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Leaps Of Kindness

December 28, 2013 By

leappad

Yesterday, I wrote about the difficulty of buying toys for kids with autism. As hard as it is, from time to time we are lucky enough to find something that my son George really loves. A few years ago he was into the Brown Bear, Brown Bear books, which were successfully used as his transition object for some time. Mr. Potato Head has been an essential part of my family’s life for about seven years now. George never gets tired of them, as his staggering collection will testify.

A year ago, we stumbled upon something else that would bring George a lot of joy, when we bought each of the boys a Leap Pad for Christmas. This child, who usually takes a bit of time to warm up to a new toy, pounced on the Leap Pad immediately. He spent countless hours watching the videos and playing the games, and even making a few simple videos himself. We started to see improvements in George’s speech and cognitive skills as a result of the games he was playing.

Then, about a month ago, catastrophe struck. Somehow, this device which had survived almost a year of an autistic child playing with it, got its screen cracked. This was an absolute disaster. George’s Leap Pad breaking was utterly traumatic for him. He was bereft, and could not understand why his beloved toy was no longer usable.

The next month was – rough. George’s younger brother James was remarkably kind in sharing his Leap Pad as best he could, but there were still a number of meltdowns and many, many tears. And in my current state of unemployment, I couldn’t afford to buy another Leap Pad. The situation seemed hopeless for poor George.

But sometimes, when situations seem hopeless, little miracles can happen. Maybe you win money in the lottery or find a $100 bill lying in the street. Or maybe – as was the case with us – you speak to someone who cares.

We called Leapfrog, the company that makes and distributes Leap Pads, and we explained to the customer service representative what had happened. I wasn’t really sure what we were hoping for – perhaps a discount on a new Leap Pad, or the option to send the broken one somewhere to be repaired.

What we got was so much better. Although the cracked screen is not covered by the warranty of the product, and although Leapfrog was under absolutely no obligation to do anything, the customer service lady told us that she would have a one-time replacement sent to us. I had to follow an elaborate set of instructions that were emailed to me, and then the new Leap Pad would be on its way.

Yesterday, we came home from a shopping trip to find a parcel on our front steps. I looked at the return address on the box, and seeing that it had come  from Leapfrog, I handed the box to George to open. There are no words to describe the look of absolute joy on his face when he saw what it was.

Thank you, Leapfrog. And thank you, Customer Service Lady. The fact that you cared has brought many smiles to the face of a child with autism. And that is the best possible Christmas gift for a parent.

This is an original post by Kirsten Doyle. Photo credit to the author.

 

Filed Under: autism, Broken Toys, Customer Service, Kindness, Leap Pad Tagged With: , , , , ,
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Autism: Looking Ahead To The Teenage Years

July 14, 2013 By

2013-07-06 10.23.30

A few short weeks from now, my older son George will be turning 10. This is a pretty big milestone for any parent. Not only will it launch George into double digits, it will mean that I have navigated the mysterious world of parenting for a full decade. Not just any old parenting, either – special needs parenting.

In his ten years, George has accomplished some amazing things in the face of his autism. I could go on all day about progress and milestones and potential, and I really am proud of his determination. Whether or not he is aware of his disability is debatable, but either way, he works really hard for every single victory. The smallest accomplishments that would go unnoticed in most families are a giant cause for celebration in ours.

The harsh reality, though, is that George still has some challenges, the most obvious of which is his lack of speech. He can talk – he has the physical ability and the vocabulary – but he doesn’t. His speech is mostly limited to requests, although he does occasionally make mind-blowing (to me) statements, like last week when he showed me his “screaming green angry gorilla”, which was actually a Hulk toy.

We cannot have conversations with George. We cannot say, “So, what did you do at school today?” and expect him to answer. His standard answer to most questions that are posed to him is “yes”, even when that doesn’t fit the question. Of great concern to me, if something bad was happening to him, like bullying or molestation, he wouldn’t  be able to tell me about it.

That’s just the speech side of it. Social communication is an issue big enough for its own blog post. And as much as George has made phenomenal cognitive gains, in many areas he still functions well below the level of typical kids his age.

And so, with his 10th birthday approaching, my husband and I are preparing ourselves for the fact that he may not be as high-functioning a teenager as we have been hoping. When we got his report card a couple of weeks ago – the one that says he is “transferred” to Grade 5, unlike other kids who are “promoted” – I had a moment of pure terror at the realization that 8 years from now, he will be nominally eligible to graduate high school. It wasn’t the normal “Oh, how fast time passes” kind of terror. It was fear for George’s future.

