How We Got Here

I was asked recently to talk about the process that led to my daughter being able to write the insightful posts she’s been writing of late.  And while I initially thought I HAD written about all of this and so much more throughout this blog, upon further reflection I realized I have not written about the process in a condensed form, so will attempt to do so now.  (Wish me luck.)  For those of you who are interested in a more detailed, chronological version of what we’ve been doing that has led to Emma writing posts like ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this’ and ‘this‘ for this blog (and to see the daily progress) you can enter terms such as, RPM, Halo, Soma, communication and non-speaking in the “search” box or just begin reading the posts starting in mid-September until now.   For those of you who are REALLY curious, you can go back to October, 2012 when I went to the Autcom Conference.

There’s no way to say that on such and such date everything changed.  Like so much in life it was the incremental, seemingly, not-so-important things that occurred one after the other that then allowed for the next thing and the next until there was that moment we remembered and now look back upon and say, “oh yes, that was when everything shifted.”  Our version of having a – Helen Keller moment –  the day when W-A-T-E-R suddenly made sense, didn’t happen.  At least not like that.  There wasn’t any ONE moment when it all changed, but more a series of moments one after the other that led to a number of “OH!” moments.

One of those “OH!” moments was when Emma went to see Soma Mukhopadhyay (I wrote about that session ‘here‘) and we sat with tears streaming down our cheeks because Emma knew how to spell October and that it was a month in Autumn.  Another moment, previous to that, was when Emma was working with Pascal (documented ‘here‘) over a year ago.  Pascal “asked Em what she would do if she went into her own bedroom and found baby bear in her bed, Em typed, “I would be scared and I would watch his mother.”

I read that sentence several times.  How can I describe the feelings that came with reading it?  How can I express the surge of hope I felt?  How can I possibly describe the feeling of euphoria?  This sentence, this idea was beyond what I have come to expect.  It suggested a whole other level of thinking, a thought process far beyond anything she has been able to express before.”

In retrospect it seems incredible that all of this came as such a shock to us, but it did.  As I’ve said before, we knew nothing.  Literally.  Nothing.  But we thought we knew a great deal.  We knew what we’d been told up until that point and then it seemed as though over night, we realized everything we thought we knew was wrong.  So it was little moments just like these, over and over and over again, that continued to happen leading up to the first time I took Emma to see Soma in Texas (described in more detail ‘here‘, ‘here‘, ‘here‘ and ‘here‘) last September and then returning home and not being able to replicate what Soma was doing. But I was so determined and had to fight how depressed I felt because Emma seemed unable to write words that I’d just seen her write with Soma and yet with me, nothing.  Nothing at all.  There was self-doubt and fear, just tremendous fear that I wouldn’t be able to learn how to do this.  Fear that I would never be able to communicate with my daughter in the way I witnessed her communicating with others like Soma and Rosie and Pascal and Harvey and Leah.

So I had to begin at the beginning with simple choices and felt so impatient and so worried that this was how it was going to be for the rest of our lives.  But I kept showing up each day and making us do our “study room” together setting a timer for ten minutes and then 15 and then 20 and eventually up to 45 minutes and making lesson plans and wondering, wondering, always wondering whether she would be able to get to the point where she could trust me and write with me as I saw her writing with Soma.

I found a woman in NYC whom Soma had trained and we began taking Emma to see her too and I studied the videos of Soma working with Emma and I made notes and spent hours and hours pouring over them and making lesson plans and practicing.  I wrote out scripts of exactly what I would say during our “study room” session, leaving nothing to chance and I kept at it. Finally, after what seemed like an eternity, but actually it was more like six weeks, I arranged to have a Skype call with Soma, having sent her a video of me working with Emma.  Soma advised me to ask her one open ended question at the end of each lesson, which I hadn’t dared do as the one session I had, it was a disaster and she wouldn’t answer me.  I said as much to Soma.  I told her I didn’t think we were ready for that and Soma said, oh yes, but she’s ready.  You must ask something simple at the end of each lesson. So I did.  I did because Soma was so matter-of-fact and sure that this was what needed to happen next.

