Blowing Bubbles
Emma’s Hope Book is a blog written by Emma, and occasionally she invites her parents, Ariane Zurcher and Richard Long to contribute. This blog began as a document of what her parents thought, but when Emma began typing to communicate in the fall of 2012, she proved all those previously held assumptions wrong.
Emma’s Hope Book is where Emma publishes her short stories, poems, insights, and opinions, particularly about autism. Emma wrote, “my mind talks heavy thoughts, but my mouth talks silliness.” Emma writes by typing on a keyboard synced with her iPad and wishes people would “listen to my writing voice, but they listen to my talking voice instead.”
Copyright: Emma’s Hope Book is written by Emma Zurcher-Long, and occasionally Ariane Zurcher and Richard Long contribute posts. Anyone may reblog any post from this blog onto theirs with the appropriate link included. However we own the copyright, distribution, and content of this blog and all the posts exclusively. We reserve all rights to our writing. Unauthorized use and/or duplication of this material in printed material without express and written permission from Emma Zurcher-Long, Ariane Zurcher and Richard Long is prohibited. Please contact us here or at – emmashopeblog@gmail.com. Once you have our permission, you must give proper credit of authorship and link back to the original post.
Comment Policy: All new comments submitted will be published pending moderation. You may politely disagree with content, but if you write anything, anything at all, that is in any way dismissive or critical of the words Emma so painstakingly writes, your comment will be removed. If you use your comment to attack, are aggressive or use threatening language, your comment will be deleted. If you continue to write such comments you will be blocked.
Emma's Hope Book 
wow. good luck, good luck. keep us posted please.
thanks for including me… good luck with all and god bless – your love and energies will help her through this and yourselves… we are all behind you.
thank you for sharing your courageous journey. emma is in our thoughts and prayers. plse continue to keep us posted on her progress.
Hi Ariane, thanks for sharing your blog. Emma has and always will be one of my daughter Rebecca’s favorite girlfriends…fight on warrior momma.
Ryan, Susan, Rebecca and Rachel Young
Dear Ariane,
You may not remember me — I have been with the Music Festival in Aspen for 31 years; your mom has hosted some wonderful chamber music concerts in her home for the students in the Festival’s chamber music program, and you helped me pick out some gorgeous earrings last summer at your show at the Jerome. I have taken this summer off. Your sharing of the day-to-day loving and yearning for your daughter and your family is extraordinary. I am moved beyond words. I am sorry I am not in Aspen this summer to see you and your mom. All of you will be in my thoughts as you return to Panama.
Barli
Helloooo to you in Panama!
sending good thoughts and hoping all goes smoothly.
xoxox
As a mom of a child with ASD, I truly empathize with you. We had our son take the CamKinase test through Dr.Madeleine Cunningham. His score was off the charts!! We are now seeing an immunologist and going through the healing process. Our son has also tested positive for Lyme. There are many things going on with these kids. It is an impossible situation as a parent – being mom and reearch scientist….Hang in there. God bless. Karen
Hello, I am jennifer and I am 16 years old.. I comes from the Netherlands. Sorry, My English is not perfect.
I have also Autism. You have a beautiful homepage, with a lot of information about Autism.
I have also a homepage about my autism. You can look if you want. http://www.jennifer-smits.webklik.nl.
You can write in my guestbook if you want.
Hello,
I am an educator in Toronto, Canada that has been working with kids on the spectrum for a few years and find your blog quite moving. I am a great promoter of Autism Awareness and wish there were more blogs like yours. All the best to Emma and her family!
Thank you so much Jason. My husband and I have been consistently amazed and awed by those who have chosen to work in the field of autism. We have found you are some of the most caring, dedicated and bright people we have come in contact with. You are a noble group and so under appreciated.
My son has ASD. I knew what he had before his Drs. they have tested him for everything, we have found nothing that works. But just recently (he will be 6 next month) he has started having clear moments where he will ask why doesnt his brain work right all the time. The Dr says he is improving so well now that he may be able to live on his own when he is grown and have a somewhat normal life. the only food that helped was when he was involved in a trial study with the THC brownies. he would go to a clinic onece a week and they would give him a cookie or a brownie, after the first one he showed improvement. I know there is alot of controversy over that type of treatment but i think that the medical community needs to research ALL the different therapies, because if one helps just one child with ASD then it is good. Thank you for having the courage to put your lives out there like this. it helps the rest of us to know that we arent alone.
