$47.25

That's how much money the boys had earned/collected. $40 + of that was in coin. Wylie and Campbell were saving specifically for the Lego Indiana Jones for PS2. They've been reading books and helping with chores to purchase this game. The day has arrived.

Indy and Miriam are somewhere in Egypt trying to evade the bad guys...

Miss Bonnie & The Runaway Bunny

Autism.
Say the word and what do you picture? Dustin Hoffman in “Rainman”? A child unable to speak, moving back and forth, isolated in their own world? You’re not alone. There is more awareness now versus decades past of what autism is and whom it affects, but it is still seems to mystify. I have learned that autism is like a spectrum; it manifests in different ways like light refracted revealing colors of the rainbow. On the “higher functioning” end of the spectrum is Asperger Syndrome, named for a German psychologist, Hans Asperger. This was the particular color that bathed our family the spring of 2003.

I barely had time to finish the details in the play room upstairs before the first home visit of the child psychologist assigned to observe Wylie. We had been in the house about a year and a half; yet, household projects take time and money. Both had run a bit short. The impending visit provided just the sense of urgency required to paint the walls and complete the playroom. I had spoken with Bonnie Karlin on the phone prior to the visit and immediately warmed to her. She had a calm and soothing voice—a nice quality in someone specializing in children. And, she came highly recommended. My mother had been working as an administrative assistant in Student Services for several years. She was familiar with most of the staff in the suite of offices they all
shared. Bonnie was among those. This put me at ease and I remember feeling relaxed the day she came to “play” with Wylie.

Bonnie joined us on the floor; Wylie stayed in my lap at first and avoided direct eye contact, of course, smoking away…but, after a few moments he began to venture out of my lap and engaged with Bonnie. She asked him to tell her a story. She watched while I put a hand puppet on and interacted with him. I let him sound out some words and familiar objects in one of his books. All the while, Bonnie took notes on her paper without looking. (Try it—it’s not easy!) She asked me about Wylie’s normal behavior at home—his eating habits, play times and how he interacted with his siblings. I shared openly about his distaste for certain things (like haircuts!) and how regular noises—the garage door opener, the vaccum, a flushing toilet—would terrify Wylie and he had learned to preemptively cover his ears (which is hard to do while smoking your fingers!)

Eventually, Bonnie had Wylie in her lap listening to a story. He shared blanket blue with her and even extended his arm for her to rub—this was a favorite past time of Wylie’s only a few people were trusted to do it.

The plan was to observe Wylie at home and then in his preschool environment; I was to complete a very detailed questionnaire and we would meet again and put all these disparate pieces together. Before Bonnie left that day, she mentioned that Wylie reminded her a bit of her own daughter. In particular, she shared about her daughter’s favorite book, “The Runaway Bunny”, and that somehow Wylie was a bit like the bunny in the story. I could tell after our visit, Bonnie was exactly the right person to try and figure Wylie out. What a blessing she was. Of all the psychologists that could have been sent, we were sent one who knew precisely the color of the rainbow radiating from the playroom. And, she’d have known it even if I hadn’t gotten the walls done.

The preschool visit was a horse of a different color. Bonnie called us afterward and asked if she could make a second “in home” visit. She just had too much to reconcile. To her, Wylie appeared a completely different child at the preschool. It was there that she first experienced the folded-up-like-a-rock Wylie, the non-cooperative when asked to switch activities Wylie, the extremely detached from the reality of the class room Wylie. This disturbed her. Why was he so different? There were moments she noted where the Runaway Bunny emerged: during sing-a-long time when Wylie was allowed and encouraged to move to the music, and when he was on the playground. But, overall, the pieces from the preschool seemed to belong to a completely different puzzle then the pieces she had gathered in our own home.

After the second home visit and the scoring of my questionnaire, Bonnie came to a conclusion. Wylie demonstrated signs of Sensory Integration Dysfunction and tested as borderline “at risk” for Asperger Syndrome. (The subtle nuances of the diagnosis are important and for those interested, a lengthy note is appended). Bonnie recommended a special day class for Wylie and a referral to an Occupational Therapist for further evaluation of his motor skills. We spoke at length on several more occasions about our next step. Bonnie was certain Wylie would best learn in an alternative environment with smaller class size and intensive language therapy. In addition, she encouraged us to use stories called Power Cards to help Wylie overcome his fear of haircuts, the dentist, etc.

It was a lot to process. For the first time in a very, very long time, I wanted to drop like a rock.

Miss Lavonne

If you were born in the sixties like I was, we had Mr. Rogers and Sesame Street. Some of you might even remember Hobo Kelly! My kids had Blues Clues. Now, I’m referring to vintage Blues Clues with Steve--not the new guy, (is it Joe)? The original Blues Clues--what a great show! It had good music, beautiful visuals and a little puppy named Blue that you could almost understand when she barked. Our home had many similarities to Steve’s: good music (four-fifths of the family is musical, sorry Tim!), beautiful colors on the walls and furniture throughout, and a little boy named Wylie that you could almost understand when he spoke. It was no surprise that Wylie loved Blue; he loved the show above all others. The puppy always made him smile and laugh.

