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Posts Tagged ‘Diary of a Mom’

Weekly Whirl – Our Favorite Holiday Blogs!

December 23, 2011 2 comments

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

This week we are bringing you our favorite holiday blogs from across the web! We would like to wish you a wonderful holiday and a happy and healthy new year! 

Autism Christmas: Different but not less*
“Around the world families will be awoken by small children in the wee hours of the morning begging to see what Santa has left them in their stockings and under the tree. Later they will welcome guests or perhaps travel to see extended family for a special Christmas meal with all the fixings.” -Adventures in Extreme Parenthood

Nate’s Hanukkah list
“Nate isn’t one for surprises. He likes what he likes and that’s that. So when it comes time for his birthday, or Hanukkah, he types up a list of what he wants and we order it. The package gets delivered, he files his new stuff away with little to no fanfare and it’s over almost before it begins.” - Jeff Katz from Autism Support Network

About the Tree
But the past couple years she has decided to ignore the Christmas tree completely. Like… Meh. I am not going to pay any attention to these crazy people putting a treein a  house. Rearranging my living room and oohhing and ahhing and carrying on and putting stuff under it that nobody can play with and stuff on it that’s not even fruit. If I can’t climb it, jump on it, hide under it, spin it, or eat it, it’s of no use to me. Tree, shmree. Whatever people.” -Rhema’s Hope

Christmas 2010
“I’m remembering a day that worked. A day in which every member of the family participated in the celebration of the holiday in his or her own way. A day upon which compromises were struck and expectations were sent out to sea. A day in which any unnecessary demands were dispatched. A day when small prizes were treasured and time was valued above all else. A day that never would have been possible just a few short years ago.”
-Diary of a Mom 

I HAVE A LITTLE DREIDEL (FOR AN SPD HANUKKAH)
“Any holiday can disrupt a family’s routine. One that is eight nights long can really change things up. My son, with all of his sensory issues, can’t sit through an organized Temple Tots celebration or anything like that. So for a successful holiday, we’ll be doing all our celebrating at home, just like I did when I was a kid. And this year, we’ll be making our Hanukkah sensory friendly.” – Alysia from The SPD Blogger Network

Christmas Magic
“Life as a special needs child is tough.  When she role-plays, I’m at once elated that she is developing her pretend play skills, and dismayed that her doll is “going to therapy” day after day. Childhood should be about wonder and magic, not mundane, routine therapy. So at this time of year, I find it even more important to put the wonder back into her life.” – Spectrummy Mummy from Hopeful Parents

A Season of Difference
“Schuyler understands how tribes are formed, I think, at least on some visceral level.  And rather than feeling overwhelmed at how we are spiritually out-of-sync with most of those around us, she is encouraged by our little pod of difference.  In her own way, Schuyler understands the concept of family better than most.” -Robert Hummul-Hudson from Support for Special Needs

Early Hanukkah
“Jacob actually yelled “Happy Hanukkah!” to everyone this year instead of “Merry Christmas!” which he used to be wont to do, as there is so much more of that in the world around him to catch his echolalic attention.”  - The Squashed Bologna

Autism’s Season of Hope
“It dawned on me that this could only mean one thing:  perhaps the experts had it wrong.  Perhaps it was actually his profound attachment to me that made him believe I was all-powerful, responsible for the lights and everything else around him. Perhaps it meant that Nat – though profoundly autistic – was deeply connected to me, after all.”
Susan Senator with a forward from Lisa Belkin

Wonderful Christmas Time
“Last year, a few of my friends from my support group were talking about getting their kids’ pictures taken with Santa at the mall.  Or rather, not getting them.  The lines, the looks, the sensory overload…it was all too much for their kids.”  - Try Defying Gravity

The Spectrumville Christmas Letter
“It’s that time of year again to share with you our adventures in this journey we call life. 2011 has been another year of magic and wonder…” – Erica from Laughing Through Tears 

Steve Jobs: 1955 – 2011

October 6, 2011 12 comments

With the sad passing of Steve Jobs yesterday, Autism Speaks wanted to take a moment to recognize the enormous contributions he and Apple made to the autism community. Jobs brought touch screen computing to the masses, and as a result of the iPad and the many other tablet and touch screen devices that followed, he helped many affected by autism achieve a degree of independence that would simply have been impossible without that technology. He was a one of a kind entrepreneur, inventor and innovator, and we felt it was appropriate that we take a moment to recognize his extraordinary life, and to thank him for the contributions to the autism community. RIP Steve, and thanks.

