Dare I think about my autistic son's future?

We are thinking that our son may need a different school.  I imagine all parents consider how to get their kids the best education, whether that's your nearest school, one of your local maintained schools, an independent school, home schooling or something else.  Our boys have additional needs and we consider their education just as important as we do for our daughter.  We want them all to have the best opportunities now so they still have the best opportunities in the future.  But sometimes, that future is blurry, unknown, perhaps even unexpected.

When a child needs extra help at school, beyond that which a school can offer as part of it's pre-existing SEN (Special Educational Needs) budget, that child can be assessed for an Education Health and Care Plan or EHCP.  This legal document (or at least parts of it are) lays out the child's strengths and challenges, what special educational needs they have and how this can be delivered.  It could be through extra help or services at school, extra support, a special unit or another school.

Our middle son, David, has had one of these legal documents since he was four years old.  He's been in specialist education since he started pre-school.  He is now six years old and although has made great progress, he functions at the level of a child half his age.

And we've been wondering if he needs a more intensive school that could help him progress better or faster. Typically gaps between kids with additional needs and those without get greater over time, not less, so we want to give David the best opportunity to grow educationally, emotionally, independently.

But what I've discovered surprised me.  Turns out I was not ready to really think about David's future.

I went to see another school for David to go to.  One of the advantages was that it was for 5-19 year olds.  David could potentially stay there throughout his education.  As an autistic child, routines could be kept the same throughout his school life.  I thought this would be great - it was a tick in the box. Until, I am ashamed to say, I saw it.

We take so much of the boys on a day by day basis.  It's hard to know how any child will grow, but for most kids there is at least a sort of pattern; go to school, go to secondary school, get some sort of qualification and hopefully go off to find some job and independent life. It's a real possibly that this isn't going to be the case for David..... any of it.

And this was never more obvious than when I went to this school that ticked all the boxes on paper and saw the potential reality for my son.  And I felt like all the uncertainty for his future slapped me in the face.

I saw a range of ages with a range of abilities. It was nothing unusual and the school was doing a good job with many of the children there.  Some were having a difficult day, and that's normal too.  I volunteer at a local disabled children's charity, so I'm familiar with quite a few children on the autistic spectrum and with other conditions too. These kids and their parents are some of my closest friends.  But when I was walking through this new school I wasn't thinking about my friends and their kids.  I was thinking about mine. And I found this quite unsettling.

I didn't know how to match what I saw, a potential reality for my son's future, with the potential aspirations I had for him in my head.  I think the real difficulty was that I hadn't thought about what he could 'look' like to someone viewing him in a classroom when he is 10 years old, but still functioning like someone who was just five. And suddenly I was thinking about what he might not achieve, what he might not be able to do, how he might not be able to live.

There is a difficulty in facing the reality for some kids.   Not knowing how their future will be.  It's scary not knowing if they will be able to live by themselves, care for themselves.  Scary thinking about what might happen when you're not there anymore.

I happened to catch the end of a Transition Event a few weeks ago which looked at discussing and debating the future for young adults with additional needs.  And despite David being a long way off this transition, it brought back some of the same feelings I had when I visited the school.

Some people say when they receive a disability diagnosis for their child, that they 'grieve' for the child they thought they would have.  I never really did this. I've always just taken the kids as they are. I wondered if this was how I was feeling about David's future.  I thought I might be grieving for a future he may not have and I didn't want to see it. But now I'm now so sure.

I think it's actually back to that old adage... it's the fear of the unknown. I've always been very proud of all my kids and I've never shied away from any of the boys diagnoses.  But I think what I struggle with most is that I simply don't know how, David in particular, will progress. I feel unprepared and uneasy.  I feel out of my depth. How can I lay the ground work when I don't know what we are building?

But surely this is a truth for many of us?  None of us really know what's going to happen do we? And perhaps that's why our family lead a 'take it as it comes' type lifestyle. Where in many ways I suppose we spend time laying foundations.  Get the EHCP and then see how it goes.  Go the playground and... see how it goes.

Even if we don't know what we are building, most foundations need the same sort of things.  And we'll continue to lay them, one brick at a time.  Then maybe when we have a better idea of what things are going to look like, I can have another look at what we need to do to get the kids there.