EEEEEEEEEEEEE!

EEEEEEEEEE!!!!   (This is, but one, of many fabulous expressions I have come to love and use.  I first saw it used by my friend Paula and it made me happy.  I love that woman.)  What better way to express emotions that go far beyond “excitement”?  What words can possibly express joy and excitement and exuberance and that feeling when your throat constricts and tears flood your eyes and there’s that fluttering feeling in your chest that travels up and down as your vision blurs because of the tears?  Tears of joy.  Tears of overwhelming emotion that are impossible to express, that makes it difficult to breathe.  I don’t know of anything I could write here that would sum up what I am feeling.  EEEEEEEEEEEEEEEEEEE!   ⇐ comes the closest.

Yesterday was our second session with Pascal who is a trained facilitator of more than two decades.  Our first session I described ‘here‘.  Yesterday’s session took place over Skype.  It took us a while to get connected and once we did our connection kept going out on us.  At one point during a particularly exciting moment with Emma I squealed in delight, looked over to see Pascal’s expression and was met with a blank screen.  We’d lost him again.  “NOOOOOOO!  I cannot believe you just missed this!”  I shouted at the darkened screen while Joe, Emma’s therapist, and Richard laughed.  Our excitement was palpable.  But I’m getting ahead of myself.  Let me back up.

Two weeks ago we had our first session.  It was beyond exciting, but in the interim, between that session and our Skype call yesterday I’ve been filled with anxiety and so have only tried to practice with Emma a couple of times.  (For those of you unfamiliar with facilitated communication, it has a complicated history.  That history I’ve touched upon ‘here‘ and ‘here‘.)  I worried that I would inadvertently push Emma to type something she didn’t intend, I worried that I might betray her, by literally putting words in her mouth.  I have never forgotten one of the things Amy Sequenzia said to me regarding FC – that the most important piece was trust.  I didn’t want to do anything that would betray that, so I did nothing at all.

The first thing Pascal did was cover some of the basics.  We went over different things I could try.  We discussed the correct way of providing support firmly enough to ensure that trust, but not so much that it becomes a vise grip or so loosely that it is little more than an irritant.  Getting the support right is key and not as easy as it might sound.  There is also the resistance piece to all of this and there’s a rhythm that must be achieved as well.  The process is unlike anything I’ve ever done before.  I want to liken it to dancing, not the sort of dancing one does in a mosh pit, but ballroom dancing or learning the mambo, where you have to be in sync with your partner, both with your physical movements, but with your mind as well.  I’ve had some wonderful FC advisors (other moms who have generously talked to me and given me tips from their experiences doing FC) and so I remembered some of their suggestions.  One, from a new friend, Sheree, told me I need to empty my mind.  For anyone familiar with Buddhism this sounds much easier than it actually is.  But when I felt myself wanting to push Emma to hit a certain letter on the iPad, I “told on myself” immediately and Pascal would gently advise me.

As our session continued and I became more comfortable, feeling the rhythm and getting the right sense of her, we went beyond Emma typing answers to questions such as, “Where are they ice skating?” after being shown a photograph of ice skaters at the ice rink in Rockefeller Center and her dutifully typing Rockefeller Center (which I don’t mean to sound blasé about because you have no idea how  HUGE this was, but it was nothing compared to what happened next!)  We moved on to increasingly challenging questions, like “What is the name of the airport we have to fly into before we fly to Granma’s house?”  She typed “Denver” and I gasped.  *I keep wanting to tell you, to describe to you how massive this is.  I want to explain to you that while it may seem small or even utterly unexciting to you, it was beyond exciting for me to see her respond in this way.*  I don’t think I’ve ever heard Emma say the word “Denver” before and while this is something she has heard many, many times in her life; it is a place we must fly to several times a year when we go visit Granma, it is not something I expect Emma to utter.

Pascal continued to ask Emma more questions about visiting Granma and then I asked, without really thinking, “What kind of dogs does Granma have?”  Emma pointed her index finger and then reached for the “g”.  I think I may have held my breath.  Waiting.  Empty my mind.  Wait.  And then her finger found the “e” and I let myself take a tiny breath.  Keep breathing I told myself.  Keep breathing.  Quiet mind.  Be with her.  Let go.  Be with her.  Open mind.  Breathe.  And then her finger found the “r” and on we went until she’d written “german shepherds” complete with the “s” at the end because there are two and of course she’s correct and I sat there and stared at those words; the two most beautiful words my daughter has ever typed and I looked at her and pressed my forehead to her cheek.  I cannot convey the feelings.  Gratitude.  Joy, unbelievable joy and something else…  something I don’t know that I have the words for.  A knowing.  That’s all I can say.  I deep knowing that this is the right road we’ve taken.  We are on the right road.  And I exhaled and asked, “Em.  What kind of dog is Dozer?”  Emma looked at me and said, “Last time.”  And I laughed and hugged her and said, “Oh Em.  Really?  I want to talk to you like this all day!”  Emma beamed at me and then she patted my knee.  “Okay Em.  Last time,” I said. Then she typed, “nufandland.”

