Who is Her Teacher There?

Wylie experienced kindergarten in a special day class taught by Miss Dana. She was another gifted Speech and Language therapist that would make such a difference in Wylie’s life. Educational services for children like Wylie were initially provided by the county in our area; therefore, this particular class had children with various diagnoses ranging from high functioning autism spectrum disorders to Downs Syndrome, to other physically limiting cases. One of the highlights of that year was the class play. It was a classic retelling of “The Three Little Pigs”. Wylie was cast as the Big Bad Wolf.

The costumes were adorable and included color-dyed t-shirts with the name of the character stamped on them (Wylie’s was brown with the letters “w-o-l-f” in black) and little ears glued to headbands. A program was distributed with the featured actors and everyone’s photo and credits. Picture this: a dramatic play starring kids who, for the most part, don’t maintain eye contact nor speak clearly and are given to outburst, tantrums, or emotional come-aparts. As I think of it, that sounds just about right for Hollywood! The props were excellent: card board boxes big enough for the “pigs” to hide in painted to resemble straw, sticks, and bricks. The curtain was two sheets painted with whimsical designs. What a delight this experience was for us and for Wylie. He nailed his performance, “Little Pig, Little Pig, let me in!” and then, “Then I’ll huff and I’ll puff...” never before were the lines uttered with such precision and character. It was a milestone for Wylie and the other children.

One of the other children in this class had struggled with a weakened heart most of her life. Although I don’t know her exact diagnosis, the heart problem had caused her other difficulties and she obviously could not learn in a traditional environment. Her name was Hayleigh. Over Christmas break, Hayleigh was to have an operation (not the first) and the children were aware she might miss a bit of school. Tragically, she would not return. Her body was not strong enough to survive the surgery. Everyone was struck with grief. The teachers thoughtfully sent a letter home so we could prepare our child for Hayliegh’s noticeable absence once they returned to class. I considered the subject carefully before approaching Wylie.

In our family, we believe children go to heaven when they die and have taught our own kids that Jesus loves the little children…just like the song. I decided to be pragmatic when I began the conversation with Wylie.

“Wylie, you know Hayleigh, your friend from school” I said as gently as I could.

“Yeah”.

“She won’t be coming to school anymore” I explained.

Wylie asked “Is she staying home?”

I said “No”.

Wylie asked “Where is she going to school then?”

I said “In heaven.”

Without missing a beat Wylie says

“Oh, who is her teacher there?”

This opened the door for a thoughtful conversation about Hayleigh’s “change of school”. I could tell Wylie was a bit sad she was no longer going to be in his class, however the full realization of heaven and what happens to us when we die was not on his radar…yet. It was (and is) a subject he would come back to in the future. This was one of many examples of Wylie’s literal thinking and speaking.

Though these children live in their private imaginary worlds most of the day, they sometimes refuse to enter yours. This makes irony and joke-telling relatively useless and can lead to situations where typical parent-child roles are reversed. For example, that same holiday season after the “Three Little Pigs”, our neighbors built an elaborate display of Santa and his reindeer in their front yard complete with a stuffed Santa and Mrs. Claus riding shot gun in the sleigh. One morning, pulling out of our drive, I observed Mrs. Claus was missing. I commented on her absence and wondered aloud if she was up at the north pole helping Santa with the toys. Wylie stopped smoking long enough to clue-me-in: “Mom-Mom, they are just plush toys”. After a pause and quick glance in the rearview mirror at McKenna, the car erupted in laughter. We often find ourselves as a family entertained by Wylie’s wit, quips and questions. It is one of the delightful zigzags of the Asperger mind.

Goldfish Galore

This just in:

Wylie--after carefully smelling and chewing gingerly and inspecting the expiration date--ate goldfish out of the paper container. Not the big box. This is headline-worthy news. Definitely a zag.....

Autism and the Pentagon

My way cool husband alerted me to this piece in today's Washington Times: http://www.washingtontimes.com/news/2008/jul/02/the-pentagon-and-autism/

It gives voice to the scope of autism and explains what one branch of the government is attempting to do for families.

It's a Small World After All

ZigZagStraight (the blog) has only been in existence for a week. Although my interests are broad, the topic of Asperger and living with an Asperger child is pretty narrow. Even so, people from 8 different countries have dropped in for a visit since last week. This blows my mind! Now, as an economist, I understand that a page view does not an "addicted reader" make. However, it does underscore the idea that the world is a much smaller place thanks to virtual space.

Many of my friends and most of my family are not "into" online community like I am. Quite frankly, I'm addicted to http://www.twitter.com/ and consider a daily reading of http://www.tonymorganlive.com/ essential. But, it's a healthy addiction (if there is such a thing!) The power of dialogue/connection/community is virtually unlimited and could be radically transforming in the neighborhoods, cities, states, and the countries where we live.

Maybe what I love most is this: our kids only know this small world. To them, an answer to an interesting question is a google search away. Their minds are not limited by the distance between them and the closest library. There is a downside to all of this, I know. But, I think the positives outweigh the negatives.

"There's so much that we share that it's time we're aware...it's a small world afterall".....

Would You Could You...In a Book?

So, I'm curious about you readers...(I know there are at least a dozen or so of you now)....would you/could you read more of "ZigZagStraight" in a book? There's enough writing for a book and I'd like to publish the stories, but am honestly wanting your opinion. Would you prefer a book-format or is the blog doing it for you?

Awaiting your opinions....