Emma began answering these open ended questions, at first with a few words and then with longer, more complex sentences.  I began to ask clarifying questions and now…  now look at her go!  It makes me cry thinking about this actually.  I couldn’t have known it would all happen as quickly as it did.  At the time, the process seemed to take forever, but looking back one’s perspective is different and I see it as very fast and I’m just so grateful for all that work, for all those days I struggled and cried to my husband and didn’t believe it would ever be any other way…

By the way, I DO think those Helen Keller moments that Hollywood then immortalizes, has all of us very impatient and thinking life is like that. Of course you and I know, life isn’t so simple or easy, nothing ever is. There’s work, hard, hard work and hours upon hours of showing up over and over again, and then slowly change occurs and it seems incredible, even miraculous!  But no one sees all that work, all those days when things didn’t go well, all those days when tempers flared, when there were tears and frustration and doubt and even disbelief that it would ever be different… until it is.

To all of you reading this – this has been my experience, as a parent, as someone who has always been terribly impatient, but determined.  Emma’s experience has been different (I’m hoping she’ll want to write about that at some point.) Everyone’s experience will differ, but perhaps, just perhaps, my experience will be useful to those of you just beginning, or will bring a smile of recognition to those of you ahead of me, either way, none of us need do this alone.  I didn’t and I am so grateful to all of you who have helped me help my daughter get to where she is now.

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

48 responses to “How We Got Here

  1. Great post! Thanks for sharing.

    Happy 2014!

  2. Thank you so much for this encouraging post. I was literally sitting here going through the archives looking for this information when it popped up. I too took my son to soma and am trying to work with him at home. I read your daughter’s posts to him along with Ido’s book. The other day B (our shared therapist) asked him about courage and he spelled ‘reading about autism’. Your daughter is amazing, and your words together are such a blessing.

    • Thank you so much Beth. When I first began trying to do RPM a couple of people reached out to me and encouraged me to keep going. It made a huge, huge difference. Just knowing that other parents had been where I once was, but kept going, made me determined to keep plugging along. Glad you and your son are on the path too!

  3. As a parent progress does seem to take forever, but when you look back…oh my! 2 yrs ago E didn’t seem to understand anything besides eat and no, even as short as a year ago I indulged myself letting him sleep in my bed because he never was still and it was the only cuddle time I could get. Day to day it seems to take so very long for things to happen…but how long is a year, or two in the grand scheme of things? Today we know he knows letters, colors, shapes, numbers, can recognize some words, and even spell his name and god knows what else! He can follow simple requests (when he feels like it he is a quite average preschooler in that respect lol), use his talker to ask for things, and when he doesn’t feel like finding the word he finds a way to communicate what he wants in alternate ways. I sometimes struggle to get things done because he will climb into my lap and sit for an hr or more sometimes. He’s barely 4…what then are the possibilities at 6, 10, 16?
    My heart literally breaks for those not given the opportunity to communicate and be presumed competent at a fairly early age…how frustrating that must be! I’m seriously considering returning to school to be a speech therapist…I think that the world needs more therapists who understand what communication truly is not just speech, and who follow the somewhat (at this time unfortunately) radical notion of listening to autistics themselves rather than the more commonly taught ideas and theories.

    • Barely four!!! How wonderful that you are where you are so that you can help him be all that he can be.

      • If I remember correctly it all began with discovering this blog…the change in thinking, the direction to autistic bloggers, the reevaluating of everything…the mushrooming from a few blogs you linked to others they linked. I try to thank the autistic bloggers whenever I get the chance, but I should also thank you! I honestly don’t even remember how I stumbled upon this blog, but I’m glad I did. (And yes he just turned 4 on the 11th)

  4. Stephanie James

    Thank You!! I am going to share this posting far and wide with my daughter’s service providers. We have so much to learn, and you and Emma have opened up a window for others, like my daughter and me. My daughter is verbal, but has difficulty expressing herself. I try to help others introduce the word “because” into sentences to help her help others listen, but your posting goes further and should be posted on agency and school bulletin boards (do they still have those?) everywhere!

  5. **Hugs** My heart is so full of emotion for you and Emma and your family. I have no words but to say thank you for sharing with us. **Hugs**

  6. I feel such love and pride for you all. Thank you for painting a big picture for us to see. It helps me examine our own progress with appreciation. When I am challenged, I will forever take a deeper breath and continue because of you and Emma.

  7. Wonderful post! It echoed my thoughts and experiences learning to communicate with Philip as well. Thanks for sharing so honestly about the impatience and hard work we go through because it is so easy for us parents to get discouraged and give up. So it’s good to see the struggles behind the amazing miracles and blossoming of our kids. Thanks for being a conduit of hope.

  8. Laurie Bernstein

    These reads ring true for me as well. The emotion of this journey with RPM and our children has been and continues to be so overwhelming at times. I often describe this to others as the most difficult and most important thing I have ever done in my life. This community of support holds me up and makes me persevere. Thank you.

