Our Amazing Adventure

Emma gave me permission to blog about some of our day yesterday.  I asked her, “Is there anything you typed that you do not want me to write about?”  She typed, “No.”  So… here goes…

We are in Texas to work with Soma Mukhopadhyay.  I’ve written about Soma many times before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  By the way, Tito, Soma’s son (who is non-speaking and autistic) is the author of several books.  I highly recommend all of them.

Soma began the session using a stencil board and having Em point to the letter she wanted with a pencil, then took the pencil, wrote the letter down, handed the pencil back, and on they went.  By the afternoon session Em was pointing to the first letter and then the next and the next, spelling out whole words and even several words before Soma wrote all the letters down.  As the sessions are all being videotaped, the stencil board is by far the best thing to use, as it is clear when you are watching the tape, which letters Em is pointing to, where as a laminated letter board, or a keyboard would be more difficult to see as clearly.  Soma does not touch the person she is working with.  There is no physical contact of any kind, unless initiated by the other person.

Some people have accused Soma of manipulating the stencil board.  I have watched Soma work with my daughter many times, as well as with other students and beyond the natural slight movement that occurs when holding an object with one hand, I have witnessed no manipulation of any kind.  With Emma she used a full alphabet stencil board, so even if one wanted to somehow make her point to a particular letter this would be impossible without physically touching her.

They began discussing the weather and Em wrote that she likes it when it is windy.  Soma asked her to tell her anything at all about windy weather and Em wrote, “flying leaves”.  They then discussed temperature, how heat rises, the sun, and finally Soma asked her for the name of any state.  Emma wrote, “Colorado”.  Soma asked her why she chose Colorado and I smiled knowingly, believing that I knew the answer and expecting her to write something about how this is where her Granma lives and where we go to visit several times a year.  But Emma had something else in mind.  She went for the letter “b” and then wrote “Boulder”.

Okay, I thought.  Boulder, that’s kind of weird.  Richard’s best friend lives in Boulder, maybe she’s thinking about Steve.  Meanwhile Soma asked, “What happened there?”  And Emma wrote, “flood”.  And I sat there stunned.  You see, we are not a family that ever turns on the television unless it’s for a pre-recorded show or to watch a dvd.  We do not listen to the radio.  We no longer have the NYTimes delivered to our house as both Richard and I receive it online and read the news from our iPads.  Neither Richard nor I spoke (that we can remember) about the devastation that occurred because of the flooding in Boulder recently.  And yet, there is absolutely no doubt that others have and did discuss the floods in Emma’s presence, though it’s doubtful anyone spoke to her about them and yet here she was, writing about the floods.

The afternoon session began with Emma choosing “story” from a choice between “story” and “number”.  Soma proceeded to tell a fable about a crane and a fox who were friends.  The fox invited the crane over for dinner and prepared meat for the crane which was almost impossible for the crane to pick up with his beak and the fox watched with great delight as the meat fell from his beak over and over.  Soma talked about how the fox was having fun, but mean fun and throughout all of this asked Emma clarifying questions about various words, all of which Emma knew without hesitation.  But the fox underestimated his friend the crane, Soma continued.  She then asked Emma what she thought about the word underestimated and Emma wrote, “less expectation”.  The story continued with the crane being polite and asking the fox to come over the next day for dinner at the crane’s house where upon the crane served the fox soup in a jar that the fox could not drink, except to lick the sides.  Soma then asked Emma for the moral of the story and Emma wrote, “do unto others”.

Soma used Emma’s interest (anxiety?) about the time and how long the session was going to last, to discuss time and the calendar year and then asked Em “how would you like to be treated by others?” Emma wrote, “I want to disappear when people talk about me.”  Soma asked a clarifying question about situations that she was specifically referring to and asked if Emma felt that way when people said nice things.  Emma said, “no”.

Later, using a laminated “yes” or “no” card that Rosemary Crossley uses and gave us, I asked Em more about this.  It came out that people are “mean” to her on the school bus.  I asked her if people were mean to her at school and she wrote, “No.”

Today we go back for Emma’s next two sessions with Soma.   As they say in the 12-step rooms – more will be revealed.  I cannot write about how I feel, other than to say, Soma is doing amazing work.  She has been doing this work for close to two decades, everyday for hours at a time.  I am learning a great deal, but will I be able to replicate what she is doing?  No.  I won’t.  Not yet, anyway and I don’t expect to, but I can get better with practice and I can apply what I see Soma doing with other things I’ve learned that Emma has responded to.  But more than anything else, I can continue to stretch my limited mind and limited thinking, (my neurological deficits) and practice, continue to practice expanding my knee jerk “truths” until one day perhaps I will no longer feel incredulous at what I continue to witness, not only with Soma, but with a great many people, all of whom have devoted their lives to finding ways for people like my daughter to communicate.

I want to disappear when people talk about me.

*I have read this to Emma to make sure what I’ve written is okay to publish.  She has given me her permission.

Soma and Emma

Soma & Em

28 responses to “Our Amazing Adventure

  1. It is great that you are listening to her and are able to know what/who is bothering her *now* while it’s happening, so you can do something. It matters more than you might know.

  2. Emma’s comment that she wants to disappear just tugs at my heart. I see so many similarities with your daughter and my daughter Bella. We go see Soma in November for the second time. Thank you for sharing your journey. Please thank Emma too. I will be showing Bella your post today.

