world autism awareness day 2010

**

It’s here again, isn’t it?

World Autism Awareness Day.

The day for which I am so grateful, yet from which – year after year- I just want to hide.

It’s a day of hope and promise and grandiose events. A day on which buildings across our nation and around the world are set ablaze in blue light. A day on which Liam Niederauer rings the opening bell of the New York Stock Exchange. A day on which the United Nations recognizes our community and the epidemic proportions at which it is growing.

These are wonderful and meaningful events.

But a UN resolution won’t tell your child’s story to your aunt – the one who says you’re ‘just too lenient with that kid’ or that a week with her ‘would be enough to set him straight’. Ringing the opening bell of the New York Stock Exchange won’t tell your son’s story to the kid down the street – the one who calls him names and sends him home in tears when he doesn’t understand the unwritten rules of the game. The Empire State Building won’t tell your daughter’s story to the lady on the supermarket check out line – the one who sneers at a meltdown because she has no idea what she thinks she sees.

Events can’t tell our stories.

But we can.

Nearly two years ago, Michael Savage said the following on his nationally syndicated radio show.

“I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’”

It stung like hell when he said it. Two years later I would have hoped to God that we’d moved far past that kind of ignorance.

But last week, a Mommy blogger wrote what she thought was an amusing anecdote in which she ridiculed a four year-old little girl who could very well have been mine. Or yours. It was painfully obvious from her description that this little girl was exhibiting autistic behaviors. But that wasn’t what the blogger saw. What she saw an over-indulged, spoiled brat.

She has since taken the post down and has issued a what appears to be a heart-felt apology. But just as Michael Savage’s words did two years ago, this woman’s post showed us in no uncertain terms just how much work we still have to do in order to create a world that shows compassion to our children.

So while the buildings are lit in blue and the world stands at attention, let us tell our stories. We don’t have to tell them on television or on stage or online. We can tell them at our schools and in our book clubs and in friendly chats with neighbors.

We can tell our stories anywhere that we are. And we must. Because if we don’t tell the aunts and the kids down the street and the ladies at the supermarket and the blogger at the library what autism really is – what it means to each of us – who will?

So what do we tell them? Two years ago, I wrote the following.

We tell them what we live.

We tell them what it’s like to see the world in too bright Technicolor. We tell them to think back to a time when they just got out of the ocean and their eyes were full of salt and they looked directly into the sun. We tell them that’s what it can be like to walk into a classroom.

We tell them what it’s like to hear the world in too loud, too chaotic Dolby digital sound with no volume control. We ask if they’ve ever had a migraine. When they did, did they ever turn on their stereo and their television, both on full blast and then have three people shout at them from different directions? We tell them that’s what it can be like to walk into a restaurant.

We tell them what it’s like to sit in the middle of a roomful of people talking and to not be able to understand a single word they are saying. We tell them to imagine what it would feel like to be a native English speaker who has a rudimentary knowledge of Spanish trying to follow an argument in heavily accented Castilian. We tell them that’s what it can feel like to be at a birthday party.

We tell them what it’s like to be completely overwhelmed by everything around them – to feel like they’re standing in the middle of the track at the Indy 500 and the cars are coming at them at full speed. We tell them they too might lose their facility to calmly ask for help when they have no idea what’s happening next. We tell them they’d likely panic and scream and curl into a ball. We tell them that’s what it can feel like on a soccer field.

We tell them what it’s like to taste and smell the world so vividly that they can’t tolerate it.  We remind them what it feels like when they have the flu and every smell sets off their salivary glands and their gag reflex. We ask them, what if, when they feel like that, someone hands them a pot of curried meat? We tell them that’s what it can be like to sit down for a meal.

We tell them what it’s like to lack the language to express your most basic needs.

We tell them what it’s like to be so sensitive to certain sounds that you live in fear of car alarms, sirens, coffee grinders, garbage disposals, horns and any of the places that you may have heard any of those sounds before.

We tell them what it’s like to try desperately to interact with your peers, only to be rebuffed time and again because you can’t manage the most rudimentary conversation.

We tell them what it’s like to be so oversensitive to touch that a hug can be torture.

We tell them what it’s like to yearn for a friend. Just one.

We tell them what it is like to live with autism.

I can’t speak for you. Your experience is different than mine.

