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More Than Just A Toy

May 2, 2013 By

It is snowing outside, but it is almost too warm in the speech therapist’s office. None of us really wants to be there. Not me, not George, not even, I suspect, the speech therapist. George – three years old and non-verbal yet defiant – has refused to remove his coat even though he must be getting toasted under all of those layers.

He sits down unwillingly, and I position myself between him and the door to prevent any escape attempts. I settle in to watch what will undoubtedly be yet another fruitless session. We’ve been coming here for almost a month now, and George has not responded to a single thing. His speech is no further along than it was to begin with, and although I like the therapist very much, a part of me is wondering what the point of all of this is.

As usual, George is making niggling whiny noises, not-quite-crying noises, little sniffles and moans that make it abundantly clear that he does not want to be here. He doesn’t care for any of the toys that the therapist is producing out of nowhere, like a magician. He doesn’t care for toys, period, but the therapist patiently insists that it’s just a question of trying until we find the one thing that will work.

As George starts to noisily rock his chair back and forth, I sigh inwardly, but following the therapist’s early instructions, I do not say anything. I am tired. I am sad. I am frustrated. I suddenly find myself having to blink back tears that threaten to spill down my cheeks.

And then… a miracle.

The speech therapist puts Mr. Potato Head down in front of George.

It is love at first sight. Instantly, the rocking stops and the whiny noises are replaced with a stunned silence. I can literally see my child’s eyes filling with wonder. It’s like witnessing a rain shower on a parched desert.

Instinctively, I hold my breath and stay completely still. I just know that something special is happening, and I don’t want to ruin the moment.

George reaches out shyly and touches Mr. Potato Head. Then his entire face – his entire soul – erupts in the biggest, most beautiful smile I’ve ever seen.

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From that moment, George started making progress at his speech therapy sessions. Thanks to Mr. Potato Head, his vocabulary started to explode. Not only that – he finally had a toy he was interested in playing with. Not staring at, not lining up according to colour, but actually playing with. When friends and family members asked what they should get him for birthdays, we had something we could tell them.

Six years have passed since that day in the speech therapist’s office, but George’s devotion to Mr. Potato Head has never wavered. He collection takes up two large Rubbermaid tubs – and those are just the Potato Heads that are not adorning his desk, his bed, and other flat surfaces at various points throughout the house. He has Mr. Potato Heads, Mrs. Potato Heads, Baby Potato Heads, Darth Tater, Indiana Jones Taters of the Lost Ark. There’s a hockey player Potato Head, a pirate Potato Head, a doctor, a fireman and a sheriff. George has an entire Potato Head community that keeps on growing.

Earlier this week, Mr. Potato Head celebrated his 61st birthday. This is one of the most iconic toys of the 20th Century, right up there with Barbie and Lego.

But to George – and to his grateful mama – Mr. Potato Head will always be more than just a toy.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Mr. Potato Head, Special Moment, Special Needs, Speech, Speech Delay, Speech Therapy Tagged With: , , , , , ,
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Ten Little Teddy Bears And Other Echolalic Utterings

January 25, 2013 By

About six years ago, when my older son was almost 4, I got all excited when I heard him say the phrase, “Ten little teddy bears.” He had virtually no vocabulary in those days, and he almost never spoke. And here he was, uttering a four-word phrase. This was indeed a cause for celebration.

Of course, this happened in a simpler time, when everyone assumed that my son had nothing more than a speech delay. The word “autism” had only made it into my personal orbit as a possibility to be in complete denial about. What? Autism? No way! He just has a speech delay, he’ll catch up!

When we got the autism diagnosis, we found out about echolalia, defined by Wikipedia as “the automatic repetition of vocalizations made by another person.” All kids do it at some point, but most outgrow it. Kids with autism keep at it with admirable dedication, sometimes for years and years. The words being repeated may change, but the concept remains the same.

Ten little teddy bears stayed with us for some time, eventually giving way to phrases related to Bob the Builder and Mr. Potato Head.

I used to think that as the frequency of George’s contextually correct speech increased, it would edge out the echolalia, but that has not been the case. George definitely talks more. He has an extensive vocabulary, and although he hardly ever talks in a social context and still cannot participate in a conversation, he does make requests using full sentences. There is plenty of room for George’s contextual speech to coexist with echolalia.