EEEEEEEEEEEEEEEEEEE!

*Cannot type through the tears.

Dozer with Emma, who is terrified of dogs and yet…

Dozer&Em

73 responses to “EEEEEEEEEEEEE!

  1. You are right! EEEEEEEEEEE! I love Emma! She is wonderful! This is the right path. Trust that too!

  2. EEEEEEEEEEE!!! This is so awesome! So happy for you. 🙂

  3. This is a beautiful moment and Emma can type things that might be difficult for her to say. And she can type things that she can say later. And she can type things because she can type.

    • Amy, this post is more a reflection of my need to practice and my own inadequacies than it is any indication of Emma’s intelligence. I hope that was conveyed, because while I talk about presuming competence, while I know intellectually that this is the right and only direction, while I believe this with every fiber of my being, to SEE it demonstrated is what, to a religious person it would be like to physically meet g_d. I don’t know how else to describe it as her mom, as her parent, as someone who knows she is smart, even brilliant, I do know this. But to have it shown, to have others witness it, is beyond words. It is as close as I will ever come, I think, to a spiritual experience. This. This is what it means to live in “faith.” Does this even make sense? I don’t know. But I hope the way I wrote this didn’t offend you or sound as though I was belittling her mind and all that is in it.

      • You are giving Emma all the possibilities for her to express herself. You are doing it right and she knows it. She also know this is a big thing. She asked for a break. The first time I typed I asked to stop and to go outside and run. It is a good, important moment.

  4. I am chills and trears! I am sooooooo happy for all of you!!!! What a beautiful door that has opened!!!!!!! ❤ x 1000!!!!!

  5. Oh, Ariane! Oh…my….God. Wow. I could literally feel my heart pounding with excitement as I read this. The possibilities are endless!

    I really, really think you should document all this on video so that it can be posted for the world to see and read about, then maybe some of the negative associations with FC could be alleviated.

    Wow. Just….wow. I’m excited beyond words for you guys!!

    • I thought of you Angie. I did. It was fantastic. And now I feel as though I have the courage to practice with her every day, just for 15 or 20 minutes. She’s being very patient with me, as this is all very easy for her, I’m sure, it’s me that has to catch up to her. That’s the part I didn’t convey. I have to catch up. But yeah. Just WOW! 💙

  6. Oh, and PS – Risa makes this sound ALL the time when she’s content and happy. It’s my favorite noise in the world! 🙂

  7. You know what I am going to say. 😉
    Eeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!

  8. Awesome, Emma!

    I was reading part of it to my son but I had to skip a lot so as not to cry. He says “That is pretty interesting.”

    (Eeeeeeeeeeeeeeee!!!!!!!!!!!!!!! is actually a sound I have always made when very excited or happy. I used to do it in the skydiving plane and one day a guy said “What is that sound?! It sounds like rivets are popping off the plane!”)

    (I need someone to facilitate me filling out paperwork and paying bills….)

    I like the “empty your mind” part.

    • Hehe! (⇐ Adopted from Ibby!) “empty mind” was advice from Jamie’s mom. She’s pretty fabulous and gave me some terrific suggestions, as did Lauri Swann, Henry’s mom. I think this is what they mean when people say – walking on air!

  9. This. Is. Beautiful. Yes! Joining in…. Eeeeeeeeeeeeeeeeee!!!!! And could someone pass the kleenex! 🙂

  10. Eeeeeeeeeeeeeeeeeeeeee!!!!! Flap flap flap!!!!!!!!

  11. Oh, Ariane… wow. That is so great.. you are right, there really are not adequate words. Lucas spells things all the time with letter tiles that are pretty amazing, but they are words and phrases he has seen, not responses to inquiries. And we have only recently begun to VERY SLOWLY start working with him on typing.. have not asked questions or anything like that. I feel your excitement about the possibilities that will open up with Emma typing! Amazing… Super…. Fantastic… Wonderful… these words just don’t hit the mark, do they? EEEEEEEEEEEEEEEEEEE!!!! ❤