  9. Everyone who has been reading Ariane’s posts here on Emma’s Hope Book has been amazed at the profound things Emma’s been writing. People who have known Emma and our family for years are even more blown away, because we ALL had no idea how intelligent, wise and insightful Emma is. As a parent, it’s really hard to admit that you’ve underestimated your own child so completely. It’s embarrassing. It’s sad. It’s tragic, actually. But it’s true.

    It’s not that we assumed she was UNintelligent, or INcapable of learning, it’s just that we didn’t have a clue how much she already knew, how super-smart she is, how she was capable of doing things she’d never been taught like division and multiplication (in her head), how she knew things we can’t remember talking to her about.

    If you met Emma on the street today or came into our home for a visit, and you didn’t know any of this, or hadn’t read her writings, I can absolutely guarantee that you would assume she is much less intelligent than she is. We constantly judge one another, and the three primary considerations in that evaluation process are: appearance, behavior and speech. Emma is a beautiful young girl, so she’ll automatically get high marks in that category, but after a few seconds you’ll notice her behavior and speech. She prances, flails, hops, gallops. She has a long string she made that she carries with her everywhere. She’ll be spinning and twirling it constantly as you watch. She might not look at you when you say hello, or even acknowledge that you spoke to her. Or she might say “hi” and then say something that has no relation whatsoever to what’s happening in the moment. She may repeat words from a memory that someone said to her. She might point out everything she sees around her that is red in color. If you try to have a conversation with her, she will not be able to respond in kind. Yet.

    We now know that Emma is capable of things we couldn’t imagine a year ago, so it is certainly possible that she may eventually be able to speak like she thinks, or not be so driven by physical and verbal compulsions she can’t control. And if not, that’s okay too. Because now we know so much more about Emma: what she likes and dislikes, what she cares about, and how amazing and infinitely interesting her mind is.

    Every day is a wonder. Every moment an adventure. All my love and gratitude goes out to Ariane and Emma who have worked so hard, for so long to get to the point where we finally can see the truth–and keep learning more day after day.

  10. Ariane, your asking the open ended question is like inviting Em into your world, and asking permission to enter hers. It was the first step to the foundation of trust you have built. I had no one–other than my once a year visit to grandma, who kept telling me I was just fine the way God made me–no one else welcomed me to the world. In fact, my so-called family wished I were dead. I can’t tell you the amount of hope I get from reading your blogs, Ariane and Emma!

  11. many of us are cheering you on emma
    we are also cheering on your parents
    some day all nonspeaking people will be counted as human beings
    you are helping to make that happen
    just by being you and sharing
    thank you for the hard work involved
    and for showing up with your words when you can
    ❤ ❤ ❤

    • Thank you so much Judy. The stretch ahead can feel interminable, but I keep hoping, believing and pretending to believe even when I cannot believe in that moment that things are changing and will continue to change…

  12. This is so helpful, Ariane. I am so eager to eventually introduce Soma’s techniques to my son, but I am overwhelmed just thinking about it. Thank you for sharing the fact that things did not necessarily come together over night. This post is going to help inspire me to stay the course. Thank you 🙂

    • Just know this – I learned about Soma in 2010 and was all set to take Emma to Texas for a week long session. We didn’t do it. It ended up being one of the single biggest regrets we have.
      I saw Soma and Tito give a talk in 2011. Still didn’t follow up, but bought all her books and watched all her videos. In 2012 I learned that she was coming to NYC and finally set up an appointment to have Emma see her in the winter of 2013. EVEN then I couldn’t bring myself to start doing it with Emma. It seemed too abstract and I couldn’t figure out how to begin. Finally, finally this last September I made the commitment to work every single day and those first few months were incredibly hard. So, so hard. I reached out to a few other parents and they were ultimately the ones that encouraged me to stick with it and keep trying. But it was very, very difficult and I felt so discouraged after each session I would cry. I would go into the bathroom, shut the door and sob.
      One thing I remind myself after every session is that if it were easy for Emma to do this, she would have done so a long time ago. It is very, very hard for our kids. We have to remember that, as hard as it was for me, it’s a lot harder for her.

  13. Happy new year! Wishing you, ” little Emma” , you son a husband all the best of life that communication brings!
    “Big Emma” has loved reading with me your recent blog posts. In her words, good job!
    With love, Ariane, lots of love!

