly all of these skills. And to make it easier, we can think of these individual sets of skills as stations along the line, that they can get off at and master. They may not need to stop at every station because they can either do it or won’t ever need to be able to do it.


Let’s take that train line analogy to another aspect of their lives: what they will do with their time. It’s ok when they’re at school because school is an occupation (I say this knowing that school is often a challenge and sometimes not a positive place to be for our children, but nevertheless it does occupy 7 hours of their day). But there does come a point when full-time education finishes. Then there’s nothing unless we plan for it. If we remember our children can do and be more than we imagine, there is no reason why they shouldn’t do something with their day. While full time employment might be the ultimate station, there are other roles, or other stops, along the way that will give them a sense of purpose and meaning to their day. This could start with work experience or possibly volunteering. But this whole aspect to their life of what they will do with their day and time is worthy of an entire line in itself. This line is Purpose. 


To be utterly and completely lonely is possibly the worst human condition. I’m not suggesting that we or our children always want lots of people around us, but to share our lives with people in some way gives our lives meaning. A feeling that someone cares about us, our opinions and our being. Happiness comes from the way we believe other people regard us as much as from the things we do. A life not shared is a life in a vacuum. Fortunately day to day life, especially where we spend our day, forces us to engage with people, and this is not as easy for some as others. Added to this, interpersonal relationships are complex, varying and nuanced – you don’t talk to an relative in the same way as a shop assistant you don’t know. There are strategies, however, that can form a script of how to act in certain types of situations, which can be taught so that is why Relationships is a line in itself.


To have this ideal Life Plan, we may need to partly finance it ourselves in some way. No one ever said that having a child with additional needs should come with a financial plan, but the reality of the situation is that we probably need to, much more than other parents, think about their long-term finances and lay the foundations for many years ahead. I find my daughter is very trusting, and takes things at face value often, which means she could be financially vulnerable. This means I need to put some plans in place if she is to live in the place she wants to live when I’m no longer around to support her, and enjoy some of the things she’s been accustomed to while we’ve lived as a family unit, such as holidays. Perhaps we’re not all in the position to leave them as much as we would wish, but rather like the tortoise and hare the race is won by being slow and steady. Small aspects of planning now can make a huge difference to their long-term standard of life. It’s not complicated. It just needs thought. And that thought has to come now. Financial Security is the line that parents travel along as much if not more than their child, but it a key part of their life, long-term safety and happiness. It cannot be ignored.


And while each of these lines don’t necessarily converge, they do overlap. By holding a vision of their future in our minds it offers us the comfort they can have a good life when we are no longer around to support them. The thing we have to do, our role, is develop a Vision, and bringing this Vision into reality will be our life legacy to them.


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