Excitement, Impatience and Waiting

The day before Thanksgiving a facilitator, P. came over to work with Emma.  I met P. at the AutCom Conference in October and asked him for some guidance in helping Emma communicate more effectively through typing.  And while Emma is verbal, she can voice basic desires, has even begun to comment on things going on around her, she has not communicated more complex thoughts.  I know Emma is intelligent with a great many ideas and interests.  I want to help her express herself in whatever way proves most advantageous, whether that is verbally, through typing or some other, still unknown, way.   I want to help her be a full participant in this world so that she can have choices and options available to her.

P. has facilitated people for several decades, so I felt confident he would be able to help me learn how I can help Emma better and was excited to have him work directly with her while I watched.  We started with a number of apps, Emma had no trouble pointing, using her index finger to match words with images that she knows.  But in the past when it comes to typing an idea, Em will usually type, “yes” or “no” and then repeat the question, which is what she was taught to do with her most recent literacy program.  I am hoping Emma can be encouraged to move beyond that.

As P. worked with her, slowing her down so she couldn’t simply repeat what had been asked, holding her arm at the elbow, putting up some resistance to her desire to type quickly, reminding her to write what she was thinking, asking if that’s what she meant, I felt tremendous hope.  P. asked Em to bring a book she liked.  She brought him a collection of fairy tales and plopped the large book on the table in front of him.  Em chose to discuss Goldilocks and the three bears.  Most of what was typed were fairly simple ideas about the bears and Goldilocks and the havoc Goldilocks causes (much to Em’s delight.)  But then P. 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.  It was a terrific idea, one I have discussed with both children during the summer months when we visit my mother in Colorado where we often see bears.  I have warned the children that if they encounter a bear, especially a mother with her cubs, to not get between them, to keep their distance, to keep their eye on the mother and to make loud noises.

But Emma wasn’t finished.  She then typed, “By the way, this is a very sad story.”  I was astonished.  I had a million questions.  Emma has never spoken this way.  Ever.  “By the way” is something both Richard and I say, both in jest as well as seriously.   Em has never uttered these words, let alone typed them.  And why does she think it’s a “sad story”?  What strikes her as sad?  Which part or does she think the whole thing is sad?  It is sad, I thought and then I Immediately went to,  I have to become trained in facilitated communication.  I have to find a way to communicate like this with Emma.  As I am not able to become trained in facilitated communication in the next 24 hours, I made an appointment to Skype with P. in another week, which feels like an eternity, and will try to do whatever I can to continue to learn so that I am better able to help my daughter become an independent communicator.

Between now and that Skype call, I am doing my best to manage my impatience, my excitement, my hopes and dreams and the reality that my daughter has a great deal to say and boy do I want to hear it all!

Em & P.

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64 responses to “Excitement, Impatience and Waiting

  1. That’s wonderful. Thank you for sharing, that made me smile.

  2. Wow! Awesome!!!!! Wishing you both wonderful things on your joint adventure!! ❤

  3. so happy for you! everytime I read about that “communication breakthrough” moment, it always seems like the deep thoughts were always there. I wonder how Em feels about being able to share deep thoughts with someone else? thank you so much for sharing!

  4. Yes! Another major discovery thanks to Ariane’s never-ending quest to learn more effective ways to help Emma communicate! It was amazing to watch and I’m equally hopeful! Can’t wait to learn more about Supported Typing! She’s certainly able to quickly and independently type answers to clear questions but, in terms of sharing her unscripted and spontaneous thoughts, drastically slowing things down seems to be the key! 🙂

  5. So incredibly happy for you and Emma!!!! What an amazing moment in time!!!! Please keep writing about this journey… I would also be interested in resources on becoming trained in FC, so don’t forget to post those too!

  6. I’ve always thought it’s a sad story, too…and I’m not sure I can tell you why…

    I think I would’ve loved to have someone like P. at Em’s age. 🙂

  7. emma congratulations now we can be friends.

  8. I am so excited for you and Emma!!!! What thoughtful and insightful words Emma gave to you and P!!! Shows how intelligent she is. Emma was obviously assured that you knew she was smart and so she was happy to share her knowledge about the Three Bears story… My daughter Darby also met a special fc specialist at Autcom, and typed for the first time amazing things too, a few years ago. So nice to read your blog and relive those special moments!!! I’d like to recommend a good fc book by Darby’s facilitator: Facilitative Communication Case Studies: See Us Smart written by Char Brandl a former special education teacher. Char also has a blog on fc I would recommend as well: grandmacharslessonslearned.blogspot.com/ I can’t wait to hear what else Emma has to say!