So you need to tell them.

Tell them what it’s like to tear yourself apart every day as the parent (or aunt or uncle or grandparent or cousin or colleague or friend or friend of a friend) of a child who lives with these challenges because you don’t have the tools to make it better.

Our children need awareness. They need acceptance and encouragement and understanding. They need patience and compassion and love.

They need us to talk.

So please, use the day. Talk about it. Blog about it. Tweet about it. Write about it on Facebook. Use whatever tools YOU have in your arsenal to get the word out.

We CAN change the world for our children.

We will.

One conversation at a time.

ed note .. If you are just entering this world, I’d urge you to read the following. It is a letter that I wrote to a friend whose child was in the process of being diagnosed. I hope that if nothing else it will show you that you will find your way. And you are NOT alone.

https://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

64 thoughts on “world autism awareness day 2010

  1. Thank you, Jess. Once again, you wrote was is on my heart. Yesterday, on what was officially the first day of autism awareness month, my own autism meltdown. Six years after Jack was diagnosed and really? What has changed? The things that have changed for him are things that I’ve nearly killed myself changing. It just shouldn’t be this hard. It just shouldn’t, but it is. And I am so, so angry. Thank you fore letting me vent. 🙂

  2. Thank you for your voice, and to all the other autism moms out there that use their voice for our children. And like Shannon wrote above, I have nearly killed myself to get my son to where he is today. It’s hard to tell people to walk in your shoes, because my shoes are so different then others, but I wouldn’t trade my shoes for anything. I see life so differently now.

  3. As a mother who has not been directly affected by autism, I am writing to give you MY support. This epidemic has hit our youngest generation harder than most are willing to believe, Children affected by autism are everywhere, and they deserve the voices that you, and Shannon, and Tracy have given them. And they are grateful. And we are grateful, to you. For sharing your stories, your feelings, your life. And I want you yo know, we here you. I promise, we do. And we are sensitive and compassionate and understanding of both you, AND your children. We won’t stop you in the market to say so, but please know it’s genuine. It’s the bond of motherhood. We feel it for you and we feel it for them. We don’t KNOW it as you do, but we appreciate your challenges and your journey in healing, advocacy and acceptance. As for the others? Those who judge, who stare, who don’t “get it” …they are few and far between. I believe that they stand out, because it’s ignorant and hurtful… but they are the minority. Please know that we support you, in all that you do. For your children, and for autism. This is your day! And, we are listening…

  4. Thank you for what you wrote. It brought me to tears. My son has Asperger’s and there are times when I feel like you in what you wrote. People only see the way my son acts, thinks, talks, etc. They don’t see what I see….what it is that makes him this way. I wish for one minute, that everyone could see life through the eyes of a child who is in the Autism Spectrum. I think a lot of people would change how they feel about these children.

    • I have a son that I suspect may have Asperger’s and called this great Dr. to find out and got an appt for 6 months from now! It has been such a hard road just to this point (he is almost 8) and I feel like my heart has just been broken the last 5 years. The teachers would be happy to have him sit on a bench away from all the other kids rather than try to help. Ugh!

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  6. Once again you have hit the nail in the head ~ this brought tears to my eyes because I know, like you do, how hard/challenging it can be for our kids to function in everyday life. I remember when my son was a newborn and he would cry, I would sometimes tell my husband that it’s like the world was too much for him after coming from the quiet and calm of the womb. I had no idea how true those words were at the time.
    Thank you for writing this ~ you have a talent for putting into words what so many of us have experienced and what we’re feeling!

  7. Kathleen, Thank you for the post!!! It was well said…Would not have done better. It’s about time the world understands what our children are going through plus US…the parents especially single parents like myself who are doing the best that we can…to make our kids feel better, but of cause as stated, “We don’t have the tools to do so!!!”. It is a tough world out there, and we should educate everyone that we encounter. Most people just don’t get it.

  8. What a beautiful thing to hear my nephew say “I love you”, even if it does sound recited, or mimics the way a toy says it or sounds like a commercial. He’s taught me more than any adult has about tolerance, resilience and innocence. Please open your eyes, your minds, your HEARTS and understand that just because you are not “that lady with the screaming kid” in line, or that “weird man who never makes eye contact at work” does not mean that you will not be personally affected by Autism. Please don’t wait until you can claim to have empathy for those affected before you show compassion and squash ignorance.

