Tears and Love

This past Saturday we took Em to meet and have a session with Soma Mukhopadhyay, who developed RPM ~ Rapid Prompting Method for Autism.   I’ve written about Soma before, ‘here‘ and briefly on a number of other posts.  If you want to read those old posts you can put “Soma” into the search box and everything I’ve written mentioning her will come up.  A word of warning, however, those early posts show a very different mind-set regarding autism and my daughter than the one I now hold.  I find it difficult to read them because I had so completely bought into the Autism = tragedy mode of thinking.  As anyone who follows this blog knows, this is not the view I hold now.  It is good to see that my daughter is not the only one who is making progress!

One of the first things Soma did, (who has never met nor worked with Emma before) was comment to us that Em needs help to slow down.  This is identical to Pascal’s observations.  Em’s default is to script or point to the first thing she sees, whether that is a piece of paper or a key on a computer.  So despite the name of Soma’s program, for Emma this is less a literal “rapid” method and more a sustained level of interaction.  During the entire session Em remained focused and answered each of Soma’s questions appropriately.  There was no physical contact of any kind.  Rather Emma was asked to point to letters on a stencil board or to scraps of paper with different options on them.

Soma began with “I am thinking of a month when the leaves start to fall.”

Em then dutifully spelled “October” on the stencil board and my tears began to flow.  “I’m thinking of the season when the leaves grow,” Soma said.  To which Em pointed to the letters to spell “spring.”  For forty-five minutes Soma covered math, the seasons, an Aesop’s fable, reasoning, science and for forty-five minutes I watched with tears in my eyes as my daughter attended with focus while holding on to her string.  Every now and again Em would verbally respond to Soma’s question and then glanced up at her with a little smile.  By the end of the forty-five minutes Soma asked, “do you have any questions?”

“Will you come live with us?”  Was the only question I could think to ask.  I was kidding of course, but it was the only way I knew to sum up how I felt.  For years now we have been trying to find a curriculum that will help Em learn in an academic setting.  For years we’ve tried, her various schools have tried many different methods, none of which have worked.  Yet here we were watching a program that not only worked, but that I could see the potential and the potential is limitless.

Yesterday I decided to try to combine some of what I saw Soma doing with what Pascal has been helping us learn with supporting her typing by creating resistance to her.  I sat on Em’s right side and brought out our iPad.  I also had Nic’s old globe and we talked about how we live on a planet called Earth. I showed Emma where we live and then where one of her favorite people lives in London, England and how to get to London we would need to fly over the Atlantic Ocean.  Em typed, with me providing resistance, “We live on a planet called Earth.  To visit England we have to fly over the Atlantic Ocean.”

This was the first time I have supported Em’s typing and given her the proper resistance.  I could feel it.  I could feel her reaching for the keys.  I could tell when I needed to provide more resistance, I could feel when her body was tensing and when she was trying to perseverate or trying to script.  This was the first time I have worked with Em that I knew without any doubt that I was not directing her at all.  She went on to type that if she could visit any other planet she would like to visit Mars.  We then ended with her typing her full name, her age and where she lived.  She knows all of this and so much more.

And finally, just finally I know she knows.  I know, she knows, without any doubt.

Tears and love.

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58 responses to “Tears and Love

  1. I love whenever another autistic becomes counted as a human being. This happens when a bona-fied human being knows that we know. Then, as autistics, we have to wait until another bona-fied human being knows that we know. If this can happen multiple times in close enough succession then society sometimes decides we can be part of them. I hope it happens for your Em! Very exciting that it could!!! ❤

  2. I love Soma….what a strong woman! My goal has always been to take Brett to her at her office when he is 12. I don’t know why 12 but the first I read of her and seen her in action, I made myself AND Brett that promise!! Her work is amazing! Congrats to all of you! What a precious gift!

  3. Thanks again for stepping on the gas with Soma, after I spent so long putting on the brakes. It was such an amazing experience. And so hopeful.

  4. Wonderful..simply wonderful.
    More tears and a lot more love.

    Mom/Granma
    Tell Emma I love her too!

  5. That is SO awesome, Ariane! Portia Iverson’s book “Strange Son,” which recounts her story about tracking down Soma and Tito, was one of the first books I read that gave me confidence in my certainty that Autistic children were being widely misunderstood and WILDLY underestimated. I LOVE their story so much. Resources and research was so limited at the time that Portia’s and Soma’s children were diagnosed, I have much respect for their journeys. (Tito’s writing is so beautiful, but you know that!!) I think it is just wonderful that you were able to get a session with Soma for Emma and that Emma responded so well! So great, so great, so great. Good for you all! 🙂

  6. So wonderful…you are finding your way. Brought tears to my eyes.

  7. great post. Glad to hear that Em is now typing by herself, people are capable of such incredible things.

