Ignorance of Young Disabled Children

Hi Oatie's Mum here.  (Okay it wasn't intended to be a rant) but....We went out earlier today and did a few errands, popped into the post office, glasses shop, shoe shop as mentioned in the previous post, just usual family things.  What I find annoying is the attitude of the person in the post office, shop assistant or whoever it maybe.  Oatie wanted to WALK around the shopping mall, and any shopping mall is a huge place for a non-long distance walker.  I remember when I twisted my ankle one winter and parked in the furthest parking lot (not thinking about the distance as you don't when you're able bodied) in one mall and had to hobble to the shop I needed to get to buy winter gloves for one of the kids.  In -30, you need gloves!  So for Oatie to want to walk must be equally as tiring but he also wanted his independence... so he got a bit grumpy today , not overly so, and wanted to walk but was exhausted so had to sit down but didn't want to sit down as he wanted to walk.  So the usual 3 year old stuff but with the added drama of cannot walk more than 10 steps independently on top.  So while Oatie was complaining, "Oatie Walk", the huffs and scowls from the Post office woman, to the glasses shop assistant with annoyance at Oatie.  I find just because of his SIZE, you get treated like he's a picky LAZY 3 year old rather than..... a person who is trying to overcome a debilitating disability and a person such as Oatie who is the most stubborn person I know and we (my husband and I both come from stubborn families) know stubborn.  Oatie is SO determined to be Able and dis the part of DisABLED that he gets very frustrated at times and is a sensitive person and gets upset too by his body letting him down.  We prefer to take him around in a stroller rather than a wheelchair, so when we park in the handicap spot with our disabled badge, the looks we get from the 'limpers' like we're breaking the law by parking a bay that we're not allowed to park in (even though Oatie's in the car too and the placard is registered to Oatie) like I would NEVER EVER park in a disabled bay without Oatie and abuse the placard system.  Why do you have to be OLD to be disabled, what about the young?  I can hear you say, oh but he's only 3, if you pick up Oatie you'd know what I mean, you've seen photos of him, he's not a overweight guy by any means, but he's very heavy and his body is dense and doesn't "hang on", and destined to be a 6ft2 burly lad.  We've noticed that since I've been rolling the whole length of his back with the ABR technique, that his muscles have got more dense too and he's put on muscle weight. 

Or when you get perceived that you're an annoying parent by bringing the stroller, into a shop or wherever just to them, an annoying opinionated 3 year old who wants to walk and can't>, and a few times have been asked 'can't you leave it in the car! he saying he wants to walk'....  I really felt like saying, can't you leave your LEGS in the car? 

Oatie is our 3rd child so I've had the "normal" taking 2 kids out on errands shopping etc etc before and have the comparison of having our gorgeous Oatie as our 3rd and notice the difference in I suppose before and after.  Or before and after finding out about his disability.  I'm not complaining, but just food for thought, just popping into the grocery store or going out for a family walk even with a toddler, you with an able bodied family take it for granted, the ease of just going out and just doing.  When you have to allow for "wheels" you can't just go as easily, you need planning.  My friend invited us to go camping, I so wanted to take the kids, but then thought, terrain, handicap, not just yet.  I'm not saying never, as I do feel that just because one has a handicap you can't achieve, I used to love watching the London Marathon and the wheelies cream all the runners on time, or a hero of mine Terry Fox.  I suppose the time frame for what you'd be able to do activity wise as a family of able bodies, you have to move your perspective a bit back say a year or two or even three to something that's more realistic.  Sure, I'm an experience camper, I could have taken them, but would Oatie have enjoyed it at this stage?  Any maybe another young family of 3 kids with a disabled 3rd might have achieved it with success, but every family dynamic is different and in someway I feel that we're all still having to adjust, and even though Oatie can't convey all his opinions fluently as he would wish, but he does have them and preferences and yes I could have taken the older two, but on the other side I'm done with leaving him out.

Rant over.... 

All I can say is Thank you to ABR, for helping these wonderful children, reach their potential, and for Oatie,  ABR technique is keeping him pain free so far and twisted limb free so far and increased mobility.  And for being there for the parents too, they are just so nice and so understanding, I wish there were more people like the folks at ABR in the world, they to me are like Angels without visible halo's.