  9. Thank you. When we can tell our stories, we should. When we can’t, we pray that others will. This is one of the many reasons we need each other. Whatever our autism politics. We stand as one today.

  10. You said it better than I could have so I’ll just say thank you. Thanks to Kathleen as well, for the wonderful words of support. May there be more people like you.

  11. Today is my first Autism Awareness Day as “one of us”, what a different persepctive. Thank you for being so eloquent and using your voice to help all of our babies.

  12. Well, thank you Jess, you words are amazing! That blog just tells us that yes, we need to increase awareness! What is sad to me is that the apology, while heartfelt, troubles me that this woman was a teacher for eight years.. sigh.

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  15. Thank for for sharing. One of the most blessed part of this journey has been connecting with people who are sharing these struggles. We’re in it together even though most of the time it seems so alone. Looking forward to following your blog.

    Here is mine: http://www.parentdom.wordpress.com

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  17. Jess, thank you for your beautiful words – they bring such comfort and support on World Autism Awareness Day.

    Kathleen, how I wish my family and closest friends could tell me the things you wrote today. Many days we feel so alone in this road we are traveling on. To read your words and envision a life where my daughter is fully supported and accepted by others for the beautiful gift that she is fills me with such hope.

  18. So well put…some days everything can be a struggle. I do, however, think that the world is beginning to change its view on autism. It’s still far from perfect but we are gaining some ground. The best way to spread the word on how autism affects families is to keep living. Continue to go out to eat, to neighborhood picnics, and to the park. Keep talking about it. Be very open about the fact that your child has autism…it allows others to understand. Keep yourselves surrounded by a positive support circle. The people in our lives now completely understand autism just by being around our son. He’s taught them so much.

  19. Beautifully written indeed. Today I am going to go downtown and hand out autism flyers and pins to raise awareness. You have given me a great arsenal of things to say!!

    Look for the full report of what happened later on my blog,
    Aspie from Maine, at http://aspiefrommaine.blogspot.com

    Hopefully we will manage to connect with some people.

  20. @ Kathleen “And we are grateful, to you. For sharing your stories, your feelings, your life. And I want you yo know, we here you. I promise, we do. And we are sensitive and compassionate and understanding of both you, AND your children. We won’t stop you in the market to say so, but please know it’s genuine. It’s the bond of motherhood. We feel it for you and we feel it for them. We don’t KNOW it as you do, but we appreciate your challenges and your journey in healing, advocacy and acceptance.”

    I agree whole heartedly with Kathleen. As a parent, I am not directly affected by Autism. (I do have a dear cousin that is)But I yearn to help as much as possible with your journey because, I hurt when you hurt, I rejoice with you during victories, I smile at the progress made by your child(ren), I think of y’all often. I truly care for your families. We don’t know each other…and that doesn’t mean a dang thing in my book. We can still love each other! 🙂 And this love I speak of doesn’t just apply to one person from one person; it’s the whole village.

    Celebrate your lives today and everyday…there is an entire gang of mommies, friends, family members and unknowns out there wanting and willing to take each step with you along the way.
    sending love and hugs.

  21. Absolutely beautifully said I must say, as a mother of a 6 year old with Autism it is truly a blessing to have people like yourselves who thought they cannot walk a minute in our shoes still try to understand where our angels are coming from. It is on a daily basis for me to notice a look or a whisper when I take my son out to do daily routines, but knowing that there really are people like you out there that are compassionate and accepting towards anothers needs makes things that much easier. It is also parents like you that make the “non-typical” children more comfortable in their social situations because you show understanding they learn that from you! Bless you all ❤

  22. Hi Jess You don’t know me but I have been following you and your family for more than a year now. Jenn from Devin’s Journey is my sister in law and Devin is my beautiful nephew. I am honored to be Jenn’s sister (in law) & Nah’s sister & Devin’s aunt. I want to thank you for your “words”, for letting all of us into your world, your family, your highs, your lows. I want to thank you for sharing your journey & your family’s journey with autism from a mommy’s perspective. Although I know there have been moments you have contemplated not continuing to share these experiences and emotions I am grateful you & Jenn & all of the mama’s who share like you. You have taught me so much about the hopes, worries, highs, lows, fears, concerns, dreams, accomplishments that go hand iin hand with autism. but for the “sharing of stories” I would not know. Even greater than that is the fact the “sharing of these stories” has allowed me to make a difference with my children, Devin’s nieces and nephews, in teaching them kindness and compassion and awareness and embracing differences and teaching them to expect nothing less from their friends. So I thank you and Jenn and all of the blogging mamas for sharing your stories. We are listening and it is making a difference…not just today but everyday. We are not walking in your shoes but we are walking by your side in support of you.