Over the years, we have been treated to song lyrics, phrases from YouTube videos, sentences uttered by teachers and things that have been said at home.

“Bob dropped the eggs. What a mess.”

“I need Dizzy, Lofty and Muck.”

“No pushing, no kicking, no hitting.”

“Well it’s a sunny day. I feel brand new.”

Some of the echolalia is charming, and it’s thrilling to hear my child utter any words at all. But it is a little disheartening to know that a lot of what he says does not have any meaning or context behind it.

The latest echolalia is not charming. It takes the form of a single word – a word that I would not use on this blog if it weren’t a pivotal part of the story.

Fuck.

I freely admit that it is my fault. Although I try my best to be aware of my choice of words when the kids are around, from time to time I slip up with the F-bombs. It happens rarely, but the kid only has to hear a word once.

At first it was simple repetition, and we responded in the same way we’ve responded to all other echolalia: by ignoring it. Sure, it wasn’t fun to listen to this word being said over and over ad nauseum, but for a while, the best reaction was no reaction at all. Many autism experts agree that any response at all, even a negative reaction, can be perceived by the child as positive reinforcement.

This tactic lost its effectiveness when George got wind of the fact that fuck is that most tempting of things: a Bad Word.

We are now dealing with a child who gleefully yells, “Oh FUCK!” and then runs away in fits of giggles.

Ignoring it no longer works. You know that persistence and single-mindedness that many people with autism display?

Yeah. George’s ability to laughingly repeat the word is greater than my ability to ignore it.

Reprimands don’t work, and in fact, just aggravate the situation and make it funnier from George’s perspective.

The only thing left is the dreaded removal of privileges. I really don’t want to go this route because there will be a meltdown for sure, but I may not have a choice.

Unless, as someone on Facebook suggested, he actually uses the word in context. If that happens, I might just throw a party.

How do you handle inappropriate language in your typically or not-so-typically developing children?

(Photo credit: Vectorportal. This picture has a creative commons attribution license.)

Filed Under: autism, Echolalia, parenting, Speech Tagged With: , , , , ,
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Autism And The Art Of Conversation

May 17, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Every night, I give my older son George a piggy-back ride to bed. These days are numbered, of course. George is almost nine and he’s all arms and legs. Someday soon, he will too tall and heavy for me to cart around on my back. For now, though, I treasure these last days of being able to pick up my son.

We get to his room, where I dump him unceremoniously on his bed. He tucks himself in while I turn off the light, and then I lie down beside him. For the next few minutes, it’s just him and me, alone in the entire world.

We talk. I ask him questions. He answers them.

Who does Mommy love? She loves George.
Who does George love? He loves Mommy.
How do you feel? Happy.
Did you have a nice day? Yes.
Where did you go? School.
What did you do there? Math.

Always the same questions. Always the same answers.

I follow this ritual for the sense of closeness between me and my son, because it’s a comforting part of our time together. I also do it to help him practice the art of conversation. His verbal communication skills are worlds behind those of typical kids his age. He knows how to talk, how to make requests and the occasional joke. He is starting to make the odd remark for social purposes, and not just when he needs something.

But he does not know how to have a conversation. So I am teaching him.

When George was first diagnosed with autism, he did not know how to point. Over a period of eleven painstaking months, during which I followed the same routine every single night, no matter how futile it seemed, I taught him how to point. I still cry when I think of the first time I was rewarded with him pointing independently.

If I could teach him how to point, surely I can teach him how to have a conversation. After all, they are both forms of communication, right?

From time to time, I switch up the questions during our nightly routine, and ask him something else. When I do that, he never answers the question I ask. He gives an answer to the question he was expecting. I don’t mind. It just shows that he’s not yet ready to move to the next level. There’s no rush. I can wait. It will happen when he’s ready for it to happen.

It’s OK that he has memorized the sequence of questions and answers. Children learn to read in much the same way, rote-repeating sentences that they have heard many times, before making the connection with the printed text. There is every reason to believe that George’s relationship with conversation could evolve in much the same way.

While I’m helping him learn a skill that will be of value to him for his whole life, I am treasuring those nightly moments we spend together.