  12. Obviously, through the tears, only one response covers it:
    EEEEEEEEEEEEEEE!!!!!!!!!!

    Granma

  13. Eeeeeeeeeeeeeeee with my teary eyes

  14. I sooooooo wanted to tweet and post this last night, but I didn’t want to steal Ariane’s thunder in “announcing” this, since she deserves a round of applause right along with Emma. When Emma typed “nufundland” I was totally blown away, and as proud and elated as I’ve ever felt. I won’t do the “E” thing again, but, well…I think you know how I feel 🙂

  15. Chou Chou Scantlin

    I can’t wait to become Emma’s pen pal! So happy for all! And, indeed, EEEEEEEEEEEEEEEEE!!!!! 💋

  16. hi ariane this is emma. i am crying because you are telling this story like i rememeber me and mom. she laughed and cried so hard i thought i perhaps did wrong. today on your and emma day i crty too.
    and from Paige… EEEEEEEEEEEEEEEEEEEEEEEEEEEEEE e

    • Emma, do you know that whenever I see a comment from you I feel so happy? Just so happy and now happy with tears too. Because that’s the affect you have! The world is so much better with you in it! When we actually physically meet I’ll have to have lots of tissue with me!

  17. With two writers in the family, I am not surprised at all that Emma would type back. I can’t wait to start reading Emma’s blog that will tell us everything that goes on in her brilliant brain. I am very impressed at her spelling skills though, go Emma.

  18. EEEEEEEEE and then said while bouncing up and down is just about the perfect exhibition of joy there may be! 🙂 As a ballroom dancer I encourage you in your thought to practice in small amounts and don’t force the rhythm, feel it, and when it starts to wane, that’s okay, it’s just the sign to stop for a time and start again later. And something my dance instructor once said to me while learning the west coast swing, which I think may be very applicable here as it sounds similar to other advice you have received. “Don’t think, just stay in the slot.” (the slot is the basic forward/backward movement the woman makes, it is literally like a slot, or a track) Meaning, if I just allowed myself to feel the rhythm and not think, simply do nothing but the basic steps, then I would be open and able to feel, and thus follow, my partner’s lead, even when I was doing patterns I didn’t know. It worked, I did moves I never knew I could do when I just stopped thinking and oh my it felt so good, so free, so very graceful. Feel it, soak it in and be so very in the moment and so very grateful that it has all come together in such a magical way.

    • Yes, the dance analogy is interesting. I don’t know that it fits exactly, because one person can’t obviously lead, though Em is certainly more that than I am, but right now it’s more like synchronized, I think, though this may be wrong. But it’s an empty mindset, that part is certainly right. Anyway, thank you.

  19. so so so so so so SO SO SO AWESOME!!!!!

  20. Jumping and squealing and bouncing with you. I have to tell you that centering myself and letting go of expectations and anxieties have been the most important skills that I’ve learned parenting my child. If you have time and haven’t read it, read Daniel Siegel’s Mindsight. Describes an easy method for practicing. ((hugs!!!))

  21. {Clappy dance!} Nice work, Emma!

    (I love big dogs, by the way.)

  22. I’m too sleepy for an eeee but I am happy for you.

    • Take a nap and then join us for a group EEEEE!

      • Sadly I had to work then go to band. Now I am sitting back at my computer trying to do the work I was too sleepy to do effectively earlier before people start waking up. I ground productivity to a solid halt at the real office by posting a picture of my desk to facebook yesterday so need to make up for that now. (More rehearsals tomorrow and then the dreaded cycle of performances begins.)

  23. Your post brought tears to my eyes. I feel so much happiness for you and your family right now.

  24. This not only makes me feel EEEEEEEEEEEEEEEEEEEEEEEEEEE (which is how Brett refers to Erin and now it is an even neater meaning!:) ) but hopeful!! Hopeful for all of us whose kiddos have issues with communication. It is so exciting to have this new avenue to get to know Emma even better! I too would want to bombard her with a gazillion questions!! LOL!! What a blessed gift!!! Can not wait for it to happen for Brett someday and Risa too….because I know it will!!! 🙂 Thank you for sharing this awesome moment with us!!! Bless you!

