Tag Archives: unreliable speakers

A Case for Merlin ~ By Emma

Posted on February 17, 2015 by | 26 comments
This is Merlin

This is Merlin

Nothing vanishes without questioning Merlin’s participation in the disappearance.  He never admits to wrong-doing, but instead greets the attention with purrs.  Even dog lovers fall under Merlin’s spell, charming the most biased minds to rethink what they had assumed true of all cats.

Merlin is unusual because he plays fetch and follows his favorite humans around with devotion.  If you don’t like cats it is because you have not yet met our Merlin.

But if you ever lose something, don’t blame Merlin.  He had nothing to do with it.

Merlin approved this post.  🐾

Where's Merlin?

Where’s Merlin?

Merlin among the cookie jars.

Merlin among the cookie jars

26 Comments

Posted in Autism, Creative Writing, Parenting

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“Let Me Tell You…”

Posted on November 15, 2013 by | 33 comments

Emma gave me permission to tell all of you what she would invent were she an inventor.  *A little background – the quotes from Emma are what she spelled out by pointing to a letter, one letter at a time on a stenciled alphabet board.  No one touches Emma as she does this.  In fact there is no physical contact of any kind during the session, also known as an RPM (Rapid Prompting Method) session.

Emma has been doing RPM daily with me since the end of September.  Within the past two weeks she has begun to answer open-ended questions with me.  However the session I am going to write about was with someone who was trained by Soma Mukhopadhyay (the creator of RPM) and whom she is now seeing a couple of times a week.  This person, who I have not asked permission to print her name and so will refer to as B, has been doing RPM for a while now and as a result is able to move far more quickly into open-ended questions than I am.

In their previous session they had discussed train engines.  At the end of their session B asked Emma to think about what she might invent were she an inventor.  When Emma returned for her next session they began with the question, “What would you think was a really great thing to invent?”

Emma then replied, “Let me tell you that it is not a train engine.”

I have to interject here…   I love how ballsy my daughter is.  I love that she didn’t just answer with one word.  I love how audacious, cocky even her answer was… “Let me tell you…”  Emma spells words out, and I sit watching, literally on the edge of my chair, waiting, wondering what wonderful words will she write?  “Let me tell you…”  YES!  I cannot wait to hear what you have to say!!!!!

Emma continued, “It is more from the future…”

B urged her to tell us more.

“It is a spaceship.”

For all who know my husband this answer has brought a smile to your face.  For those of you who do not, let’s just say he has a particular fascination with spaceships, UFO sightings, etc.  He has logged in many an hour watching YouTube clips of various sightings.   As I sat watching my daughter spelling out these words I kept thinking how much Richard was going to LOVE hearing about this session.  But there’s more…

B encouraged Emma to continue, asking her to tell us more about the spaceship she would invent.

Emma spelled out, “Have you ever seen spaceships in New York?”

Sorry, I have to interject again.  This question… this question is wonderful and defies all that is commonly thought about so many of our kids who cannot verbalize questions like this.  For all those parents who have never had their child ask a question, for all who have bought into this idea of Autistic self involvement, of a lack of interest in others, this thought that our children who are non-speaking or unreliable speakers are “caught” or “lost” in some other world… to all of you, I suggest we rethink these ideas.  My daughter is not the only one writing things like this, she is one of many, many children, teenagers and adults who cannot voice their thoughts, but are writing them.  I have watched her, time and time again, asking questions; this kind of engaged conversing goes against everything we are taught and being told about non-speaking/unreliably speaking autistic people.  

B answered Emma’s question saying that she had not seen a spaceship in New York City.  She said she’d seen a great many different types of transportation in New York City, but never a spaceship, to which Emma then wrote, “You never have to wait to go anywhere.”

B then asked her how you could get a spaceship and Emma wrote, “You buy it on your own or you get a monthly pass.”  (In New York City most of us take advantage of the terrific subway system.  To use the subway you need a “Metrocard” which you can purchase for a single ride, multiple rides or for those who commute daily a monthly card of unlimited rides.)

B observed that as parking in New York City is already limited she wondered where a spaceship would go.  Emma wrote, “No parking needed.  Once they have landed they become invisible.”

B then asked her,  “How do you call for one?”

Emma wrote, “You have a button to press and it arrives right away.”

“Let me tell you…”

images

33 Comments

Posted in Autism, communication, Parenting

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Changing Our Thinking

Posted on October 1, 2013 by | 25 comments

I asked Emma for her permission to talk about language retrieval issues, and specifically to describe some of what occurred during her first session with Soma last week.  She said it was okay for me to do so.  I’m incredibly grateful to my daughter for being so generous with what is personal information.  She has given me her permission, but to leave it at that, would be wrong.  To not acknowledge what this means would be negligent at best.  She is unbelievably generous to allow me to share these things.  I do not know how many of us would be willing for another to share such personal things about ourselves, and the trust she has bestowed upon me, the trust that I will not betray her…  it is something I not only take very seriously, but need to acknowledge.  To say I am grateful does not come close to describing the feelings of appreciation and awe my daughter inspires.  If all human beings could take a page from Emma, both in her cheerful generosity in giving of herself so that others might benefit and her compassion and willingness to see the best in people, even when so many have said and done cruel things to her, this world would be a far better place for all of us.

I wrote about Emma’s first session with Soma ‘here‘.  What I didn’t write about was how after Emma pointed to a letter she was encouraged to say the name of the letter, just as her Proloquo2Go program does on her iPad.  She was able to do so without hesitation.  But when Soma put the stencil board down and asked Emma to say the next letter of the word she was writing, without pointing to it first, Emma would, more often than not, say a random letter.  Soma then picked up the stencil board and again without hesitation, Emma pointed to the correct letter and was able to identify it correctly out loud.  After Emma wrote a sentence she was invited to read the sentence aloud, but could not do so.  This is a sentence she’d just written, one letter at a time.  A sentence she’d created, yet was not able to read.  It is not then surprising that Emma is unable to read a random story out loud, even though she is perfectly capable of reading it silently to herself and fully comprehending it.  See related post about reading aloud, ‘here‘.

To see this broken down, to witness this at the level of single letter retrieval and not a whole word even, made it all even clearer to me.   Which isn’t to say that Emma will never be able to do this.  Perhaps at another point, perhaps once she is proficient in writing her thoughts and identifying a letter after pointing to it, one letter at a time, she will then be able to work slowly, patiently and without the anxiety of feeling expectations are being placed on her, perhaps then she will be able to come up with the next letter before she points to it and from there the next word and on it goes until verbal language can catch up to her written.  But for now, it is imperative that every single person who comes into contact with my daughter understand how detrimental it is for her to have these expectations placed on her and then to have the inevitable conclusions drawn about her comprehension and ability.

My daughter is nothing short of brilliant.  I am not saying this as a biased mother who is basing her thoughts on nothing more than some sort of convoluted tip of the hat to genetics, or a round about way of bolstering my own ego and intellect.  I am saying this because I have seen the evidence.  Since her diagnosis, Emma has been treated as though she were intellectually impaired when, in fact, she is intellectually gifted.  This is, I’m sorry to say, something I am hearing from others.  We have a growing population of children and people who are treated as though they are incapable, when in countless cases the opposite is true.  The onus is on us to change our current teaching methods and the therapies we are employing and to open our minds to the idea that we have gone about this all wrong.  This is what must change.

Soma & Em copy

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Posted in Autism, Parenting, Soma Mukhopadhyay

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