Monday, March 28, 2011

Oatie - In limbo, a disabled fraud or where?

On Friday we did manage 2:39, of Manual ABR and has his Machine every night but two, since we got  his ABR Machine.

Well while I went swimming and had the "mean swimmer" swimming in the next lane as my muse... (joking about him being my muse, just relieved not to swim with him),... I was wondering about the "F" word, (Future), for Oatie.  Sunday night we did his flashcards with him, and he will always orientate them correctly and he got all correct apart from his newest word that he hadn't seen for 2 weeks, he is so obviously very very bright... and even though it's  2.5 years till he starts Grade 1, that's only 30months...   Why was my head swimming when I was swimming.... well apart from the best place for me to think;

  • My eldest school is also having a re-vamp and well there was no mention of adding any disabled facilities to the school, it's not even an old building and had a huge overhaul 8 years ago and even then when they added an upstairs library still no disabled method of conquering the stairs.  We would like Oatie to go there when it's time... but that is a battle to come, for another day...

  • The the other recent experience of the whole speech thing at his school, "oh sorry our budget is exhausted..." and I was like with whom?  Oatie is your most severe disabled child, and you've spent NOTHING on him... so who took the WHOLE budget?"  "Sorry our OT is pregnant.... so nothing this year..."

  • Parking in a disabled bay WITH our badge WITH Oatie in the car, the scathing looks of the elderly like WHO is disabled in your car....!  (Yep they can push their cart and walk unaided to their car, not saying they don't' deserve their badge, but... what makes them think that they have any right to judge whether Oatie qualifies for his badge)

Well, who needs Google, from swimming regularly, and at the same time as the adult swim-club (I don't swim with them...) but I know quire a few people who do.  I am finding out a wealth of info on disabled services and the best way of accessing them.  Only, there was a disabled swimming group, which isn't open to the public it's organised via a Dr's referral... granted it was for adults... but only because I swam much later today did I ever see or hear of this group.

Everyone says he will walk, and for him, I really hope he does, it would open up the world to him, but if he doesn't walk, he doesn't walk, people can lead a super life without walking too.  But at the same time, no one thought he was "disabled"/ had CP.

So I kind of feel that Oatie/we are in limbo, it's taken a huge effort to keep our disabled and our able bodied worlds both open, and sometimes I'm thinking.... why did I fight for this, to be in both?  (But it is for our family good to be in both, it just is painful from time to time, but that's ok).  It's good for my elder two to have a 'normal life' and embrace their brother's and it's so so so good for the "normal" people to have a reality check with seeing a disabled person in their face, and for their kids, to see that it is perfectly normal for disabled and able kids to mix, and in my opinion, how it should be.  Another blog I follow of a girl called  Ashley, her mum has been campaigning to get Ashley into a mainstream school.

I can now TOTALLY see why we don't see many families with a young disabled member, being in the able world, as it's fairly painful actually...  being in a fairly small town, if you're a sporty family, you tend to see the same people/families around town all the time.

From the able world, you get the uncouth remarks, then they go oops... or they arrange an able bodied activity/social for the kids and ohhh sorry I forgot... or a play-date with the kids the same age... but not Oatie... and they turn and say, "Well he can't do X..." and like I had at the volunteer commitment / no one wanting to babysit.

Where as in the "physically less able world", although we all have our different plights and each of our children all have unique "conditions", we all stand together and that's so nice.

Recently one of the blogs I follow,  of a gorgeous young man called Adam, Sharon put a post about WHY, why don't people look closer to home...

The blanket definition of CP, each child who has CP, it affect them all in a different way.  From love that Max

Oatie is 'lucky' as I don't know if that the right word, but he has the "normal" life just out of his fingertips... always..., he's blipping between the two worlds, his speech, walking improved day by day, but will it be 'enough' in 30 months time?, I wonder where his life will lie, in which sphere able or less abled?  Some day's I wonder if we're a fraud in the disabled world as there are so many kids/adults who have much bigger challenges to climb than Oatie... and then, we don't fit in the "able" world either.  I have to say I feel more at home here in the the "physically less able"  that's why I sometimes feel that we're in limbo,... and more so as we're out of the "medical system" as we do ABR which is out of the medical system.

We didn't do any ABR over the weekend as he really wasn't very well, a parting souvenir from preschool before spring break.  But today he didn't want to eat his lunch, he said, "Mama I'm tired" something he's only said to his dad before and then I said well "eat your lunch and you can have a Nap then?",  he said... "NON!! in his French accent and said " I want BED", so I sat him down for lunch, and he drank his drink and said, "Tired... Tired.... Tired.... Tired... Mama... Tired..." etc so he took himself off to his bed for the whole afternoon, and didn't want to get out of it, he reluctantly came down for dinner and we said he could play for a bit as he'd been in bed, and said, nope! I Tired, I want Buzz Bench (ABR Machine), I sleep!

So as my bench companion (Oatie) went to bed...., I made two pairs of figure skating pants this afternoon for my eldest,  I was hemming them as he went out the door...they compete in the weekend after next for three weekends in a row....

Hoping to get some ABR in tomorrow,

Love Oatie's Mum


  1. Mel, I really do understand your feelings and Oatie's positioning between two worlds. All I can say is that I am grateful that this little boy has two wonderful parents. Your goal as a parent (and most parents with abled or disabled children) is to maximize your child's potential. With any kind of disability (big or small) you swim against the current - shouldn't be like this. All we swimmers against the current can ask for, demand is a little help along the way. We are entitled as members of the human community. . .
    Off to Montreal
    Love, Sharon

  2. Dear Sharon, you always say the nicest things.

    You must have had the same with Aimee, I still get taken back by the love of "the siblings". Oatie's siblings who say to me, "mum, when are you doing Oatie's bench, just reminding you so you don't run out of time", they are so supportive, or if he's feeling left out whilst on his bench it's in our Den/lounge, one will go and get their pet cat and let him hug it or rub his back.

    I'm going to do a tiny bit more research and then go for a second plan of attack to get the referrals that Oatie needs.

    Have a wonderful productive time in Montreal and if you wanted to try that lovely Indian the address and phone number is on my blog pages, it's super disabled friendly and the staff and food was first class. They were so lovely with Oatie.


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