this is our autism

Image from Toys R Us

**

Toys R Us, Saturday

You can’t miss the posters. The puzzle pieces – now instantly recognizable – are everywhere. Every cashier wears a pin that says “Be A Hero For Autism.” It’s that time of year again. I am grateful. And torn.

Brooke and I have come to pick up one last birthday gift for her sister. We are waiting at the customer service desk while the manager searches out back for the particular toy we need.

The day is warm, so people have come out in droves. The store is packed – crawling with kids and their parents optimistically buying toys for the Spring.

A mom pushes an unwieldy Little Tykes box across the floor. Scratch. Drag. Heave. Scratch. Drag. Heave. A dad is talked into a pink scooter, complete with pink Hello Kitty helmet for his daughter. “Daddy, Daddy, it’s PINK and Joey can’t ride it cause it’s MINE, but he won’t want to anyway cause it’s PINK!” A deliciously happy five-year-old squeals with delight as he picks out his first big kid bike. The kick stand scrapes across the floor as he moves it again and again and again with his foot. Creak. Scrape. Squeal. Creak. Scrape. Squeal.

Brooke points to the door, frantic. It’s too much.

I tell her that we need to wait for the manager to return with Katie’s toy and then we can go.

A toddler behind us yells to his mom. Brooke grabs my hands and clamps them over her ears. She pushes them in, hard. I stand behind her and squeeze, hoping the pressure will help. I try to bring the manager back by sheer force of will.

A man stands next to us with a baby. Brooke asks the baby’s name. The father tells her, then asks her a question in return. She mutters under her breath. “What is Dorothy thinking about today?” I prompt her to answer the gentleman. She does, then returns to the Elmo’s World script playing out in her head. “Ya da da da!” The father is confused. We move on.

Brooke sees herself in the security monitor overhead. Her body relaxes just the slightest bit as she lifts an arm, then watches in delight as her video doppelgรคnger follows suit. I lift one elbow. Then the other. She giggles. We begin a series of moves – arm, arm, elbow, elbow. Right leg, left leg. Head goes side to side. Spin around! Squeeze your mama! Squeeze your baby!

We watch ourselves in the monitor. I am still holding her ears as we move. Our grainy images carry out their elaborate dance on the screen. We look absurd. I don’t care. She yells, “Again!”

The manager comes back, thank God carrying the toy that we came for. We thank her profusely and head to the gift wrap aisle.

Brooke hones in on an Elmo gift bag, launching into an inventory of Sesame Street friends that aren’t on the bag. “Where’s Zoe? Is she there? She’s sleeping inside the house. Where’s Abby Cadabby? Is she there? She’s sleeping inside the house.” We could do this all day. I gently guide her to something that might be a little more appropriate for Katie.

We get on line to pay for our purchases. The cashier is having trouble voiding something from the last sale. We have to wait while she sorts it out. AGAIN. Brooke has been a trooper, but we’re running out of rope.

A baby cries and she’s over the edge. She finally lets loose a loud, shrill scream. I crouch down and cover her ears. “Mama’s got you, baby, it’s OK. I’ll hold your ears again, all right?” By way of response, she pushes my hands into the sides of her head. The baby cries again and Brooke yells more loudly. She’s done.

I notice the cashier’s link to the PA system. I’m tempted.

“Tap. Tap.Tap.

Ahem ..

Attention shoppers!

Just a minute of your time?

Thank you.

Thank you for hanging the posters. Thank you for giving your money to help. Every bit helps to fund research and to provide support for kids like mine.

But folks, if you want autism awareness – if you REALLY want awareness, THIS is OUR autism. This little girl right here who is working so hard just to be standing in a God-damned toy store. This place that she loves, yet can barely tolerate.

This beautiful little girl who never would have lasted this long just a year ago. Who would have been outside in a melted puddle of tears by now – her mama trying desperately to soothe her frayed nerves. This incredible spirit who is determined with every last fiber of her being to overcome her challenges. This funny, silly, generous, brilliant little girl whose mama dances in security cameras and holds her ears and loves her with everything she has and everything she is but just isn’t big enough to chase away the demons and make it all OK.

This little girl whose mama would give anything to ease her baby’s way in the world – if only there were something to trade – some toll to pay.

THIS is our autism. Our autism is messy and it’s complicated and it doesn’t fit on a poster or a button or into a thirty-second PSA.

This little girl, who struggles to find the right words, but whose mama is so grateful – so damned grateful – because she knows that it is by no more than the grace of God that her baby HAS words. Because she knows so many more who don’t.

This little girl who has a team of people supporting her, teaching her, loving her. Who tries so hard to get by in a world that is so foreign.

Who tries so hard. Period.

THIS is our autism.”

I don’t, of course.

Instead we leave the store, having accomplished what we came to do. We celebrate our victory as we walk hand in hand to the parking lot. I revel in the fact that my girl can hold my hand. Nearly two years later, this small thing is still not small.