Until now, my husband and I have been swirling these thoughts around in our heads, but today we spoke about them for the first time. We talked about preparations that need to be made and programs that need to be sought out. We talked about what the reality of life is likely to be when George reaches teenagerdom, just three years from now. He will not have a peer support system like most kids, and he will always be quite obviously “different”. He will go through the angst of adolescence without the ability to express himself verbally, and if we don’t keep a close watch on him, he might be the target of bullying. Other teens – or, Lord help us, some adults – might take advantage of his natural sweetness and trusting nature.

Talking about it makes it so much more real and so much scarier. It brings tears close to the surface and makes me feel very emotional. It makes me wonder if I, as George’s mother, have been doing enough for him. Is there something I have overlooked, some possibility that I have not explored, some avenue of opportunity that I have allowed to pass by?

Of course, I could be wrong. We could see George’s speech and social communication skills explode one day. I am not giving up, and I am not losing hope. I am simply being realistic so I can equip myself to provide the kind of support George will need as he navigates his way from here to adulthood.

Today, when I was out for a walk with my family, I kept looking over at George with an aching heart. He is my beautiful boy, with the most tender of souls, and I just want for him to be OK.

(This is an original post by Kirsten Doyle. Photo credit to the author.)

Filed Under: Adolescence, autism, Childhood, Future, Teenage Years 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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Guest Post: Animals And Autism

May 15, 2012 By

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

Guest post exchange day was yesterday, but really, with so many phenomenal bloggers in the same challenge, how could I pick just one? Today’s guest blogger, Sarah, focuses on an area very close to my heart: animals, their relationships with people, and how they can facilitate healing. She just finished her first year of the Doctorate of Physical Therapy program at LSU-New Orleans. She is  passionate about animals and children and plans on integrating animals into her physical therapy practice after she graduates.

As a lifelong animal lover myself, I am drawn to Sarah’s blog like a magnet, and am thrilled that she agreed to write for me. Today, she shares with us how animals and children with autism can have a very special bond.

When people envision their perfect life with 2.5 kids and a white picket fence they also usually include a pet in the picture. After parents hear their child given the diagnosis of “autism”, often the idea of having a pet is questioned. In general, animals definitely provide many benefits to their owners, but as Kirsten recently reminded me “If you’ve met one person with autism, you’ve met one person with autism.” So what works for one child or family may not work with another.

The cool thing is that there have been several groups that have seen a lot of positive effects in children with autism after interacting with animals.

Max is one of Austin Dog Alliance’s “special dogs” available for adoption.

Austin Dog Alliance has group social skill classes where they use dogs to teach children with autism and Asperger’s. Some of the topics touched on in these classes include verbal and motor skills, interacting with and empathy for others, and appropriate behaviors both in and out of the classroom. These same skills can be achieved with a pet at home. The child can practice speaking to the dog and learn to recognize and understand the animal’s non-verbal cues. In doing this they are maintaining eye contact, which some people with autism struggle with. They can also learn to care about and for another living creature. This lesson can then translate to their interactions with other people.

Horse Boy Foundation brings kids in contact with horses to help them through what they call a “simple 6 stage process”. They’ve found that allowing kids to lie down on a horse’s back cuts down on their stimming (a repetitive movement that self stimulates the senses). Interacting with the horse is good overall sensory work while the actual horseback riding can be soothing because of the rocking motion. Again, giving commands allows the child to work on verbalization. I know that for most people owning a horse is out of the question, but there are several places that have horseback riding lessons where your child could get some of the same benefits.

http://www.youtube.com/watch?v=V11E-N2pK_o (it’s a youtube video about the Horse Boy Method)

Lois Brady found that a potbellied pig named Buttercup works wonders with the children. She’s a speech language pathologist, so of course her focus is getting the children to talk. But she has found that her pig is great for sensory work because he has different textures in different places on his body. The best thing about him is that people don’t have preconceived fears about pigs, like they might with a dog or even a horse.

(Photo from: http://www.prweb.com/releases/animal_assisted_therapy/continuing_education/prweb9261001.htm)

Buttercup is a great example that really any kind of pet can be used to help with things like speaking, motor skills, empathy and self-confidence. Some people prefer to have an animal specifically trained as a service animal and that has its benefits as well. You can read my post about autism service dogs to learn more about them. The most important thing is to decide what animal (if any) will be a good fit for your family.