Making Sense

I don’t know at what point we stopped cracking the video or digital camera out to record our kids’ events, holidays, and parties. It was a long time ago. I think we got to the point where we were so stressed about capturing the moments on film we were not enjoying the actual moments! So, the camera sits in the closet. We have a few “videos” (or are they “digitals”?) of the kids before we moved away from Charleston, SC. These are precious: two little toddlers in our gorgeous, lush backyard, McKenna drawing her first (of many famous) pictures on her Magna Doodle, my grandfather when he visited.

I remember watching some random footage of the kids outside on a spring day. We had reviewed these images before for the “ah” effect. You know, “Ah, they are all so cute”. On this occasion I felt I uncovered a mystery. I asked Tim to rewind a certain spot: Wylie’s Asperger-behaviors were all over these spring images. Like a forensic scientist traces clues backwards from a crime scene or an event, I examined these old scenes with new eyes and saw a world of evidence supporting Wylie’s Asperger-ness.

For your consideration, ladies and gentlemen, I present Exhibit A: we were all outdoors and the kids are running and rambling back and forth in front of the camera. Wylie moves rhythmically (even as a two year old) in a pattern that is sometimes still evident. He scadoos, smokes his fingers, hums, and remains detached even when the other two children are involved in daddy’s videography. More poignant is the footage of their 2 year birthday party.

May I present, Exhibit B: there were six to eight adults and as many children—all familiar. Yet, during this selection, Tim is carrying Wylie on his shoulders for a portion of it and you can tell he (Wylie) is completely out of sorts. He puts his head down behind Tim’s avoids eye contact, cries and whimpers. Tim tries to have him taste some ice cream and he strongly resists the spoon and its chilly substance. You even hear me in the background explaining away his behavior to the other parents. What was obvious now to me (as the forensic-mommy-scientist), is that Wylie’s sensory perception was maxed. In the pictures, he is using every coping mechanism he has and it’s not working. Too many people, too many noises, too many voices. He crumbles and I end up taking him upstairs to put him to bed with one of his beloved blankets while Campbell enjoys the rest of the party.

Watching these scenes is difficult; the clues were everywhere. We just did not see them. Now, they made sense for the first time. And, the sense they made saddened me. My son was not experiencing “normal” events in a normal way. His brain did not allow him to do so. There we all were almost forcing him to enjoy things he found terrifying--or at least incredibly uncomfortable. It would not be the last time my eyes would fill with tears at the thought of how much he went through before we began to understand him. Reviewing the evidence made me sad; but, it also ushered in a new compassion for him and for all kinds of different people. I began to see evidence all the time and became quite accustomed to viewing the world through an Asperger lens. And, just like Alice in Wonderland, I found looking through the glass irresistible.

Making Sense

I don’t know at what point we stopped cracking the video or digital camera out to record our kids’ events, holidays, and parties. It was a long time ago. I think we got to the point where we were so stressed about capturing the moments on film we were not enjoying the actual moments! So, the camera sits in the closet. We have a few “videos” (or are they “digitals”?) of the kids before we moved away from Charleston, SC. These are precious: two little toddlers in our gorgeous, lush backyard, McKenna drawing her first (of many famous) pictures on her Magna Doodle, my grandfather when he visited.

I remember watching some random footage of the kids outside on a spring day. We had reviewed these images before for the “ah” effect. You know, “Ah, they are all so cute”. On this occasion I felt I uncovered a mystery. I asked Tim to rewind a certain spot: Wylie’s Asperger-behaviors were all over these spring images. Like a forensic scientist traces clues backwards from a crime scene or an event, I examined these old scenes with new eyes and saw a world of evidence supporting Wylie’s Asperger-ness.

For your consideration, ladies and gentlemen, I present Exhibit A: we were all outdoors and the kids are running and rambling back and forth in front of the camera. Wylie moves rhythmically (even as a two year old) in a pattern that is sometimes still evident. He scadoos, smokes his fingers, hums, and remains detached even when the other two children are involved in daddy’s videography. More poignant is the footage of their 2 year birthday party.

May I present, Exhibit B: there were six to eight adults and as many children—all familiar. Yet, during this selection, Tim is carrying Wylie on his shoulders for a portion of it and you can tell he (Wylie) is completely out of sorts. He puts his head down behind Tim’s avoids eye contact, cries and whimpers. Tim tries to have him taste some ice cream and he strongly resists the spoon and its chilly substance. You even hear me in the background explaining away his behavior to the other parents. What was obvious now to me (as the forensic-mommy-scientist), is that Wylie’s sensory perception was maxed. In the pictures, he is using every coping mechanism he has and it’s not working. Too many people, too many noises, too many voices. He crumbles and I end up taking him upstairs to put him to bed with one of his beloved blankets while Campbell enjoys the rest of the party.

Watching these scenes is difficult; the clues were everywhere. We just did not see them. Now, they made sense for the first time. And, the sense they made saddened me. My son was not experiencing “normal” events in a normal way. His brain did not allow him to do so. There we all were almost forcing him to enjoy things he found terrifying--or at least incredibly uncomfortable. It would not be the last time my eyes would fill with tears at the thought of how much he went through before we began to understand him. Reviewing the evidence made me sad; but, it also ushered in a new compassion for him and for all kinds of different people. I began to see evidence all the time and became quite accustomed to viewing the world through an Asperger lens. And, just like Alice in Wonderland, I found looking through the glass irresistible.