Thursday, January 13, 2011

The Future Is Orange

Like most special needs parents, I have a constant worry gnawing at the back of my mind.
I worry about what will become of Bob when we get too old to look after him.
Because I'm not equipped (aka minted enough) to set up a private  fund for his care, it's become a nebulous sort of  unrest that has neither shape nor substance.

It's  hard to formulate any sort of a plan for his future as he could be pioneering NASA expeditions to Saturn, or he could be in an institution being spoon fed and watching day-time TV on a loop.
It's horribly  impossible to predict.

I don't believe his brother and sister would ever allow the latter to happen, but I also don't want them to feel so responsible for him that their own wings are clipped.
I feel very strongly that they should be allowed to live their own lives, free of guilt or an oppressive sense of duty that robs them of their own experiences.
Of course I hope they will be a big part of their brother's life, but I don't want them to ever feel resentful of him because he prevented them from following their own paths.

But because I have some tiresome defect that won't allow me to predict the future (goddamn it), I just plow on with Bob's education, cross my fingers, throw salt over my shoulder and avoid walking under ladders heaving with black cats.

Not that I'm superstitious.

But I also avoid putting new shoes on a table (that's a mad Monaghan one), moving house on a Saturday and jumping in front of buses.
Maybe the last one isn't strictly speaking a superstition, but it seems prudent to avoid it anyway.

So I just hope for the best, knowing that even though blind hope just isn't good enough, that it's all I have at the moment.

But I had a reassuring experience at the gym earlier in the week.
I was doing my thing on the cross-trainer, feeling all virtuous for working off the cake and wine legacy that has  taken squatters rights on my butt.
(I only have another million miles or so to go before I balance the scales but I was busy polishing my halo and fluffing my angel wings nonetheless.)
I noticed one of the gym instructors welcome a new client and put him through his paces with a fitness test.  The new client ( a good looking lad in his teens, not that I was looking or anything) was then taught how to use the various weights and machines, but I was only half-paying attention as I had age-inappropriate rave music belting through my iPod and I was busy pretending I was 23 with abs you could bounce rocks off.

Later, as I was using the weights, the boy came over to chat to me and it was only then that I realised he had special needs.
I had a lovely talk with him about his new year's resolutions and I had to restrain myself from secreting him in my gym bag and taking him home with me.
He was gorgeous.

I'm bowled over by the ease and acceptance with which the gym instructor met the boy.

He didn't hover anxiously around him, or speak to him very slowly in a VERY LOUD VOICE.
He treated the new client with the same courtesy and professionalism that any Normie would expect.
I would never have guessed by the gym instructor's behaviour that the boy has special needs, until I got chatting to him.

This is the future that I aspire to.
One where our special needs kids are truly treated with the respect and acceptance that they deserve.
It's just unexpected that I witnessed that in the gym, and not within an institution or organisation supposedly designed to care for people with special needs.
I guess miracles never happen in churches.

I went to the gym hoping to acquire buns of steel.
But I'll happily settle for being slightly less wobbly and a whole lot more hopeful for the future.


  1. aaaaahhhh!!! The future - that mysterious place that I never willingly look at, but that occasionally jumps out of it's box and bites me in my (much wobblier than yours)ass!!! What a lovely experience to have, though. Still won't convince me that a gym is any less than the work pf the devil! xxx

  2. ah jean, such a lovely (and hilarious) post... just what I needed to read today, thank you x

  3. Excellent post Jeannie, I just love the way you write, that sounds like a very positive experience, wouldn't it be wonderful if every member of society would be as accepting as that gym instructor, we can live in hope, on the gym thing I am with Tara they are truely the work of the devil lol

  4. This is such a huge worry for so many of us parents. I can imagine how up lifting this must have made you feel - we now just have to convert the rest of society!

  5. Jean, you really do make me laugh. I'm not thinking past tomorrow and trying to get my lil wizard on the bus without him crying. The future is a black hole and lives in Egypt along with de-nial.... On a different note.. Go you.... getting chatted up by a fit teenager. Another fab blog missus. Well done.