If you would like to share your thoughts, memories, and condolences, you can email rememberingsteve@apple.com

Here are two blog posts from the autism community that celebrate Steve Jobs:

Diary of a Mom remembers Steve Jobs through the eyes of an autism mom, in this post.

Squidalicious thanks Steve Jobs on behalf of her son Leo and the rest of her family here. Leo was featured in Apple’s iPad: Year One.

In Their Own Words – Seeking a Connection

August 17, 2011 28 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism. 

As I read  a diary of a mom’sa pink sock sorry,’ I immediately fell back to my younger self trying to connect with my older brother Jeff. I understood what it was like expending endless amounts of energy just to have my brother see me. It seemed back then he just never did. Like my friend Katie, I just wanted to love my sibling.

For years, we worked to have Jeff let us in and for years he wasn’t ready. He used to watch the television with his face practically touching the screen. From the moment I could stand, I would try and wedge myself between him and his object of interest, always to be knocked over. My oldest brother Tom and I never stopped loving him – we actually became more fierce and protective.

My mother is a very talented photographer and so much of our life is captured on film. The photos over the years show us clinging to Jeff. He is either staring off into the distance or running away. I think they are beautiful. They are honest. That is how it was.

Eventually, he came around. Now he can’t get enough of us! But there are times when we go back to the old days, and I have to respect his need for space. He knows that I love him and I’ll be waiting when he is ready.

The photos look more like this now.

Jeff is twenty-six, which comes with a whole new set of challenges. We made it over the hump of him transitioning into a group home. It is more than a year later and we are still making adjustments. To be honest, I don’t know that we ever will fully adjust. Despite that, we will try and keep moving ahead giving Jeff the most productive and full life possible.

I know as time wears on Jeff will need me, but in truth, I will need him so much more.

“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 editors@autismspeaks.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.

What I Heard

The author of this post is Jess, who can be found at Diary of a MomThere 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 ten-year-old, and eight-year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
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Last Thursday evening, I attended a talk at Boston University with Dr. Geri Dawson, Chief Science Officer for Autism Speaks. What follows is the letter that I felt compelled to write to her after hearing her speak.

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Ed note: I have written before about Autism Speaks and why I have stuck with them through some difficult times. If you’re interested, please click –> HERE <– to read a post that I believe pretty well sums up my position.

