I’ve been waiting on myself to begin. I knew it was time to get back to this and I knew it was time for a shift. I shut down the old blog, bought a new name, and created a new site. A new chapter. But how to begin, Becca, how to start. The pressure. Y’all are like,...
My mom died on April 1, just a little over two weeks ago. I don’t know which cliché to use – does it feel like yesterday or years? Both, I guess. My mom was a young 74 and did all the healthy things – the exercising, the kale, the vitamins, the check-ups. I look like...
Well, it had to come. Some of you readers have been with me for a while now. You’ve read these random blogs and followed along on Facebook as Jax came home from China, was diagnosed with all the things, and proceeded to grow up into a teenage boy. He’s gone from...
So we’re homeschooling over here. It’s going really well, I’d say. We have great people, Jax’s anxiety is at an all-time low, he’s happy, he’s inquisitive, and importantly, he’s learning things that are relevant to his 14 year-old-life and skills he’ll use for his...
I have sucked as a parent lately. Truth. 'Tis the season for holiday lights and wrapping paper and for mom to be a stressed out asshole. That should be a Christmas carol. “Jingle bells, jingle bells, jingle all the waaayyyyy. My mom’s annoyed at everyone, please bring...
Dear Jax,It's Gotcha Day, little dude. We adopted you eleven years ago today. I love this day, but this year's celebration is bittersweet. Your grandmother died on Friday night. Your dad's mom, Grandma Mary. This year's Gotcha Day will be a little less inflatable...
Johnny made it to his Army base on Monday. Other moms are messaging me tips to survive boot camp, linking me to Facebook groups, introducing me to people who can show me the ropes. It's lovely, but I’m in a different sort of situation. “Hi Martha with your...
A day or two ago, Jax had an appointment with a psychiatrist. Jax has never met this man before, but I have, and I like him a lot. He regurgitates mountains of stuff from memory, has a Harvard degree, and is smart, smart, smart. All good stuff when you’re a mom...
Johnny, I've been down at the Capitol this past week fighting for a bill that would expedite the adoption of older kids. I'm pretty invested in it because you and I went through this. We had nine months to make your adoption happen, and had I not already had a giant...
And I quote: "And after fourteen years of foster care, Johnny was getting all As and Bs in school, happily helping around the house, had checking and savings accounts, and looking for his first job - all within just a few months of being adopted into a family. "...
I've spent the last few days outlining an open letter to the person who hurt Jax. A real doozy of a piece, cleverly called "Dear Person Who Hurt My Child." I was going to write and publish it this morning, throw it all out there and let the internet lovelies react to...
The adult who hurt my son will not be charged. I'm a lawyer. I get it. There are no witnesses, no physical evidence, and Jax ...well, Jax isn't the best witness. At 13, Jax still believes that Noelle the Naughty Elf stole my car keys and tried to take my...
I am a Helicopter Mom. No shame here, no self-deprecating humor, there is really no other option for this child tornado of mine. Maybe helicopter isn't the right word, I think I'm more like the car with the flashing lights that travels behind the Wide Load truck on...
I was coming out of an Ace Hardware the other day - feeling super handy, I might add - and on the way to my car, I saw a woman standing by a table raising money. It was a legit 100-gazillion degrees in Phoenix and I was entirely prepared to do the polite smile...
I was sick this week. Throwing up throughout the night, curled up in fetal position at the base of the toilet, not sure how clean the bath mat is, I do not even care, I will never eat blue cheese in a salad again, SICK. Being sick as an adult is lousy. Being sick as a...
Dear Johnny, I know this isn't where you thought you would be at age 17. Still in the foster system, a day pass on your birthday, preparing to be shuffled around again, and then again and again. I know. As a child, you must have thought ahead to 17 and pictured your...
Last week, a family asked about adopting my foster son, Johnny. A family. Adoption. This was a big deal for a sixteen year old foster kid who moved in with me last month because he had nowhere else to go and had every intention of aging out of the system as an orphan....
I had a moment recently. My son, Jax, and I had been in the car running errands for a few hours. I was singing along to the Beatles channel when Jax said, "Mom, I'm hungry." Well, yeah, breakfast was a hurried cup of yogurt three hours ago so that's reasonable....
A teenage boy is coming to live with me. Today. In eight hours, I will be an official foster parent. It's been only a few months, but I have notes upon notes about my short experience so far with this child welfare system of ours. I can't wrap my head around how we...