There was a segment in each show where Blue and Steve would magically “sca-doo” into a book or a refrigerator or a painting. This involved them singing a little jingle and moving their arms and legs to get ready to jump, or sca-doo: “Blue Sca-doo we can, too!” and in they would jump. Wylie loved to sca-doo. He would do it repeatedly even as a four year old preschooler. This was so cute and precious to me. However, it almost proved the undoing of Miss Lavonne.

“Miss Lavonne” was Wylie’s first Speech therapist. She was undoubtedly married and should have been addressed as “Mrs.” with her last name, but Wylie received therapy at the preschool where all the teachers were called “Miss”. Lavonne was no exception. Miss Lavonne worked tirelessly with Wylie. She was very dedicated and brilliantly creative. She had to be. Only those familiar with the craft or benefactors of its service can truly appreciate what these therapists do in one single session. (Think one part herding cats and one part Professor Higgins with Eliza Doolittle in “My Fair Lady” and you are beginning to get the gist).

We have stacks of homemade books with clue-stuck pictures of nouns, verbs, colors, numbers and letters. We have sheets and sheets of articulation practice. We have boxed sets of cards depicting the range of human activities and emotions for identification. I would like to say I practiced with Wylie as hard as Miss Lavonne worked with him, but that would not be true. To get any preschooler to produce what Wylie had would be commendable. To do so while that preschooler is constantly “sca-dooing”, perseverating about Mary Poppins and Thunderbirds, all the while chain-smoking his middle fingers is nothing short of a miracle! She worked hard. Granted, she only saw Wylie once a week for forty-five minutes or so, but they were intense, focused minutes. And, because she spent a year with him and I valued her inputs, I trusted her completely when she said “I think Wylie’s needs go beyond speech. I think he should be evaluated to see if he qualifies for more services.” See, during this time, I had been doing my own homework. I had been researching Wylie’s “issues” and “behaviors” independently. I knew there was a word that described my child and no one up to that point had said it.

Until Miss Lavonne did.

Guitar Hero: The Great Equalizer

Watching Wylie play Guitar Hero right now.

Three reasons I love this game:

1) All three of my chidren now recognize songs that are a part of popular culture and truly are classics (i.e., Barracuda)

2) Everyone can be told at least once in their lifetime "dude: you were shredding that riff"

3) It is a great musician/geek/nerd/cool equalizer. I've seen my musician friends totally flail at it, and I've seen my kids totally rock.

Hair Cuts: The Long and Short of It

Have you ever wondered why little boys who are “special” tend to have longer hair? I never did until I found myself with a little boy who was increasingly special. It’s easy. They hate haircuts.

In the beginning, both of my boys hated them. Well, they hated their first one. Come to think of it, I did, too! It was a memory we’d all like to forget. After moving back to southern California, we stayed with my parents for a few months until our house was finished and we were able to move in. It was great—in sort of a Walton family kind-of-way. The boys were almost three and had not really had their hair cut so it was at that cute, wispy, longish stage. Tim and I agreed it was time. My father said he could do it. He had a pair of electric clippers. All you had to do was put on the right number comb and buzz away.

They say a greased pig is hard to handle. Well, try a three year old forty-pounder with a firm resolve not to cooperate with an electric trimmer! It took both of the men I love and admire most—all four hundred pounds combined of them—to give my three year old boys their haircuts. One held the legs and arms and the other one buzzed. I have never before, nor have I since, heard such screaming and crying! It made me cry. It was awful. Everyone was absolutely exhausted afterwards. Campbell was pathetic after his bath that night with a shorn head. “Mom-mom, where my hair go?” He kept rubbing his head and feeling for the one curly lock he used to rub on the right side of his head when he was sleepy. Wylie regained his composure after a long nap with blanket blue, but he never said a word about that haircut. It was the next one he protested.

Despite the drama of the first experience, I was determined to keep their hair short. It looked so handsome and was easier to care for. So, once we moved into our new home, I purchased a set of clippers for myself. Optimistically, I set up barber shop in the kitchen and got out my towels. Gathering the boys, I thought it would be easy as pie. Wylie took one look at those clippers and immediately began to scream and run away. Campbell was too slow. I nabbed him.

Chasing Wylie down, I thought to myself “This is just a test of wills and I’m going to win”. I was not prepared for how vehemently Wylie would resist. Without the assistance of a two hundred pound male, I was left with just my own arms and legs to subdue Wylie and hold him still enough to cut his hair! At the time, this was just one more “adaptation” I thought I was making to baby “B”’s behavior. When the resistance to the haircuts resulted in screaming and crying to the point of vomiting, I truly began to ponder what life was like inside Wylie’s head. Was it the sound of the clippers? Did the cutting action really hurt him physically? Was it just a quirk? As I kept wondering, his hair grew longer, and longer.

What Was That?

