I had it all planned out for my big November 1st “Autistics Speaking Day” post.
I was writing it in response to the movement by an Australian based organization, trying to get people to stay off Facebook and Twitter for 24 hours today, as a way of showing solidarity and support for those with autism.
I was going to write why I wasn’t going to be silent on this day. You know, I’m all for awareness of any type, but something about this just didn’t sit right with me. Part of that was about my ego – I just didn’t think that my Facebook friends and followers on Twitter would notice or even care if I was silent for a day. Contrary to what my husband thinks, I’m not on there all day long.
Then there was the staying silent part. My child is quite verbal, and we’ve worked really hard to improve his communication and social speech skills. Being quiet is contrary to that. And I’m guessing that my friends with non-verbal children would do anything to hear words. Any words. Most of them have moved heaven and earth to help their child communicate. Why would I stay silent to recognize that?
So I was going to use this space to tell you about my amazing son Howie. How at age four he looks to the outside world like every other four year old, but he’s not. We work incredibly hard every hour of every day to help him look that way. I was going to tell you that his teacher calls it a “dance” – most kids test their boundaries but are able to dance that line and pull back to appropriate behavior. My kid can’t. He has to be constantly reminded how to pull back, and if I let up at all, he dances gleefully across that line and we’re done. I was going to write about the hours of behavior therapy and occupational therapy we’ve been through to get us to the point where he can function in an inclusion classroom with an one-on-one aide and can finally draw a picture without a giant meltdown.
I was going to write about what autism is like in my house.
Then…
An e-mail. From an acquaintance. Her young child had just been diagnosed on the spectrum. On Wednesday. She had found my essays online and having nowhere else to turn, got in touch with me. She was devastated. Overwhelmed. Sad, confused, upset, bewildered…you name it. She had been blindsided. A routine checkup turned into something else.
I sent her my phone number. And we talked.
The words she spoke were so familiar. How did I miss this, she said. What am I not seeing? He talks, he makes some eye contact – how is he on the spectrum? No one sees this in him. My family and friends think the doctors are crazy. What did I do to cause this? Do I change his diet? Not vaccinate? Where will he go to school? How will I deal with therapists in my home all week? Will he have friends? What do I tell my other children? Will he ever be normal? And what the hell is ABA therapy?
She cried. I did too.
I know those questions all too well. We were asking the same ones almost a year ago ourselves. I know the grief of realizing your child might be different. I know how it feels when your world feels like it’s falling down around you.
I told her all that. With my words.
I told her I knew exactly what she was saying. I have grieved for the life I thought we might have with our son – the preschool class that I thought he’d attend, the family trips I thought we’d make. I have been in the position of explaining to family and friends why my son is different even though they can’t see it. I told her that I have been just as overwhelmed and guilt-ridden as she was. But I also told her that although it might be too soon to hear it, things can get easier. The earlier the interventions start, the better they work. I told her that my son has made remarkable improvements in the 8 months since his diagnosis thanks to his amazing teachers and great therapies.
I told her I was here for her whenever she needed to talk.
She said when she read my article it was like hearing her own words in her head. When she had no one else to turn to, she bravely reached out for a shoulder to cry on.
If I had remained silent, she would be feeling all alone.
So many kids are being diagnosed on the spectrum every day. So many parents are hearing the words “your child is autistic” for the first time. So many parents are feeling like they have no one who knows what they are going through.
If we aren’t talking, if we aren’t sharing OUR stories, how will anyone know that we understand? How will they know that we get it?
This is why I’m not going to be silent today. I need to talk. I need to share my story anywhere I can.
Because I also need to know that I’m not alone as well.
“Hush hush, keep it down now, voices carry
Hush hush, keep it down now, voices carry” – Voices Carry by Til Tuesday
October 31, 2010 at 6:29 pm
Well put! I’ve been struggling with the Nov. 1 thing too. Good work!
October 31, 2010 at 10:13 pm
thanks. I can see where they are coming from, but I think it misses a whole segment of the spectrum.
November 1, 2010 at 11:57 am
everyone should go to asdmommy’s site and read her post today about not being silent.
October 31, 2010 at 6:53 pm
Great post. And that song has another level of meaning for me now.
Chynna
http://www.lilywolfwords.ca
http://www.the-gift-blog.com
http://www.seethewhiteelephants.blogspot.com
October 31, 2010 at 10:15 pm
thanks! I know the original song is about domestic violence, so it’s not the best topic choice, but the song title fit well (I thought…)
October 31, 2010 at 8:10 pm
Great post- I’m so glad you were there for her, there is no worse feeling.
Silence is the sound of being alone, our voices are in harmony. See you tomorrow on Facebook and Twitter
October 31, 2010 at 10:15 pm
you bet! I’ll try to be there when you’re moderating!
October 31, 2010 at 8:17 pm
Another reason for you to keep writing!
