The A Word – Part 2

askpergers

I watched the second episode of The A Word last night and I have to say I continue to enjoy it. It is true that some people with autism do have an issue with the show, and I don’t want to downplay what they feel, but from my point of view the show does a good job of portraying how most real families deal with this kind of news. Sure not everything they do or say is something I agree with, or like. But it`s a TV show. While we as autistic viewers know that Joe is not broken, or abnormal or damaged, his family are still trying to understand that. Even though some of the characters might say or do things that seem silly, over the top, or just plain wrong, that’s just an echo of what a lot of real life families do or say. Below are a…

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Two of the Most Important Autistic Blog Entries Ever — Ever So Gently

I’m a non-autistic mom who is blessed to parent an autistic daughter along with her two sisters. She’s an amazing, incredible young lady who is one of the three brightest lights in my life. This Sweet Girl finds being autistic to be a wonderful thing, something that she needs, something she doesn’t ever want anyone […]

via Two of the Most Important Autistic Blog Entries Ever — Ever So Gently

 

“The world is only as tragic as you allow Autism Speaks to let you think it is.”

I will not “calm down”

“Calm down”

“Don’t get so excited”

“Why are you getting so worked up? You can’t do anything about it.”

*****************************

I hate these sentences. Seriously.

When I was a kid, I think I was passionate. I don’t have a great memory of my younger years. But I remember hearing this in my tweens/teens. A lot.

How is that a good thing?

Where could that passion have taken me if it had been harnessed instead of squashed?

Well, it doesn’t matter. I found it. Better late than never. In my 4th decade of life, I found my voice. I found my passion. I found my drive.

I have to thank my husband and child for this. Hubby for giving me a safe space to grow in. And child for waking the “sleeping giant”.

I don’t know if it’s common to “wake up” when you have a child. But I know that when my “mama bear” woke up, she woke up not just for my kid, but for others who need a “mama bear” to rise up with and for them.

My Bu!!$#it filter has a VERY low threshold now. I used to “let things slide”, keep my mouth shut, keep my feelings to myself. I was a VERY quiet, “nice” person. I still am (at least my husband thinks so 😉

I’m not AS “nice” as I was. If “nice” is about keeping quiet, not getting excited, or worked up, or keeping “calm”.

No. I am NOT nice anymore.

I am powerful. I care deeply. I want to make a difference, even a small one, in the lives of others.

And I like it.

Autism Mom™ reports that she is “part of autism”

We are not our children. Our children are not us. We must do our best by/for them, WITHOUT making it about us.

The Bullshit Fairy

Earlier today, after seeing a post on The Bullshit Fairy’s facebook page, that protests mothers of autistic children taking on their child’s diagnosis as their own and referring to themselves as Autism Moms™; One of these mothers declared that she was entitled to use this name for herself, disregarding how #actuallyautistic people feel.

She began by stating that she doesn’t agree with this perspective of using the term Autism Mom™,  and announced that because her autistic son is part of her,  she is therefore “part of Autism.”

2016-03-30 Autism Mom Troll ss2

After being questioned by other autistic people, she reported she had a stroke a few years ago and “suffered a lot of the same conditions” as her autistic son and said, “So YES, I KNOW what it is like to be autistic without the label.”

I assume the doctors at the hospital where she was treated for stroke were not able to provide her with an autism diagnosis/label at…

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the perfect addendum

A most important thing

a diary of a mom

In September of 2014, I wrote the following post. It was hard to write then and it’s hard to share now. Not because I don’t believe it to be true – I do, fervently – but because I worry that I’m not the one who should be saying it. But I am. Because this time of year more than any other I’m asked, “If not on chasing a ’cause’ or a ‘cure’ for autism, then where would you spend our research dollars?”

This, among other places that I’ll detail at another time, is where. And the addendum at the end of the post? That’s why.

Screen shot 2014-09-23 at 6.45.21 AM

{image is a photo of Brooke standing on Luau’s shoulders on the beach in Newport, RI. She looks as though she is flying. Photo courtesy of Connerton Photography’s magic lens. All rights reserved.}

During the talk, Dr Draper asked a ten year-old girl to…

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