J refers to himself as "Danger Boy". He likes saying this - thinks it's a big joke. Normally he shouts this with great glee from the top of the (wrong side) of the bannisters, often while wearing nothing but one tatty glove - a perfect superhero! Thing is that J's autism means that he doesn't have the imagination to visualise what could happen if he slipped and fell, that is, even though it might have actually happened several times before. Danger Boy has not a clue about danger but can spell it no problem and write it perfectly in Times New Roman font! Oh, and did I mention that Danger Boy is more than a tad accident prone too.....
I, on the other hand, am Neurotic Woman to his Danger Boy! I see the world like a 1970's safety poster: sharp corners, head-height counters, inclines, wires to be tripped over, pound coins to swallow (yep - that one never did reappear..), bodies of water to fall into or at best slightly splash one's clothing, causing a whole outfit change in J. I'm not naturally like this - I can live by the seat of my pants with the best of them - Hell! I have Viking blood in my veins. Personally I like a bit of adrenaline but, where J is concerned, we've had way too much history for me to be lackadaisical where safety issues are concerned. I'm never far from J when he's in the house but you can guarantee that the second I go and spend some time chatting to G on the trampoline, J will catapault himself from the top of the telly to the marble fireplace, head first.
The simplest trip out can be fraught with danger. Being a superhero, Danger Boy is not a keen hand holder and has a slippery superpower of being able to almost dislocate his shoulders/wrists in a bid to escape, if grabbed. He doesn't like to walk at the same pace as the rest of us and normally trails about 20 yards behind, favouring the outer-most kerb stones to hop along. Danger Boy has been known to skip, without warning into oncoming traffic and likes to balance on brick walls and bollards. Add to that, the rare superpower of becoming invisible in shops.....
Reins! Did somebody say Reins? Dammit - would never have thought of that if several tutting passers-by hadn't proffered this marvellous idea in a "your child is a total danger to himself and society - rein him up, lady" kind of way. Well, hello, do you not think I have a cupboardful of the bastard things - little backpack ones, wrist ones, ones with letters of the alphabet on........ Have you ever seen a kitten wearing a collar for the first time? Well - Danger Boy doesn't do reins. We've tried. Say no more.
Add to this cocktail of potential disasters the fact that J - although he rarely stops moving and has the energy levels of an Ever Ready Bunny - easily becomes overloaded in the sensory department so, at the midway point of a trip to the shops, can suddenly stop sharp, pupils dilated and be almost incapable of walking another step. Up till recently I would carry him home, but at 22kilos my back has called time on this habit.
So we have danger. We have sensory overload. And we have G. G, our ever-sensitive 8 year old has certainly inherited J's share of imagination. He sees danger in gambolling lambs and frequently asks things like "when is the world going to end". He's struggling with his brother's autism and, although he can be sweeter than any child should ever have to be to their sibling, his default setting on the matter is currently one of fury. He gets so upset about J's Danger Boy antics that he often refuses to come out with us. So the end result of one of our trips out is G, jangling with nerves, frustration and fury; J clinging to me like a limpet and me limping like a sciatic nonagenarian. There's many a time that we've crawled over our doorstep and collapsed in a sobbing heap on the kitchen floor.
Straws. Camel's Backs. Something had to give. A few sneaky peaks at the internet revealed a whole world of Special Needs Pushchairs - huge chariots of freedom - with huge price tags to match. So I applied for a grant from a local charity, explaining our predicament. Et voila! One giant sized Maclaren Major Elite with giant sized, special needs-resistant accessories for the beleaguered looking family on the kitchen floor.
Now, this is no stream-lined Smugaboo. No, this is a beast of a thing and might as well have flashing lights and bells, highlighting the fact that it's occupant was in some way different to his peers. But is that any bad thing? J doesn't care - to him it's a rolling sanctuary from the world which he finds so challenging. G is happy a) because "it makes a great telly chair" and b) because he doesn't need to fret about his brother any more. And me? Well, I really didn't know how I'd feel but firstly I want J to be safe, secondly I want G to be less stressed and thirdly, have had enough hard stares, tuts and even some "that child needs a good smacking" comments in the past to think "Sod it, let's give it a go".