  8. So happy for you, that is amazing!!!

  9. Every step is something to celebrate! Such an amazing post. Beautiful!

  10. So happy for you. Maybe we are all getting a little closer to that magic tipping point where it will no longer be controversial that people who don’t talk might actually have a lot to say!

  11. Jeremy and I are forever grateful to Soma for helping Jeremy to learn to point to letters and to type. I knew he was smart, I just couldn’t figure out what to do on my own. Thanks to Soma, Jeremy graduated from high school and has co-authored a book and is truly his own person.

  12. This was something I’d known as a stranger only now you have the proof you wanted and need as a parent: Emma knows.

  13. Balloons, bubbles, flowers, and confetti, and all good things to celebrate such happy news. Big smiles down here on the Chouchoupeake Bay…and much love your all of you! 🎈🎉🎊💐💖

  14. Paula McCutcheon

    What a wonderful way to begin a dreary, rainy week. All that knowledge reposing in Em, now she is beginning to release it. Imagine what is stored inside and I believe you will find out so much more in the coming weeks. Inside she is a small polished gem just waiting to release her glints.
    All love, Tookie.

  15. I want to know who Em’s friend in London is!

  16. Wonderful, thanks for the story, congratulations to you both! We ❤ Soma. M has been working with her for years, and making slow but visible progress. I'm convinced that M wouldn't be responding so phenomenally to FC if she hadn't had years of gradual confidence-building through Soma's RPM method before. One advantage of living in Austin is that we get to see her every couple of weeks. 🙂

    • This is wonderful to hear! Also good to hear about the progress, because I hate to admit this, but I tend to think that anything positive is like time lapse photography except in real time, and that sets up many unrealistic expectations. So I’m trying not to do that, but instead trying to remember that this is one more step in the right direction!

  17. Ariane, I cried tears of happiness for Emma, for you, and for the rest of your family while reading this. Love to all of you ❤

  18. So happy! Emma is an amazing, wonderful, beautiful person and it’s so great to get to share your joy as she develops the tools for showing her amazing, wonderful, beautiful self to the world!

  19. Oh this is is such beautiful news! I will keep sharing. And I love “Chouchoupeake Bay” – ha! Awesome. I may have to jump in and invite myself and Sunny to this little event, it would be so fun for us all to hang out!

  20. It is absolutely awesome to see your expanding awareness of your child. I’m so thrilled at how open you are to finding ways of communicating.

  21. Bounce bounce bounce I am going to come to NYC and pretend there’s a yurt. ❤

  22. My son is 18 and didn’t start with Soma until he was 12. He now Has an aide at school who uses a letterboard with him without touching him. My son has colleges all over the country asking him to apply. The schools will not use FC as it was discredited years ago when it was suspected the child was being guided. The goal with RPM is independent typing or speaking, it can be done! But it is very difficult to fade the support FC gives so I caution you against FC if you ever want to really use this method in school or be truly believed. Tito can independently write but it took time. This is the only way Soma could prove that RPM was solely the child’s thinking. My son is very intelligent we had no idea until we found Soma even though we did a 40 hour a week program of ABA for years. Remarkable and life changing.

    • Hi Trina, it’s so wonderful to hear about your son! How wonderful.
      It is too bad FC has had such unfortunate press and some terrible facilitators who had no business facilitating, however I have met a great many non-speaking people who have gone on to independent typing and others who still require facilitation because of their physical challenges, yet are absolutely communicating their own words. It is not for everyone, but nothing ever is.
      So glad to hear about your son’s success with Soma!

  23. It is a wonderful and emotional feeling when you realize your child knows or feels something when you weren’t really sure if they did. God is wonderful and provides amazing blessings! Thank you so much for sharing this.

  24. This makes me so happy! Emma and Ariane and Richard and Nic, you are very awesome! All of you, because you give Emma all the opportunities to express herself
    Love, love, love

  25. How wonderful for all of you – and especially Emma! I’m always glad to hear of another triumph. Small steps, yes, but important ones!

    Yay, Emma! Good for you!

    😉 tagAught

  26. Ariane – I can’t believe you met with Soma… lucky! Loved the post, as usual. I must say – and this is huge for me – when i am in NY next, i would like to say ‘hello.’ Please know that I never do this, however your journey (your family’s journey) is a remarkable one and as an autistic person working to bring about positive change, you give me hope!
    My best to you always
    Renee

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

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