  23. This just brought me to tears. My son was finally diagnosed yesterday, the first day of Autism Awareness Month. We’ve known since he was 15 months old but the first doctor refused to diagnose him before he was two and when we tried to get him in to other places we encountered problem after problem. It’s just seems so perfect that after all this time he was diagnosed yesterday. The first thing one of my aunts said when she heard that he was diagnosed was that we were jumping the gun and should give him more time. He’s 3! How much more time do we need to give him? I don’t understand why people just don’t get it. She barely knows him but she’s decided that he’s fine and just slow. I guess it’s better than witnessing one of his tantrums and saying he’s spoiled. Anyway, I just wanted to say that what you wrote was beautiful and I posted it on my Facebook profile (like I’m sure a lot of other people) and I hope all of my friends read it too.

  24. While I haven’t been touched directly by Autism, so many of my friends have that I consider myself relatively enlightened. Yet, I am guilty of giving dirty looks and rolling my eyes when I see children behaving badly in public. To Jess and other parents of children with autism, I sincerely apologize if I mistake your child’s behaviors for those caused by bad parenting. Please know that if I recognized the situation, I would not be giving you a dirty look….nor would most people (or at least not the kind of people whose opinion you should care about anyway). Believe me, I am humbled by the exhaustive work you do on behalf of your own and others’ kids.

    • oh, lisa .. thank you for these words.

      your comment (along with others above who are not directly affected by autism) has been humbling and lovely and wonderful and is so very much more than i could have hoped.

      thank you. from the bottom of my heart, thank you.

    • Lisa,
      How very brave to express this out loud. Most people won’t or can’t. I know it’s hard to realize and to say, Boy, was I mistaken! And I know if you knew what the real situation was you wouldn’t be judging my child or my parenting. So thank you for reaching out. We can learn so much from each other. And it’s up to us to open the conversation – on both sides. If we hide our light, we can’t shine.

  25. As I read the blog and the comments of the blogger that you referred to…the tears rolled down my cheeks. My son is a teenager and was diagnosed with HFA 11 1/2 years ago. We’ve worked so hard and spent so much $$ to get him to where he is and he has come so far…I’m so proud of him. [Although, sometimes I still “cringe” when he says things or does something “quirky” (God, please forgive me for that.)]. I don’t know how he keeps on smiling when his classmates are so mean to him; yes, he is aware of their actions. Then I see the intolerance and judgmental attitude of some parents with NTs (I also have an NT child) and realize where it comes from. I tell myself, they don’t understand, but it still hurts. Why did I have to teach him that sometimes children (and unfortunately adults) do mean things? The concept just bewildered him…”Why would anyone want to hurt someone, Mom?” I just say, “They don’t understand.”…and he nods (still confused). I wholeheartedly agree, that with knowledge, perhaps compassion will result. And I will try to have more compassion for NT adults who have no knowledge of our children. 🙂

    • aloha – it’s heartbreaking, isn’t it? but i LOVE that you say that we also need to remember compassion for those who simply don’t know. as lisa’s comment above so wonderfully illustrates, there are good and caring people out there who would be advocates if they knew more about our kids.

      i wrote about the smockety dust-up on diary’s facebook page. in it i said the following ..

      smockety’s post shows us that we need to keep talking, keep sharing our stories, keep building bridges and keep working to create the understanding that our children so desperately need. tolerance and compassion won’t magically appear without being preceded by true awareness about what life with autism really means.

      while it’s hard for those of us who are steeped in the world of autism to believe that there are still people out there who would judge or ridicule a child displaying the kinds of behaviors in the post, the campaign for awareness is a long road. this is simply proof that our work is far from done.

      as we move forward, i believe we must take great care in the way that we conduct these conversations. education, connection, understanding and empathy simply can not be achieved by calling people names or beating them into submission. let’s set the example by showing others the compassion that we seek for our children. then perhaps they’ll actually hear what we have to say. then they might just take the time to get to know our incredible kids.