Check out more great posts from Sarah Allen on her blog, Animals Help Heal. You can follow her on Twitter @AnimalsHelpHeal.

Filed Under: 2012 Wordcount Blogathon, Animals, autism, Guest Posts, Healing, Special Needs, Uncategorized Tagged With: , , , , , ,
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The T-Word: A Scary Word For Autism Parents

April 13, 2011 By

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)

Filed Under: autism, IBI, School, School Stream, Therapy, Transition Tagged With: , , , , , , , , , , , , , ,
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The T-Word: A Scary Word For Autism Parents

April 13, 2011 By

This morning heralded the beginning of a new phase in my life as a special needs parent. We met for the first time with George’s transition planning team to sign the paperwork that kicks off the process of transitioning him to full-time school.

Any parent of a child with autism will tell you the same thing: that the word “transition” is one of the scariest words in the English language.

“Transition” means that the routines that pretty much hold the world together for a child with autism are about to be turned upside down and inside out.

“Transition” means that there are likely to be meltdowns, that for a period of time my child’s anxiety will be mirrored in his eyes in a way that will make me want to weep, and that the entire family will be without sleep as George makes the adjustment to his new reality.

Despite the fact that this is a process that makes me fraught with anxiety, it is a positive thing. When he started IBI therapy two and a half years ago, George did not have a lot of skills. He had virtually no vocabulary, no self-help skills, he couldn’t follow directions, he couldn’t interact, his emotional regulation skills were nowhere, and he had all kinds of fears that made his life very difficult. There was always a spark in him, though; a light in his eyes that made people sit up and take notice.

After two years of full-time therapy, the progress in this child was off the charts. It would be a stretch to describe him as fully verbal, but he was making requests using full sentences, he was starting to interact in a limited way, he was no longer afraid of the dark, he was starting to verbally express emotion, he was able to follow instructions with multiple steps, and in a giant cognitive leap, he had started to display his quirky sense of humour (deliberately being funny for the purpose of making other people laugh is huge. HUGE!)

And so, six months ago, the decision was made to cut his therapy in half and graduate him to the next program up. Instead of traditional IBI therapy, which is intensive one-on-one programming, he is now in a School Stream program, which is conducted in groups of five. It is a simulated classroom environment, designed to help children with autism learn the kinds of skills needed in school. There is  teacher who leads school-type activities, and each child has his or her individual support person to help with prompting and reinforcing.  The children in this program attend School Stream for half of the day, and actual school for the other half.

It has proven to be a very effective program for George. It has helped improve his social communication and interaction skills – areas that remain difficult for him, that traditional IBI therapy is not designed to address.

And now, effective from September of this year, George is being deemed fit for full-time school. This is a testament to the progress he has made, both in IBI and in School Stream. His teacher at school, who has had him half-days for the last six months, is excited to take him on full-time, and he will be with her for at least two years. At our last meeting with her, she had glowing things to say about George. He still struggles intensely with social communication, and he is not nearly verbal enough to hold his own in a conversation, but academically he is flying. He has developed the skills to function, and function reasonably well, in a classroom setting, even if it is a modified classroom designed for children like George.

That George is ready for this transition is a positive thing indeed. It is something that makes me so proud of him. He has had to work so incredibly hard to get to this point.

But still.

The process of transition is not going to be easy, which is why the planning starts six months before the transition takes place, and does not end until six months after the transition has happened. This morning’s meeting with the transition planning team was the first of what will be many. From what we’ve been able to tell, there will be good supports in place for George and for us over the next year, in order to ensure as smooth a transition as possible.

I cannot help being anxious about it, though. George’s departure from the therapy centre will mean the removal of a layer of support that we have had for the last three years, and although George might be ready for it, I don’t know if I am.

I might just have a harder time with this transition than George will…

(Photo credit: http://www.flickr.com/photos/misskprimary/1038145678)

Filed Under: autism, IBI, School, School Stream, Therapy, Transition Tagged With: , , , , , , , , , , , , , ,
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Spectrum Musings

March 10, 2011 By

Sometimes I wonder if George got his autism from me.

I don’t say that with any sense of guilt. If he did get it from me, I don’t feel bad about it. After all, I can hardly be held responsible for my genetic composition. It’s not as if I had any control over what DNA I landed up with.

