Monday, April 02, 2012

My niece Aubrey

I've never written about this before, however rest assured that my sister gave me permission.

Aubrey Grace • Summer of 2011

When she was 3, my niece Aubrey Grace, was diagnosed with an Autism Spectrum Disorder (ASD) a few days before Christmas.

Now she's four-years-old.

And friends, she's beautiful.

She's inquisitive. She's kind. Her voice is that of a teeny-tiny-mini-bird. She chirps. She smiles. She hugs. She sings. She laughs. She's a big sister. She goes to school and works with a team of therapists. She has a Mommy. She has a Daddy. She likes Dora. She's pensive. She doesn't sleep a lot. She's quiet. She's working to make eye contact. She smiles at bubbles. She hugs. She leans in when you kiss her.

And she's perfect.

She always has been.

Toddler Aubrey

But she's different.

Sometimes she has bad days. Sometimes she doesn't understand so she responds the way she knows how to respond. And sometimes that's different from how your four-year-old child, niece or friend might respond.

Don't stare at her.
Don't glare at my sister and judge her parenting skills.

Instead, please tilt your head to the side and smile at them. Offer your support through your eyes. Through your non-verbal and verbal communication to those who are with you.

Your smile means you get it.
You know that there's more than meets the eye. And you understand.

Because you know what it's like to love someone more than life itself, too.

Aubrey Grace - just hours old.

It's been 16 months since my sister and her husband received confirmation that their suspicious were in fact valid: their daughter is autistic. What does this mean?

Here's the definition:
"Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art. Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Increasing autism awareness is a key aspect of this work and one in which our families and volunteers play an invaluable role."
And here's what it means to me:

Aubrey needs compassion and understanding and respect. She deserves it. You see, 1 in 88 children is diagnosed as being on the spectrum. Autism is all around us, friends. It's not going anywhere.

We can't avert our eyes much longer. We need to learn more so that we can understand just why that particular cashier at the grocery store seems "odd" or that little boy down the street is "different".

Because these people, these sweet people, oh, they're so precious.

Aubrey, Ferg and I. Aubrey was about 18 months old.
--

As soon as Aubrey was diagnosed, I didn't know what I could do to support my sister, so I read. I was looking for positive stories about men and women living with ASD so that I could share them with my sister. I was delighted, no really... my heart was calmed... by reading stories of high-functioning people on the spectrum who are living productive lives alongside you and I.

I want that for my niece and I want that for others like her.

Aubrey, about 3.

Please, please learn more about this. 

And when you do, please remember the truth that I've heard so many times: "If you know one person with autism, you know one person with autism."

No two people have the same experience with this disorder. Nope, just as each snowflake is unique and incredible and special -- so are all men, women, boys and girls who are on the spectrum. So if you know "an autistic" kid -- he's not going to be anything like that little boy or little girl you meet next year. Remember that.

And I think we also need to remember that we have no idea what it's like to be a parent of a child with special needs. Read this blog post: "7 Things you need to know about a Special Needs Parent."

Summer of 2011
--

Over the past year I've watched my sister transform from being the grieving parent of a child sentenced to autism; embarrassed to tell anyone, to a brave, staunch, tireless advocate of her daughter.

I am so proud of her.

Taryn, you are incredible and there are no words... just no words for how I feel about you.

My sister posted this on her facebook page yesterday. And I cried.
 

Just a year ago, my sister wouldn't have told anyone that Aubrey had autism. Now she's telling all of facebook in an attempt to spread awareness.

RIGHT ON, Taryn.

And amen, sweet sister. Aubrey IS a blessing. And we all want the same things for our children, don't we?

So, help me honor Aubrey.

Make a conscious decision to never, EVER judge a child again.


Aubrey, last Friday

And please, spend a few moments today learning about this Autism Spectrum Disorder. Check out http://www.autismspeaks.org.

And if you're not already wearing one, change your shirt and put a blue one on. Today, ya'll - we're lighting it up blue. (More about that here.)

Aubrey Grace & Lila Ross - Summer of 2011

And if you're so inclined, please give $5 in support of Autism research on my Autism Speaks, "Light it up" site.

Click HERE for it. And search my name: "Kylee". (My last name is Broughton.)