  3. Even neurotypical children feel that way when they are teased or bullied and sometimes never express their feelings. Kudos to Emma for speaking up about how she feels!

  4. I send you both lot’s of love from Turkey. So wonderful that you are finding solutions after solutions and Em is leading the way.

  5. Sounds like Emma is doing awesome with RPM. You are so lucky to be able to work with Soma directly.
    Also, because you (and others) have spoken so highly of RPM, I started researching it for Nathan (4). Today we have a consultation with the person in our area who does RPM and was trained by Soma. I’m strangely nervous about this. Anyway, I just wanted to say thanks for sharing what has worked for Emma.

    • Oh do keep me updated. I’d love to know how it goes.

      • First 10 minute were an epic fail! He cried. He screamed. He fought like a feral animal to get out of that room. But she worked through it and he settled down next to a curtain that he could stim on while she asked questions and put his two written choices in front of him. He kind of settled in after a while and his level of hatred dropped to strong dislike.
        Of course, when we got home I wanted to show my husband how it was done, so I asked him if he wanted a hot dog or soup for dinner. He was completely focused and watched as I wrote out and spelled the words and chose soup. Then I asked if he wanted veggie or chicken soup. Again, watched and chose chicken. (Not sure if you’re supposed to use this technique with opinion type questions….all that was done today were factual questions.) So….I guess we’ll try it for a few weeks and see how he handles it. I don’t want him to be so upset when we go and do this with her. But maybe he just needs to get used to the technique. We decided that a 20 minute (vs 30 minute) session would be better to start off with. We’ll see how it goes.

        • Beth – this is great news! My impulse is to ask tons of questions and to work with Em constantly. But I also know and respect how tough this is and so am really trying to retrain myself from doing more sessions with her beyond the two a day we are doing here with Soma. As Amy Sequenzia has reminded me a couple of times, she needs down time. She needs to know there are times when she will be expected to work and times when she needs to just be left alone. I keep having to remind myself of this.
          20 minutes sounds reasonable for a four year old. I can’t even imagine where we’d be if I’d started doing this when Em was just 4. So great you’re not waiting and diving in NOW!!!

          • My initial thought was: “It’s great news that he screamed and cried for the first 10 minutes?” But you are right, the rest of it is great. He did calm down enough to make choices, and he did awesome at home with me. I am hoping that all his therapists can get trained in this so that it can be done during therapy (since it is very play based doing a few minutes of table time won’t kill him) so that he can preserve his downtime. I am extremely selective when deciding what he should participate in to preserve the downtime.
            Thanks so much for the words of encouragement! I am hopeful that this will be a good fit for Nathan and that because we are starting when he is so young he will make big gains through it.

  6. Oh Ariane, thank you and even bigger thanks to Emma for allowing her story to be shared. I felt great pain, but hope, as well. I’ve never even heard of Soma. Please continue to inform us. I would very much like to know the outcome of the bus situation. ((hugs))

  7. What an incredible tale. Emma is so amazing! I wish Marisa had the opportunity to work with all the incredible people that she has.

    As for the bus situation – I would for sure get to the bottom of it. Risa rides the bus with her brother, but next year when they go to separate schools I’m sure I’ll be driving them both, as I don’t want her on the bus without Jesse. I’m sure she has felt the same in numerous situations and cannot voice it, which breaks my heart all the more. 😦

    Tell Emma we said to keep up the good work!! 🙂

  8. Oh to both of you…..big hugs…..
    How important now that your daughter Emma has spoken up….if I might suggest, from what I have learned in my daughter Emma’s journey…before you call, discuss with your daughter and ask her what she would want you to do.

  9. The most amazing adventure of all. Thank you all for sharing so much.

  10. I in officially met you and Emma in Syracuse this past July (i was with the group with Tracy Thresher) and have been following your blog almost religiously. I am a one in one support person for a 23 autistic adult. To see your journey that you are one with your daughter is amazing. So often I’ve run into parents that doubt their autistic child and don’t alway support them or even listen to/acknowledge their intelligence. My daughter is only 2 and not on the spectrum and has no disability, and yet I find myself striving to be half as supportive as you are with Emma. Kudos to you and thank you!

  11. Oops, that was supposed to be unofficially, not in officially.

  12. Ariane, love your blog. My son started learning RPM via a speech therapist in our school district that was trained and certified by Soma. He has a few words, less than Emma does, and RPM has been life changing and eye opening for him and us. Our experience was much like what you describe here with realizing just how much he had been taking In and assimilating all the years he wasn’t able to effectively communicate. Two years into it and I’m still in awe of how much he has learned when so many assumed he was in ” his own world.” He’s made it abundantly clear that he is most definitely listening, understanding, paying attention. We must must must assume this is the case with all autistic children.

    Also, I’d like to encourage you to try RPM with Emma if you are so inclined. It can be a hard skill to transfer BUT my son has been doing RPM with me for about a year and a half. We are on the laminated qwerty board and working some on the iPad as well. He has also been able to use RPM at school to communicate with certain aids and even as a way to participate in class. Him being able to rpm with me has been a true Godsend. I wish you and Emma all the best on this journey.

  13. Hugs and love to you and Emma. Thanks to you both for sharing your journey…

  14. Pingback: Changing Our Thinking | Emma's Hope Book

  15. Pingback: How We Got Here | Emma's Hope Book

Leave a Reply to arianezurcher Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s