Tag Archives: mother/daughter

Our Amazing Adventure

Emma gave me permission to blog about some of our day yesterday.  I asked her, “Is there anything you typed that you do not want me to write about?”  She typed, “No.”  So… here goes…

We are in Texas to work with Soma Mukhopadhyay.  I’ve written about Soma many times before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  By the way, Tito, Soma’s son (who is non-speaking and autistic) is the author of several books.  I highly recommend all of them.

Soma began the session using a stencil board and having Em point to the letter she wanted with a pencil, then took the pencil, wrote the letter down, handed the pencil back, and on they went.  By the afternoon session Em was pointing to the first letter and then the next and the next, spelling out whole words and even several words before Soma wrote all the letters down.  As the sessions are all being videotaped, the stencil board is by far the best thing to use, as it is clear when you are watching the tape, which letters Em is pointing to, where as a laminated letter board, or a keyboard would be more difficult to see as clearly.  Soma does not touch the person she is working with.  There is no physical contact of any kind, unless initiated by the other person.

Some people have accused Soma of manipulating the stencil board.  I have watched Soma work with my daughter many times, as well as with other students and beyond the natural slight movement that occurs when holding an object with one hand, I have witnessed no manipulation of any kind.  With Emma she used a full alphabet stencil board, so even if one wanted to somehow make her point to a particular letter this would be impossible without physically touching her.

They began discussing the weather and Em wrote that she likes it when it is windy.  Soma asked her to tell her anything at all about windy weather and Em wrote, “flying leaves”.  They then discussed temperature, how heat rises, the sun, and finally Soma asked her for the name of any state.  Emma wrote, “Colorado”.  Soma asked her why she chose Colorado and I smiled knowingly, believing that I knew the answer and expecting her to write something about how this is where her Granma lives and where we go to visit several times a year.  But Emma had something else in mind.  She went for the letter “b” and then wrote “Boulder”.

Okay, I thought.  Boulder, that’s kind of weird.  Richard’s best friend lives in Boulder, maybe she’s thinking about Steve.  Meanwhile Soma asked, “What happened there?”  And Emma wrote, “flood”.  And I sat there stunned.  You see, we are not a family that ever turns on the television unless it’s for a pre-recorded show or to watch a dvd.  We do not listen to the radio.  We no longer have the NYTimes delivered to our house as both Richard and I receive it online and read the news from our iPads.  Neither Richard nor I spoke (that we can remember) about the devastation that occurred because of the flooding in Boulder recently.  And yet, there is absolutely no doubt that others have and did discuss the floods in Emma’s presence, though it’s doubtful anyone spoke to her about them and yet here she was, writing about the floods.

The afternoon session began with Emma choosing “story” from a choice between “story” and “number”.  Soma proceeded to tell a fable about a crane and a fox who were friends.  The fox invited the crane over for dinner and prepared meat for the crane which was almost impossible for the crane to pick up with his beak and the fox watched with great delight as the meat fell from his beak over and over.  Soma talked about how the fox was having fun, but mean fun and throughout all of this asked Emma clarifying questions about various words, all of which Emma knew without hesitation.  But the fox underestimated his friend the crane, Soma continued.  She then asked Emma what she thought about the word underestimated and Emma wrote, “less expectation”.  The story continued with the crane being polite and asking the fox to come over the next day for dinner at the crane’s house where upon the crane served the fox soup in a jar that the fox could not drink, except to lick the sides.  Soma then asked Emma for the moral of the story and Emma wrote, “do unto others”.

Soma used Emma’s interest (anxiety?) about the time and how long the session was going to last, to discuss time and the calendar year and then asked Em “how would you like to be treated by others?” Emma wrote, “I want to disappear when people talk about me.”  Soma asked a clarifying question about situations that she was specifically referring to and asked if Emma felt that way when people said nice things.  Emma said, “no”.

Later, using a laminated “yes” or “no” card that Rosemary Crossley uses and gave us, I asked Em more about this.  It came out that people are “mean” to her on the school bus.  I asked her if people were mean to her at school and she wrote, “No.”