(Photo credit: Kirsten Doyle)

Filed Under: 2012 Wordcount Blogathon, autism, Communication, Conversations, Moments, Routines, Speech, Speech Delay Tagged With: , , , , , , ,
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Lost For Words

January 13, 2011 By

I think the Internet was the best thing ever invented.  OK, make that the second best thing, after coffee, which when you think about it, wasn’t actually invented in the true sense of the word.  One reason the Internet is so great is that it enables me to keep in touch with people without actually having to talk to them.

Lord, that sounds awful, doesn’t it?  It makes me sound like an arrogant, antisocial jerk who doesn’t care about the people in her Facebook friends list.  Let me assure you that this is not the case.  I care about people a great deal, and my friends are very, very important to me.  I realize that this is the kind of thing that anyone would say, even people who would sell their grandmothers to the devil.  But I really do mean it. I have my fair share of faults, but I believe that the people I care about would describe me as a good and loyal friend.

So when I say that I want to keep in touch with people without talking to them, it’s not the actual people that I have an aversion to.  It’s the talking.

Let me pause for a moment to say this: what I am sharing today is a glimpse into a part of my life that I have difficulty with.  It is something that, while not exactly earth-shattering, is not easy or comfortable to talk write about.  And while there are certain aspects of my life that I will never share publicly, I just-about-kind-of-sort-of feel brave enough to discuss this.

You see, all my life I have suffered from pretty intense social anxiety and awkwardness. While I always enjoy being around people, I frequently don’t know what to say when I’m with them.  Or to put it more accurately, I know what I want to say but I find myself unable to say it.

Are you confused yet?

Here’s what it’s like for me.  I often find, when I am talking to people, that I am able to formulate an idea in my head.  I can script the words I want to use in order to verbally express that idea.  But when it’s actually time for me to utter those words, I cannot.  The best way to describe it is that the words get lost somewhere between my brain and my mouth.  It’s as if the synapses in my brain that are responsible for translating thought into speech just aren’t firing.

Picture yourself sitting in your car in your driveway, intending to drive to the post office, and suddenly discovering that all of the roads between your house and the post office have suddenly disappeared.  So you sit in your car at home, at a loss as to what to do.

Or if you’re me, you sit there not taking part in the conversation, and people just assume that you don’t have anything to say.  And you get more and more frustrated because you do have something to say, but you are unable to say it. Or when you can say it, you sound awkward and stilted, and because this whole conversation effort is so stressful, you come across sounding abrupt or disinterested or babbling in an uncomfortable way.  If I’m in a situation of conflict with another person, this problem multiplies a hundredfold.

Some people who know me personally are probably reading this and going “Huh?”  This verbal debilitation I experience is not visible to everyone – a lot depends on who I’m talking to and what the circumstances are.  This problem is a disability of sorts, and people with disabilities learn how to adapt, and how to live life as seamlessly as possible without letting the disability take over.  But even at times when I give the appearance of having a normal conversation, I am capable of feeling a level of anxiety that most people probably cannot relate to.

Although certain events in my life may have exacerbated this issue, it is really something that I have always lived with.  I had a variety of developmental delays as a child, and only developed a reasonable level of functional speech at the age of five.  Throughout my childhood and adolescence, my social development was far behind that of my peers.  At an age where most of my contemporaries were going to parties, acquiring boyfriends, and traveling in large, noisy packs, I was the quiet, awkward one who never said much.  My social anxiety was frequently misconstrued as shyness.

As an adult, this has impacted my life in a number of ways.  Certain events in my life can be attributed at least partly to the fact that I did not have the social skills I needed to deal with things differently.  These events have ranged from the minor events that you forget about the next day to the bigger events that stay with you for life.

My social interactions tend to vacillate between two extremes: one the one end, I kind of clam up and don’t say anything.  On the other end, I talk non-stop, saying inconsequential stuff to cover up the anxiety I feel.  In the middle of these two extremes are the “normal” interactions I enjoy with my family and my closest friends; with people that I have a high degree of trust in.

Telephones terrify me.  Seriously.  I hate the things.  If I could get through life without ever talking on the phone, I’d be happy.  When I do find myself on the phone, I get the hell off as fast as I can.  Again, there are exceptions.  My Mom?  I could talk to her on the phone all day.

I love to write.  Love, love, love it.  My tendency to lose words does not extend to my writing – in fact, I have a theory that my writing skills have developed pretty well in order to compensate for the difficulties I have with oral communication.  This is a good outlet for me.  It is a way for me to share a part of myself with the world, without going through the anxiety that I might otherwise experience.