    ________________________________

  9. Can you just go ahead and try imitating what you saw P. do? Why not? I have learned everything I have ever cared to learn, including stuff people said was not possible, by imitating others. I am still trying to find time to write the blog post on that!

    • It’s harder than I thought it would be, actually. There’s a rhythm to it that I wasn’t able to get right away, but also I literally tried for just five minutes, so my guess is I will get better at this as I practice. I’m looking into workshops as well.

      • I attended a workshop on FC and Autistic advocacy in New Hampshire last summer, some of which involved FC coaching for me and Miriam with an expert — and I’ll echo Ariane: while imitating does help, there is a rhythm and an expertise in doing just the right amount of facilitation that clearly comes with practice. Also, while M and I are becoming more able to type together, it’s still easier for her to do so with a couple of trusted aides than it is with me (and easier for her to type numbers with me than letters, for some reason) — so I think part of it is the issue of kids displaying some abilities more easily with people other than parents (which I think is true of all kids, but perhaps more so with kids who may have trouble generalizing skills across contexts). But I agree with Paula that you and Em can make significant progress even without expert facilitation, as the two of you clearly have already done… Yay!

        • That’s interesting. I found my impulse was to direct her hand, even knowing this wasn’t the point or goal. But it was what I was taught when we taught her to write and type and then over time, pulled back until she no longer needed me there at all. But now we have different goals and so I have to un-learn that while also resisting her desire to type quickly, giving her more time to think through what she’s writing. Yes, I can see this will not happen over night. That’s okay. I’m impatient, but I’m also determined!

    • By the way, Paula, you have to write that post, particularly as Autistics are not suppose to be good at imitating others, mirror neurons and all that… 😉

  10. What exciting, joyful news! That is fantastic, I’d be jumping up and down with glee if I could! 😉

    The Three Bears is a sad story because she got lost in the woods, wandered into a houseful of bears, and got the crap scared out of her. That’d make me sad, too! 😉

  11. How exciting!!! What a wonderful thing for you all. 🙂
    Honestly, tiny me could never get past the idea that Baby Bear’s porridge was “just right”. He had the smallest bowl, least mass, it should have lost heat more than the other two bowls, thus rendering it “too cold”. Mama Bear’s medium sized bowl should be “just right”.

  12. I am so hopeful for you. This sounds very promising. I agree with Paula…go for it…I don’t think it can hurt.

  13. I am so thrilled that you are sharing your story! My daughter Lindsey was introduced to f/c two years ago (at age 15) and I sooo wanted to blog our journey…but I really didn’t know where to begin on the blogging part and it was all I could do to manage our current hectic family schedule, while continue to practice facilitating with Lindsey. She took many months to start typing with me fluently, so don’t give up if the progress is slow!!!

    Hopefully you don’t mind, but two years later, I’m sharing your journey to my facebook friends. Lindsey has made SO much progress since then! It took a lot of work and effort and time from so many people involved, but this was the only method of communication that we have tried thus far (and believe me, we’ve tried a few!!!) that has revealed Lindsey’s true intelligence, character, and sense of humor! Thank you for taking (and documenting) an “intelligent” look at what this f/c truly is, and what it isn’t… I couldn’t believe how misinformed and misguided so many professionals are in the Midwest where we live. Many simply dismiss it based on hearsay and the negative connotations from the early 90’s…without even spending a tiny bit of time to even consider it possible that it can truly be a godsend for children with motor planning/movement issues.

    People like you will hopefully spread the word that, while this method may not work for every child, for some it is the ONLY method that may work to help them compensate their motor challenges. To NOT at least consider this method is taking away all hope of communication for them. What a lonely, miserable, sad existence that is…to have intelligence and to have no way to “prove” it. Lindsey has taught me and those around her soooo much more than any of us have taught her. Emma sounds simply amazing! I pray that f/c is just one more avenue to a rich and meaningful life for her, and for all of you! God bless!

    • Oh Robin, thank you so much for writing this. I’m desperate to hear of other’s experiences with this. Really appreciate you writing all of this and it makes me even more hopeful reading about you and Lindsey’s journey with FC.

  14. We may have less mirror neurons but they work harder… (Joking since I don’t know that’s the case on any neurological basis but presumably it would have to be as every autistic I know who can describe their experience spends a heck of a lot of time watching NTs hoping to work something out.)

  15. As for the bowl the smaller bowl would also have had the least surface exposed to the air so depending on the material of the bowls had better odds of being too hot from the single spoonful than Papa bears.

  16. I cannot begin to imagine the pure joy and excitement you must be feeling now! I am so happy for all of you! I have no experience with this form of communication, so not much to add besides my love and happiness…Lots! XO!