October 31, 2010 at 8:35 pm
[…] This post was mentioned on Twitter by Spectrummy Mummy and akbutler, akbutler. akbutler said: Just in time to say trick or treat, my post why I won't be silent Nov. 1. #autism #ASDay #autismshoutout Voices Carry: http://t.co/9BsnWNo […]
October 31, 2010 at 11:42 pm
Beautiful, important, powerful words, so well written, so superbly voiced! You know how much I love your writing, but I am going to keep telling you. Your posts are gorgeous.
Ironically, today is the first day of the ASD assessment process for our oldest, who is not far off 9 years old. Not the day to stay silent about communication! While we were quite heavy hearted before the 3 hour initial parents only interview, we left feeling quite positive. The psychologist was great, I mean REALLY great and we feel confident that whatever is going on for him, she will figure it out.
Thank you for being the kind of person who tells a stranger to call and to share, hold and comfort them with your words, compassion and understanding. This is what makes the world a kinder place.
November 1, 2010 at 11:57 am
I’m thinking of you today and look forward to reading your amazing blog to see how it went.
Thank you as always for your kind words.
November 1, 2010 at 1:53 am
Technically, it was November 1 in SA where I’m living when you wrote this. A superb Post for Autistics Speaking Day. Thank You for writing it.
November 1, 2010 at 11:56 am
thank you 🙂
November 1, 2010 at 6:58 am
We’ve been struggling with the same thing with our 4 year old. He’s not yet diagnosed, but his older brother is. The older our little one gets, the more behaviors we see. We go for an evaluation later this month.
I’m finding it interesting that I see mention of celebrities and such going silent for the day, but I keep seeing parents of kids on the spectrum saying, “I can’t be silent.”
November 1, 2010 at 11:58 am
I hope your eval goes ok. No matter how many times you’ve been through it, it’s still a painful process.
It was too hard to remain silent today. I have too much to say!
November 1, 2010 at 9:29 am
Absolutely beautiful post!
This is exactly why we are speaking out today (and everyday) in support of those with autism!
November 1, 2010 at 11:55 am
Thank you! and thanks for giving us a place to share out links.
November 1, 2010 at 10:22 am
Hi,
I’m Marianne and I’m part of the Communication Shutdown Team. I just wanted to let you know that we fully support Autistics Speaking Day and would love to share your insightful experience with our supporters.
Although our executions are paradoxical, I believe we have the same goal to encourage understanding and acceptance in the wider community. We would really like to give your voice more reach, while at the same time giving our supporters a deeper understanding of autism.
Please email me at marianne.harvey@communicationshutdown.org if you would be happy for me to share your post.
Many thanks and hope you have a great Autistics Speaking Day.
November 1, 2010 at 11:59 am
thank you. any awareness is good awareness, even though our approach is different. We do have the same goal. Thank you for commenting.
November 1, 2010 at 2:29 pm
Thank you for talking..:)
November 1, 2010 at 6:34 pm
and thank YOU as well.
November 1, 2010 at 3:09 pm
I’m so glad you aren’t silent today. This was a great post!!
I’m blogging today, too…
http://www.imjustthatway.com/2010/11/bloggers-unite-for-autism.html
November 1, 2010 at 6:34 pm
your post was terrific. everyone should read this post as well.
November 1, 2010 at 3:55 pm
Your post was beautiful. Thanks for participating and I hope you’re having an awesome Autistics Speaking Day.
November 1, 2010 at 6:36 pm
thank you for hosting and posting my blog today. I’m so glad you put together the facebook page for us all.
November 1, 2010 at 4:32 pm
Visiting from the blogging for autism bloghop. I feel exactly as you do and purposely wrote a blog post for today and have been on FB and twitter ‘talking’ about my 3 year old son. I think everyone that joined in today will have done a lot of good in raising autism awareness. Jen
November 1, 2010 at 6:38 pm
another great post that everyone should read from Jen. Just click on her name. I agree – this has been an amazing awareness day thru social media.
November 1, 2010 at 5:12 pm
Wonderful post. I agree with you wholeheartedly. Silence is not the answer.
My middle child had dyslexia, and I was never silent about it I even have a book about early detection of dyslexia coming out soon.
Margot Finke
November 1, 2010 at 6:38 pm
thank you. Personally, I think silence is never the answer when it’s about our kids. We have to speak up when they have trouble finding the words to do so themselves.
November 1, 2010 at 5:22 pm
AMEN! More than ever, I think, we as moms with kids with autism, need support from other mothers. Enough with the silence, I say!
November 1, 2010 at 6:39 pm
agreed.
November 1, 2010 at 5:30 pm
I just heard about this today — been kind of busy.:) Anyway, I sort of feel like it’s more important for the kids to unplug than it is for the parents. If anything, I think the real communication gap lies with too little human contact and too much screen time.
Lovely as usual, my friend.
November 1, 2010 at 6:40 pm
I agree. If this was about teaching our kids better interpersonal face-to-face skills, I’d be interested. But it wasn’t.
Any awareness is good awareness though.
thank you for your comment as always.
