Tag Archives: determination

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