Tuesday night I received a message from Jess of the blog – Diary of a Mom – telling me she wasn’t feeling great, was supposed to get on an airplane the next morning to come to New York City to give a presentation, along with Ari Ne’eman, co-founder of ASAN (Autistic Self Advocacy Network) at CoNGO (Conference of NGO’s) in consultative relationship with the UN. She asked me if I’d be able to step in if she still felt awful Wednesday morning. I told her, not to worry, “we’ve got this,” urged her to drink liquids and get lots of rest, but that I fully expected her to wake feeling much better and that none of this would be necessary.
Fade to the following day.
Jess texts me to say she’s feeling wretched, definitely has the flu, there’s no way she’s going anywhere and has contacted the person who invited her to speak to tell him she can’t make it, but that she’s asked me and is hoping he’s okay with this change in plans. So we wait to hear from him and I go about my day, trying as best I can to not think about it.
Three hours before the event I was able to check my email and see that I’d been given the green light. I had a few things I needed to do before I could even think about what I would say, but because of an earlier conversation I’d had with Erich who organized the event, I felt I had a pretty good idea. Basically I intended to introduce Emma and begin by reading her A Letter to the World followed by Emma Discusses Awareness, a quote from something Emma wrote about Acceptance just a few hours before and ending with a question to Emma, “would you like to add anything?” An hour before the event I was in a panic, while Emma was cheerfully singing and dancing to Donna Summers, wearing her pretty party dress which she chose specifically for the presentation.
We arrived and Ari gave a terrific speech about autism, acceptance, the reason calling a group of people “burdensome” and an “epidemic” is hurtful and problematic and then it was Emma’s turn. After I read Emma’s words about “Awareness” I said, “I asked Emma earlier today what she thought about awareness versus acceptance. Emma wrote, “I am aware of many things, and so are you. Acceptance takes more dedication.” I paused and then turned to Emma and said, “Do you have anything else you’d like to add?” I held her stencil board and gave her a pencil. Emma wrote, saying each letter as it was pointed to, “Yes. Autism was not something parents wanted to hear, but I hope that will change when more people meet someone like me.”
Applause.
I intended to post the video of the whole thing here, but our camera had a different idea and when we returned home, excited to see the footage, nothing had been recorded. And because we thought the whole thing was being recorded we didn’t bother taking any still shots either. So other than a few photographs of Ari, we got nothing. (Insert sad emoticon.)
Regardless, Ari and Emma rocked and I’m guessing at least a few people came away with a very different idea of what autism is and isn’t. And if I’m right then it was worth every second.
PS Jess, I’m hoping you’re feeling better.
Ari Ne’eman
Emma's Hope Book 
Thank you, Emma and Ariane!
What a huge step forward!
Oh no! Bummer that it didn’t get recorded. :-(. But I’m glad that it went well.
oh my that made me tear up, so proud of her!! (and you Ariane 😉 ;))
Another amazing moment for Emma. I am so glad to see you share the wonderful steps she is taking. I was hoping there would be video, but I also know that cameras are not always co-operative. Everyone there has some great memories and memories still count for a lot.
The camera situation was one huge fail and a huge disappointment to all of us. Mostly though I wanted a shot of Emma wearing her party dress and spelling out her beautifully wise words in front of the audience. Also a shot of Em with Ari would have been nice… next time…
The tears are running. You are all awesome.
(((Colin)))
More and more fabulousness! Spectacular!!
my dear mentor emma. you inspire me. sending you a private email now. proud to be with you, b
Received and replied. You’re fabulous, wonderful b.
Congratulations! It sound like it was a stellar presentation!
Awesomeness all around! If anybody can get the message across it’s Emma, Ari and you.
Amazing! Too bad amount the camera (sad emoticon indeed), but super-extreme-awesome congratulations to you all for spreading the message of acceptance and love.
Camera = 😦
Ari & Em = 🙂
Congratulations to you both! And that’s what it takes, Emma, people being brave enough to stand in front of others and share their lives. All the best to you and your mom!
Congratulations Emma and Ariane.
As I said last night, I am so, so grateful to both of you for everything, but particularly to Emma, for raising her voice, in her own exquisite way, on behalf of my girl. So much love to you both.
💞
Thank you Emma and Ariane! Em you are so brave , so intelligent and paving the way for so many. All of your writing presented last night is helping shift old attitudes. I could not agree more with what you wrote last night- more parents need to see the beauty in autism and they will because of you, I know they will.
Henry and I have been talking about you a lot today,we miss you and H says he has another story idea. We’ve also been talking about the delicious cake you made for my birthday last year- the cake and your beautiful song were so wonderful.
Love you!
(((Lauri))). It’s incredible to believe that we were with you at this time last year, it feels like years have gone by!
So miss you guys!! Let’s discuss H’s story idea and also make other plans… XXX
Emma is a star 🙂
Wow, incredible! Congratulations to you both!