  17. Oh what a joyous Thanksgiving you had! I was on the treadmill when I first read your post and couldn’t respond. (Only a seasoned professional can type on a treadmill!) So I had to come back so I can tell you (not that you don’t already know) that Emma does have so much to say and it will come out. And you will be patient if that is what you have to do because, well, that’s who you are. But it doesn’t mean you can’t jump up and down and twirl and hand flap and race laps around the inside of your head and whatever else you like to do when you are beyond excited. Embrace the joy, be happy beyond belief, oh my gosh girl, that feeling you are feeling, that’s the good stuff. That is love filling you up to the point of popping! Pop away! 🙂

  18. Hooray! AutCom2012 truly was a diving-board for so many of us, into new amazing perspectives, inspirations… opportunities! Sooo awesome that P. is working with Em! Tell him Laura-Sun and CJ say hi!!! Let’s continue to sing (and type, and prove) to the whole wide world how effective and progressive FC really is!!

  19. This made me think of Jack’s answering questions. If he doesn’t want to answer your question, he will make something up. The person asking doesn’t know he’s just making it up. But he’s just trying to get the dang question out of the way so he can talk about what he wants to talk about. Which is why our school system’s insistence on learning handwriting first (to write physically) without learning to dictate our own stories first (creative thinking) doesn’t make sense to me now. Now that I’ve learned along with Jack.

  20. That’s just awesome! As a mother, I know the way u are feeling. My son recently said something that blew my mind as well (as he often does) but this expressed to me a whole other level of thinking. He loves to say “mommy u know I will grow up and get much bigger!” Then, he wants to hear me say “Nooooooo don’t get older, please stay little forever”. He thinks it’s so funny and likes to do it over and over. Well the other day, after this exchange, he comes up to me and says this: “it’s ok mommy,when I will be big and adult, and I live in another house, and have my boys and girls, u can come visit me OK.” Amazing, right!?! It was so unexpected and like u, I felt an incredible surge of hope.

    Speech&communication developed verrrry slowly for my son in the beginning. It wasnt til 4yo that he started putting words together to form sentences. Still, intelligible cohesive thoughts didn’t come til after 6yo and even then, they were dependant on emotional status; meaning he could NOT communicate effectively if he was extremely frustrated and/or angry. It was a challenge for him but he has learned to use his “tools” to not shut down. For ex) if his brother knocks down his Lego creation he knows screaming&throwing a toy at him is not a good solution. LOL He can now calmly say, “Hey, why did u do that? That made me angry!!!” This kid has overcome a lot and to say I’m proud of him is an understatement.

    So I have never looked into FC bc communicates verbally now but if verbal communication was still a struggle I most certainly would have dove head first into the world of FC. Still, I find it to be a rather interesting phenomenon & I’m curious to understand it more. My question is this: I am a teacher (elementary ESL) so I know writing and reading go hand in hand. One’s level of writing is usually on par with their level of reading. My son is about a year and 1/2 below grade level in reading. If I were to take a recent verbal conversation overheard btwn him & his brother, and transcribe it to a typed or written visual, I know he would def struggle to read it. So if I typed a question, how could I expect him to write/type his answer? Does the facilitator or parent do the reading for them? Now let’s say I read the question to him. He can say his response to me. But to write or type it is another story. Yes, I can help him to stay on track to get it done, remind him of writing mechanics (spaces,punctuation,etc), and together phonetically work thru difficult words. But how is it possible to facilitate their response when that response is unknown to u bc it’s still in the person’s head??
    U may not know an actual answer to this but these r my thoughts-just another perspective. 🙂

    • These are all such good questions, and honestly I don’t know the answers to them. But I know someone who might. I will send this to him and give you an update when I hear back.

    • I sent Pascal your questions. He is the facilitator for Larry Bissonnette who is one of the two men in the documentary, Wretches and Jabberers (which if you haven’t seen, you MUST!) and has been his facilitator for more the 20 years. I don’t know of anyone I trust more than Pascal. This is what he wrote me:
      “To fully answer this question, I would have to know more about this boy, his verbal communication, typing skills, etc. For example, is his current level of reading based on his reading out loud? If it is, it is possible that his speech may be limited in some way, e.g. difficulty with saying the right sounds to match the printed text. So his reading out loud may not be reflective of his true reading abilities. People also sometimes have difficulty visually tracking large amounts of small text on a page so they find it easier for someone else to read the text. Alternatively, if the text is enlarged and they work on their visual tracking skills then they could read it on their own. Some people have difficulty with the auditory processing of speech so seeing the visual of the text works better for them. In terms of the typing part and using facilitation, you have to determine whether the person has any motor planning or movement difficulties that might affect their ability to type reliably. It is possible that your blog follower may not understand the motor/movement aspect of FC so they may need to understand that first. I am not sure if I answered all the questions here but she needs more clarification let me know.”