  6. So lovely to read a blog that leaves me with a smile on my face. I also worry very much about the future, but occasionally my special boy will do something that gives me hope. He also has a brother and sister, and I totally share your sentiments about wanting them to always be there for their brother, but to not feel that he is a burden. I'm sure they will all lead very happy and fulfilling adult lives - as will your 3 x

  7. There must be something in the ether today cos I was thinking about the future too...but not while talking to a gorgeous teenager! I think we should all go to your gym, it sounds a really fab place xx

  8. Jean - you pick up on my thoughts too. I also have moments of worry about the future for my son. And I also hope for things to improve:-)

  9. I had my fingers over my eyes and pretending that I wasn't really reading the first bit, I don't go there and script some stuff to get me through the sneaking thoughts!! I love the last bit, I do hope/expect/think (may change on any given day) that the world will become more accepting and generous towards people with special needs! Jen

  10. We could be twins from the worrying about my kid's future, to the blaring rave music on the iPod, to the SN person at the gym. In my case the SN people work at the gym and I can't help but semi-stalk them to see how they are doing. Unfortunately, my daughter does not have siblings so my worries are intensified. As much as you don't want to saddle your other children, at least they will be there in the worst case scenario. I worry so much about what will happen to Audrey after I'm gone.

  11. @ Taz, the gym IS the work of the devil, but I love it. How mad is that?
    @ Tess's mum, glad to make you smile!
    @ Andra, I'll get you and Taz into lycra yet
    @ Casdok, one small step at a time I guess...
    @ Elaine, my mojoj still seems to be working
    @ kazlizzie, thanks for that
    @ BlueSky, it's a really good spot
    @ Aspie, there must be many of us out there
    @ Jen, we must live in hope
    @ Lynn, it's a big worry we all share

  12. Such a lovely heart warming story! I really hope this was a glimpse into the future. And congrats for being at the gym! I need to go back tomorrow...
    BTW: would anyone put old shoes on a table?!

  13. Jean: I decided to turn your post into a meme and tagged myself.

  14. This is such a lovely post. It does give me hope.

    Funny how worries about our kids' future without us seem to be running rampant these days. That's what my Hopeful Parents post this past Monday was all about too. (And I wish I'd been doing my ruminating at the gym and not laying on the sofa like a lox recovering form surgery.)

    Here's the HP post: ""

  15. @ Sandrine, I'm honoured
    @ Varda, you're not the first person to say I'm heading over to check out your link

  16. It is certainly a legitimate fear to be concerned about Bob's future and how you are going to care for him because that is my worry as well. I had Griffin at 37 (late in life by the doctor's standards) and am 46 now so I do think about his future.

    Good to know that the young man was treated with great respect as anyone else would receive.

  17. Really lovely post, I too worry about the future for my son, he has mild austism but you do sit and wonder will he have a job, will he read and write, will he ever marry, have relationships, understand etc, its so hard!

  18. Lovely post Jean. Good to see such acceptance out there at a time you needed to see it the most. There were two projects on Autism by teens at the Science fair this year in the RDS..awareness and acceptance is spreading, slowly but surely ;-)

    I think Sir Bob is going to do wonderfully well :-)'s not just wanna see me purchase new shoes and try to avoid putting them on the counter!!

    xx Jazzy

  19. Like Jen, I just can't go there. I try to block it out and just ignore it for now. But the thought that something unexpected could happen to me long before my time is the scariest thought in the world to me.

    Isn't it funny how I feel the need to tell everyone my son has special needs. I want to make sure everyone around us knows. Where, in your story, it is the opposite. There is no need to tell. I like that. I like it a lot.

  20. Thanks Jean for writing many of my own thoughts! The present really is the only place to be for day! It's at night I wake up and can't go back to sleep. I can only go forward believing in experiences like yours at the gym. Expecting the best, from all my son meets on his path.

  21. This is a great post, I have to "go there" now because my daughter is 15. Things change so much as they get older that you keep hoping there is going to be a place for them and somehow, as they grow, you start to see where they may fit or paths they may be able to walk and you feel a bit better but it is still scary.

  22. Thank you for an absolutely lovely story! I actually got teary. But really it was some dust that got in my eye. That's what I told my husband when he asked me why I was crying, anyway.

  23. I think it's something we all worry about. You wouldn't be the caring mum you are if you didn't worry.

    CJ xx

  24. I'm worrying about Nipper's future and he's only 4! I'm just trying to put as much in place now to help him to be as independent as possible. Your blogpost gives me hope!