Friday, April 27, 2012

Some true heroines (aka a couple of my fav blogs)

This was another post I was saving for Autism Awareness month, OR as I've heard it termed "Autism Acceptance Month".  Today I realized April somehow evaporated. So here it is.

One of my heros in this quest of learning to fully accept even embrace Aaron's "specialness" is Kelle Hampton. I'm sorta addicted. I follow her on instagram and some days I feel like I know what's going on at Kelle's house more than my own! 

If you've not read her fabulous blog, or heard of her new bestselling book here's a
 Beautiful video recapping her story

Personally, I'd love to crown Kelle queen of special needs moms (and if that happened to "dethrone" Jenny MaCarthy...oh well;)

Kelle is all about process and the healing of acceptance --not a lie-down acceptance but a peace filled existence of choosing to see the joy!

 I admit, early on in our own journey, I had, a little, what I termed in my head "downs-envy". 
( I almost didn't right this is fear it would offend here's hoping the spirit of intent shines through)

I'm sure the visibility of downs syndrome gets old fast, but I almost longed for some indicator of Aaron's diagnosis to give his some context to his behaviours, other than people assuming he was "misbehaving". With autism there's no identifying trait that inform people to reach into the kinder gentler part of them, to be more understanding and tolerant. I understand a lot of people have worked VERY hard to help shape that reaction to other more visible disabilities and that even still, those who look different can, sadly, be as mistreated as those who act different. 

I think it was just my own adjustments to who we now were as a family. Learning how to shrug things off a bit better (still working on that), as well as growing past an insecure need for everyone around me to "get it"--which meant not having my soap box quite as handy, and my feelings a bit more tucked under my sleeves. I've had to let go of an image of what I thought "well-behaved" families looked like and try and be more at home with who we all were (one of many lessons Aaron continues to try and teach us).

The other aspect I envied in individuals with down syndrome was there was no notion that they were going to some how shed that extra chromosome.

I remember a chat I had with my brother in law once, while he lived with us and was working as a community aid for a few older autistic kids. 
"Nobody looks at a downs kid and says stop having downs syndrome!" he said with some genuine frustration.
But we do expect and ask autistic kids to change. We do it all the time. Because we believe behaviour is changeable. And we've decided what behaviour's are acceptable and what are not. A person with downs syndrome looks different, can you imagine someone suggesting they surgically "fix" that difference? But because Autistic kids behave differently, we have decided we can "fix" it. 

Now don't get me wrong-- there's a big distinction between helping someone reach their potential and trying to change things inherent to who they are. 

Kelle's daughter Nella, is BEAUTIFUL! Partially because her mamma sees her that way and because shows the world that she is. 

How can I show the world Aaron's behaviours are in a way beautiful? That they are unique and at times bewildering, but kind of fascinating in their own, often brillant way?

Kelle's such a strong, hope-filled voice. And I'm grateful for her bright example.

This post was the one that made me want to write about her:

 The part about her husband reminded me sooooo much of Ben and I (other than the fat that we've NEVER been able to call each other "babe" with a straight face). Here's an excerpt:

A few months ago, out of the blue, Brett asked me "Hey babe, will Nella be smart?"

These questions always catch me off guard. Brett's so very go-with-the-flow and doesn't really have a lot to say about Down syndrome. He's always said "Let her show us who she is" and he's pretty unphased by any information I present. Between the two of us, I'm definitely more the research girl. He says Nella's a better teacher than books, and he's right. But I wanted to address the situation appropriately.

He must have sensed my confusion as he quickly followed with, "I'm totally okay if she isn't smart. I just want to know...could she be smart?"

I formulated my response thoughtfully. "Babe, I will never say what the future holds because I will never put limits on my child. I think she's brilliant, but she might not be able to show it quite like Lainey does." Feeling the need to maybe soften the blow or prepare him a little more, I continued. "Adults with Down syndrome generally have a child-like mentality, Brett. You know that, right?"

He stopped and thought for a moment. "You mean, when she's older, it will be like we still have a kid, right?"

I braced myself for sorrow. "Well, kind of," I answered.

And I waited.

He raised his head and his eyes met mine. He was beaming, smiling, excited.

And, with tears, he finally said, "That is so awesome."

So grateful for those in this world that instead of seeing the difference, 
see the awesomeness!

Herione #2:  Shawni from 71toes

Early in my motherhood journal (thanks to my mother-in-law) I read a lot by the Linda and Richard Eyre... especially "Sister" Eyre's books. They remain some of my favorite parenting books.

obviously I've read this one
 a few times
So when I friend told me their daughter Shawni had a blog, well I was all over that. It was so neat to see the little girl I'd seen in grainy 70's pictures in her parents books, be "all grown up."

You see, Shanwi, aside from being an amazing, inspiring, empowering mother of five, who seems to just do everything but photograph it amazingly too, she's a special needs mom too. Her youngest Lucy was diagnosed with a very rare genetic syndrome called Bardet-Biedlwhich, which unless remedies and treatments are found, is almost certain to cause blindness.
I'd already doen a draft on Kelle but then when I read Shawni's latest, it made me want to make my heroine post a duo. 

She described all waves of emotions that slosh through a parents heart during an IEP/IPP meeting. One moment your heart drops with the realities of what your child faces constantly and then the next it swells with gratitude for those who, in kind amazing ways help so much, and then surges even higher with awe as you get a small sense your child's incredible strength. I love how she describes her final "swell":
My heart swells up, the room comes into view again and I know everything is ok.Perhaps not the kind of "ok" I had always anticipated, but maybe it's an even better "ok" than I knew to expect. Because I never knew that hard things could bring so much good.

I cried through this post, mostly because it was so familiar. 
But also because "hard things" are so important. (Even "the hardest"!)
It made me realize I'm glad Aaron is my oldest; that we didn't have to wait for the lessons and unique perspective he offers our family, so that they can impact our parenting and our younger kids all along the way. I'm sure Shawni's big kids learn from Lucy too---I just got this feeling as I read HER experience that OUR experience is so tailored specifically for our family, as is hers. So while we learn and are touched by others determination and courage, it is our story that makes or breaks us. 
I'm so grateful for a life that's meant for me, challenges and all. 

Mostly, I am so so so very glad for other's who share their stories and help me want to face my own story with even a fragment of the grace and light that shines through them.

For these light-filled examples, and many others, I am thankful, everyday.


Just Rhonda said...Best Blogger Tips

I was talking to someone this past week at the park (you'd really really like each other - in fact I call her my Raymond Chelsea since you are both so lovely and spiritual :) ) and we were discussing how hard things really are the things that are the same between people. That's what draws us and makes us all the same. We've all been through, are going through or going to go through hard things. And through those we meet each other and become closer people.