“Music is Stars for your Ears”

Profound. Poetic. Always unexpected. When Emma writes (in this case she was typing), she is able to express herself in a way that she isn’t able to with speech yet. But what she has to say is always (to me at least) profound, poetic and unexpected.

Take that above line for example. As she slowly typed, letter by letter and got to this point: “Music is star…” I wondered, where is she going with this? And no matter how many times I witness her write, I never cease to marvel at what she ends up saying.

It’s Richard here. Ariane has been traveling for the last two weeks doing her Holiday Trunk Show in Chicago and for the last day today in Aspen. She hates it. She is an incredibly talented, award-winning jewelry designer. Just take a look here and see for yourself. She began designing jewelry after some prodding from me because she had become so obsessed with autism and (many years ago) with finding a cure, that she was stressed out to the snapping point.

Ariane went to school for fashion design with a bunch of today’s top name luxury designers–an exclusive class at an exclusive school. But she hated the fashion world. I suggested that she channel all that talent and creativity in a different direction, so she wasn’t spending every waking moment of her life reading books about autism and searching the Internet for the latest studies and therapies and anything else under the sun she could discover about autism. That inexhaustible search led her to discover the blogs of autistic adults, films like Wretches and Jabberers, Supported Typing, Soma’s RPM, the Intense World Theory, and a hundred other things that have completely transformed our family in the most wonderful way possible. And by sharing her/our journey on this blog, I believe she is making the world a better place, day by day.

Ariane would never make such claims about herself. I’m happy to. She invited me to write a guest blog today while she is doing her trunk show. I’m certain she thought it would be all about Emma, but “heh heh” as Ibby would say.

If Ariane had a partner that handled the business side and left her free to simply design jewelry, she’d probably still be having fun with it. But these trunk shows are definitely a drag. I know for certain that she would much rather spend the day writing a blog post, replying to comments, working on one of the books she’s writing about her/our journey, reading more books and articles, chatting with her friends, getting a manicure–basically anything other than sitting around in a hotel room, waiting/hoping for people to stop in and buy some of her amazing designs so she doesn’t hate being there even more. So if you’re in Aspen, stop in and say “hi!” Oh, and bring your wallet. If you’re not in Aspen and love jewelry, or just love Ariane, send her a note, or a message or call, or Skype–or buy some jewelry after browsing on her website. She would never say such things here, or anywhere but once again “heh heh.”  I, for better or worse, am and shall always be: The King of Bluntness.

Now, after that shameless plug, let me talk about the session I had with Emma and “B”, who helps with Emma’s written communication, using Soma’s RPM method. Yesterday was a milestone because Emma used a keyboard throughout the entire 45 minute session, instead of the stencil board or letter board she usually uses. This was clearly a stressful adjustment for Emma, but she soldiered on bravely, and as usual, wrote some amazing things. Profound. Poetic. Always unexpected.

Rather than editorialize, I’m going to relate the entire session, using B: and E: for Emma. Some of B’s statements are paraphrased. All of Emma’s responses are exactly what she wrote, because the keyboard was connected to an iPad and it was all recorded.

B: What history topics are you interested in?

E: music, history, country, the world, the playground

B: Tell me something about music.

E: Music is stars for your ears.

B: (B gives a lesson about the origin of blues music with slavery) What kind of music are we talking about?

E: blues

B: Tell me something about our country in the 19th century as opposed to the 20th century.

E: there were slaves

B: What can you say about freedom?

E: less freedom when you are someones slave.

B: What do you think singing (the blues) did for them (slaves)?

E: how about it helped the crops grow.

(There was an interesting blurt Emma did here: “You left him there to die!” from her favorite movie Two-Headed Shark Attack. It speaks to me of injustice, self-interest and the horrifying results)

B and Emma then did some “Call and Response” blues-style singing together.

B:  What would you say about that?

E: when you call your friend they should not ignore you.

B: Can you come up with a call and response song?

E: I like to eat cake

the sweet is so nice

They sang these verses together a few times (ultra-sweet!).

B: Where in the country does the blues come from?

E: south

B: Do you have something to say about this?

E: there is fun music in the north also.

B: (B plays a video of BB King singing “Stormy Monday”) What do you think about that?

E: stormy tuesday it was. (the previous day was Tuesday and it was stormy).

B: (B tells a story about a teenage boy who was lost and later found by a homeless man who called the police and contacted his mother. The mom was very grateful and rewarded him.)

B: What did I say about the man?

E: homeless.

B: The mom was grateful. Why?

E: he found the son.

B: Years later there was a news article about the man whose name was Leo. Another man named Patrick used to pass Leo every day on the way to work. They began chatting. One day Patrick gave Leo an offer and he had two choices:

1. $100

2. A laptop, lessons everyday for an hour in computer coding.

(Leo took door #2, and in the article Leo coded an app later.)

B: What was one of the options?

E:  money

B: What do you think about the story of Leo getting lessons and coding the app?

E: he needed to get rewarded.

B: Any message for the world about anything?

E: hearing my response to your call is like being at a fun amusement park.

Image

And being present for all of this was like being in a fun amusement park too.

“Music is Stars for the Ears.”

Yes, it certainly is Emma. It certainly is.

Happy holidays to all! See you Saturday Ariane. Emma and Nic are counting the days and so am I!

28 responses to ““Music is Stars for your Ears”

  1. What a delightful guest post! Happy holidays to you too!

  2. Aw… I just love what Emma thinks and writes. It’s so beautiful! I hate that I missed witnessing her write this. I really, really hate it because, truthfully, these moments, these milestones, and they are coming every week now, are what are most important in this life, in this world. Mom always said it is our relationships that matter most and she is, as usual, right.
    But… bills need to be paid too, so it’s that tricky balance that I never seem to get entirely right.
    Thank you for this lovely, (blunt) blog post. Can’t wait to be with all of you soon!!!