We set sail on our maiden voyage for a trip into Kingston. J instantly took to his "Medium Boy Pushchair". G trotted alongside, chatting happily. Nobody tried to run into the road. None of the normal hesitation, deviation or repetition was exhibited. Nobody tried to squeeze through the railings on Kingston Bridge. I managed to buy the 2 things I'd set out to buy. Nobody got lost in the shop. A shop assistant fell over herself to come and hold the doors open. People smiled at us. Cars stopped to let us cross. We even managed an unscheduled trip to the playground on the way home.
And Danger Boy? He wasn't over hyped, he was smiling and repeating to himself "J is safe. It is safe in my medium boy pushchair".
Afterwards my friend, who has a fairly recent spinal injury and is a wheelchair user, asked how I felt, pushing J.
1) I felt vastly relieved that trips out can be straight forward
2) I felt delighted that J's autism doesn't have to impact on G every time we leave the house
3) I felt a bit envious of families who don't have to even think about this type of thing
4) I felt guilty for even thinking number 3
5) I felt surprised by the complete U-turn in strangers' reactions to us when they could see that J had some type of "special need"
6) I felt worried that I had Munchausens by Proxy for being pleased that strangers were smiling at us!
7) I felt sad that J had always felt so unsafe on previous trips
8) I felt really really really proud of my little superhero.
6 comments:
Just imagining the big grin on your face has made my day.
Who would have thought a 'simple' solution was so readily available?
Go enjoy ...
Kristina, OMG!!! WE HAD ONE OF THOSE, TOO!! And, yes - the relief (and humongus guilt) to have the outside world recognise my son as disabled, and not as the victim of of my - obviously - terrible parenting, was almost beytond belief. I had taken to only making the most necessary of trips out, saving the bulk of that for the weekends, where Sam's dad (bless him), could run the gauntlet of all the cold disaproving stares.
I remember losing it in the supermarket one day, a little old lady was hissing and tutting to her friend, over my inability to "control" Sam's melt-down (he was in a fully fledged panic attack at the time, terrified, and in need of comfort, certainly not scolding). I informed our audience, "He has an excuse for HIS behaviour, what's yours?" Of course, it went clean over their headS - I had no diagnosis then to throw out at them, either. I sooo hated them, but not half as much as the tears I found coursing down my face.
My eldest son absolutely hated the embarrassment Sam caused, and my two younger girls always had to step down to put Sam's needs first, it was just the way it was, out of pure necessity - the resentment towards Sam was palapble from his siblings - I despaired, and my heart broke, for Sam, for them, for us. There was a time I never dared to leave Sam for a minute alone in the room with his older brother, he was so resentful, and angry with him all the time.
Autism affects the whole family, other children in there pay a huge price too. I never, ever thought we would reach the point that we have now. Sam is truly, honestly loved by his big brother, and also by his sisters too - they seek him out, make allowances, and include him in virtually everything they can. If someone had told me this ten years back, I never would have believed it.
Life got better (smile). And, okay, I may be slightly biased here, but guess what? Sam's sib's? I am proud they have been shaped into the compassionate, selfless(ish), empathatic teenager's they are. Sam has helped his sib's to become people I am so very proud of!
(Embracing you in a great big squeezy bear-hug) there are so many silver linigs to be found along the way, believe it (x).
We had one to! This post brought back so many memories! And im still smiling:)
Thank you, as always for your super-lovely comments and emails - it's so great to have feed back. And, of course, words of encouragement from those of you who have been here before us!! x
Hi Kristina - I remembered the blog title... Love your writing.
As a means of keeping G's stress level down, maybe special one-on-one trips could be planned. Like, G and Mom go out together and Dad stays with J. It could be a weekly thing (to get the routine in) and each week switch which parent was with which kid. Not sure if it would work for you, but just a suggestion.
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