Today we go back for Emma’s next two sessions with Soma.   As they say in the 12-step rooms – more will be revealed.  I cannot write about how I feel, other than to say, Soma is doing amazing work.  She has been doing this work for close to two decades, everyday for hours at a time.  I am learning a great deal, but will I be able to replicate what she is doing?  No.  I won’t.  Not yet, anyway and I don’t expect to, but I can get better with practice and I can apply what I see Soma doing with other things I’ve learned that Emma has responded to.  But more than anything else, I can continue to stretch my limited mind and limited thinking, (my neurological deficits) and practice, continue to practice expanding my knee jerk “truths” until one day perhaps I will no longer feel incredulous at what I continue to witness, not only with Soma, but with a great many people, all of whom have devoted their lives to finding ways for people like my daughter to communicate.

I want to disappear when people talk about me.

*I have read this to Emma to make sure what I’ve written is okay to publish.  She has given me her permission.

Soma and Emma

Soma & Em

When Confronted With Parenting Questions, What Do You Do?

Someone asked me recently a question about teaching personal hygiene to their nonverbal child.  This was a question about shaving, in this case legs, but it could have been about underarms and certainly could apply to young men’s facial hair as well.  It got me thinking about  how I doubt my gut instincts or at least question them or perhaps even ignore them when it comes to my Autistic daughter and why that is.  This post is not well thought out, I’m just going to say that right from the beginning.  I’m mulling this over and would love other’s feedback.  Think of this post as a doodle pad and feel free to add your own doodles.

I’ve noticed that when confronted with a question about how to move forward with either of my children I use a couple of different methods to figure out what to do.  First I speak with Richard, then in Nic’s case, I’ll speak with him and ask a lot of questions, then I usually will speak with Richard again, sometimes he will have gone to Nic and the two of them will have talked about whatever it is too.  We will then discuss, often getting sidetracked with our own histories, there will be lots of comparing notes and then if both of us are still unsure as to how best to proceed we will ask friends, look for literature on the subject, go to the internet, seek professional help, call my mother.   (This last is said in jest, sort of, except that sometimes it’s been true.)  The point is there are a number of steps we typically take and so far this approach has worked out pretty well.

But what about when your kid’s language is limited or nonexistent, what then?  This is where the part of my brain that is firmly rooted in neurotypical thinking gets into a rut, like a record that keeps skipping until you pick the needle up and physically place it elsewhere.  I want to change my thinking when it comes to parenting my daughter.  I don’t like that I don’t automatically go to her and try to find other ways to communicate with her.  I want to make a concerted effort to do things differently, because here’s the thing, Emma has shown me countless times that she can and does have an opinion on any number of topics.  I may not have the kind of conversation I can expect to have with my son, it may take more planning, it may not be as “easy” but it is possible.  I have to train myself.   I have to teach myself and here’s the big revelation – often it takes me a while to learn, but I can and DO learn if I’m patient with myself and give myself the time and encouragement I need.

A couple of months ago I asked Ib (totally and unabashedly giving her new blog, Tiny Grace Notes AKA Ask An Autistic,  a plug here because it’s a much-needed and awesome resource, she’s brilliant and I love her, I love you too, Richard, but in a more, you know, marriage-y kind of way :D) anyway, I wanted Ib’s help in trying to interpret some of Em’s scripts.  Ib and I brainstormed, but what became clear was that I was looking for a key to unlock her language as I understood it and what Ib kept (patiently) trying to explain to me was that I would never be able to achieve a word for word translation.  At one point Ib said, “Do  you speak another language?”  And I said, “No.  I barely speak English, but if you think learning Russian will help me, I’ll learn it.”  Ib (I imagined her taking a long, deep, breath) said, and I’m paraphrasing now, No you don’t need to learn Russian, but you need to try to feel what the emotion is in what she’s saying.

