Wednesday, March 14, 2012

Productive anger?

Perhaps... Anger always gives me good ideas.

Remember this: i-just-dont-understand ?

Well with that in my mind, I started to think. OK, I'm trying to do that all the time :o). This time I focused on a problem that I bothers me for a long time. 

Lack of informations, what is going on for and about Autism in our country. They write - "societies" that there should be approximately 20.000 people (children, teenagers & adults) with Autism Spectrum Disorders in our country. If that is true, I dare not say yes or no. I simply don't know. 

Why?

Again; lack of information. How did they come up with this number? I think this anticipate number was made by the 'world' statistic and just 'copied' into our total population number. 

If I count - in this four years that we've been struggling with Autism - well, I should say * struggling with the system * I meet and know exactly 11 families/parents. We know 6 whole families, 2 by e-mails and I'm glad I do, that they contact me; 3 of them... one completely stop communicating, two of them... well, I won't go there...

Believe me, I know through this blog that I write and through the blogs I read and through the FB's different pages and groups, more parents who have children with Autism in the world, than in our country...

So, what productive came out of that anger?

I decided to give it a try and opened a Facebook group for parents with children with autism in our country. 
At the moment page is still 'under construction' as I just made it and contacted my friends if they agree with the idea of sharing information - which will be its main purpose. 
I see & I learned that we don't get the informations. Some of us get some and other get different, and some of us get almost nothing... or too late...

Just yesterday one of mothers I know contacted me that our MD again invited (obviously) only some of the parents on the meeting which was held today at 3 p.m.. Nice - It seems she chose just some of her patients' families for this meeting.

I'm asking you again: Is this raising awareness? Helping all the children with the Autism? 

I can't say, I would attended this meeting. I don't know. But I think I deserve a chance to decide. In most of cases this is taken away from me, from us. Why?

I tired of repeating myself: Lack of information.

p.s. Če se kdo izmed vas, ki berete moj blog, želi pridružiti naši FB skupini staršev otrok z avtizmom v Sloveniji, naj me poišče na FB-ju... Če kdo izmed vas pozna starše otrok z avtizmom v Sloveniji, sporočite naprej... Naj se beseda širi, naj se širijo tudi informacije. Vesela bom. 
:o)



4 comments:

  1. well done for using your anger productively and good luck with your FB page xx

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    Replies
    1. Thank you Anne. Unfortunately the success of FB page is not entirely on me, but also on all those who will join... We will see, how prepared we really are.

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    2. I forgot... thank you for joining me...

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  2. You are doing a great job raising awareness good luck with the facebook page.

    ReplyDelete