November 1, 2010 at 6:32 pm
Thanks for speaking out, writing this post, and most importantly, being there for someone with a newly diagnosed child.
I remember that wave, tidal wave, of feelings & information that was pounding on me when my kidlet was diagnosed. Looking back, I can see red flags, but he was social, loving, and my cuddlebug. I had gone to his doctor a year and a half before and said that he was hardwired differently. I remember feeling like this new learning curve was such a steep mountain to climb (& sometimes still do!) and I had no idea where to turn.
Thank goodness for the internet, which I became glued to for information. And now, three years later, it is still providing a ton of information, but is also providing connections and understanding as well. And hopefully, I can also support others on this journey.
We have some rockin’ awesome kidlets and they deserve our voices to stay strong for them….to share with others and to model advocacy for them as well.
Thanks for sharing!! I’m participating too via blog post, Twitter & Facebook…Autism Shout Out!! :>
November 3, 2010 at 4:36 pm
I remember going to the doc several times too – we just never put all the pieces together (eating problems, sleep problems, attention problems, etc.)
I’m following your great blog now. Thanks for your comment!
November 1, 2010 at 7:42 pm
I am amazed at your choice of music to relate to the topic. It is great and I thank you for not being quiet:)
November 3, 2010 at 4:37 pm
thanks Robyn. I know the rest of the lyrics don’t fit all that well, but the chorus sure works.
November 1, 2010 at 8:31 pm
Thanks for this post, and you are so right that we all must share our own stories. I know in sharing mine, I’ve helped others understand.
November 3, 2010 at 4:37 pm
Thank you. I’m looking forward to checking out your blog. I was proud o be part of this for my son.
November 1, 2010 at 10:18 pm
Great post. I have a good friend going through the same thing…it’s so hard to watch someone be where you were as you remember the pain, but at the same time, I’m so glad I can share with her that time will make us stronger and we can do this.
November 3, 2010 at 4:38 pm
she has a fantastic friend in you, and you have so much to share. she’s very lucky.
November 1, 2010 at 11:01 pm
Thank you for sharing your story!
Jennifer
http://www.thegatewayproject.org
November 2, 2010 at 9:08 pm
Fantastic post that not only gets your point a cross in a direct manner, it also highlights the need to voice awareness in such a beautiful way. Your words are powerful and I can relate.
I also joined in on the 1st Nov and linked up to the unite for autism campaign. Would love to hear your thoughts. http://aspergersinfo.wordpress.com/2010/11/01/where-will-you-be-in-ten-years-time/
Thanks
Claire
November 3, 2010 at 4:41 pm
I just read your great blog post. Thanks for sharing it here and for your very nice comment!
November 3, 2010 at 12:32 am
Great post…I always liked the song “Voices Carry” (and thanks…it’s in my head now. LOL!)
What a blessing you were for your friend! It is wonderfulthat you could cry together, and she could know that she is not alone.
Thank you for sharing your story!
Chris
http://www.acrazykindoffaith.blogspot.com
November 3, 2010 at 4:42 pm
Thank you 🙂 and I too had the song in my head all day on Monday!
November 3, 2010 at 6:22 am
This is the best post I’ve seen against the silence. Well done.
I did see the point of their campaign I must admit…to a point. Only to a point. And it certainly did raise awareness!! Everyone is talking about it.
I have yet to see any blogposts
supporting the silence (from the day before or after) there are loads for speaking out…
So glad that you were there for your friend.
xx jazzy
November 3, 2010 at 4:43 pm
awww, thanks!! There were some amazing stories out there on Monday. I was honored to be a part of it. I too saw the point of the campaign and I must say I think they raised awareness all over the place, no matter which side you participated on. Mission accomplished.
November 3, 2010 at 5:57 pm
We can all relate to feeling your friends same grief. I hope she knows things do get better. Her son must be pretty mild if they didn’t really see it. We were in that same boat. My mom and I both didn’t think it could be true and quickly we realized we were just in denial. Get your friend involved in this blogging network. It will make her feel so much better and know that she is not alone.
November 4, 2010 at 11:48 am
Thank YOU for not keeping silent. Thank YOU for being there for your friend. You know this already, but when I first started blogging, just longing to connect with another mommy who was going through the same thing, I was so blessed and thankful to have your blog the first one I clicked on and quickly became my favorite. You are an amazing writer and I’m happy to be sharing this journey with you.
November 11, 2010 at 3:24 pm
Thank you for sharing your story on Communication Shutdown’s page. I posted today on my blog for my readers to read ALL of the stories. I’m #7. Here’s the link
http://manyhatsmommy.blogspot.com/2010/11/i-was-chosen.html
December 2, 2010 at 7:55 pm
[…] son’s autism diagnosis and her friend’s son’s recent unexpected diagnosis. A beautiful post. https://trydefyinggravity.wordpress.com/2010/10/31/voices-carry/ 5. Amanda Forest Vivian on problems with the kinds of things non-autistics are trying to […]
November 1, 2011 at 9:05 pm
Bravo, my friend. BRAVO!