  21. Emma’s a smart cookie I hope beyond hope that P will be able to her communicate better I can’t imagine what it’s like to not be able to say all the things you want to say.

  22. ariane, now you know why in a way I waited also to write with my Emma. I feel so close to her, I needed to watch, wait, and listen to her so I could learn about her. Also, If she doesn’t want to write, she just writes yes, yes, yes. you can’t MAKE her hand move. it is freaky in a way, isn’t. I found out to my shock that her favorite ice cream is vanilla, I just assumed she loved all the junk I do….wrong!!! enjoy! and dear friend there will come a time that she will tell you stories that will break you heart like you never felt before.

    • Oh Paige…. I cannot imagine what it is like to hear such terrible stories from your child. I can’t. But I know these things are happening, and are happening a lot more often to a great many of our children than any of us want to believe. I do know that. One day our Emmas will meet. That is my hope anyway. Sending you and your Emma hugs.

  23. I know we will all meet….life is funny that way. by the way amy sequenzia’s wonderful friend told me that often supportive typing increases speech. I want you to know that emma’s speech has increased by both volume and clarity. additionally she often speaks the word either verbally or she mouths it as she types now. it has been since sept 2010 that she began.

  24. So exciting! It would be so hard not to ask 100’s of questions!! :O) I know this will happen for Brett one day too. If you find a great workshop, let us know! He is still fairly young but is now memorizing the keyboard and using a communication app. He follows it well and we were so excited the other day when he was desparately trying to say something to us and we just couldn’t figure it out. So I said, “Go get your ipad and tell us what you want” and he did it!!!!!!!!!!!!!! It is such an awesome feeling! :O) Can’t wait to hear what else Emma is going say!!! Such an awesome girl!! :O)

    • Becky – at the Autcom Conference there were a couple of parents there with their very young children, they couldn’t have been older than 8 years old, one looked even younger. I was amazed to see them typing away and saying the most profound things!
      Joe (Emma’s therapist) and I are looking into the workshop given at Syracuse University in March (Douglas Biklen is the dean and was the one who produced the movie Wretches and Jabberers and wrote one of my favorite books – Autism and the Myth of the Person Alone. I intend to ask Pascal what he suggests when we do our Skype call next week. I’ll keep you posted!

  25. Good to know!!! Very exciting!!! Brett has some issues using his hands properly so writing and typing have not came as easily but he sure is getting the hang of it. For him to hear and process what I said and then go follow my direction to the T…well, not something that occurs everyday so it was exciting! Not sure if I can afford Syracuse but I DO want to go to something soon so I will check in to it for sure! I recently purchased their boo on the kindle so reading it now! :O) Thanks so much for always thinking of us in your research!!! :O)

  26. Oops, meant book! 🙂

  27. I am so happy to read this. Thrilled that I recognized P immediately because of what you’d recommended me to look into, in the past 😉

    • When I asked P. if I could use his name, he didn’t answer specifically, but answered all my other questions, so I wasn’t sure if he was okay with me using his name or not and decided to err on the overly cautious side, but I’ve sent him a follow up email and await his response! 😉

  28. Maybe Baby Bear’s bowl was dished from the hot pot last and therefore did not have as much time to lose heat as Mama Bear’s even though Mama Bear’s bowl was bigger?

    But about Emma, that sounds amazing! How much does the facilitator move her hand? The criticism I have always read of FC is that sometimes it is the facilitator that is generating the thoughts and making the motions to type rather than the client. But it sounds like Emma can already type, so how much help does she need in terms of hand over hand facilitation? Your story is making me think I should do some more reading on this topic.

    Thanks,
    Jen

    • Hi Jen, I knew nothing about FC until I went to the Autcom conference. Even after watching Wretches and Jabberers, I didn’t know that what Larry and Tracy were doing was called FC or supported typing. I knew there was some controversy, I knew some people felt it was a hoax, but beyond that I knew nothing. Then I went to the conference and saw dozens of people using FC and no one was holding their hand over any one’s hand. At the most they held the forearm near the elbow.
      Then I started reading all the various “studies” and accounts of facilitators who betrayed, (intentionally and not) the very people they were meant to help and I began to understand how so many people have gotten such different ideas about FC than what I witnessed.
      So in answer to your question, her hand is left free. P. supported her forearm right near her elbow and provided resistance to her, which made her slow down and not just impulsively jab at any letter. He said things like, “type what’s in your head” and “is that what you wanted to say?” It was fascinating to watch. She was totally focused and very intent on what she was writing. It was as though she became very serious and calm.
      I am completely new to all of this and am trying to read all the various materials P.’s sent me as well as watching the video clips on the Syracuse University web site – http://soeweb.syr.edu/centers_institutes/institute_communication_inclusion/default.aspx

      But I’ll keep writing about all of this and intend to video some sessions with Em as well.