I wonder about this question, though, from a purely scientific, curious point of view. Because although I’ve never been screened for it, it would not surprise me one bit if I were to learn that I am on the autism spectrum.

When I was a baby, I cried. I know, that sounds like a ridiculous statement. Of course I cried. That’s what babies do. In my case, however, I couldn’t be soothed. My poor Mom would change me, feed me, rock me, try to get me to sleep. No matter what she did, I cried relentlessly, for hours at a time, for no apparent medical reason. Mom surmised that maybe I was reacting to a feeling of  rejection after my birth mother had given me up for adoption.

Adoptions in those days were closed, and no information was exchanged between the birth mother and the adoptive parents. My Mom knew nothing about where I had come from. She told me in later years that she just assumed there was some factor she did not know about that was causing all this angst in me.

When I was a very young child, it became apparent that I had notable developmental delays. I was a very late talker, and did not show signs of functional speech until the age of five. It took me a lot longer than my peers to learn how to read (although it must be said, once I did learn, it was like a floodgate had opened, and I read everything I could get my hands on).

At the same time, I had issues with motor skills. I was uncoordinated, and stubbed my toes a lot. I did not have the strength to hold a pen, and I didn’t even know, until some species of therapist did some testing on me, that I was left-handed. My hand-eye coordinatin was nowhere and I had to be taught it while other kids seemed to just pick up on it naturally.

There are certain sensory things that I find hard to handle. Flickering lights (although, to be fair, that would probably drive most people batty). The textures of certain foods. Clothing labels have the ability to make me want to chew off my own arm in frustration. When Gerard has the TV on too loud, I actually want to scream. Hearing too many sounds from too many different sources (TV, dishwasher, telephone, whatever) invokes a feeling of intense anxiety.

When I’m stressed I rock back and forth. I find it calming, I find that it can sometimes stop the stressful feeling from escalating.

One of the most telling factors in my musings, however, is my social awkwardness. I have had this problem throughout my life. As I get more comfortable with specific people, my social ineptness becomes less apparent, and I work hard to hide overcome it in my day-to-day life.

Social gatherings can be excruciating for me. High school was just torture – I so badly wanted to fit in, but I couldn’t be social enough and my attempts came across as awkward and embarrassing. The only person at school who I felt completely comfortable with was my friend Jenny, who remains my best friend to this day.

There are certain social situations that make me feel even more uncomfortable: conflict, meeting new people, situations where I unexpectedly have to make small talk, anything to do with telephones.

Gerard has remarked several times that I seem to have a special connection with George. When he is having a meltdown, I seem to have the ability to just know what to do, to know what he needs. It can take a long time to calm him down, but in most cases, I can just know – without explaining how I know – how he needs to be spoken to, held, comforted, soothed.

And I wonder why this is.

Is it a normal motherly instinct?

Or do I, in some ways, inhabit the same world George does?

(Photo credit: http://www.flickr.com/photos/53416677@N08/4972850923)

Filed Under: autism, Genetics 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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Mister Fidget

October 12, 2010 By

George has been getting into everything lately.  And I mean everything.  He opens and closes doors, peers into the refrigerator, moves the lever on the dishwasher door back and forth, and sends the blender into a fruitless frenzy of activity. He gets into cupboards and removes things.  He finds stuff that can be poured, and he pours it.  He turns taps on and off. He has succeeded in deprogramming the remote several times. He finds things in squirt bottles and squirts them. He jabs the straw into those little cardboard juice boxes, and then gives an almighty squeeze to see the juice shooting up and hitting the ceiling. The light on the fish tank gets turned on and off so often that the poor fish have probably completely lost any circadian rhythm they had to begin with.

As much as George loves to fidget with things, turn things on and off, open and close things, pour things, he hates it when anyone else does anything. My attempts to cook dinner, for instance, are accompanied by this contant commentary.  Close the fridge. Microwave off. Close the dishwasher. Close the drawer. Close the cupboard. Leave the milk. Tap off. And on and on and on.  While all of this is going on, I’m tripping over a lanky seven-year-old who is darting around the kitchen trying to put things away, close things, and turn things off.