  3. I don’t seem to have individual reply options as guest poster so love back at ya Ariane, I can’t wait either. And thanks to you Lyon 🙂

  4. It’s so interesting to read Emma’s responses. In the few that have been posted word for word, she always responds in a different way than I think she will. Which is awesome, because the world needs all types of thinkers.
    And, Ariane, hope your trunk show went well!

  5. What a lovely post Richard. I loved reading all the love going out of you.

  6. Sometimes people ask me for a quote of what I am saying and I don’t know what to quote myself as saying. Richard, yours is the best. Also thank you for writing the truth and being blunt. All the people like our wives who go around being lovely while having secret pain and tiredness need us blunt people to sneak in behind their backs and do the bunny ears of love sometimes 🙂 And I want to come over and hear Emma make stars for my ears with her singing again. And I miss you and Nic too. All of you awesomes!

  7. Thanks so much Beth and Corbett. I’m glad to have a chance to share 🙂

  8. Dear Ib: “Heh heh.” ❤

  9. Thank you for stepping in for both Emma and Ariane, Richard! Imagine how wonderful the world would be if all husbands would pop in every now and then and sing their wife’s praises!!!

  10. I can’t tell you how much I enjoy reading these highly visual, thought-provoking phrases from Emma. The number of times she makes me stop reading just to think about the multiplicity of meanings behind her poetic words. Beautiful. ❤

  11. I agree with Alex! Her words bring up such powerfully visual imagery when you least expect it. It’s really a gift! And I’m not anywhere near Aspen, but I’m glad Ariane has the support she deserves from her family back home!

    I have a question which maybe has been answered somewhere else, but I’m just a little unclear. I know about RPM and I think it’s brilliant that Emma’s finding a voice that way for all the wonderful things she has to say, but when you add that she had an “interesting blurt” or talk about her singing with B, is she using her speech-voice? There’s certainly no judgment on my part either way! I know that some primarily non-verbal autistics enjoy using speech to quote or sing, but prefer typing or AAC for other things, and I was just wondering if that described Emma. Thanks!

    • Hi! So this is a direct quote from Em about her talking voice – “My mouth constantly talks different than my mind thinks.” She also wrote, “People listen to my mouth voice and not my writing voice.” I’ve written about Em’s speech before and grappled with how to describe it, the best I have come up with is that Emma speaks words that are not what she necessarily intends. (She has verified that this is an accurate description of what happens when she wants to say something, but something else comes out of her mouth.)
      Doing RPM she is able to express herself far more eloquently, and as this last post states, she is moving now to the iPad to write her thoughts.

      • Oh ok! That makes a lot of sense! I’m really really glad that she’s finding ways to express herself and her thoughts and exactly what she intends. I was really just curious what it was like for her, and by no means did I mean to imply any sort of “should” or “better” or anything. In fact, the #1 reason I’m leaving my graduate program (for speech pathology) is because of the disrespect shown to those of us (myself included!) who find self-expression easier and more fluid with writing, AAC, sign, stimming…and any number of non-speech systems. The beauty of language is in taking what’s in one person’s mind and letting that same thought be held and played with by another person’s mind. NOT in following rules and adhering to expectations. I really hope that if Emma chooses to use her talking voice from time to time she does it happily and of her own volition, and with the knowledge that her writing voice will be what people listen to if that’s what she wants.

        • No, no, I didn’t take your comment to mean anything other than you were interested in understanding.
          It’s funny how speech therapy was so emphasized for Em (and continues to be by people like her pediatrician etc), yet communication takes a back seat in so many people’s minds. Thankfully we have a really great communication person at Emma’s school who is interested in communicating with her in whatever way that works best (for Emma). Em definitely cannot converse through spoken language (at least not at the moment), but she is doing a brilliant job through her writing! Both my husband and I feel so grateful and excited to be able to witness each day her growing confidence and words. We are so very lucky!

  12. Wonderful to hear Daddy’s voice. Richard so refreshing to hear such open
    honest love and admiration in your post. Both my husband and I have taken so much guidance from your great women in giving our son (1 week older than Emma) the opportunity to explore a life that we might otherwise have missed. We would never have known about our other autistic heroes either. Ariane I know only too well what it is like to have to work away sometimes. Your family are in such good hands, use your time to recharge your own battery. I love Emma’s take on life and her description of her talking voice. ‘Communication is not just talking’. Love from your Irish pals.

  13. Thanks so much Grainne, and I feel the same way you do–I would never have discovered all the wonderful people and life-altering concepts that Ariane has brought to us.

  14. I am a big fan of Emma’s beautiful words. The love that you and Ariane have for each other and your love for Emma is truly an inspiration. Ariane’s selfless giving of time to people such as myself in the ASD community is very special.

  15. “Music is stars for your ears” is my new favorite phrase. Thank you Richard for sharing it and thank you Emma for writing it.

  16. I am thrilled by this post, in so many ways! Emma, bright star, you are star shining in super-glittery-amusement-park-everything! Richard, not only are you so charming, but kudos to you for you blunt praise if fantastic Ariane. It needs to be done, and how!!! Let’s all do it more!!
    Ib, bunny ears:) BUNNY EARS!! YES!
    Merry Christmas, dear ones, and that includes all those who gather at this continuously beautiful blog. You have made me fall in love with you. Deeply.

  17. Pingback: Supercharged | Blue Dog

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