The strangest experience I’ve encountered with my daughter is seeing her work with someone like Soma Mukhopadhyay or Rosemary Crossley or Pascal Cheng or Harvey Lavoy. I don’t know that one can ever really be prepared for the flurry of emotions that threaten to overwhelm as you sit and watch your non fluent speaking child write profoundly insightful things, show their vast intelligence and knowledge despite having had almost no formal education and what little they’ve had it was most definitely not anywhere near what they are capable of or even at age level.
To watch them so easily converse through writing, or what looks so easy as I sit witnessing… it is like nothing else I’ve ever experienced. The only thing I can liken it to was when I was eight years old and my older brother told me that the universe was infinite. I remember saying that couldn’t be true, that it must end somewhere, and he looked at me and smiled. Then he asked, “if it ends, then what’s on the other side of the “end”? And I sat there mesmerized by this idea of infinity, trying over and over to imagine what that looked like, and my mind coming up against the impossibility of this concept, so conditioned, already at the age of eight to think of things as being limited.
So inevitably, after we return home from seeing these various people, or after they pack up their things and leave, I am filled with optimism. After all what we’ve just witnessed fills us with hope and the future, our child’s future is limitless. Every time, without fail, I am filled with astonishment that my daughter isn’t enthusiastically and cheerfully typing or writing her opinions and thoughts about things with me. I’ve discussed this with my husband, I’ve spoken to close friends, I’ve talked to other parents and always it is variations on this story. The incredulous parent with the child who does not seem overjoyed with the idea of continuing to do this all the time, or even any of the time.
At first I spoke of it as resistance, but that puts the onus on my child and I’ve learned to be very careful with words like that, they are far too close to the whole, “you just have to try harder” idea, which I know both for myself and for her is detrimental. This isn’t about trying harder, this is about how difficult communication is for someone like my daughter. Just because she can communicate through typing or pointing to words on a stencil board, does not mean it is easy or simple for her. Just because I am filled with enthusiasm does not mean it isn’t hard work for her. And so I have to acknowledge how hard this is.
I’ve thought of it as akin to the difficulty I have in learning a foreign language, but I’m not sure that’s really a great analogy. To me, the idea that she can communicate in any form is just fantastic news and to my thinking why wouldn’t my child want to grab that and run with it? And then I thought about meditation or exercise or eating foods I know are good for me and how I know my day will go better if I do these things and yet days will go by and I don’t. Perhaps it is more like that. Perhaps the importance I place is not the same or maybe importance isn’t even part of the equation for her.
What I’ve noticed is that I feel tremendous fear trying to replicate what I’ve witnessed. I worry that I will do it wrong, that I will inadvertently hurt her or make a mistake that will cause her upset. I worry that I will make what is already difficult even more so. I am also aware of how I do not want to be disappointed. I do not want to feel those feelings of hope and expectation dashed and the inevitable feelings that then follow, which are often doubt. Was it all a dream? Did it really happen? Could it be it was just that one time? A kind of burst of brilliance, never to be seen again?
I have had dozens of these moments over the last year. Dozens of times when I have doubted what I just witnessed. Dozens of times when I’ve thought – I won’t be able to do this. I’m too invested, I’m putting too much pressure, I can’t do it, I won’t be able to, I’m not cut out for this kind of work, I don’t have the patience. But what I see over and over is that I do and I can. I have to go slowly, I cannot expect to get the results that people who’ve been working with non-speaking Autistic people for decades get. I have to begin with simple options. In supported typing they have a “ladder” of communication and new supporters must begin at the bottom rung, not because the person they are supporting isn’t capable, but be cause they are not, not yet. With Soma’s method it is similar. One begins with choices, and from there fill-ins and slowly, slowly as one becomes more confident, as trust is built, I will move to increasingly open-ended questions.
All of this requires patience. Patience with myself, patience with the process, patience with my child. Patience. Showing up and being in this moment without expectation. Patience with my limitations. Patience with my inexperience. Patience with my limited thinking that is slowly, slowly expanding to embrace the unknown.
Today Emma is sick and so is home from school. I asked her what she wanted to discuss – poetry, a story, or Buddhism. She wrote, “buddhism.” The irony of her choice is not lost on me…
Emma's Hope Book 
Haha, she knows you need to enjoy the “now” and relax.
Exactly!
I have been exploring some ideas for a new Bible study discussion group and I’ve come across a book in my library (where it’s been lying unnoticed for more than 40 years) about wandering through the wilderness. That too, biblically speaking, was for 40 years, a metaphor meaning a long time, perhaps even a lifetime. But the message is that we are all on a journey through a wilderness, a time of trials and response, of newness and unpredictability, of being unsure and yet hoping, of yearning but patience.
I think Emma gets it. She’s in the moment just as Siddartha Gautama, The Buddha was.
Well, as Pop used to remind me, patience has never been my strong suit, but I’m learning, I’m learning…
For me… and I speak quite fluently but that doesn’t mean I communicate well or that what comes out of my mouth is what is in my head (it can be related but still not right or unrelated or completely opposite)… typing truth, or reality, something that IS and is in a big way, is like birthing a beachball. It’s positively exhausting. You work, and work, and work and out comes this monumental thing and then you’re just… done. My thought is that Em might just be DONE after all the time with Soma…
I hope that’s not true, Lydia. Or if it is, that it will not be true for long. Or am I taking what you are saying too literally and you don’t mean – done forever, but done for the time being…
At ten my eldest son is just trying out a few words, but they are few and far between. It is so difficult to wait, and yet I know I need to make this about his needs/wants and not mine (which is still so difficult for me to do when it comes to communication!). I wish you patience and fulfillment, and in whatever form the latter comes in, I hope it gives you peace.