I take a deep breath. My baby smiles and leans into the wind. She is happy to be outside. She looks free. I am overwhelmed with gratitude.

Thank you to Toys R Us for joining in the campaign to raise autism awareness. If you ever want me on the PA, just let me know.

27 thoughts on “this is our autism

  1. I thought my Katie was the only one who did tv shows and movies in public! I curled up in bed with her the other day and she tucked her feet between mine and began giggling to herself and reciting a little einsteins episode (she is able to identify fine art and composers!). Since she is 12, I have lived your life. I can tell you this, each year you will look back on the past year and think, “I can’t believe how far we have come!” In kindergarten, my daughter could not form a sentence. This past Sunday, my husband and I sent her to her room for talking too much! Yes, the pain is still there and sneaks up on you like a panther only now I have learned to tame it and put it in its appropriate place. Yes, there are still days that bring me to my knees, but there are many more days that I rejoice that I have the privilege to have this amazing girl in my life. Her twin (typical) has commented that his friends just aren’t as lucky as him cause they don’t know how funny Kate is. Maybe one day they will learn!

    xoxo!
    Becky

  2. How many of us have gone places with our kiddos and have experienced fear and trepidation? Probably too many to count. I can remember the days of being in a store with A, and being on guard, ready to ditch the whole thing and goooooo. Hyper alert and hyper vigilant times 100. Rock on Brooke, great job and mama WTG!

    Now as I recall, you have a lovely voice, and would make a great PA announcer, for Toys R Us and even, dare I say, the Celtic’s. Yes, it’s that time of year again, AND I am compelled:)
    xo ๐Ÿ™‚

  3. You really need to put a “Hankie alert” on your posts, you know. *sniff* Every time I read about Brooke’s sensitivity to so many noises, I wish so desperately that I could give her some of Nik’s INsensitivity to them. He doesn’t even flinch a fire truck goes by, sirens blaring. If only we could blend the two so she could tolerate more and he would be safe from harm. *sigh* This is our autism.

  4. Let’s see if I have the words to do this.

    My services through the state Waiver were supposed to start yesterday with an intake appointment with the service provider, then the community inclusion specialist was to take me to bible study on Wednesday morning.

    The supervisor called an hour before our meeting to tell me she basically just got caught up and never called my CI and therefore maybe we shouldn’t meet today. She repeatedly asked if I could meet tomorrow; I cannot. She went back and forth on today, confusing me. She got the CI on the line, and the CI was really, really frustrated and I felt like it was my fault, somehow. Oh, and that bible study? They can’t take me, because the CI isn’t available then.

    Cue meltdown. Not a big one, but still. I was in public, at partial, in front of people. The woman on the phone called my mom to apologize for upsetting me. My therapist was kind of confused about the whole ordeal.

    And I just want to say, what do you think happens? Did you not see the “autism” on my chart? This happens everyday. You just happen to be seeing it today. THIS is autism.

    • Hang in there Lydia! So sorry you had to go through that. You are right-they should not have done that to you. I am very impressed that you were able to share this with us! Even Mom’s of kids with autism have meltdowns in public, in front of people. It wasn’t your fault. Thank you for sharing your words with us.

      Mom to 5 year old Triplets with Autism

  5. I hate that feeling when you can see you are almost at the end of the rope but yet almost finished with your task….That would be a great announcement! I think you SHOULD do it sometime ๐Ÿ˜‰ Once when Daniel was 4 we were trying to escape a Toys R us in full out melt down and I came to the doors not realizing they were exit doors, he was flailing and screaming and everyone was looking at us like “what the heck”, I had my one year old in tow (somehow) and the doors wouldn’t open bc they were exits….I finally started screaming SOMEONE OPEN THESE DOORS!!!!! and they did. I have never been so relieved to get out of a building.

  6. Jessica,
    This description of a trip to Toys R Us reads like my biography with my 6 yr old Arlo. I can’t believe his doctor still insists he is not autistic. A year ago, I took matters into my own hands and put him on a GF/CF diet and we now have a boy who loves to go to festivals and participate in the activities and play with other kids. Before, attempting these things with Arlo only produced massive meltdowns so, unfortunately for his non-autistic twin brother, we did not often try these activities. He still has a hard time with the noises you described and grabs my hands to press hard over his ears. No problem, at least he now wants to throw the little bean bag through the cardboard clown’s mouth. That’s our autism.

  7. Once again a beautifully written piece. Your words bring comfort so that we know we are not alone. Like so many others we have had too many Toys R Us Moments to count. Thank you for sharing.

  8. I still feel like her at times, even being full grown. That is why I don’t go to crowded stores or indeed any crowded place where I do not have a purpose I can lock on to to distract me from the crowd. I wrote about that in Be Different . . . Did you read that part, about Doug Flutie and his event?