  29. Hi! How great for Emma and you!! I had a question, though. When you say Emma was taught to repeat the questions asked her, how do you mean? Do you mean she would repeat it as a question, ie yes, do you want to go do X or as in yes i want to do X? If its the former, why was she taught to repeat the question as a question?

    Thanks!

    Marley

    • hi Marley,
      An example: I would ask, “Hey Em, do you want to have cereal now?” and she would type back, “Yes, I do want to have cereal now.” But I really wanted to move beyond this type of question and answer. I have been wanting to get to another level of conversing, which I know is possible, it was just finding a way to get there.

  30. One thing I wonder with the desire to have a deeper conversation is if it fits with how Emma processes the things that would make it deeper. I know a problem I struggle with is even in typing there is often a time delay before I know how I feel about something. Sometimes a long one. So maybe setting up a routine where you return to the previous topic before moving on if that’s an issue for Emma might help with the depth issue.

    I am always really accutely aware of this on Tuedays when I see my pscyhiatrist. We have all of half an hour and usually a tiny fraction of what I would have said or should have said I remember to say as I am standing up and the rest hits me the rest of the week. I did call him on not following the strategy I devised about not letting me go on about my interests before addressing other more critical things but I suspect since he can’t actually fix any of the critical stuff that’s why he didn’t do it.

    I absolutely hate being asked what I am feeling because there is never an honest immediate answer.

    The other issue is if it could be something you never thought to have a feeling or an opinion about. That people have actual feelings or at least claim to about some things continues to baffle me. Some of the things that children are routinely asked are among the very least sensical things.

    I’d think since Emma can talk you could let how her speaking style changes with certain issues maybe be a bit of a guide as far as where there might be deeper content she hasn’t articulated yet but maybe she still can’t even in writing.Maybe she can. I guess I worry about the potential for dissapointment if there is a long delay in getting the information you crave.

    • Gareeth – I really loved reading your piece about your nephew, it was beautiful, thank you so much for sending it to me, I just loved it. And would like to think about how to get it out (if you’re willing) to a larger audience as I think a great many would find it as insightful as I did. Was it ever published? What do you think about having it out in the world?

      As far as your comment, here’s the thing with all of this… it’s kind of a win/win because any input from Em is welcome, whether it’s immediate, a day, week or month later. My goal is to help Emma progress. She is able to answer yes/no questions now, she is equipped with enough language to have her basic needs met, so my desire is to find a way that will help her express more complex thoughts. Thoughts I know she has. I just want to find and provide her with the necessary tools so she can accomplish that.

      I actually don’t have any ideas about what her thoughts should be, so I don’t know that it’s possible for me to be disappointed, other than the disappointment I feel when something doesn’t work. But I know something will eventually, it’s just a matter of finding it. If it’s FC, then great! If FC doesn’t prove to be the thing that really helps her, I’ll keep looking until I find something else, but in the end, I see my job as her cheerleader, supporting her efforts and encouraging her to voice her thoughts and make sure she knows that she is valued, that her thinking is valued, that her opinions matter. That’s really what I care about most. I want my daughter to know, really know that what she thinks, feels and says are valued and important.

  31. Tryin fc is so awesome. You will be thrilled with what amazing things Emma will teach you about how she thinks, feels, loves, and understands. I was six years old when I learned how to type via fc. My mom and I watched a sassy show about fc on tv. Doug Biklen told about his work with autistic people. i saw people like me who couldn’t talk learning to communicate. Mom made a board like a typewriter keyboard out of poster board. She let me type words by giving me support on, my hand. Now I type with much less support. Mom says you can do this with Emma and not to give up.

  32. Fascinating – and wonderful for you and Emma! Yay!

    As for why it’s a sad story… well, she might also be thinking of it from Baby Bear’s point of view. That’s what I did when I read it. Baby Bear’s home was violated, his chair was broken, his breakfast was gobbled up, and the intruder then went and *slept in his bed*, his private space! How horrible! *shrugs* One possibility.

    I’m really pleased for both of you.

    🙂 tagAught

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

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