Running the kids’ bath last night was an adventure. James picked out two boats that he wanted to play with in the bath.  He put them in the tub, I started the water running.  I did what I usually do, which is to close the bathroom door and then go off to gather towels and pajamas while the water is running. When I went back into the bathroom a couple of minutes later, the water had been turned off, the tub was empty, and James’ boats were nowhere in sight. James, it must be said, was not at all pleased.

After a brief search, the boats were located in a toy box, and we tried again. This time, James stood guard at the closed bathroom door, like a miniature sentry. Gerard worked hard to distract George, who was repeatedly going, “Tap off! Tap off!” After what felt like seventeen hours but was in reality a couple of minutes, the bathtub was ready, and I turned the tap off.  George was instantly calm.

James was happy. He climbed into the tub and started playing happily with his boats, among the bubbles in the water.  George had kicked up such a fuss that I was not really expecting him to get in. But he ran off to get a few pieces of Lego, which he tossed into the water.  Then he calmly got in, sat down in the water, and played with his Lego.

When compared with a lot of the other stuff I have to deal with on a day-to-day basis, this behaviour is really not that bad. It’s just inconvenient and exhausting to deal with all the time.  There is, however, a giant silver lining to it: when George is engaging in this behaviour, he is a lot more verbal than usual. We are trying to look past the messes and spills, the fact that we have to keep replacing groceries that get poured out, and the general inconvenience of it all, to see the potential opportunities offered by the increased use of words.

Sometimes troublesome behaviour is a predecessor to a giant leap of progress. Even while I complain about the fact that it takes me twice as long as it should to get anything done, I recognize that this could mean exciting times for ourselves, and more importantly, for George.

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Band-Aid solution

August 9, 2010 By

This morning I had one of those little moments with George that I love so much, one of those “Wow” moments that indicate progress. I was engaged in my usual frenetic morning activity – getting myself ready, getting James ready, trying to find time to cram some breakfast into me, trying to keep up with James’ constant chatter and questions about why birds have feathers. George was still in his pyjamas – his morning routine is his Dad’s responsibility – and he was wandering around counting in his sweet little sing-song voice. I noticed him heading towards the stairs, and somewhat absently, I said, “George, where are you going?” George replied, “Upstairs”, and upstairs he went. I continued with whatever I was doing, and it was only about ten minutes later, when I was trying to shoehorn a reluctant James into his socks, that I suddenly thought, “Holy crap! George appropriately answered a ‘Where’ question!”

George’s speech – or the lack thereof – is a source of deep concern to Gerard and myself. We know that he can speak – in other words, he has the physical capacity to do so. We know from the sentences that he constructs out of fridge magnets that he has the vocabulary and the ability to string a decent sentence together.  He simply chooses not to talk. I don’t think he has anything against it, he just doesn’t see the point of it. He doesn’t see speech as a social communication tool, he sees it as a functional tool to be used only when he wants something and is not able to get it himself. This is why, when George answers a question so naturally and spontaneously instead of simply giving me a blank gaze and going on his way, it is a big deal. We are starting to see these little glimpses into a world of language for George, and it never fails to lift our spirits.

We had one of those glimpses about a week ago, when I was in the house doing the never-diminishing pile of laundry (I have come to the conclusion that clothes in laundry baskets actually reproduce) and George was playing in the sprinkler in the back yard. All of a sudden I heard him cry out in what sounded like pain. With James on my heels, I went out to see what was going on, and there he was, sitting on one of the patio chairs clutching his foot.  I asked him what was wrong, and he looked me right in the eye and said, “I need a Band-Aid”.  James, bless his little heart, immediately said, “I’ll get them!” and he hotfooted it into the house. While James was inside, I coaxed George into showing me his big toe, which had a cut on it from a thorn on a weed.

Now, previously, George would have simply freaked out.  The sight of blood, even a little bit of it, scares him a lot, to the point where he can barely function. But this time, he had presence of mind to hold it together for long enough to identify and label exactly what was needed. Once he had communicated it to me, he allowed himself to fall apart a little. He was visibly relieved when James came flying out of the house with the Band-Aids, and once the wound had been covered up, he calmed down completely.

I immediately went through the sequence of events with him. George got hurt. George knew he needed a Band-Aid. George asked for a Band-Aid. George got a Band-Aid, and now George is OK. That simple reinforcement was intended to cement in his mind that when he speaks, things happen that relate directly to what he is saying.

Now, if only that were the case when I try talking to my husband while he is channel-surfing…

Filed Under: autism Tagged With: , , ,
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