  26. As offensive as she was I actually feel kind of sorry for shmickety schmook. When we hurt others, when we judge others, when we are anything less than loving, it always comes back to us.

    We’ve all offended someone at some point.

    We’re all learning.

    What a painful lesson for her.

  27. Today is my day of mourning. I have been crying all day so far because it finally hit me that my son Drake is really autistic. He is 3 and still non-verbal. We just got him into a preschool, which cost $43,000 for a 9 month school year. The school district is going to pay for it because they don’t have an appropriate school for him. I have put off the thought of it being autism for so long and have been denying it. In a way, I still am. It hurts so bad. I knew he was different and I revel in his difference, but it’s becoming really apparent that something just isn’t right. He’s my world, as is his baby sister.

    I thank you so much for writing this blog because it has helped me through so many hard days. Today has been one of them. I really appreciate you and all of the mommy bloggers with children with autism.

    • oh daisy, i’m so sorry. but i can tell you that we’ve all been there. please know that you’re not alone in feeling the way you do. there’s hope. i promise.

      please read this ..

      https://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

      i wrote it to a friend who was in the space you’re occupying right now. i hope it can help to show you that there’s hope of finding the sweetness in the journey.

      all the best to you and yours.

      • Daisy, big, big hugs to you. You are allowed to mourn. It’s okay. You will have moments of mourning and celebrating. We know how hard it is. We all want to just hug you. And tell you to hold on.

  28. Theres so much that I want to say but have a hard time putting it down. My heart goes out to everyone you has a child with autism. I know how what they are all going through, my son 10 and was Dx at 18mths, but my heart breaks for the mothers who never heard the words mama. May god bless you and your family. You are there voice dont stop….

  29. You’ve done it once again girl. Absolutely wonderful, hit the nail on the head, gorgeous post. I just love your voice. Thanks for sharing it with all of us.

  30. God I needed to read this today! I can’t count how many times I’ve been somewhere in public with my son and had other moms give me “The Look”, you know the one that says either, “you must be a horribly abusive mother to make your child scream like that” or “you must be a horribly overindulgent mother to allow your child to carry on like that”. I’ve often wished i had a t-shirt or something, that offered an explanation, but then I realized that it likely wouldn’t matter. Some people just don’t seem to able to easily comprehend the fact other peoples lives and situations do not necessarily mirror their own. Just recently I had a visit from Child Protective Services because someone like Smockety Frocks witnessed my son having an A-1 autistic meltdown because he couldn’t have the toy that her child was playing with at a local hair salon. She was convinced that I must abuse him terribly based on the way he was acting, so she took down my license plate number and made a hotline call. Imagine my surprise a week later…luckily the caseworker was well informed when it came to the spectrum and behaviors associated with it, so by the time he left we were both laughing about it. Thank God! Had he not been so well-informed, who knows what could’ve happened. My heart aches just thinking about the possibilities. Sorry for such a long comment, and Jess thank you so much for what you write!

  31. Every single word you have spoken I have felt. I have a six year old son with autism & I can only say that the journey has been a difficult one but for the last two years I have seen a transformation that has taught me that with love, patience and kindness you can change lives. My son is the son people said I would never have. He is kind and loving. We have our difficult times but who doesn’t? I just want to say for families who are going through the early stages…don’t give up…your journey has just begun and it will be a beautiful one. There will be tears but at the end of the day those tears will turn into smiles, goals and accomplishments.

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  33. Hi! It’s now WAAD 2011. I was looking for an autism awareness day logo to put on my own blog, and I came across this blog post. A few minutes of reading and a few tears later, I have decided to link to your blog. Many “autism moms” have read and replied to your post, but it’s others who really need to read it. Hopefully I can redirect even one or two others from my teacher-perspective blog. I was just saying to an autism mom friend about an autism workshop for first response workers that the people who didn’t attend didn’t even know that they needed to attend. Let’s home that one day, sooner than later, we’ll reach them.
    In understanding and solidarity,
    Jana

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