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Geri,

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It was such a pleasure seeing you last  week . I’ve never been one to attend a science lecture – at least not on purpose. But of course, I do a lot of things these days I never thought I would. (Like saying, “Yes, we met atthe White House.“)
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Life has changed.
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So I actually thought I was looking forward to listening to you speak.
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Lady, I had no idea.
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You proved that night that Autism Speaks is not just speaking, but listening. You made me, as a parent feel like a partner. You made it abundantly clear that you have taken in what you’ve heard from the community and incorporated it into what you say, what you do, how you think, and where you spend your (our) time, energy and money.
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I heard it in the Vision Statement, newly reflective of the diversity of perspectives within our community. In words carefully chosen to recognize and embrace radically different – even opposing – views on cure and acceptance. In a driving theme that seeks to unify, not further divide.
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“A world in which suffering because of autism no longer exists.”
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Amen.
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I heard it as you espoused the values that drive your research. Urgency – above all urgency. “We CAN hurry science,” you said. Scientific Excellence ensured by rigorous standards and consistent and in-depth review.Families as partners. Above all, I heard it when you referred to the individuals affected by autism as True North – always the guide, always the driving force of all that we do.
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I heard it as you talked about dissemination – the need not just to research, but to execute. To share knowledge, best practices, and to MAKE INNOVATION IMMEDIATELY ACCESSIBLE TO THOSE WHO NEED IT NOW.
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I heard it as you talked with pride about ’buying careers’ - when you told us with obvious pride that while 85% of AS funded fellows were brand new to the field of autism research, 95% remained after the fellowship and 100% – every single one - credited the AS fellowship with the decision to devote their careers to autism research. I had to process that for a while. 85%.
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I heard it when you talked about the leverage of funding from grants. When you told us that federal funding, private grants and other sources added ten dollars to each dollar spent by AS on the first 107 grants seen to completion. Ten to one.
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I heard it when you said the words I use constantly – “There isn’t AN autism. There are autisms.” The place came this close to sounding like a Baptist revival as I nearly shouted “Amen, sister! Preach on!” from the audience.
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I heard it as you connected the dots that so many parents have been connecting without support when you said, “Autism is not just a brain disorder; it is a whole body disorder.” Did you see me nearly trembling in the audience? YES, I thought, YES.
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I heard it when you said, “Behavioral challenges can be due to underlying medical conditions.” I thought I knew how badly we all needed to hear that reflected back to us by those with the power to affect change. I underestimated the emotional impact of hearing it out loud. It turned out to be pretty intense. Validation can be like that I guess.
I heard it as you talked about sleep issues, seizures and epilepsy, GI disturbances, food sensitivities and depression and anxiety. I heard it as you said, “We are working on understanding the obvious connections between the gut and the brain.” and when you talked about the M.I.N.D Institute GI study which you funded recently to the tune of nearly $800,000.
I heard it when you talked about the need for comprehensive care. When you talked about the Autism Treatment Network’s (ATN) academic center model. I heard it as you talked about these centers of excellence combining specialties in neurology, pediatrics, psychiatry, GI, sleep, genetics, pain and immunology and the need to create so very many more. I heard it as I said under my breath, “Yes.”
I heard it as you talked about the need to investigate nutritional deficiencies, bone density issues, creatine deficiencies, iron deficiencies, oxidative stress, mitochondrial disorders and metabolic issues.
I heard it when you said that you’ve got Dr. Martha Herbert working on establishing working groups to study the biomedical interventions that parents have been begging scientists to research. Thank God.
I heard it when you talked about the high risk natal study following more than 2,000 infant siblings of children with autism, who are at higher genetic risk for developing the disorder. I heard it when you explained that the infants are followed from close to conception through early childhood, with researchers tracking and investigating EVERYTHING in their world, from maternal infections in pregnancy to vaccines to nutrition to environmental toxins. I heard it when you said that they are collecting dust samples from the homes and using new brain imaging technology to monitor development on a level never before possible.
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I heard it when I asked you if you are looking at the effects not just of individual vaccines, but of administering them in combination and you said, “I simply believe in good science. If the science has integrity, I’m open to investigating anything that will help us find answers.”
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I felt it as my breath caught in my throat and my eyes filled with tears when you talked about the mind-blowing progress being made with genetically altered mice and the very real differences being seen in their socialization, vocalization and repetitive behaviors after treatment. I knew it wasn’t just me as my dear friend Rachel broke down next to me.
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I heard it when you talked about innovation. About the potential being shown by early trials of drugs like Memantine and Arbaclofen. I heard it when you talked about the possible, relatively near-term tractability of single-gene and possibly even multiple-gene mutations.
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I heard it in everything you said that night.
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It was the sound of US – of OUR stake in this, OUR community, OUR words, OUR HOPE.
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On Friday morning, my husband, Luau wrote the following on his blog. He typically writes about running, which doesn’t tend to overlap much with autism. But on Friday, because of you, it did.
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I need to share his words with you. I need you to know how much this matters. To our precious children, of course, above all. But also to US – to their mothers and fathers, their siblings, their grandparents, their aunts, their uncles, their cousins, and, if they’re lucky enough to have them, their friends.
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Just like funding, for every one of our children there are ten more whose fate is tied to the first. And a parent whose heart is leveraged to their (and your) progress ten times over.
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***
Quicksand And A Rope from Luau’s blog, Run Luau Run 

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I am running – pounding the treadmill.

My demeanor is calm, almost stoic, but I am sinking.

Sweat is dripping out of every single pore of my body. I am drenched. The display of the treadmill is spattered.

I’m waiting…waiting for the endorphins to kick in; waiting for the wave of “feel good” to wash over me and wash away the troubles of the day, the 1000 paper cuts that are threatening to bleed me out. I wait, and when I feel like I’ve waited long enough, I double-down and pick up the pace. The sweat continues to pour out of me, now like a leaky bucket losing water.

My breathing becomes labored and yet, I am still calm, stone-faced and waiting.

When the endorphins finally kick in, it is almost anti-climactic.

Yes, I feel good.

Yes, there is some release of tension.