Last week, I was in my favorite place in the world with my 15-person family. Every few years, we head to a ranch in the mountains of Colorado. We've been going here since I was a little girl, and there is truly no place I would rather be. I told my clients I was out,...
I volunteered to go to an education meeting last week with a foster kid. This kid was in high school and not too interested in me at first. I didn't blame him, I'd never met him before and this was a child who lives in a constantly-changing world with...
It was late-September of 2008 when we brought my son home from China, just two months before December and our sparkly, over-the-top, American-style Christmas season. My little boy had no idea what Christmas was. He had no idea who Santa was. Hell,...
This time of year, man. It’s stressful and chaotic and my annual intention of providing a Pinterest-perfect Christmas lasts about a day and a half until I decide that F-bombs will definitely help me assemble the gingerbread house. Ahhh, December. This year, the...
Jax’s eighth Gotcha Day is coming up. “Gotcha Day” is the anniversary of Jax’s adoption from China. It’s the day Jax became our son, and like good adoptive parents, we celebrate. Jax gets a few presents, we decorate, we eat pizza and cake, we participate in general...
I was at a Ross the other day. I love Ross. There is one by my son's school, and on the days I don't feel like laptopping at Starbucks, I walk around in their exceptional summer air conditioning while having riveting conversations with myself about my need for their...
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April is Autism Awareness Month.
Because of this here little blog, I have become more aware of the online autism community. I have found that there are pages, forums, websites, chatrooms, and lots and lots of opinions. And to my surprise, lots and lots of discord. Truth be told, there is downright hostility out there, all in the name of autism awareness. While living under my rock, I truly assumed that those of us who live in the world d’autism were a team front. I was totally wrong.
Autism awareness is a simple concept with an impossible application. Because what I want you to know about autism isn’t what another mom wants you to know. It isn’t what the autistic teen or adult wants you to know. You might be autistic, employed and living independently while this mom over here has a non-verbal daughter who bites her teacher’s arm like a cheese stick. It’s a spectrum disorder, and the spectrum is the size of Montana.
Enter Autism Speaks – a household name and the preeminent advocacy organization for autism. Its Facebook page has 1.2 million fans, and its lobbying arm is so effective that I imagine even the automotive industry is jealous. Autism Speaks is at the forefront of scientific research, insurance reform, and tax-free savings plans. It offers toolkits, links to local resources, IEP guides, and an up-to-the-minute website loaded with information. Autism Speaks is global. Tomorrow, we’ll watch this organization light the world blue – the Empire State Building, Sydney Opera House, and St. Sava Temple, among others, will be blue on April 2 for World Autism Awareness Day. Autism Speaks does all this and more. This impresses me. They’ve got it going on.
Autism Speaks has the daunting job of advocating for 1 in 68 people, according to the latest CDC statistics. That’s a large group to represent, and it should come as no surprise that Autism Speaks does not impress everyone as much as it impresses me. Recently, Autism Speaks has come under a lot of fire. There was the op-ed piece by co-founder Suzanne Wright that came right out and said that families with autistic kids are not living, along with the video, I Am Autism, that showed a darker, eerier side of autism (although did anyone actually watch this video to the end where it became fiercely optimistic and hopeful?).
Some people called the video and the op-ed piece dehumanizing. I called them honest.
And there you have the great divide.
These two pieces of PR splintered the autism community. The splinter groups believe that autism should be accepted, not feared. We, as a society, should not marginalize differences, but embrace them. Some people are calling for a boycott, another group wants Autism Speaks’ non-profit status revoked, and many are calling for a complete restructuring of the organization.
I have another suggestion: if Autism Speaks doesn’t speak for you, perhaps it’s time to support another organization. Isn’t it that easy? (It is funny-ish that accepting people is at the heart of this debate because I have seen more acceptance exhibited by the Westboro Baptist Church than I have seen in some of these discussions. #TrueStatement)
If you believe autism should be accepted, and not treated and/or cured, then start an organization with that mission statement. If you think legislation and science should take a back seat to your local resources, then initiate a grassroots fundraising campaign.
If Autism Speaks doesn’t speak for you, then find another voice. Create another voice. Offer another voice. I will be respectful of the new voices, and I will listen to them. But please respect me, and stop trying to mute Autism Speaks’ voice just because it doesn’t speak for you. It speaks for an awful lot of us.
