Friday, 2 June 2017

Dare I think about my autistic son's future?

Dare I think about my autistic son's future? David looks through a fence

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.

David looking out in a park

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.

16 comments:

  1. Such a tough situation to be in lovely and I can only imagine how you must feel (although you have done a great job in helping with that by articulating it so well). I've seen a lot of autistic adults learn to live independently through my parents work, and through structure, routine and coping strategies it's amazing how positive the future can be - you just need to get the right help along the way, and no doubt that is the challenge. Xxx

    Thanks for sharing with #coolmumclub

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  2. I can feel your uncertainty and your shock in this post. The reality of what "might" be can be confronting. I did grieve for my kids' diagnosis but I believe we go through different levels of acceptance over time. This might just represent another level of acceptance for you. I know I'm still going through them and my boy is 13! With the beginning of high school, I've questioned his future too. He is academically capable (with the right supports) but I'm not sure he will be able to emotionally and mentally withstand the pressures of high school. I worry that he will not be able to cope with the rigours of work and I genuinely worry about whether he will be able to live independently down the track. What helps me is to focus on the certainties and try to leave the unknowns until they become known. So much easier to say than do! But you'll know when you find the right setting for David - you'll feel confident and inspired rather than scared and cautious. Good luck with it x

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  3. Hi Ann, my son is twenty and I still try to take things one day at a time as looking at the bigger picture means facing the fact that we are out of our depths and are unequipped to offer our son the help and support he needs for an independent or even a semi independent life. I also find myself telling myself that we don't know what the future holds for any of our children, not really.

    I hope that your thoughts rally round to the more positive again soon, and you can push those feelings of being out of your depth to the back of your mind. Whatever the future holds for your son will happen and you know that you have done everything you could possibly do to help him to be the best he can be and a little more. Time will tell with regards to what that life will hold.

    Thank you for linking up with the #MMBC.

    XX

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  4. it really is a difficult situation isn't it? As a mother to 5, one with profound learning difficulties and in a care home and the another who requires educational support we've sort of just got on with life. For the 3 middle 3 i had expectations that they'd leave school, get a job, home, girlfriends and live their lives, i assumed the youngest would follow suit, however he leaves school in 2 weeks and the reality that he will need far more support to transition into the adult world has just hit home in a big way. I will be in the UK next week to help with this next stage but it now looks like i may have to be there for quite a while to iron out and put a lot more support in place than i have had to do for his 3 older siblings
    #spectrumsunday

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  5. My eldest is 29. He went to a special secondary school but they were good with education and he left with a handful of GCSE's Then he went to a special collage where he learnt some extra skills, like cooking, meteorology, basket weaving and glass blowing! They may not be your usual subjects but he chose them and was so happy there until he was nearly 20. Then he went to collage (I had to take him and pick him up every day but it was a regular collage) and he did 3 year of an accountancy qualification. He needed one more year to complete it but it involved work experience and that's where he failed every interview until he gave up. I've never pushed or forced him into anything, I've let him lead the way. Trying to get him to do something he doesn't want to doesn't work. He doesn't talk to strangers, sometimes he doesn't talk to us! He doesn't do anything much now other than sit at his computer. I had him take up some mental health therapy but they decided he was happy in what he does. I'm sorry for going on, but I thought you might find it useful to see how my autistic child has grown up. It's a struggle to get him to leave the house, but sometimes he initiates outings ( he likes to go swimming occasionally, or to the park with the younger ones) I have learnt that you can't plan anything. I was so proud of him when he was doing his Accountancy and so disappointed when he didn't finish it, but at the end of the day it's whatever makes him happy, because when he's not happy everyone knows. He's 6ft 2" and very well built but still has the type of meltdowns you expect from a small child. Adulthood is hard enough without having expectations put on you. If I had my way, he'd be working, married and giving me grandkids by now, but I can deal with not having that so long as he's happy with his life. I have to realise that his 'happy' does not actually have to be what I consider to be 'happy.' xx p.s. I also have an autistic 11 yr old girl.

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    1. sorry, that sounds like a proper ramble, but I hope you understand. I'm sure your kids will be happy whatever happens so long as they have the love and support of their mother xx

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    2. Rambling is completely allowed. And, absolutely, at the end it's got to be about my kids happiness, whatever form that takes. Sometimes David is the happiest of us perhaps because he lives in the experience he is having. Thanks so much for your comment Anne http://www.rainbowsaretoobeautiful.com/2017/05/thoughts-on-our-happiness.html

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  6. This must be such a difficult position to be in with such a hard choice to make. I know you'll make the best choice for you and your family. Just trust your instinct and make the decision when you're ready! #bigpinklink

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  7. You will make the right decision. One thing you have over a majority of parents is that you care. I see too many parents who don't care, don't worry about the future. Most schools help children learn vital life skills and help them to become a bit more independent

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  8. Such a difficult decision as a parent you feel so responsible for making the right one!
    We looked at mainstream and special schools for EJ when she was due to start reception and it became clear to me at that point that there was no way mainstream was a long term solution (she has PLMD), but the special school we saw just totally underwhelmed me and floored me for a time. Not a bad school, and it had all the right facilities on paper, but it just felt unschoollike (if that make sense?). We decided to see another couple of special schools and found the one with a completely different vibe. We loved it (and she loves it - she's now been there almost 2 years)! It's definitely worth looking around all you can xxx #PostsFromTheHeart

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  9. I think lots of parents will relate to this. The future is hard. As a secondary teacher I see a lot of pRents find it really hard when they come and look and see what 19 looks like. Take one year at a time. If the age group that is right for him now is right, I would focus on that. #PostsFromTheHeart

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  10. As you say, you don't need to be a parent of a special needs child to worry about their future. I have 2 adopted sons, one is on the Spectrum, we are still waiting for a full diagnosis and CAMHS assessment. He is only 8 and I already worry about his next school, his future jobs, future friends if any. School is pushing for EHCP, Social workers think it's not a good idea - so we just wait and wait while he gets older and the gap (as you said) widens even between him and his younger brother. :( Thanks for your post, I don't have any wisodm for you, except that I hear you! #SpectrumSunday

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  11. I tell people I can only take one day at a time, thinking about the future seems impossible to me at times, I tend to worry as soon as my mind wanders into the future and I drag it back. We've enough on our plates struggling to get our children the provision they need now...maybe that's the answer? Maybe we're making our children's future right here, right now. You can't build a house without the foundations xxx

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  12. Sometimes I panic about the future of my own kids. My eldest has a developmental disorder which we have been told will get progressively worse. At this stage, she is doing so well, but sometimes I catch myself panicking about how things will change and what abilities she will lose. I have to just grab hold of myself and force myself to live in the present and take each day as it comes. It's at moments of big change that these sorts of fears surface, though. I hope that you find somewhere that can really help and support your son #brillblogposts

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  13. Ahh a lovely, lovely post. You are right about laying each brick to create a foundation. This is for all children. It's just that your son's foundation may take a little longer to achieve but that's ok. He will get there I'm sure. He has a lovely mummy to help, worry and care for him. The future can change and as children grow, their future may be different to the ones we expected but that's parenthood. Good luck my lovely. #brilliantblogposts

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  14. I think that the way that you explain your point of view here is the best way that you can think about it. There is no "could have been" when it comes to a child's future. Every little one is different and will grow up to be a different adult. Love your son for who he is and what he is capable of. There is nothing to not be thankful for! <3 #brillblogposts

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

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