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Friday 1 April 2016

WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 1

When Dr Charis Eng linked mutations in the pten gene to Cowden's syndrome, she also noticed that her Cowden Syndrome patients had an abnormally high number of kids with autism or other developmental disorders. Studies have indicated that 1 in 88 children may be affected by some form of these disorders.

I first met Michelle in an online support group. Both she and her daughter Indigo have autism. Indigo has a host of other conditions including Cowden's syndrome.

Michelle's words on the eve of Autism Awareness Day (April 2) touched my heart. With her permission I am printing these words so we can all learn from them. She and her husband struggle on a daily basis, but I am always bowled over by their resilience and the way they find gratitude and joy in many situations. These people are not quitters and all they want from us is acceptance for their daughter.



April 2 is Autism awareness day. We are not interested in awareness. We want acceptance for our daughter. To be able to go out and about without being cringed at or people making cruel remarks about her being disabled. We have heard them all.
" yeah, she's autistic but can't you shut her up?"
" i don't want to look at that while i'm eating"
" you should have aborted it"

" why can't she talk"
" can't you discipline her?"
" that safety harness is against her human rights"
"Look at the retard"



I feel quite honestly, that at the age of 6, it is quite obvious due to the noises she makes, the way she acts and that she doesn't talk means shes disabled, not badly behaved and requiring discipline. Autism is a widely known concept in the world these days, many people know a neighbour, student at their kids school or relatives in their own family. It is not rare. 

I believe awareness is long past now and its time for some acceptance for these kids as they try to make their way. I would also make the request that if anyone (while in conversation with others) feels the need to talk about pre natal tests being available to test for autism, a cure is necessary, or argue about how much tax payer money goes to children like that, please remember that someone at your table may actually be autistic, have a child, relative or have a loved one who is autistic. Words like these are harmful and hurtful. 

Remember people with autism are people with feelings, and deserve respect just like anyone else on the planet.

                                    Michelle

Till next time...xxx
Indigo and Michelle

ST

16 comments:

  1. People can be so cruel! Michelle has articulated the importance of acceptance really well. #pocolo

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    1. Yes I agree which is why I'm getting her words out for her. X

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  2. Thank you for sharing your experience. I have a niece that is autistic. One of the most touching moments of my life was when she acknowledged me and willingly hugged me all on her own.

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  3. Well written hun - thank you for sharing so honestly x #justanotherlinky

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    1. Thanks for taking the time to read it x

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  4. So true I am autistic mother and all so wrote similar post. Definately hate the idea yhat autism is some sort of disease that can be cured. More then anything us autisitic people what people to understand X #justanotherlinky

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  5. Wow I'm so stunned by those comments, truly shocking. I was about to say that we have been lucky but not having vile comments thrown at you should never be classed that way. Thanks for sharing! #WkendBlogShare

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  6. Very true, I don't have much experience with Autism but I can understand why acceptance is much more important than awareness especially for a parent. #TwinklyTuesday

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    1. Such an easy thing for us all to work on.

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  7. Thank you for sharing Michelle's story with us, Suzi. It is sad that her family still experiences this kind of treatment by people. It is sad that we don't appear to progress as much as we profess. We need more people like you and Michelle. Thank you so much for linking this post with #UpsyDaisyLinkup!

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    1. Thanks for the compliment but it's Michelle who deserves it more. X

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  8. What awful comments to experience, there are lots of times when I wish people would engage their brains before opening their mouths. Thanks for sharing with #PoCoLo

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  9. I can't believe how cruel, thoughtless and ignorant people are sometimes! You are right, awareness means nothing without acceptance. Thanks for sharing with the Blog Fair.

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