    B~

    • Aw, Becky. Remember that story you told me so long ago. About the conference you went to and the boy who used FC? And how that changed so much? At the time I didn’t think anything of it. I assumed because Em talks she would never have the need for FC. Well… we will see! 😀

  25. The best. The best news ever.

  26. WOW! Good for Emma. Good for you. Hooray, hooray, hooray!!!!!!

  27. Ariane, I have been waiting impatiently for another post from you after your skype session with Pascal. I know EXACTLY many of the emotions you are feeling as I was in your very shoes 2 years ago. After reading your post and also your comment back to Amy Sequenzia I could sense that you are struggling with so many amazingly intense emotions all at the same time…me too! On one hand we are so blown away by the MAGNITUDE of the MOMENT that it’s almost like it’s too good to be true…as if we don’t believe…but yet, we DO believe! And the “deep knowing” that you are on the right road…the “faith” that that takes…I absolutely get it all. I am thankful that you have found this avenue for Emma and so very grateful that you are using this forum to spread the word! The saddest part of all of this is that I am truly convinced that there are many others out there, many, that could be reached and set free to communicate…if they can only be given a chance. Just think…your feelings of BEYOND INTENSE JOY…how many other moms and dads could feel that same thing…that’s my prayer, as we continue to spread the word that f/c is a tool that could make all the difference. Won’t work for all, but could be the only thing that can reach some! Praying for continued blessings to you and Emma!!!

  28. Arianne, Can you hear me going “EEEEEEEEEE”! I am so thrilled for your and Emma’s breakthrough. I still can remember how I felt 21 years ago when Kimberly typed, with me as her facilitator, her first word: “apple” and then a little later typed “I want pie” and got up from her seat, picked up a word card for “pie” from a distant table, and then went a sat at the kitchen table. It was as if she was saying to me, “Yes, mom, You read my words right. I am in here and I want pie.” Within a short period of time, she was typing even more and quickly was answering all types of questions: who, what, where, when, and even why questions. It so blew me away that I wrote Diane Sawyer who mc’d the Prime Time Live Program about Facilitated Communication 20 years ago, thanking her and ABC for airing the program and how much it had changed her life. Shortly afterwards, we got a phone call from Prime Time Live and they sent someone who took 2 hours of video footage of Kimberly typing, and she was on Prime Time for about 30 seconds in July of 1992. I have never been able to get the original footage of that, but at least I have a homemade recording of it that I can share with others to educate them about FC and see how far Kim has come. Keep facilitating with Emma every day, and you will be amazed at what she tells you as you continue to work together. It may even be something spiritual. One of the first things Kim told me was that she had been talking to God since she was 18 months old!

    • I just love that story about Kimberly typing apple and I want pie and then going to the table and waiting for you. I am committed to working with Em each and every day even if for just a little while. Pascal had a great suggestion, which is to explain that I’m just learning how to do this. So I did that this evening. I told her I would get better at it, and I was so sorry for all my fumbling. We ended up having a nice session, but it isn’t simple or easy to do this. I’m sure I’ll get the hang of it eventually, but for now she’s being patient with me.

  29. I want your daughter to type with you all the time. You are great! Treating her like she is communicating normally like most kids her age will help Emma trust your help, and she will type with you more.

    • Kimberly thank you so much for writing this to me. I was just telling your mom above that Pascal suggested I explain to Em that I’m just learning. So I did that this evening and told her how sorry I am for not being able to support her the way she’d like. She was very patient. Every day, I have committed to work for a little while every day!

  30. Ariane, you will never believe how many things I have had to apologize to Kim for when I realized from her communications that she had understood everything I was saying. (Though probably misunderstood some things since she couldn’t ask questions to clarify.). We had talked about so many things in front of and about Kim as if she could not hear. 20+ years later, I still goof and say things to and in front Kim that I shouldn’t, forgetting her understanding and that she also has feelings. Sometimes, now I also get frustrated when she doesn’t type as fast or as independently as I want her to. Thankfully, she, too, is very patient and forgiving. 🙂 I appreciate you sharing your tips from Pascal and others as it keeps me on tract and from becoming sloppy in my work with Kim. Also, it gives me ideas to relay to Kim’s other facilitators.

    • Thank you so much for the encouragement Marilyn.
      My mother told me while i was pregnant with our eldest and in response to my request for advice, “tell them every day, show them every day how much you love them and one day they will forgive you.”
      Best parenting advice I’ve ever been given.

      • Yea for Mom. Sage advice. BTW, Kim is working harder at independence. Typed a whole sentence on her board today with me just touching her elbow with my pointer finger! Also made some choices on her ipad. And yesterday with me just holding the sleeve of her shirt. This whole dialogue with you is inspiring her, plus her speech therapist challenged her yesterday. You might tell Emma how she is inspiring Kim. Maybe that will encourage her to type more with you. Love you friend. 🙂

        • Oh Marilyn AND Kim,
          Reading this made me so very happy because the feeling is so completely mutual. I so appreciate both of your words and encouragement. Marilyn, there is nothing like the words of wisdom and experience from one who has blazed a trail ahead of me. And Kim your encouragement and thoughts are invaluable to me. As someone who knows what it is to trust another who was once a beginner, as I am, and who can give me insights into that process… I just can’t thank you enough.
          Sending you both love and appreciation.

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