Monday, January 31, 2011

Fantastic a Government Agency that appears to do NOTHING!


Well the good news first I feel so much better - Hooray!  Oatie might return to school tomorrow which he'll love.  Santa brought Mummy a "Re-bounder" and today was the first day that I felt well enough to have a go, it was amazing and awesome, and actually quite addictive.  I feel like going for another bounce.  Another ABR family recommended it not for her son with CP, but for herself..., and well I recommend it too!  I know you're bouncing, but it's very uplifting and rejuvenating, and a good place to get some aggression out when the world run by idiots makes you cross!

Well, the nice Speech Pathologist who works at Oatie's school, referred us to the Children's hospital for Oatie's speech... or so we thought well we've been referred to the most USELESS govenment agency that exists... I challenge our followers to tell me of a more stupid agency.

Well the whole thing was a joke.  They sent out a letter which we got one month after the letter date for some reason as did our Dr as he was laughing about it also, so I know it wasn't just lost in the post.  Then it stated that you had to phone OR email to make an appointment for them to call you to discuss your child.  (This happened in about 5 minutes,....So I emailed, and got a rude response back, and said that I had to phone, so I phoned, and got this persons voicemail, and then she emailed me saying I got it wrong.. so I phone back and left a message reading out the paragraph where it clearly stated that you COULD email to make this appointment, and then I emailed back to her email I think it went back and forth again, when eventually I said this is CRAZY just phone us, one of us is by the phone and let's just make this phone appointment, (which we did and the earliest was a weeks wait to be phoned!).

We got our phoned appointment and then they said that they couldn't read French, well that's fair enough so why didn't they contact the speech lady at my sons' school as she's bilingual anyway.  So my husband filled them in on Oatie and he got asked a heap of questions (this is for SPEECH) but how well can he walk, how good are his feet?  How well does he sleep?  Well after the barrage of questions, they are not allowed in the region to sanction the use of an Ipad or an Itouch (just in case Oatie used it for another purpose?) what is he meant to go and do, go on to his day job at the exchange, grab an i-novel, on-line banking, more like he might use it to draw and develop his fine motor skills?, and Oatie would get maybe a few hundred dollars towards an archaic speech device that probably would cost thousands of dollars and weighs far more than an ipad!

Our expectation from this "department" was that they would look at Oatie as a person and see which speech device would be best for him and see how his hands moved and how well he tried out different devices to help his communication levels.  but no!  We are being posted some leaflets!  FANTASTIC! so useful? Not!

Last year, there were these two mums at my older son's school and they were nattering about their kids speech therapy, and I couldn't help but interject, "they have speech therapy?", well everyone in this area has speech therapy, in England unless you have a real problem communicating like having Cerebral Palsy for example you wouldn't get it and even the "criminal-esq" scummy people all spoke to an acceptable standard.  Well anyway this one mum said that her daughter's speech therapist said that her daughter wasn't speaking for "control" issues and this other mum's sons' speech therapist said he's not speaking as you'd like as you don't ever play with him.  So these kids, get speech therapy for other issues like how their domestic "bliss" is like or isn't in these cases, not because they have an actual problem speaking, and probably cost the state many thousands of dollars as they went for a good year, the parents got to pick when they quit... but Oatie, who has Cerebral Palsy gets this for a referral!??!?!?!?  $200-300 dollars towards a piece of junk!  Fabulous!

So what this "department" actually does apart from being paid to be useless? is a total mystery to me and to my husband who after he put the phone down said, what was the point of that call?  the mainly asked about his legs!

I will go back to my son's speech pathologist and tell her of our fantastic experience after the referral and I guess start over again? C'est la vie!

Well in our nearest town, people in wheelchairs are obviously not allowed to "drive", we went to the Vehicle registry to renew our vehicles plates, as the step up is just over 1 feet high!  I struggled getting Oatie's Stroller in the building... I don't know how anyone with a physical impairment would manage!

When I was Senior high age, my friend and I were on a school trip together and I remember her beach bag had this slogan on it, "Life's a Bitch and then you die"...  At the time I thought it was a rather pessimistic  slogan... I have been a "minority" I suppose,(as I don't see myself as one) my whole life (my skin colour), but I never let bother/define me and I never saw myself as a colour...  Now I'm the parent of someone in a minority, Oatie, even though it's not dwelled upon if you know what I mean, society or the world doesn't let you "Blend", people in the same "label" as Oatie, are treated as a stinking diaper/nappy, and have 1 feet steps to get into a building which anyone who could drive, should be able to get in the building...which includes people in wheels, which just draws attention to the struggle and being humiliated,  rather than letting them be and blend... and get substandard treatment!  Same as swimming pools, like the "Disabled Hoist", where you get hauled out like a whale, why not have a gradual slope to the side of the pool?

Ohhh that's right, they have idiots running things!  I really firmly believe that anyone who has the authority to plan, design or authorise public/community building really should spend each year a minimum, of a week in a wheelchair and see how they like it!  Go and visit a school that they designed or authorised and see how wheelchair accessible these public/community places are!

Oh and we got 2 hours of Manual ABR in today and he's going to get 11-12 hours of machine.

3 comments:

  1. The government is supposed to make things easier for folks in your situation. Shame on your government (and I thought Canada was different!) Just want you to know that you are doing GREAT with ABR hours. So many families really, really struggle with the time committment. Kudos to you! This is WHY you hate it when your government wastes your time. Your time is a precious thing. Been wondering about something (curiosity and the cat thing), where did Oatie get his nickname?? So glad that you are feeling better and I'm picturing you jumping on your "Re-bounder"!
    Fondly,
    Sharon

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  2. Dear Sharon,

    You've hit the nail on the head, someone understands.....the reason why I'm "frugal" with my time or I hate time wasting is that I squeeze everything into a day that I can and maximise Oatie's ABR hours, it's a challenge everyday by Oatie's Brother "Bean" and Sister "Raisin" are so helpful and really help in little ways which make it huge ways for me to get his hours in, they will watch Dora with him or baby Einstein for the 1000th time (even though they are sick of it)to give him some company.

    Well, Oatie's name came about because... When I was pregnant, I named them funny names, when I first saw my eldest on the ultrasound he was the size of a bean, or so it looked to me... so he was named "Bean" and still if I shout in to a crowd "Bean" he'll look up. The one I lost was called "pip", and My daughter was called "Raisin" and Oatie was called "Oat", my eldest likes making up songs and made one up about Oat, which opening lines were "Oatie Mashed Potato,... "I'll spare you the rest of the song... lol! So my other kids called him Oatie and he's either JJ or Oatie when they chat to him.

    I think I'll try swimming on Thursday.... so I'm going for a run, bounce and then ABR!

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  3. Dear Rachel,

    Thank you for the info on the Nin Jiom Pei Pa Koa, I will look into that for sure. I'm just trying to maintain my throat till I can get the scan. It's so odd having sore throat without being ill at all! Quite bizarre actually.

    Best Wishes,

    Mel
    xxx

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