This is such wonderful news – something is working! I love hearing that. I am not familiar with this intervention. What clinic is it? Where is the clinic? Thanks for reaching out.
Emma is such a beautiful girl ~ i haven’t seen her this year and the photos show me how beautifully she’s growing up. The Gymnastics looks fantastic!
I have lovely photos of Emma from the Miracle Project. Did you get them? If not, let me know and I will send them.
Your project on this blog is inspiring!
Hi! I have a few from the Miracle Project, but only a few. Would love to see any that you have. It’s good to hear from you.
(Lesly – Jaden’s mom!)
I admire your writing so much. your Emma sounds alot like my Connor. He is 8. Can you please PLEASE tell me -is the oxytocin available in the US? All research I am finding does not show that it is, and I am desperate to try this for C. He, too, has tried EVERYTHING. The research on this looks great…I just need to know who to contact. we are in Florida. Thank you
Hi Heidi,
Thank you for reaching out. We live in New York City. I googled “compounding pharmacy in NYC” and found one that was able to make it up. But the first thing I did was contact Emma’s neuro-psychopharmacologist who was able to write up a prescription. We went with the lowest dose, just to be on the safe side. It is subtle, the shift, but we think, we hope, what we think we’re seeing is real. Like everything it’s really hard to say. We also have her on 8 different supplements, which I think, are also working. Again, it’s hard to know for sure. These are certainly NOT cures, but they seem to help. Let me know what happens.
Hello, I was reading your website and see that your daughter attends the Rebecca school. I am considering this school for my little one and wonder if you would share your experience and feelings about the school with me?
Hi Krista,
I’ll email you off the blog about it. Best, Ariane
Hi, I read the freshly posts occasionally. I feel very lucky to stopping by your blog. Love reading your words.
Good luck with this …
Thank you for adding me to your blogroll. It’s truly an honour.
– Sarah
amaizing thing, good luck Guys, I’ll be checking on this page
Thank you for sharing this wonderful journey. Just found you through MyAutismTeam.
Hi … a friend of mine shared your blogpost from January on “Try to Imagine”. My adult son is not challenged with autism but does have complex physical and communication challenges, and I share your perspectives on imagining what it’s like for him. Check out “my take” (http://3rdtimelucky.com/my-take/if-you-know-how-to-teach/) and you’ll see we have much in common.
Thank you so much for posting this. I have a 31 yr old son diagnosed w Aspergers one year ago and I am convinced he also has PTSD. I haven’t found much info about it. Nor have I found anyone who could treat both together.
Marilyn – I don’t know if you signed up to get notified when people post new comments so you might not even see this, but I hope you do! I have Asperger’s and have had complex PTSD.
I’m 35. Twelve years ago, one of my best friends (and my roommate) finally admitted he was an alcoholic, joined AA, and started working the twelve steps like crazy. (In retrospect, he almost certainly had asperger’s too, but neither of us had any idea what it was back then.) I watched his life transform over the course of a year, increasingly desperate to find something that would do the same stuff for me… let me deal with frustration and shame and fear without having meltdowns or retreating or otherwise freaking out, for example. I finally joined a twelve-step group that focused on codependency, and then a whole slew of other twelve-step fellowships around sexual abuse and money and work and all kinds of things.
I did not realize until very recently that I had Asperger’s because working the program made it possible for me to learn social cues, experience empathy at a whole new level, speak with others privately and publicly without fear, and so much more. It relieved me of my triggers, one by one. (and sometimes in bunches!) It showed me how to have healthy relationships with other human beings and with myself.
That’s just the thumbnail version. It wasn’t until recently that I learned enough about ASD, and how it’s treated in adults, to realize that I got “treated” for it accidentally when I started working on all this trauma stuff via the 12 steps. And that if I looked at how I was before recovery, and in early recovery, I had every single trait in spades – I just didn’t know what to call it, and wasn’t self-aware enough to notice a lot of it.
For me, there’s an enormous amount of overlap between the ways that ASD manifests in my life and the ways that PTSD manifests. As best as I can figure out right now, maybe it’s like… the Asperger’s traits that I DON’T want, that disrupt my life, are the ones that in my experience are due to, or greatly exaggerated by, trauma.
Anyway, I would be happy to share resources with you or answer any questions you have if you are curious or think it might help you and your son! (I also know someone who wants to start a twelve-step fellowship specifically for PTSD, if anyone is interested in that.)