I find my social anxiety issues to be disabling at times, but being the eternal optimist, I strive for things to be better.  I adapt, I compensate, and I seek opportunities to overcome.

(Photo credit: Flickr Creative Commons Attribution License)

Filed Under: Communication, life, postaday2011, Speech, Uncategorized Tagged With: , , , , , , , , , , , , ,
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Why so quiet?

July 16, 2010 By

Some time back, my son James, who is all of four years old, announced that he had a pet monster named Billy. Billy, apparently, is a yellow monster with tall hair.  He is friendly, and judging from James’ descriptions, he is the laziest being on the planet.  From time to time he will sit beside James while he is playing or eating, but for the most part, he just sleeps. Sometimes, rather bafflingly, Billy will perch on my head as I go about my day.  Occasionally, James will yell at me because I inadvertently walk through or stand on Billy. An apology is always called for: I have to stand there apologizing to an imaginary monster, feeling – and no doubt looking – like a complete idiot.

The existence of Billy is a testament to James’ active imagination, and also to his veryu sound verbal skills.  This kid is so good at putting his mental pictures into words that I can almost picture Billy perched on the couch next to James watching him eat his spaghetti. James can talk.  James does talk.  Once James gets going you cannot get him to stop.  His thoughts and stories just run out his mouth – very coherently, but sometimes to the point of exhausting his audience, who has to keep track of increasingly complicated storylines.

James and his dad are in a dead heat for the title of “Talker of the family”. I tend to be somewhat quieter, and George doesn’t really talk at all unless he has to.  This is not unusual for a child with autism, but it is something that we are on a permanent quest to change. In today’s world, people need the ability to talk – or at least, to communicate. George has become remarkably self-sufficient in many ways: he will go to all kinds of lengths to do something himself in order to avoid asking for it.

It is easy to attribute this speech aversion to autism, but that does not really answer the question of why. Sure, George doesn’t talk because of his autism, but why is it that auties have this challenge?  In the beginning the answer seemed simple: lack of vocabulary. By the age of three, George only had about thirty words – ten or so of which he was using in their correct contexts, and never more than one word at a time.  Almost four years later, the vocabulary has been increasing exponentially.  George can label just about everything he sees, and he can correctly identify a number of verbs, adjectives, and emotions. He is able to string together simple sentences now. He uses his alphabetic fridge magnets to construct elaborate, grammatically correct sentences that we have yet to hear spoken. So the vocabulary, grammar, and sentence structure are there.  The comprehension is there too, since George will respond appropriately to most things that are said to him.

Another possibility that was presented to us is that auties frequently have a problem with motor planning. What this means is that a kid might have the physical strength and ability to, say, throw a ball, but if he has never thrown a ball before, he will have trouble figuring out what steps he needs to follow in order for the ball to become airborne. There are a lot of fine motor activities involved in speech, and the theory is that auties just cannot figure out how to translate the thoughts into vocalized sound. George, however, can read. He reads out loud from all kinds of materials. He produces the words and they sound correct. Motor planning is clearly not the issue here.

All we’re left with, then, is the simple fact that George does not see the point of talking. Speech serves a purely functional purpose for him. He uses it to express a want or a need. He will say that he would like milk, that he wants to go and play in the back yard, or that he would like a hug. He will answer questions. But apart from one or two rare occasions, he will not use speech to initiate a purely social interaction. He will not say things like “I love you” unless it is said to him first.

We are starting to see some promising signs, though. A couple of weeks ago, he asked me, completely off his own bat, if I was OK. When his brother accidentally spilled a cup of milk, George reacted with a genuinely spontaneous “Whooooooops!” While he still uses speech mostly to request things, he is at least starting to request things of a more social nature.  He will say, “Let’s run!” to indicate that he wants to play a chasing game, or “Horsey!” to indicate that he wants to jump on my back, ride around on me, and pretty much cripple me for the next four days.

I suspect that George will never be much of a talker.  I think he will always be quiet and shy – and that’s OK – he has to be true to who he is and the rest of us have to respect that.  But little by little, we are seeing him emerge for brief moments into our world, and he is allowing us little glimpses into his.

Filed Under: autism, Children, Communication, Speech Tagged With: , , , ,