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.
Hmmm.
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) 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 behavior 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 organization supposedly designed to care for people with special needs.
I guess miracles never happen in churches.
Imagine.
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.
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Comments (3)
Hopeful for the future. I'd like a little of that myself.
My autistic son, Brandon is thirty-eight. I know exactly what you are talking about. So let me share this information with you. My son could not tie his shoes until he was fifteen. He could not make a friend no matter how hard he tried. He had great difficulty with balance and with his fine and gross motor skills. The way he spoke was odd the words flew out of his mouth in a strange order. I didn't know what would happen to my son when he would grow up. Yes, it played heavy on my mind. Although Brandon still has many limitations it didn't stop him from living his dream of independence. Brandon has been living on his own for the past thirteen year enjoying his independence. We continue to stay focused on what Brandon can do not on what he cannot do. But the biggest surprise for me is even with all his limitations he has the determination of a winner and I believe that is reason for his success. We just never know what the future brings for anyone. There is HOPE!
I have the same worry as you. My son, Lucas, is 14 and an only child. Up till July 2009, I've worked all of my adult life. Then, I decided to take some time off work (was very burned out) and be a full-time stayhome mom for the rest of the year. Throughout that period, I've always told myself that I will return to work in 2010, as I needed to make sure my son is financially secure when we are no longer around to provide for him. We are not rich, but comfortable. If it wasn't for Lucas' provision, I could probably afford to stay home for the rest of my life.
So, I did return to work in May 2010 and was miserable throughout the 6 months I was employed. To cut a long story short, I realized that while I may not be able to provide financially for Lucas by staying home, I can provide for him emotionally & developmentally, as he has improved significantly since I first stopped work.
Today, I 'work' from home, running an online store that I launched in January 2011, and write freelance. Money-wise, we will have to be careful and invest wisely. But no amount
of money can replace whatever steps Lucas makes to become independent.