But there is an underlying sense of dread, of sadness, of disappointment, of loneliness.

Something is not right. There is still a weight upon my chest, my shoulders, pressing down. The immediate world around me is no longer bending to my will. The destiny of me and my family no longer seems to be in my hands.

***

I think about Brooke’s future a lot. I know that any parent thinks about their child(ren)’s future, but when you have a child with special needs, like Brooke has, those concerns get multiplied. What roadblocks will autism throw up against her as an adult? as a teenager? as a tween? next week? It doesn’t seem to stop. A few weeks ago we had a scare that Brooke might be suffering from brain seizures (nearly 1/4 of kids on the autism spectrum will at some point suffer a seizure of some sort). She had been rolling her eyes into her head sometimes at a terrifying rate of 10 – 15 times per minute. In the end, after an EEG and an evaluation, it was determined that she was not suffering from seizures, but rather a motor tic associated with autism.

Not that I would have wanted it to be a brain seizure, but I thought, “Great, just one more thing that is going to make it difficult for her. Great!” Fortunately the eye rolling has subsided immensely. I now see her do it maybe 10 times in a day as opposed to 10 times in a minute.

That, along with a few other factors related to Brooke, have taken their toll I think. My sleep has suffered. My running has suffered. My motivation to do ANYTHING has suffered. I have been sinking slowly in a quicksand that has threatened to swallow me up.

***

But then last night I was thrown a rope.

Jess and I went to listen to a talk given my Autism Speaks Chief Science Officer Geri Dawson. She spoke on the state of science and research in the field of autism – where we were, where we are and where we just might be going in the not-so-distant future. Jess is much better at conveying events, so I will leave it to her to elaborate on the talk, but I will tell you this – we were sitting with Mrs. SGM, a military wife/mother of a little one with autism. At the end of the talk, Mrs. SGM went up to Dr. Dawson and told her that this was the first time she had been to something like this where she walked away with a sense of hope – a true sense of hope.

That is exactly how I felt.

It took those words for me to realize that my “hope” had been waning over the past few months. It was more of a general deterioration of my hope for the future. As the economy continues to struggle and town budgets get tighter, administrators eye more and more the funds spent on a child like Brooke. Long-term views are replaced by short-sighted ones. It’s happening everywhere and our community is no exception. So my hope for Brooke had taken a beating.

Until last night.

What she said will not impact the budget issues each town faces, but as I listened to Dr. Dawson speak, I was lifted by the possibility that big breakthroughs are right around the corner – that there may be a time, relatively soon, when Brooke’s autism won’t demand so much attention, so much manpower. My hope for a truly independent adult Brooke was reborn.

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And with that, a certain amount of weight was lifted off of my chest. This morning I woke up just after 4AM and went for my run (10 miles, putting me over 1,000 miles for 2011!). There was the usual dragging my butt out of the comforts of my bed, but there wasn’t the sense of defeat and dread that has accompanied the moment of consciousness this past month or so.

Did Dr. Dawson’s talk resolve the issues we are currently dealing with now? No. Not even a little. BUT, as I look out over the horizon of time, I can see the storm clouds starting to break. The skies aren’t quite as dark or threatening and I think I see some sunshine coming through.

Thank you Dr. Dawson and Autism Speaks for inadvertently throwing me a rope and bringing back the sun.

Little darling, the smiles returning to the faces 
Little darling, it seems like years since it’s been here 
Here comes the sun, here comes the sun 
and I say it’s all right

-The Beatles
Thank you, Geri. Thank you for hearing us. Thank you for dedicating your formidable intellect and indefatigable spirit to our families. Thank you for pressing on in the face of so many challenges and believing that as overwhelming as this all is, change – real change – is possible. And thank you to all those who support and share the work that you do.
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Because in your work, there is HOPE.
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Sincerely,
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Jess
You can read this full entry on Diary of a Mom, here.

A Sister Reflects on World Autism Awareness Month

April 28, 2011 26 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism. 

April 2011, World Autism Awareness Month, has been one of the most memorable times in my life. The last few weeks I have taken part in some unbelievable ‘Light It Up Blue‘ events, met amazing people, and connected with the worldwide community to commemorate World Autism Awareness Month. April was comprised of so many moving parts that came together seamlessly, due to the hard work of so many.