I can be contacted at danicastone@gmail.com. (If anyone else sees this and wants to talk or ask questions, they are welcome to contact me there too. But please start your emails with something like “I saw your comment on Emma’s Hope Book and I wanted to ask you about Asperger’s and twelve-step,” or something similar, so I know what you’re talking about!)
I am a special education instructor at the Central Park Zoo and came across a post about the zoo from 2012. I was so interested by it and I wanted to let you know about an event we are hosting this Saturday April 19th. This is a special autism awareness early opening event. While we would still request not sitting on the railing :), there will be a lot of other fun like animals guests, crafts, and a special animal search. You can get tickets on our website http://www.centralparkzoo.com and feel free to contact me with any questions 212-439-6558!
Thank you so much for telling me!
“my mind talks heavy thoughts, but my mouth talks silliness.”
This touched my heart so much.
Hello Emma
I am finishing my doctorate in Special Education. My research question is what it is the experience of speaking through/with a device. I wonder if you might be interested in talking to me about your experiences? I can see already that you have had some real moments that would be very useful in helping people (and I am mostly focused on teachers) understand what it is really like. Thanks for considering this.
Hi there, Ariane here. Let me ask Emma and get back to you!
wonderful…
Thank you!
kathy
On Sat, May 24, 2014 at 9:31 AM, Emma’s Hope Book wrote:
> arianezurcher commented: “Hi there, Ariane here. Let me ask Emma and > get back to you!”
Ms Zurcher – I have a favor to ask. I have been collecting first person accounts (articles, memoirs, blogs, videos, etc.) by people with autism. Professionals like myself have spent far too much time “working on” people with autism and not nearly enough time listening to them. I hope to use this material to strengthen the voice of people with autism. I would very much appreciate you asking khowery to contact me. I would really like to know more about what he/she has learned. Also if you know of others that might have relevant information I would appreciate your letting me know. I will gladly share all the references I collect with anyone who asks.
Thanks,
Wade Hitzing PhD
1045 Wittman Drive
Fort Myers, Fl 33919
whitzing@earthlink.net
239.850.1097
Hi Wade, I think by posting your comment here, Khowery will see it, at least that’s what I hope.
Yep… I will email you today Wade. Would be happy to share what I have and what I can Kathy
Your blog is so uplifting and helpful! Thank you so much for being a voice for parents and children with autism everywhere.
Aw… thank you so much Anna. That’s really nice of you!
I am so thankful that I stumbled upon this blog… After reading several of your posts I can’t stop smiling through tears. I am a speech-language pathologist and am equally as much an advocate for teens/young adults who are nonverbal and have autism. I push and push and push everyone around me to presume competence… coworkers, friends, family, strangers. It is such a difficult concept for people to grasp and it literally pains me to watch any nonverbal person be disrespected or undermined in any way. I have had so many incredible experiences with students who are nonverbal that have taught me and shown my own eyes just how much they do understand and I continue to be inspired after discovering your blog. I plan on sharing your blog with all of my coworkers and possibly some of my students. I hope you and Emma will continue blogging for many years to come! Peace 🙂
Really appreciate you reaching out Alicia. Thank you.
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Like many autistic children, Emma has a much higher intelligence level than her nt peers. However, communication is much easier through writing than talking among autistic people. Being visual thinkers, the pictures and images flashing in our mind can’t always be categorized into the proper words, which is a frustrating experience.
I’ve heard this from several autistic parents, that the psychiatrists told them their child will never talk, or will never learn to read, and the kid did learn to talk, and a child whose parents were told will never learn is now going to college.
With proper help and support, an autistic child can go far. They just need to be given a chance, instead of psychiatrists who give up on them and write them off.
So glad this beautiful and highly talented child found her voice in writing.
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Hi there, just to clarify Emma types on a keyboard. no one is in physical contact with her when she types.
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Congratulations with finding a platform to help articulate your writing. Creative people will always find an outlet for their voice. A voice is not just about talking I see it as an escape hatch for our view of the world.
Inspirational Girl! Wishing you all the best
In the world xo
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Hi, Emma!
I love your blog. I found out recently as an adult that I am on the spectrum. I do not have any language difficulties and appreciate learning about what that is like for you and other who have so much to communicate. I am also a teacher and want to learn more about all the spectrum kids in my school. However, I also feel that I will learn about myself from your blog. I hope you continue to post here. Thank you so much.
Hi Emma,
I just recently saw your movie Unspoken! I think you were right, it got me standing up and applauding! You are a beautiful young woman. I know its many years later but I do hope you are continuing to spread the light and love of your mission. Blessings!