  14. I am wearing smiles of recognition with each blog. Such good news for Emma, her family and the world. The picture of Emma and you on New Years’ Eve looks like a painting that belongs in the Metropolitan. Better yet, it hangs in my heart. It was a very good year, and the best is yet to come.

    • (((Dianne))) You have been so wonderfully supportive of me and my family as we travel along behind all of you.
      Spending time with Peyton and you and your husband were such highlights for me at the TASH conference!
      With all my love,
      Ariane

  15. Our daughter does RPM with Soma and some other teachers, but not with us parents. We are very intimidated. Can you explain- is the problem with differential success between teachers a matter of the teacher’s skill or the particular chemistry between the student and teacher. I have tried casually in situations that come up in the home, here and there, and have had abysmal success.

    • Honestly, I don’t know the answer to this. I can tell you about my personal experience though, which was seeing Emma writing with Soma and then having the expectation that she would do the same with me. This proved disastrous and I learned pretty quickly that if I was going to have any success I had to begin at the beginning and it required a patience that I didn’t believe I was capable of. I began by writing two choices down, saying each letter as I wrote, ripping the paper in half and asking her to point to the correct response. I studied Soma’s books (at the time just two were published) and made notes and then had to watch other parents doing sessions that they’d posted and sent me on youtube. I copied down lesson plans and followed a script, I didn’t leave anything to chance, no ad-libbing, and I didn’t ask anything remotely resembling open ended questions in the beginning. I still avoid (as per Soma’s advice) asking her to discuss her “feelings”. Instead I will say something like, tell me something about your teachers or let’s talk about your goals for school.
      I try to keep my voice playful and even use a similar sing songy voice as Soma’s.
      I use a timer. Once that timer goes off, our session ends. I don’t ever want Emma to feel I am going to betray her trust, so when the timer goes off, that’s the end of our session no matter what. If I want to ask a follow up question I will wait for at least an hour and ask her first if it’s okay and make sure she understands that she doesn’t have to. I thank her and always make sure I tell her how much I appreciate her patience with me as I learn to get better. I try to remember to acknowledge that I know this is hard for her and how much I respect and appreciate the time she is giving me.

      Something I remind myself of at least once a day is this – if it were easier for our kids they would be writing to everyone they come into contact with long ago. It’s HARD. At least I know it is for my daughter because she’s told me how hard it is. Also she does not place the same degree of importance on language as I do. It just isn’t as meaningful to her as it is to me.
      I continue to learn as we go here and thankfully Emma is helping me every step of the way. She’s my guide, I’m just trying to keep up!

  16. Thank you ALL! The information I have read so far has been so profoundly helpful, I am overwhelmed!

  17. Ok, NOW I can actually sleep. Amen. To All of you, thank you so very much for the candor. I finally believe I can do this!

  18. Victoriya Hageney

    I love your blog which I just discovered. My son who is non-verbal showed us that he could type in full sentences on ipad in August. I can’t even describe this feeling. It also started with us exploring with RPM what he knows. He blew us away and he continues to shock me everyday when we type. It’s all the beginning and some days are more difficult than others. He still would not type with my husband. Just me and speech therapist . Your blog inspires me! Our kids are the greatest teachers & Emma is so insightful. I hope Eli would be able to express himself as well as she does:)

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  20. Marilyn Dixon

    Ariane, thanks for taking the time to tell Emma’s progress with typing from the beginning til now. She has done so well; so quickly. Love her new story, The Girl Magician. This is a whirlwind time for all of you. Your and Emma’s persistence has made it happen. Emma is blessed to have you as her mom, and Richard as her dad. BTW, Richard, I loved your post where you described Emma. I think this is important for parents to see to give them hope that their child, too, can be intelligent on the inside, regardless of whether or not it is apparent on the outside. We just have to find ways to give non-verbal and low verbal children/adults a way to communicate their knowledge, whether it is via paper boards or technology.. I am so thankful for ipads–Kim has blossomed so much now that she has her own voice and Mom doesn’t have to always tell someone what she typed. She now uses an ipad mini with a GoNow Case to make it easy for me to hold (and hopefully by herself one day) while she types. Kim likes the Grid Player Qwerty keyboard for chatting with people as it has large font and only 3 word predictions on it. Since Kim has some visual difficulties, when she is typing on the keyboard, I invert the colors so it makes the letter white with a black background. (You can do this by going to general, then accessibility and then invert colors.) Keep up the great work! You both and Emma inspire and encourage us all.

  21. Marilyn Dixon

    Oops, I posted my comment before I noticed I had made a typo with your name. Sorry about that, Ariane.

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