Since the beginning of my life as an autism mom I have been surrounded by versions of what people think our autism is. Well-meaning onlookers have mentioned that my daughter doesn’t count 5,000 items in 30 seconds like Rain Man or memorize the name of every US president like that one other person with autism they know. In the early days of her diagnosis, some questioned it so much that I questioned it myself, even though we were given the label by a nationally known autism expert who just happened to be a short car ride away.
But here is the thing, our autism is not their autism and it’s not your autism either. There is a saying out there autism parents like to use because it is so very true:
If you’ve met one person with autism, you’ve met one person with autism.
In an effort to help other autism parents feel more comfortable embracing how their children’s autism is very similar and very different from others, I wanted to share “our autism” with you and encourage other families to do the same. At the end of this post you can find a place to link up a post, new or old, explaining what autism looks like in your house. If you don’t have a blog you can leave your experience in the comments. Maybe you will click around and find a few families who are just like yours and maybe you can find a few that are completely different. Either way I hope opening up the conversation about what it’s really like helps others to stop judging from the outside looking in.
Our autism is non-stop episodes of the Food Network and knowing every bus route within five miles.
It’s visiting restaurants because Guy Fieri has been there and praying no one bumps into her plate.
It’s shopping for the same things for the last ten birthdays and throwing out driver’s ed advertisements.
It’s getting excited when she’s excited but already planning ways to help her settle down.
It’s explaining that there might not be enough room on my lap anymore and listening to the WHOLE yearbook read aloud for fun.
It’s my heart exploding when she’s playing a game with her siblings or being included by her peers.
But it’s also things not quite made for pretty pictures, like explaining to a store clerk that no, I don’t need security.
It’s balancing (or not) the needs of everyone in our family and a massive amount of guilt for not being able to make it work.
It’s phone calls, so many phone calls from school, and meetings, so many meetings about placements and goals and long term plans.
It’s crying in cars and a heaping dose of helplessness.
And it’s having no clue if I’m doing it right because every child is so very different and no one wrote a book about parenting this one.
Our autism is holding her hand and being happy for this moment that she is holding it back. Because we’re both hanging on the best we can.
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You always give me chills and bring tears to my eyes with your candid, honest, and beautiful way with words.
Love this!! Wrote a post to link up to this- http://a-word.bangordailynews.com/2014/07/16/home/this-is-our-autism/
I came over from Shell’s blog. I linked up my post about autism. My son has it. It can be difficult, but he’s taught me so much.
Added my post about our Autism at nine and a half years old.
http://www.imjustthatway.com/2014/07/this-is-our-autism.html
Great idea, and I’d love to join in, but I’ve mostly stopped writing about my son now he is a teenager, and that combined with autism means that I would struggle to be positive right now!
I totally get that, the teenage years have not been sunshine and rainbows.
Oh, and my son is OBSESSED with Food Network. Sadly, it has not inspired him to expand his interest in different foods. He still says he wants to be a chef.
Thank you so much for posting this. My almost-11 year old son has Asperger’s, and it’s so subtle that we only got a diagnosis for him last year. But long before that, I knew there was something – the rigid thinking, the list making, the memorizing of numbers, the obsessive arranging of things, the sensory stuff, the lack of resilience in response to frustration … But also this incredible brain and sweet spirit that I wouldn’t change for the world. I linked up above.
I love this link up and thank you for sharing your picture of Autism. I always remember a Twitter conversation we had about your daughter’s love of “reading” cook books as it is one of my favorite things to do! I check out cookbooks from the library so I can have new ones to read. They MUST have full color pictures or they aren’t worth reading 🙂
Such a generous, honest post. I admire how you seem always to balance the needs of your children with what you can teach/share with others.
It’s love multiplied. And you make such a difference in the lives of others.
Jessica,
Thank you for writing this and for hosting this linkup. I’m linking a post that I wrote about Preschool Autism Classroom graduation but hope to write another as well because I love this idea so much. I still have people in family say “but he doesn’t seem like an autistic boy” and I’m always like “um yeah. He doesn’t seem like Rain Man is what you mean.” Sigh. We’re teaching the world. You’re doing great things with this. Thank you.
Jess, this is such a great idea! I’m linking up an old post and hoping to find time to write a new one this week, too!
So glad you linked up, I was talking to the mom of a newly diagnosed son recently and all my old experiences came back. I finally felt ready to share what our days can really be like.
I remember when I told my son’s special education teacher that he had received a diagnosis of autism. She was shocked and in denial. After 16 years of teaching special ed, she hadn’t seen someone with autism quite like my son! Always fun to be an enigma, isn’t it?
Exactly! Life with autism is definitely never boring.
I love this! As I have struggled to help my daughter, who I don’t think has autism, but has traits here and there, I am realizing that there is no one way to parent a child who is “different”. Her anxiety means tantrums in church because she it isn’t her turn to sit next to me. It means screaming, even though she is “too old” for that kind of behavior. It means refusing to answer her teacher if she thinks she might be wrong. It means me constantly struggling to figure out how to raise her. Thank you for your post today.
My other daughter has severe anxiety and so other special needs and I totally understand what you are saying. There is no “right” way to do it all and it’s not easy to have to figure it all out one day at a time.
This is why everyone who meets you loves you, Jess. Opening yourself up so others can feel safe to do so, too? I don’t even think you get it how important what you do here is.
xo
What a fantastic post, full of acceptance and insight. Thank you for sharing.
This is beautiful and honest. I love that your wrote this.
Thanks for this truly honest post, Jess. I love to read about other families & what Autism means for their daily lives. For me, my brother’s Autism means savoring the little moments; the hugs & kisses. They’re rare, but so precious.
I hope my kids grow up to feel that way too. Right now there’s a lot of push and pull when it comes to giving and seeking affection. One day I know they will be old enough to understand it more and I hope they appreciate it too.
Thank you Jess. I did a post on my blog about autism in our family back in January 2014. Here’s what autism looks like for us:
http://lisaleben.wordpress.com/2014/01/24/our-autism/
By the way, if you look at my “blogs” page I have you listed as one of my favorites!
Lisa
Thank you so much Lisa!