At the time, I was completely freaked out, couldn’t understand what she was talking about, but then after a few more conversations, and thankfully Ib didn’t give up on me, I began to understand, I think, what she meant.  My literal mind wants a word for word translation, but that doesn’t work.  So I’m learning to train myself to ‘hear’ her words differently, which brings me back to the first paragraph regarding questions about parenting and teaching and puberty and everything else.  I admit, I’m fumbling my way along here.  I don’t have any concrete answers, but I do know that listening is a huge piece in all these questions.  Listening to my children, listening to their sensory needs, but also listening to my own instincts.

Questions about puberty, hygiene, shaving and other such matters, I will continue to seek advice, particularly from my Autistic friends, while also taking into account my specific child first and foremost.  If it’s a question that is ‘optional’ such as leg shaving, how does my child feel, is it important to them, do they care, are they interested?  On issues like teeth brushing, where negligence will result in cavities and larger problems, I don’t think twice.  I started teaching both my children how to floss and brush their teeth when they were toddlers.  Both kids need to be reminded, but I don’t grapple with whether I’m doing the right thing, I know I am, I know how important it is.  But some of this other stuff, I begin to second guess myself.

Em and I have a routine at night.  When it’s bedtime she’ll say to me, “Mommy come.”  So I will go into her room with her where she lies down and then pats the bed so that I will lie down next to her.  In the past she’s said, “Mommy read story.”  And I have.  But for the last few weeks she hasn’t said that, but instead has talked.  At first it sounded like scripting, but when I listened to her I realized she was talking about people and school, the bus, sleepovers, listing people she misses or things she wants to do, just the way my son used to do when he still wanted me to lie next to him at night.  So I started asking her, “Hey Em, would you like me to read to you or do you want to talk first?”  Every single night Emma responds, “Talk first, then read.”

And honestly.  How awesome and amazing is that?

“Talk first, then read.”

Em, Nic and Friend

Waging War – Not So Much

I think of myself as pretty determined.  Someone who doesn’t take “no” for an answer.  A person who doesn’t give up easily.  When Emma was diagnosed I thought of “autism” as something to battle, wage a war on.  I saw it as something we needed to get rid of, a detrimental condition, which needed to be excised.   Emma is not “high-functioning” and while there are many people who reject these delineations of high and low functioning in describing autism, I do not know many parents of children with autism who fall in the moderate to severe category who object.  A child who needs support with daily living skills, while also being non-verbal or almost non-verbal has a very different set of issues than a high-functioning child who is mainstreamed and will most likely need support in holding down a job.  Both will need support, but one will need a great deal more and may never have the opportunity to live independently.  There is a difference.

In the over seven years since I learned of autism and first heard the word applied to my daughter, I find I am slowly letting go of the desire to wage an all out war on Emma’s autism and have been coming around to a slightly different view.  A view I hope will prove to be more productive and less stressful, for all of us.  Allow me to state the obvious – Emma is a little girl, first and foremost.  She is funny, has a great sense of humor, loves music and dancing, loves to perform.  Emma feels tremendous anxiety when she doesn’t know how to do something or is asked a question she doesn’t have the words for or is unable to fully grasp the concept of.  She tries hard.  She makes Herculean attempts to do what is asked of her.  She has sensory issues, which I still do not fully know how to help her with.  She has internal issues I no longer expect anyone to be able to diagnose.  And she is my daughter.

A few years ago she went through a period when she raided my lingerie drawer on a regular basis.  Richard and I (and sometimes guests) would be sitting in the living room when all of a sudden Emma would burst forth, donning a bra and pair of my underwear, but otherwise naked.  The bra haphazardly flung around her shoulders, the cups puckered, the underwear sagged and falling off, she gripped a corner in one hand to ensure they didn’t completely abandon her.  The first time she did this, Richard began laughing, while our guest, I think it may have been an electrician who was fixing a blown lighting fixture stared in stunned silence from his perch on a ladder, while I  hustled her back into our bedroom, out of view.  The second time she appeared, wearing the same combination – never any of the more colorful and attractive lacy lingerie I happen to own, always the same set of sensible, no-nonsense skin-toned bra and underwear – I was able to laugh with Richard, before telling her to go put everything back.  Her raid-mommy’s-lingerie-drawer episodes were interspersed with raiding my shoes, thankfully never at the same time, it was one or the other, for which I am grateful.   Her favored pair of shoes was a pair of red suede pumps, which she would clomp around in.  During these forays into my things, Richard would say things like – “She’s mommy’s little girl!”  or “She’s such a girl!”

