autism

Owning it.

Owning his autism.

Last Sunday we went to the Imagine Walk for Autism. We told Casey beforehand that this was a day that celebrated autism, and that raised money for programs for people in the area who have autism. Of course, Casey immediately assumed that the day was FOR him.

And we didn’t tell him otherwise.

When we got there, the picture above is how the day went. He had to stow his Chewbacca Angry Bird in his shirt so he could walk around with arms in the air, yelling, “I HAVE AUTISM!” He stopped random people as we walked by and said, “Hi, I’m the guy with autism!” and then hugged them. I may have cried a little. Other people may have cried. It was truly joyful.

Casey knows he’s different. He started picking up on it a couple of years ago. It was hard for me. I didn’t want him to be different, and I definitely did not want him to know that he was. I wrote about it here. That post was a turning point for me. I was wrong. He is different.  If I couldn’t model acceptance and even how to EMBRACE autism for Casey, how would he ever accept himself? If his own mother hated the autism which made him who he is…how would he ever learn to love that part of him? Fortunately, I had wonderful friends who I met through this blog- some even through that post- that have walked me through this process. They gently guided me, never judging me, to a place of true acceptance and peace with Casey’s autism. To see what autism GIVES him, and not just what I felt it took.

When Abby was born, I really wanted to feel like she wasn’t different, I still wasn’t to the point of acceptance and understanding with Casey, so I lived in denial for a time with Abby, too.  For that time, it didn’t seem like she was all that different from my other babies.  She turns three next month, and that feeling has largely passed. She is different. Everything is different with her. The way she walks, the way she talks, the way she learns, the way she fights, the way she lives.

Eventually, Abby will know she’s not the same as everyone else.  People will see her Down syndrome before they see HER, and acknowledging that isn’t wrong, or sad, or anything. It’s just the truth. Being different isn’t wrong. Being different doesn’t mean she’s less. And, in a world where we are all fighting for our own sense of individuality, being different is GOOD. I just hope that she’ll accept herself and meet these people with the same enthusiasm about who she is as Casey did at the Imagine Walk. I can’t wait to see her, hands in the air, yelling “I have Down syndrome!”

Different not less, and down right beautiful

Saying our children aren’t different doesn’t make them any less different. And denying them the opportunity to embrace it, to own it, doesn’t do them any good either. We don’t need to tell the world that our kids aren’t different. We need to tell the world that differences are good.

In the immortal words of Dr. Suess: Why fit in, when you were born to stand out?

Why fit in when you were born to stand out? Dr. Seuss

 

17 thoughts on “Owning it.

  1. AMEN!!!! Down syndrome is as much a part of who my precious girl is as her big blue eyes, her sassy attitude and her heart stopping smile. Different isn’t just good…its amazing. 🙂

    1. I love this. It’s why I want to get Abby a doll that looks like her. I’ve heard people go NUTS that they’d make Ds dolls. To me, that’s AWESOME! I want her to be proud of how she looks along with everything else.

  2. Been thinking a lot about this lately… about owning the difference, and respecting the difference by not pretending it isn’t there. I really loved this post.

  3. I loved this post and your acceptance post you referenced. I greatly respect your honesty. The autism community is so all over the place and I enjoy that your site is safe and honest. Thank you.

    1. I REALLY appreciate you saying that. I feel like it’s hard to be honest in communities that are so divided. Both communities are fractured in a lot of areas. We work against each other in an effort to achieve the same goal. Blows my mind.

      I don’t always get it right either though.

  4. That picture of Abby! I keep scrolling up to see it again. So beautiful! This post reminded me that recently we had a missionary in our ward that has autism. His first Sunday there, he got up and announced that he has autism and then bore the sweetest testimony ever. It was beautiful. And also I really love how this post applies to all the motherhood stuff that’s been on my mind too. So thank you.

  5. An excellent point – I refuse to tell my daughter that her brother is different – he is still much to little. She thinks other babies are loud and obnoxious (because her brother rarely cries) and she knows that other babies crawl and walk but she almost acts like its weird because her brother doesn’t – we have only recently started explaining it to her and it shatters my heart – but I hate the word different – it comes with so much negativity. And I hate the word normal, as if they don’t measure up to some imaginary line and are excluded from the club. It just feels so negative. And I hate that – for them. I am glad you have taught them to embrace it – I hope I have the courage to one day be able to teach him the word different. Because to all of us they just are who they are 🙂

  6. I totally love this post, Lexi. This is why the whole “More alike than different” campaign has never sat well with me. It seems to equate “different” with “bad.” Different is just different, and you’re right – until we parents can accept and embrace this, how can we expect anyone else to?

    Thanks for writing this.

  7. Hi. At the risk of sounding stalker-ish, I want to let you know that I wish that you were my friend when we had our daughter 16 years ago. At that time, the internet was in its infancy, and I didn’t receive the support (and laughter) that I get every time I read your blog.
    Even now, I struggle with “owning it” when it comes to my Miss M. By sharing your experiences and your thoughts, you are helping me, even after all of this time.
    Thank you.

  8. I just stumbled over to your blog from your post on the Scary Mommy site, and have just read through a few of your posts. I love this one so much. My son was born different as well. His is a physical difference called Symbrachydactyly, effecting his left hand. I just wanted to say that I too went through the denial phase of not wanting to accept his difference, and even wanting to hide it. Didn’t want to talk about it, didn’t want people to know about it, wanted it to go away. When he was a few months old I changed my tune and we started OWNING IT. He is different, so why pretend otherwise? He is also awesome, and I feel like his limb difference makes him even MORE awesome. From that point on I’ve been shouting it from the rooftops, and am so proud to show him off. All of him. My hope is that my enthusiasm and pride will help him grow up to be proud of himself too, and that he will know he is different, but that it is OK!

    Your children are beautiful.

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