My work gives me the opportunity to witness the importance of autism research first hand—through our work with affected children and their families.
So this year, when I registered for the New York Marathon, there was no question but that I would run to raise funds for Autism Speaks. When I set the goal of raising $2,000, our clinical coordinator jokingly asked our lab director, Charles Nelson, if he was willing to shave his mustache for Autism Speaks. [Editor’s Note: Renowned in the autism field, Charles Nelson, PhD, is a professor of pediatrics and neuroscience at Harvard Medical School, the chair of pediatric developmental medicine research at Children’s Hospital, Boston, and the recipient of three past Autism Speaks research grants.]
Now you have to understand that Chuck grew this mustache in 1978 and had NEVER shaved it off in all those years. He agreed on the spot—but only if I upped the fundraising ante to $5,000. He laughed, thinking there was no way I could raise that much money.
Soon after that, we created a Facebook group called: “Want to See Chuck Nelson without a Mustache and Support Autism Research at the same time?” The kicker was the “Pub Night” fundraising event at Clery’s, in Boston. That got me over the top.
True to his word, Dr. Nelson shaved his mustache in support of Autism Speaks on October 7th! “Talk about being exposed…” he said. Doesn’t look bad, does he?
This ‘In Their Own Words’ author is Jess, who can be found at Diary of a Mom. There she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
It had been a long, full, long day. Yeah, I know I said long twice.
We had walked (or in Mama’s case, more accurately hobbled) around the track at the Autism Walk. We – or at least the smaller half of the we - had jumped in the bouncy house until Mama finally had to send Miss N in on a retrieval mission. We’d played in the ball pit. We’d eaten pizza at ten a.m. We’d visited with Grammy and Grandpa DD. We’d gone out to lunch. We’d had a grand old time with Miss N and Yo, B! Hell, we’d even lost a tooth for good measure.
We – or the bigger of us at least - were ready for sleep.
We were lying on Brooke’s bed, snuggling together in the dark.
After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day – I wondered what she’d taken in.
Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.
Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?
Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?
Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?
Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.
Did the word sink in?
Did she connect it to herself? To us? To our family? To who we are?
Does it have any meaning for her at all?
Did she notice it that day? Over and over and over again?
“Hey, Brooke,” I asked into the darkness, trying to sound casual.
“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.
“Do you know that we go to the Autism Walk because you have autism?”
I was trying hard to sound cheerful – to keep the words light.
It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.
She didn’t answer. She was too busy fiddling with my hair.
I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.
“Baby, do you know that you have autism?”
I’ve asked this question before. I’ll ask it again.
It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.
Add that internal monologue to the list of my greatest fears.
“Do you know what that means, Brooke – when Mama says that you have autism?”
She answered. On some level, I was getting through.
I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.
“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”
“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”
She has the right to a community. If I can help it, my girl will know she is not alone.
“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”
I smiled at her, though she couldn’t see me.
“Right baby girl, I’m sure she will.”
She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.
I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.
We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.
And wouldn’t you know it? In the morning, under her pillow, there was Blue.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
This guest post is by Nancy Miltenberger, Chair of the, 2011 Lehigh Valley Walk.
As any parent or grandparent knows, hearing that a child you love has autism is devastating. I have heard it twice. My twin grandsons, James and Thomas are both on the spectrum. A few years ago, James was also diagnosed with leukemia. Fortunately, when the oncologists told us about his disease, they also handed us a road-map for his cure. Three years and two months later (and many spinal taps, rounds of chemo, transfusions, and more) I am thrilled to report that James is cancer-free. If James had been diagnosed with the same type of leukemia 60 years ago, his story may not have had such a happy ending. In 1950, the cure rate for acute lymphoblastic leukemia was about 4% and in 2010 it is about 94%. What a difference!
As we all know, there is no cure for autism… yet. But the model for leukemia gives me hope. I am so thankful for James’s wonderful doctors and all the funding and research that went into pediatric cancers over the last few decades. Now, we need to turn our attention to finding a cure for autism. It affects far more people than pediatric cancer, diabetes and AIDS combined. I want to do my part to see a cure for my grandchildren and others like them. That is why I Walk and why I am the chair of the 2011 Lehigh Valley Walk Now for Autism Speaks. I recently heard Dr. Geri Dawson, the Chief Science Officer of Autism Speaks, and I now have some hope for finding help for my grandsons and our family. I feel that by supporting our local Walk I am helping to fund the research that is needed to help pull my grandsons and countless others like them from the isolation that is autism, and help them to lead normal lives.
This post is by Sharon Boyd, the Advocacy Relations Coordinator for Autism Speaks.
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has” – Margaret Mead
I read Margaret Mead’s words for the first time shortly after my son, Austin, was diagnosed with autism. At the time I didn’t realize just how much her words would become a part of my future.
Like many children with autism, Austin was denied insurance coverage for his autism treatments. No matter how hard I tried, without private insurance coverage, I could not get my son the treatments his physicians prescribed. I finally quit my job as an RN to lower my income, so that we could qualify for Medicaid and provide him with access to speech therapy. It was obvious to anyone that big policy changes were needed if our kids with autism were going to get the care they needed.
The more I networked with other families throughout my state, the more I realized there must be strength in numbers. We needed to unite our voices. We needed to become that “small group of thoughtful, committed citizens” that Margaret Mead spoke about in order to get our legislators to listen and “change the world” for our children with autism.
When the autism community uses one voice, our legislators listen. They hear us loud and clear, with one booming voice and they too become committed to the policy changes our families so desperately need. This is what happened in my state of Florida when we finally passed our autism insurance reform bill in 2008. It is what has happened in 22 other states across the country that has passed meaningful autism insurance reform laws. And it is what happened when the autism community came together to pass the Combating Autism Act in 2006. Strength in numbers.
Autism Speaks holds walks across the country that raise funds for autism research. But these walks serve another purpose as well. Every walk has an advocacy booth that is part of the Autism Votes initiative. This fall the volunteers at the Autism Votes booth at every walk will be there to provide you with information on the important pieces of pending autism-related federal legislation, such as the ABLE Act, which seeks to allow families of a child with a disability to save money, tax-free, for future needs as an adult. Most importantly, at the Autism Votes booths this Fall, you will have the chance to sign a petition in support of the ABLE Act, and/or other autism-related federal and state legislation. Your signature on this petition will join with the hundreds of others collected at your walk and, acting as a united message from a united voice, will go directly to the legislators who can bring about the changes our families need.
So, be sure to stop by the Autism Votes booth when you attend an Autism Speaks walk this fall. You can’t miss it…it’s the only booth with red, white and blue streamers, balloons and other patriotic decorations! Or find one of the Autism Votes volunteers with a clipboard that will likely be walking through the crowd asking for signatures.
Signing a petition at the Autism Votes booth will take you just one minute. Just one minute of your time to become part of a united voice in the autism community. A simple minute to become that committed citizen and change the world for your child or a child you know with autism.