That I love her, goes without saying.  She is my daughter, Emma.  Who happens to have autism.  The autism piece is complicated, the beautiful little girl/daughter piece is not.  I used to view Emma’s autism as something separate from her.  I used to think of it as something, like a tumor that needed to be removed.  I am coming around to having a less draconian point of view.  I am beginning to have some acceptance around it.  I find myself thinking less about ridding her of it and more about helping her be all that she can be.  Waging war has been exhausting.  Maybe, in the end, it all comes down to nothing more than semantics, but I am tired of battling something that does not need to completely define my daughter.  I am lucky, Emma is verbal, Emma has shown that she can and will learn to read, write, communicate more appropriately, focus, and is able to understand abstract concepts such as time, names, part vs whole, same vs different, etc.  It just takes a great deal more practice and time.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Autism – Daughters (continued)

I so wanted a little girl, I so looked forward to having a little girl who would feel safe enough to confide in me, the way I have always felt able to confide in my own mother.  (I feel a great deal of gratitude for that.)  I know how fortunate I am to have an amazing mom.  I have conversations with friends who audibly groan when the subject of their own mothers come up.

“If it’s not one thing, it’s your mother,” is something I’ve heard on more than a few occasions, uttered by exasperated adult children.  The famously “bad mothers” occupy several shelves of literature, poetry, plays and movies.  We all know them by name and every few years a few more get tossed onto the pile.  Beyond enjoying the guilty deer-stuck-in-the-headlights-horror of those stories, I cannot relate to them, thankfully.

My mother taught me how to sew and macrame, (this was the 60’s & 70’s) embroider, quilt and knit.  She showed me how to bake bread, make baclava, beef wellington and a fifty layer Daubache Torte.  I think I can justifiably credit my mother for my love of design and current career.  She read stories to me at bedtime and sang songs.  I remember sitting on the vanity in her bathroom as she got dressed to go out to a party.  I thought she was the most beautiful woman I’d ever seen.  I watched her as her hair turned grey and her fingers became deformed by arthritis.  I spoke with her about the aches and pains that come with growing old.  I looked to her the way one consults a Michelin Guide in a foreign country, she has always shown me the way.

Perhaps it is the same for Emma, I cannot know.  I know she feels connected to me as I do her.  I know when she wants something and I can often understand what she’s trying to say, even when the words come out wrong.  Lately she has even run to me when she’s hurt, though more often than not, I will have to prompt her, much the way I still must remind her to – “wrap your arms around and squeeze” when she hugs.

“You have to go see the nurse!”  Emma will shout when she hurts herself.  Then she’ll hightail it into our bathroom where she knows we keep a large supply of bandaids.

“Hey, Em!  How about coming to see nurse mommy?” I’ll ask blocking her way.

“Ouch!  Emma has a boo-boo!”  Emma will tell me, wiping the tears from her eyes, but keeping her distance.  Unlike neuro-typical children who instinctively seek out the comfort of a parent when hurt, Emma will instead cry out for the school nurse or say nothing and just take care of things on her own.  Often this means returning with a half dozen bandaids applied to various parts of her body, making it difficult to know exactly which part was hurt.

I think the thing about all of this that’s perhaps most important, is, while I don’t have the relationship with Emma that I envisioned when I was pregnant with her, we do have a relationship.  It’s a different relationship than I have with my mother.  But it is a relationship and it continues to evolve.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com