  9. You know what?? I think it would have been wonderful if you actually DID grab the PA and let some people know that Autism Awareness is more than a puzzle piece…. I think if people there could have heard it as eloquently as you always put it, they would have all been better from it!! Now I know that it’s not something that you could actually have done, but just the thought seems so fun!! Good for Brooke and her accomplishments, she’s getting there – one small step at a time!!

  10. I think that’s the thing that hurts: people who happily donate money to autism causes, but then give us the stinkeye because our kids act different. And I know that wasn’t necessarily your experience on the outing you’re writing about here. I just am afraid that people want to give money and then not have to think or see autistic kids and adults. I think your instinct is SO right on. More than anything else, I feel like we need true awareness and understanding.

  11. First… Hugs.
    Second…you are a rock star mama for standing in front of that video camera and doing the dance. WhatEVER works- and that was awesome!
    Third…print this. What you wanted to say on the PA. Print it and bring it back to that kind store manager and ask her to possibly post it in the staff room. I think it’s VITALLY important to share what autism really looks like and how different it is from child to child. Especially in places where they are around children every day. You never know what good may come of it. Worth a try, anyway. Awareness is great but unfortunately cluelessness is everywhere.

  12. And with your permission, I’d really love to print this out and ask the manager of my local Toys R Us to post it. Would you mind?

  13. I so appreciate the comments by JER and Lydia. I had the pleasure of meeting Carol Greenberg (Aspie Advocate) who is a self-identified aspie as well as the parent of a son with autism. she said something to me which I hold onto in the moments when I think about how damn hard it is to be Nik’s mama. She said, “Just remember, as hard as YOU think it is? It’s ten times harder for your child with autism.” Perspective is so important.

    I agree with CeeCee that you should share this with the store manager.

  14. LOVE this post!

    During a trip to Toys R Us last year, Boy Wonder was just barely going to make it through check out. His older brother was bothering him, which was not helping at all. As we were checking out, Boy Wonder saw the bright colored buttons of the card reader key pad. When I pushed the cart forward so he couldn’t touch it, we were done. The cashier asked if I wanted to donate a dollar to Autism Speaks. I almost laughed, thinking to myself “Would you like to donate a dollar to my son with autism that can’t speak. But instead, I sighed and politely said, “Not today.”

  15. I am sitting at the computer applauding you! **Clap clap clap** I use to care what people thought…but if dancing in the store, singing down the isles, and counting every thing in site makes it just a little easier for my son…I really dont care what people think or how silly I look! And I think you should have grabbed the PA too ๐Ÿ™‚

  16. Kudos to Brooke for working so hard and being able to overcome the near meltdown. Just being outside helped her and this is so BIG! Kudos to Mom for not caring what the rest of the world thinks when she does a “silly” dance with her girl. Go Brooke! Go Jess!

  17. Really, she’s made so much progress since last spring, it’s truly incredible! I think you should actually record that, and all Toys R’ Us stores should be required to play it on continuous loop throughout the month of April (now THAT would be autism awareness!). Beautifully written as usual!

  18. What a lovely post and, yes, tissue warnings please. ๐Ÿ™‚

    I work with many families with children who have Autism. I have taught my children to be patient and to be kind when they are in stores and see a child who is having a hard time because we don’t know where on their rope they are holding at that moment. It breaks my heart that with all the awareness campaigns and giving campaigns so many people still will look disapprovingly at a parent who is struggling to help their child through a meltdown – THIS IS AUTISM.. it doesn’t go away when you enter a store or a restuarant .. Maybe there is a way to get these awareness campaigns to hone in on the “awareness – every day, every minute of autism” and less on the “awareness – your money is needed to find a cure, help with treatment” part.. that is still so very important BUT I think what would help so much would also be the acceptance of our fellow humans when our child is having a melt down or needing of some quiet time before they can regain thier strength to go on in a hard and confusing world.

    Thank you so much for sharing this. Please continue to have that desire to pick up those PA systems and share with the world…

  19. A PA would be wonderful. Really. There is so much irony in the physical space that you were in. SO much awareness, but no real understanding. I’ve encountered sooooooooooo many people recently that want desperately to help, to do something, to learn more about autism, but they simply do not have enough access to our narratives. There is plenty of awareness these days, but not really any education. I think most people know what autism is, but don’t recognize it when they see it. There is much to be done to educate the world about our kids and their incredible and unique stories and needs if we are to create a more understanding and kinder world for them to grow up in. Thanks again for sharing, Jess.

  20. I hate going to Toys R Us so I can understand Brooke’s side. And I don’t have autism (I think anyways, lol). I wish someone WOULD do a PSA on what is is really like. Everyone knows about Down’s symdrome and other things, but our babies don’t have any distinguishing characteristics, I would rather have the understanding than a dollar. Thanks for once again putting my thoughts into words.

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