Aw… thank you. I wish the same for you, well actually for all of us!
Yes it does get confusing and/or frustrating sometimes to have worked so long to get his AAC and being told providing a form of communication is key by many autistic ppl…and knowing all that is inside of him that we have no idea of the possibilities…and then he does not take it and run with it as you say. But even though the progress is soooooo slow sometimes…I think that allowing them to do it on their own at their own pace teaches them more important things like how to do it themselves and for themselves. I remind myself to look at the less obvious things he is growing by leaps and bounds in such as self regulation and following directions rather than the more standard measurements of speech, self care etc. ahhh ok anyway this is getting more disjointed by the minute but hopefully you understand what I mean.
I do understand. I do!
My daughter (12) is usually verbal, but the older she gets the more she can tell me about her world. Her symbols might be from anime shows, but the concepts she expresses are spiritually profound.
So great, Lynn.
I want to say kind words, supportive words, but all I can think of is giving hugs because this is so hard for you. Yes, it is hard for Emma too. But right now I think it’s you who can use some empathy and compassion. You know what I was thinking when I read your words? That maybe the trust thing is key here. Are you afraid that she trusts the people who’ve worked with her over the past time more than she trusts you? Because I think… and I might be wrong… but don’t underestimate her willingness to do something to please you. Maybe she worked extra hard with these people because she felt on a certain level how much it meant to you. And that because she trusts you completely, she can put in less effort at home, not try as hard, not use so much precious energy. Maybe she knows it’s frustrating to both of you when communication doesn’t happen easily or naturally, but at least she can relax a bit.
I’m totally projecting, of course, but Lydia’s words sort of echoed what I was thinking as well. It’s hard. It becomes easier with practice, provided we get space to calm down and relax after putting in such an effort, and don’t get constantly pushed beyond our current limits. And I think you’re giving that space to her.
You are so thoughtful to write this… thank you. It is really complicated because I have done things that certainly eroded her trust, I think. I allowed people to work with her who should not be in the profession of working with Autistic kids. It doesn’t matter how well meaning they were, the methods they used were not okay.
I know the key is patience, for her, for me, for the process. I know this. I also know that being very gentle has to be part of that process, again with both of us. I definitely believe it’s important that there be boundaries around the writing we are doing. I set a timer. At the moment it is for 25 minutes and then we do fun things, singing, listening to music, lots of down time and time to just be alone doing whatever each of us wants. (Well, this is true for the weekends anyway, less so for me on days like today as I must also work.) But the point is, I really do see how hard this is and have tremendous respect for the effort as well as am honored when she works with me.
An autistic friend said to me once that the effort it takes for her to have a conversation is not often understood and that she wished people could be a little more grateful for the time she gives them because if they really knew how hard it was they would see what an honor it is when she chooses to speak to them at all. That really resonated for me and made me think of my daughter. Each time we work together and she shows up for that work, I am grateful and feel honored.
So it’s the impatience that nips at my heels and also makes me less present for the gratitude. But this too is a process and I’m learning too. Just like my daughter this is all so new to me. Grateful for all of it, but still tough at times… for both of us…
People think speaking is communication. They extrapolate that for those who don’t speak typing is communication.
Yes this is true.
But it is not the whole story.
There is something more.
It has to do with connection.
Relational connection between human beings.
Without a connection between people based on the essence of each of their beings what looks like communication might instead be more like a performance.
There is much much much more to the sounds and movings of the internal thought colors, but I am not able to match words to it just now.
Don’t worry. You are just fine.
Thank you Judy. “Without a connection between people based on the essence of each of their beings what looks like communication might instead be more like a performance.” Love that and need to think more about this.
This really struck a nerve with me because I’ve been finding communication especially hard lately and I think it’s a result of asking myself to communicate too much. I’m fluent when typing and often when speaking but I have a finite amount of communication in me on a given day or over a period of time. If you’re looking for an analogy, think running. After a while it just gets physically hard and I need to rest before I can head out for another run. In that sense maybe Emma needs time to slowly build up her endurance.
There are so many instances where I want to communicate but I just can’t find the energy to get my thoughts from my brain to some form of coherent communication. In my ideal world Vulcan mind melds or telepathy would be a real thing and I could just think at people. 🙂
I cannot WAIT for a time when we can just think at people! It will make all of this so much simpler.
I do think you are right about building up endurance, for both of us!
There could be many reasons. The sessions with Soma…was she asking her to sit and do work and are you hoping she will come to you to communicate? If so, then it makes sense to me. Your relationship to this point is mom. Now you are thinking of adding to your relationship and you will be mom and teacher. This is very confusing to any kid. Emma knows what teachers expect from her, so maybe she was just doing what was expected with Soma. Some suggestions: Engage Emma based off her interests (her echos, utterances, non-verbal signs like glances). Try “working” in the same location and/or same time every day to help Emma understand when you want to try to have the lesson (it really is a lesson right now…you are right, this is hard for her). Start with just a few minutes and add. Learn to give yourself time out when you get impatient (I am still working on this…totally blew it yesterday). Make sure the space you are working is free of distraction and very comfortable. For us closing the blinds, and getting a smooth-backed chair made all the difference. Her non-verbal signs lead the way on these sensory/attention issues. I think Judy is right, you don’t want it to be so forced it is a performance or it impacts your relationship negatively. But the only way to find the line between helping her and going to far is to dive in and work together. And to make mistakes.
Thanks for such thoughtful suggestions!
They may be totally off the mark because I don’t have all the details, but at least you know I am thinking of you!
I do/did! 💕