Saturday, 2 July 2011

Autism and the Ugly side, of Others

My blog jumps back and forth in the time span of the last 10 years. The following are some conversations that happened over time, it is ludicrous what we have had to go through and it caused me a lot of grief and on that basis I feel compelled to blog about it, it aint pretty..such is life!






Is Mikey ok at school? Oh, he's fine then, no problems at all? Well I'm calling because he has not slept for more than five hours this entire week. He laughs maniacally then a split second later is enraged, throwing my dinner table across the kitchen, look, I know he is only five but when he gets mad like that, for no apparent reason and so instantly, he rips wardrobe doors off, has smashed the television and dented the fridge..and you say he is fine at school?
Ok then, terribly sorry for bothering you.

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You are his pediatrician, Why wont you see us? We have had a diagnosis, yes, over two years ago and I need help, Mikey's behaviour is astounding! Ok then can you refer us to someone who will see us, give us another doctor? No? Why? It doesn't work that way? Oh, but I thought all children like Mikey got to see the community pediatrician? Right, you cant help us, well thanks.

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Hello, this is the children's services? Hi, its me again, I have called you about a hundred times over the past three years. You once sent a social worker who offered us help then never returned my calls. Yes I know her name. She does not work there anymore and you don't know who we are? Right, ok, could you send someone else then, I am desperate for some kind of help here! Six months waiting list just to see a social worker to be put on another waiting list for minimal help? Best send someone asap then.

Hi, yes its me, again. We were promised to be moved up the waiting list about four months ago, I am really desperate here, please. So you wont be helping us now because you have no funding? But Joe down the road gets respite, quite a lot I believe just recently. Of course you cannot discuss other cases, parents do talk to each other, you know that right? Can we at least be assigned a social worker. Yes I know, you will get back to me...probably never, right?

All I ever asked for was the respite care we were entitled to.

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Making a plan

Hi there, this is Mikey's mum. I believe the community pediatrician visits the school weekly, is that true? I am sending a package in, please give it to him on Tuesday then, when he comes there. Thank you.

I decided to make a dvd of Mikey's extreme behaviour in a last ditch effort to get help from the medical profession who refused to see us at all (hard to believe isn't it?).

Hello, yes this is Mikey's mum. Oh Hello Doctor! You watched the Dvd? Yes I know it is pretty shocking.........well the school tells me Mikey is just fine there, and quite frankly, that makes me feel like it must be me doing something wrong? ...No? You will go and see him at school tomorrow? Really? Yes I will come see you straight after...and thank you sir!

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Doc - I observed Mikey in class, from a one way mirror wall, he could not see us. After watching your dvd I contacted a private child psychiatrist and brought him along. Within the first minute of observation we saw Mikey going from very excited happy to becoming very angry and throwing a chair across the room.
Me - right, the school reports no such behaviour and insisted to me that all was fine.
Doc - yes, we have called a meeting with the school and will formulate a new behaviour management plan etc.
Me - finally.
Doc - don't worry we will help you, but tell me how much help are you getting from children's services?
Me - none at all, apparently they have no funding, I have been on their list for three years now.
Doc - I see, I will be contacting them because I know for a fact they have received a lot of funding.
Me - thank you.
Doc - what about you, how are you coping?
Me - I am seeing a therapist weekly and taking anti depressants, I don't get sleep and I am in crisis, I am heading for a breakdown and I feel weak and pathetic, other than that I am fine.

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Why did you tell me everything with Mikey was fine?

We have 80 children in this school and a two year waiting list

Yes I am aware you have 80 children here, I only have the 1, ok? And it is not acceptable that even 1 child slips through the cracks.

What I wanted to say was....I am scraping my forehead on the ground, grovelling in your Awesome presence whilst offering a thousand apologies for asking you to do your JOB. How, pray tell me am I ever supposed to trust you again?


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This was the first small victory for us, with a lot of ups and down to follow, but at least we got one foot into the door of HELP. It is so difficult for parents exhausted to the point of breakdown to pick themselves up and fight the battles, just to get some help that they are entitled to...there is something very very wrong with the system and people have lost their lives by their own hands because those who's jobs it is to help, turn their backs and some even delight in doing so. I hope my blog will help at least one other person to keep fighting for their children s rights, don't give up. Our story is no less than tragic at times, and was unavoidable. More to follow..

10 comments:

Graham Hanks Art said...

we have just had similar problems at Adams scjhool - his teacher (who is also the school mamager) refuses to accept that he has special needs and thinks he's just a naughty boy who needs better parenting!! the kids move to a new school next week :)

Samantha Anne Hutchinson said...

GOOD for your Graham! I found the attitude of blaming the parents to be a difficult one to deal with, as a parent your instinct is to blame yourself for every thing anyway. I still do that sometimes, but no School is going to be treating us like that again! :) Thanks for you comment Graham..keep me posted!

Anonymous said...
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Jacquie said...

It's so true. When you would finally break from no sleep, no help, and a complete feeling of being overwhelmed, those who ignored you would think "How could she have done abc?"
Unfortunately, you have to be loud, and mean, and pushy to get anything you need. otherwise, it's just easier for "them" to dismiss you.

Samantha Anne Hutchinson said...

Hi Jacquie, yes, sadly those who shout the loudest....It is so difficult to explain what a torture sleep deprivation is, and that is only one small piece of the whole Autism Asteroid!

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