Some of us really, really need the science and the insurance reform and the legislative prowess. And yes, we need to know that other people out there understand how dark some days can be. I don’t think there is one ounce of shame in that. What some found dehumanizing gave others comfort and hope. There’s that spectrum.
I recognize how important social acceptance is, I absolutely do. But for so many of us, that’s like a home run dream…when our kids can’t even find the field.
I need to get my kid on the field. My money is on Autism Speaks to help get him there.
Autism Speaks #speaksforme.
Sincerely,
Becca
Lovely!
You rock.
Lovely!
You rock.
You’ve done it! You’ve made me not afraid to talk about it. I love having a smart lawyer friend!
You’re not afraid anything, amiga. 😉
You’ve done it! You’ve made me not afraid to talk about it. I love having a smart lawyer friend!
You’re not afraid anything, amiga. 😉
I have to admit that I was one of the people that judged Autism Speaks too early and too quickly based on a personal interpretation of their mission statement by a fellow Autism mom. I never asked anyone to follow my lead but I ‘liked’ a post that I did not read carefully enough (damn you FB on my phone!). I have not seen a ton of other negative press for Autism Speaks but I’m sure it is there. Becca, thanks for this perspective and for always fighting the good and FAIR fight!
I have to admit that I was one of the people that judged Autism Speaks too early and too quickly based on a personal interpretation of their mission statement by a fellow Autism mom. I never asked anyone to follow my lead but I ‘liked’ a post that I did not read carefully enough (damn you FB on my phone!). I have not seen a ton of other negative press for Autism Speaks but I’m sure it is there. Becca, thanks for this perspective and for always fighting the good and FAIR fight!
Does anyone know if Phoenix has any buildings that will be lit up blue tonight???????
Tara Forstrom
Only ones listed on the AS LIUB website are Brookline College and Fashion Square. Was hoping for something downtown. I’ll google!
Does anyone know if Phoenix has any buildings that will be lit up blue tonight???????
Tara Forstrom
Only ones listed on the AS LIUB website are Brookline College and Fashion Square. Was hoping for something downtown. I’ll google!
on Speaks’ fear rhetoric according to rebecca: “What some foind dehumanizing gave others comfort and hope.”
So saying “Sieg Hiel!” is apparently comforting to you?
Who is being offensive, Nate? The author who writes a candid post? Or the commenter who calls someone a Nazi sympathizer? I imagine most people who disagree with my position are still going to side with me on that one. If you have an intelligent comment, bring it. Otherwise, save your hateful, thoughtless rhetoric for another page.
you need to understand just how hurtful Speaks’ message is to many autistic people like me.
I do understand. All I ask is an understanding of how helpful it is to others.
oh and by the way we DO have our own organizations, such as the Autism Society of America, which have been around since the 1960s. there’s also the Autistic Self Advocacy Network, the Autism Women’s Network, ANCA Naturally Autistic, the Golden Hat Foundation and GRASP, which have autistic board members unlike the organization you support.
We’re going to agree to disagree here, Nick. And that’s ok. People can do that.
on Speaks’ fear rhetoric according to rebecca: “What some foind dehumanizing gave others comfort and hope.”
So saying “Sieg Hiel!” is apparently comforting to you?
Who is being offensive, Nate? The author who writes a candid post? Or the commenter who calls someone a Nazi sympathizer? I imagine most people who disagree with my position are still going to side with me on that one. If you have an intelligent comment, bring it. Otherwise, save your hateful, thoughtless rhetoric for another page.
you need to understand just how hurtful Speaks’ message is to many autistic people like me.
I do understand. All I ask is an understanding of how helpful it is to others.
oh and by the way we DO have our own organizations, such as the Autism Society of America, which have been around since the 1960s. there’s also the Autistic Self Advocacy Network, the Autism Women’s Network, ANCA Naturally Autistic, the Golden Hat Foundation and GRASP, which have autistic board members unlike the organization you support.
We’re going to agree to disagree here, Nick. And that’s ok. People can do that.
There are other organizations that we support. Support of an organization that actively pushes for eugenics and abuse of autistic people? SPEAKS FOR YOU. Really? Are you kidding me? Nice to know that you enjoy abuse and eugenics and actively hurting autistic people. We are people. We are people. That’s too much for you, apparently.