I have been meaning to write a blog post, but I keep hitting walls.

Sure, I drafted a post of my experiences on April 1 and 2, detailing some of my stops: The Today Show with Alpha Xi Delta; WPIX 11 with the incredible students from Pelham; The New York Stock Exchange with our Co-Founders Mr. and Mrs. Wright, state dignitaries, politicians, celebrities and many more prominent people in the autism community. I could write about the reception hosted by ‘Light It Up Blue Rockland,’ in my hometown, when my brother and his housemates were in attendance. I was so proud. Or, the press conference at the Intrepid, which took place on a beautiful Saturday morning.

Throughout this campaign, I communicated with literally thousands of people all over the world. I feel blessed and privileged to have heard their stories and seen their photos. While I worry that I will never be able to formulate the right words to give World Autism Awareness Month justice it deserves, here are some photos that will speak for me:

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I can’t forget to include the panel discussion, ‘Solving the Autism Public Health Puzzle: Regional and International Collaboration,’ held at the United Nations, or ‘A Blue Affair’ hosted by Donald Trump Jr. and his wife, Vanessa.

We should also revisit the push to ‘Light The White House Blue.’ I am in awe of each person who submitted a blog entry. More than 1,000 comments were posted and much of the autism community was unified for a common goal.

On April 25, my dear friend Jess, who so bravely and unselfishly shares her beautiful family with us on A Diary of a Mom, was invited to The White House for an event to commemorate Autism Awareness Month. The morning before she headed over to 1600 Pennsylvania Avenue, Jess told me that she would be taking my brother Jeff with her. My heart was full. I couldn’t think of anyone better to represent him. She gives all of those affected by autism the utmost respect and genuine compassion. I will never be able to thank her enough.

However, alongside all of these spectacular and unique moments, the most memorable for me happened on probably the most mundane of all days.

On April 3, once we all were coming down off the Light It Up Blue ‘high,’ my brother came home from his residential house, and I snapped back to reality. We took a walk, as we have done countless times before. My mom, brother, and I have been taking Sunday walks for years, making it almost an institution. We go to different locations, but often find ourselves on the wooded path at the Pearl River Middle School, as we did that day. We are shielded by the trees and find comfort in the trail’s predictable twists and turns.

Before we begin, Jeff’s anxiety kicks in and he asks for a rundown of dates, “Yes, Jeff, next weekend you can order two DVDs off Amazon, in June 2011 we will go to Montauk for a week, in 2014 we will remodel the kitchen …” and so it goes. Then, we are swallowed by the woods, where Jeffery will usually stroll a few steps behind making his noises. My mom and I will smile and greet friendly strangers; some give us knowing and warm looks, while others sort of stare.

As we round the first bend, which borders a putting green at the local golf course, we remind Jeff to quiet down. As per usual, he gets louder, and we laugh. Next, there is a downturn that Jeff always heads down gingerly. He approaches this dip with the caution he exhibits in some everyday activities. If there are any disruptions along the way (fallen tree, broken bridge, mud puddles, etc.), Jeff always takes note – I am positive he remembers every element of the trail from the first day he stepped foot there, over twenty years ago.

We plod along, stopping from time to time to chat about dates. He’ll hold our hands, then jog ahead, or maybe he’ll stop to give us a hug. My mom and I don’t mind – as a matter of fact, we’d have it no other way.

The last leg has a steep uphill that my mom and I sort of dread. Each time, Jeff manages to surge, making it to the top with a smile. He takes on the hill with gusto and courage. This trail reminds me of the journey my family is on. There are times we are slow and anxious, while other times we coast through and laugh. We have down-slopes and upturns, but Jeff always keeps our pace and establishes a rhythm. It may have taken him a little longer through the years, but he has become our fearless leader. Jeff holds us up with his unconditional love and directs us with his strength.

My brother, like the countless members of our community, is brave.

World Autism Awareness Month 2011 has given me a greater sense of community. Together, we will make the world a safer and more welcoming place for my brother, and all of those with autism spectrum disorders. I have a renewed hope, and will be forever changed.

I would like to send a big thank you to each and every person in the autism community.

Me and Jeff on the trail - photo by Carol Dyer





In Their Own Words – It’s For Me

February 3, 2011 21 comments

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?”

“Nope.”

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.”

“Yup.”

“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 editors@autismspeaks.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.

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