So the last couple of days have delivered me some razor-nailed prods to the happy little bubble that I like to hang out in, and that rather shiny bubble is looking ominously ready to pop. The first reality check come from an appointment I had with Elliot yesterday, but in order to explain that properly I'm going to have to do big, grown up things like actually admit to
myself you what has been going on for the past 6 months. I will have to take my fingers out of my ears and stop "la, la, laaaaaa"'ing first though, so just bear with me while I process information and perhaps stop pouting long enough to jot things down.
The other appointment, which I was relaxed to the point of being dismissive of, was with the local wheelchair service. We have been having these farcical meetings with them ever since Dominic was teeny. As he got old enough for a wheelchair, so the comedy appointments began as they kept putting him in the same chair that everyone knew was unsuitable and turned a few bolts and shrugged a bit. To spice things up they occasionally lost a whole chair, or just a spoke guard or two, but generally admitted, off the record, that they would never be able to find a chair that was right for him as they were only allowed to offer a choice of two, and they were both useless (for him).
The local authority is meant to take care of children like Dominic and provide them with suitable means to get around, and for the children whose needs are met by the two available wheelchairs, it is a wonderful service. Thankfully, because I bought a chair for him, he has been mobile for the past 2 years, and it's perhaps why I can laugh at what a waste of time these appointments usually are for us, but imagine if I hadn't been able to self fund (and I only managed it thanks to some fabulous friends who fundraised to pay off the last bit of the money I owed). He is nearly 5 and a half by the way, and I don't think it does a future rock star's self esteem any good to be pushed around in a buggy when his peers are walking, and just think of all the cognitive development that a child misses out on, when babies are programmed to start exploring their world at 9 months old.
The dilemma has always been how you seat a child who wants to be active (and he is in the Otto Bock Bravo Racer that I got him) but runs out of energy very easily (so needs a fully supportive chair, which the Otto Bock doesn't have). Unfortunately you can't have active and supportive, you can only have either, or. So do I pick my son's freedom, or his spine to sacrifice when I make my choice on what he sits in for the large majority of the day? Well it's a no brainer really, I have to protect his spine, as that also affects breathing, bowels and a whole host of other things that are best allowed to work at their best.
The chair the wheelchair services eventually provided (that took nearly two years to get from being ordered to actually arriving for Dominic to sit in), I affectionately refer to as 'the beast', as it bites back, (my toes have the bruises to prove it). We've had it for a month to try at school, unfortunately the kid hates it, and it hurt his shoulders to try and move it as it is so heavy. Moreover he sat terribly in it anyway so it was a double fail for the chair. That was our only choice down the toilet, so I was genuinely curious to see what they were going to tweak at this appointment so they could send us off for another month, with everyone in the room knowing ahead of time that it would be a waste of time. What I wasn't expecting was to be told that perhaps, for a child like Dominic, the best solution would be a powerchair instead of a manual. My heart dropped with a metallic clunk onto the hospital grade flooring and rolled off to join the dust balls under the filing cabinet. The words, "a child like Dominic", have never been used in circumstances that you could describe as positive. Think, "your child isn't going to live", "your child's bowel is royally screwed" type situations and you'll get why the tone of the conversation changed for me in that moment, although, being a professional mother-of-a-disabled-child of course my facade of perfectly relaxed interest in what they were saying remained unwavering, I just gripped the arm of the chair a touch tighter.
I am very lucky (and utterly thankful) that Dominic has always proved these people wrong. As a happy coincidence he has also managed to save me from looking like a complete arse as usually I am fighting with every fibre to convince the doctors that they know nothing and are all idiots and they should listen to the sleep deprived rantings of an over emotional mother who has a habit of quoting random medical studies at them until they listen. He's the one who transforms me from the mother in serious denial to the mother who got lucky this time. But sat in that room with my heart on the floor, I didn't fight and try and convince them that they were wrong to give up on him, and that made me feel even worse.
Having Dominic so competent in a manual wheelchair had been a glorious two fingered wave to everyone who just ruled that out as an option for him when he was younger. To be honest I think that they were just amazed that he lived, let alone became the leg waggling, joke telling bundle of awesomeness that he is today. Having him in a manual wheelchair always seemed one step closer to normal, if you will excuse my ridiculous reasoning, one step further away from the prognosis of doom that no matter how far we moved away from, still hung over us.
Luckily, despite the incoherent mess my head was in my British reserve didn't let me down and I didn't end up blubbering and using the weathered looking technicians's regulation polo shirt as something to blow my nose on. Instead I took the piece of paper he was jiggling in my general direction and took look at the picture of the ugly powerchair for a moment in silence. Then I looked up, turned the picture round and showed Dominic, and said, "How cool is this? What do you reckon, do you think this would help you whiz around the track at break time and annoy your sister?". Dominic, being a smart cookie, looked at me quizzically trying to read my real feelings about the chair before looking at the picture, giving one assenting nod and a grin before about turning and heading for the door, calling after him "Can we go home now?". And that was it decided.
I know he didn't wheel out any different than he arrived, but it seems like a big backwards step. He suddenly seems more disabled and I'm having a hard time accepting that he can't just be the child everyone forgets is disabled as he is so much part of the cool wheelchair with the flames on the wheels and the flashing lights on the front. But I know that the decision is right, and I'm surprised, and a bit ashamed, that it upsets me so much.