It'll look like this.



--

Become a fan of Autism speaks on Facebook TODAY. Awareness, friends. Awareness. https://www.facebook.com/autismspeaks

--

More posts about my sweet Aubrey here.

Thank you for reading this.

9 comments:

  1. I love that you wrote this - and it's so very well written. All human beings, no matter what, deserve to be treated with dignity and respect.

    ReplyDelete
  2. Si se conociera la realidad del autismo, a nadie se le ocurriría más que asociarlo con “superación”, “esfuerzo”, “nobleza”, “cariño” o “sensibilidad”. 2 de Abril dia internacional de autismo :)

    ReplyDelete
  3. This is a very well-written and important post. The message Taryn wrote on her Facebook page is incredibly moving. I'm sure Taryn and Aubrey appreciate your efforts in spreading the word on awareness.

    ReplyDelete
  4. This post is amazing and so beautifully written.

    Your sister is amazing and so strong. (Being that she is the same age as my sister, I am always in AWE whenever you speak of her because I don't know if I could be as strong as she is.) And her words are so true, we do all just want the same things for our kids.

    And sweet Aubrey is AMAZING and so beautiful.

    Thank you for sharing this and thanks to your sister for letting you share this. It is so important and necessary to share.

    ReplyDelete
  5. I remember when Taryn came down here for Thanksgiving, she was pregnant with Aubrey. I thought she was so young, but yet calmed and peaceful.

    I've always thought God doesn't send you more that you can bear with. Even when sometimes we think we won't get to the other side. I've been there. But there's that 'land in between' where you stand for a while. Looking at the distance the way your life was before certain event occured to you. A close death, bankrupcy, cancer, infertility,autism... A life that you aren't getting back ever. Because everything has changed forever. There's no going back.

    I think that transition is the one where we can decide what we are going to do. Either stay in the darkness of our pain and sorrow, or walk with determination to the other side. Where the light is waiting.

    Chili Davis said 'Growing OLD is mandatory. Growing UP is optional'. I think your sister has grown. Evolved. I think she was chosen to do this. Because she is special, and DIFFERENT.

    For some reason, society has decided and taught us that DIFFERENT is bad. I think DIFFERENT is God's favorite word. The diversity in this world proves it.

    Inclusion, awareness and respect is what we need to learn and teach our kids. All mommas want the same for their kids, you are absolutely right. We want their HAPPINESS. We want them to feel loved, special and unique.

    I think Aubrey has all of that. She has the most expressive eyes I've ever seen. I believe I've told you that before.

    I'm sure she is going to do great things with her life. Your sister is already setting the example. She is the best representation of inspiration. She set the bar high for us, other mothers.

    I don't know Taryn at all. But knowing she is your sister, gives me enough information to know she is an exceptional human being. She shares your DNA.

    For some reason, this morning, without knowing today was Autism Awareness Day, I decided to wear blue. When I read your post, I smiled.

    MAKE A CONSCIOUS DECISION TO NEVER, EVER JUDGE A CHILD AGAIN.

    That's the most important thing I'm taking with me.

    I love you. Thank you for sharing. Information is powerful.

    ReplyDelete
  6. This is beautiful, K. So very beautiful.

    I was so happy to read every single word of this. To hear how Taryn is doing and even more, how Aubrey is doing. What a blessed little girl this is to have the Mommy she does.

    I love this. . . "If you know one person with autism, you know one person with autism."
    . . . so perfectly stated.

    Love to you all.

    ReplyDelete
  7. thanks for sharing the beautiful words and photos and for spreading awareness.

    ReplyDelete
  8. I found this post from Chicago Mom, and just wanted to tell you that I love this post. So well written. I too have a daughter that has autism. She is 3 1/2, and seems our stories are similar! Thank you for writing this, and thank you for honoring all of our extremely wonderful children! Your niece is just beautiful!

    ReplyDelete
  9. two of my five kids have aspergers.... the oldest (20) about to graduate culinary school in another state! We never thought this would be possible for him, but he has done so well. He has never even asked us for money! LOL!!! Thank you for posting this <3

    ReplyDelete

Leave your comment, please. You can always select, "anonymous" to not have to log in!

Related Posts Plugin for WordPress, Blogger...