After dropping him at school and instilling terror in the one-to-ones at the prospect of keeping an eye on, what will be, a health and safety travesty, I went home and decided to face my demons head on. I went into the garage and drove out Dominic's Mustang, took a deep breath and took a damp cloth to it and cleaned the off the dust and walked it to school. In our family we believe that if you're going to have a wheelchair, you might as well have a cool wheelchair, and we are eternally grateful to Whiz Kidz for providing the coolest powerchair imaginable to Dominic a few years ago. So Dominic left school this afternoon, legs waggling in delight, looking as cool as ever driving his Activate Mustang proudly, if a little wonkily, down the street. Our normal 15 minute journey took close to an hour, and I'll need a stiff drink before I do it again, but it is the first step in acceptance that even I have to learn to see past the extras that Dominic comes with sometimes.
I shot this little bit of video on the way back from Lilia's ballet class this afternoon. It was a moment that reminded me that you can see beauty in the simplest of moments with children, like being able to play 'It' with your brother and sister, and that moment is what is important, not the equipment he was sat in at the time.
I'm linking this post up to the You're Beautiful posts that Jenny does over on Cheetahs in my Shoes as we should all stop and appreciate the slugs sometimes.
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I can’t begin to understand what tour going through
But as a adult I use a powerchair over my manual chair outdoors all the time and have to say it will hopefully increase his independence
Once more used to it he be able to chase his brother and sister right over the park and be able to keep up and in fact they will run out of energy before his battery does.
Expect before long for Dominic to want faster ( mine now does 10mph ) ,
You may need to start training now
Be able to Carry things as he moves will increase his independence , not sure if Dominic eats or drinks independtley at all but if he can , the fact he can do that is fun. For me being able tk talk on phone and move was novel .ok texting tad harder
I suspect once he realises just how much he can do , hills etc will hold no fear any more . Well for Dominic anyway ,your heart may be in your mouth as he hurtles up and down .
Hoping to see a little boy hurtling through the parks one day and will race him with delight while everyone else try’s to keep up
Wow… I think I have shared a glimpse of a similar feeling – but I realize of course that it cannot really compare. I do know, however, of those moments when as parents we transmit to our children the message we desperately want them to have – even though it may be completely at odds with what we are really feeling. That part I get. It is not an easy thing – but we do it anyways.
I also get the part about having to come to terms once more (when I think I am in a place of complete acceptance) that my child has a disability. H can seem so typical to me – and then something happens and it can feel like getting a diagnosis all over again. Perhaps that is a part of having a positive outlook and seeing things from a strength-based perspective whenever possible. It is a good thing really – but it means that sometimes one can get knocked up-side the head by the everyday struggles, by unexpected setbacks, or by our greatest fears.
Thank you for sharing this wonderful and insightful post. Thank you also for your brave and supportive stance with your children. It is an awesome and powerful gift.
And… the video was lovely as well…
Thanks you and yes, I think you’ve hit the proverbial nail on the head x
I love the humour that comes out in your blog posts even though the subjects are often serious and thought provoking. I think the video speaks volumes too.
Thanks Anne x
i need to post this although i’m in tears. your journey to this point with dominic and his wheelchairs is identical to ours – i’ve felt the anger at the service provided, the heartache at seeing eilidh first in a manual and then in a powered chair, and have spent the pennies necessary to fully equip eilidh so that she could be as independent as her peers. i still haven’t come to terms with “it” even 2 years later – 2 years is nothing, i’m told! – and am not sure if i will BUT eilidh loves her snappie and it enables her and empowers her…
and on a lighter note… the mustang is gorgeous – a lot more styled that the snappie but hey!, dominic, you need to find some speed… “i feel the need, the need for speed” days of thunder… because eilidh would whip you in a race xxx
Thanks so much for this. It’s so nice to know that we’re not the only ones struggling with it all. Out of interest, how fast does she go? Dominic’s speed is capped to a wander-pace.
If you’re going to have a wheelchair you should definitely have a cool wheelchair, and Dominic’s wheelchairs are all cool, manual or powered. Thank you for sharing the video – you’re right, it’s the moment not the details that are important, but that’s often a hard thing to realise when the details keep demanding attention.
Thanks Sally, I’ll tell him you think his wheelchair is cool 🙂
Thanks Donna, his speed settings are restricted so he can’t go any faster. One of Whiz Kidz rules!
We are very familiar with the trips with the powerchair that take an hour when if we were to push him in the manual chair could be done in 15 minutes. Adam’s chair will go a lot faster but he needs it slowed down in order to have safe control.
We are having similar realization though that the powered chair is the future. Unfortunately, many of the places we go, including the homes of both sets of grandparents, are totally inaccessible to the powered chair. Why can a manual chair with spinal support not be made from lighter, smaller materials? It cannot be impossible.
I believe in cool wheelchairs, and cool can take many approaches- my manual has some spokeguards that a friend designed and painted for me, and my electric does cool in the fact it goes far too fast for the nervous/unitiated as I fly round town and terrify people. Heck, it amuses me!!
A friend shouted out to me as I was in the middle of the road, so I did a full speed turn and raced back across the road to be greeted with words to the effect of “Glad to see another nutter driving a wheelchair, trust me to know them!!”Cool is what you make it, I have such a better life with my electric than I do my manual. I can’t push my manual without pain/dislocations etc… but I live a crazy and full life with power, and that to me is the ultimate deal maker.
Your wheelchair problems sound a lot like mine: http://camillamedders.wordpress.com/2010/09/17/the-wheelchair-situation/
What you said about the moment versus the equipment was right on! Whatever lets our kids do what they do best.
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