My husband flies military planes. He is a great pilot and he loves what he does. In almost nineteen years of marriage we have lived in five different communities. Active duty military members and their families know the drill: show up, unpack, meet the neighbors, find the schools, find the stores, find the doctors. When we arrived back in southern California-- home for both of us--it was not as daunting as usual to get the drill done. McKenna was six years old and in first grade and the boys, now almost four, had enjoyed a two day a week Mom’s Day Out program in South Carolina so I enrolled them in a preschool associated with McKenna’s school in our little town. The initial doctor visits for immunizations and physicals for school were routine as well. Wrapping up the boys’ examinations, the new pediatrician said very little. What little he did say would ultimately change our lives.

“I can’t understand them” came the sentence out of the doctor’s mouth. “What was that?” I reply. “Their speech. I think they should both be evaluated for speech and hearing. At this age, I should be able to understand them”. And, with that our adventure began.
Both boys passed hearing exams easily. Enter the world of Speech and Language Pathologists. What a remarkable, intelligent, special group of professionals these folks are. I’ve not met one (and I’ve met a lot) who did not impress me. The pathologists were responsible for screening the boys to determine if they qualified for “services”. These screening appointments were conducted in an office space rented by the Student Services division of County Schools. These spaces are ordinary and look like any conference room until a speech pathologist comes in with their box of tricks; pictures, toys, noise-makers, charts, and a potpourri of nursery discards come out of the box and transform the office space into a child’s dream play date. Except the play has a purpose and the pathologist makes the rules. Campbell and Wylie were to be screened at separate appointments (of course to be fair).

Wylie was first.


It was on the floor in a leased office watching a speech pathologist trying to engage my son with her box of tricks that I first began to process: this isn’t normal. What my husband and I had done for four years to relate to Wylie was not normal. Seeing him through the pathologists’ eyes—or more accurately—“hearing” him through her ears was a moment I will never forget.
Finger-puffing, dropped-like-a- rock-Wylie resisting the well-trained and very patient therapist…it was almost too uncomfortable for me to watch without intervening. She would try to direct his attention to her chart. He would hum and play with his toy. She would try to hold Wylie’s gaze. He would speak without ever looking into her eyes. Occasionally she would hit upon an activity that he would participate in. Flash cards of known objects were relatively easy. “Duck”, “boat”, “train” came the responses. But, when the flash cards began to depict faces displaying human emotions…nothing. Wylie would go back to the last known thing he got “right” and repeat it. Additionally, Wylie would say pet phrases and lines from familiar cartoons or shows over and over again in between and sometimes during the examination. (This is called “perseverating” and “palilalia” I would learn later). When Wylie got overwhelmed, into rock position he would fold.

Even though she could not conduct a complete examination, she had enough to demonstrate that Wylie definitely qualified for speech services through their early intervention program. He had the requisite number of vocabulary words. However, it was his social use of language that was of greatest concern to her. Intuitively, I felt she had more to share concerning her time with my son. But, professionally she had to report only on her area of expertise. Still, I knew she must see children with varying “issues” during the course of her work and something told me she saw more than her report revealed. I bit my lip and my eyes stung with tears held back while we discussed her findings. Lots of kids receive speech therapy she assured me. Most of them grow out of their need for it. What I knew after that day, though, was that Wylie’s speech was just the tip of a Titanic-sinking iceberg.

Campbell was evaluated as well. Anyone who knows Campbell appreciates his ability to tell a good story. This has been going on as long as he could talk. While the pathologists found some minor articulation problems, they believed these would self-correct. By comparison (there’s that word!), Campbell had very good social use of language and an appropriate vocabulary. While I was relieved to learn Campbell’s speech was fine, it only served to underscore the emerging differences in the boys. The initial attempts at “not comparing” gave way to a constant categorization of the extreme ways Wylie was like no other child I had known. It was as if the speech screening experience gave me permission to acknowledge my private thoughts; once I acknowledged them, they were ever present…and loud.

Drop Like A Rock

One of the challenges when raising twins—fraternal or otherwise—is resisting the urge to compare them. Just as you would not want to compare an older sibling with the younger, the more athletic with the bookish, you do not want to compare two children who arrived on the scene at the same time! This is, however, incredibly difficult. They eat together, sleep together, grow and develop together. Side-by-side these two human beings are experiencing life before your eyes together; it is difficult, if not impossible, to avoid comparisons. My attempt at “not comparing them” was to at least restrict these observations to my own private thoughts. In not sharing these, I felt like I was in some way being fair. Still, after a while, my own private thoughts spilled over into random spoken observations and rhetorical questions at dinner to my husband. “Do you think Wylie would say more if he were not always smoking his fingers?” might float out in between bites of pasta or pizza.

One observed behavior that became problematic in preschool for Wylie was the “drop like a rock” maneuver. Basically, to the untrained eye, whenever Wylie did not want to comply with a wish, request, or command, it looked as if he was willfully disobedient because he would quite literally drop like a rock and hide his head. Had he not been born into a practicing Christian home, one might have thought he was preparing for ritual prayers to Allah. To the trained eye, this behavior could sometimes be exhibited when Wylie simply did not want to comply. But, it was also and more often employed whenever Wylie was overwhelmed. And, that turned out to be quite often.

How to deal with a healthy and densely packed two year old folded into a good-sized boulder? In preschool, they risked their health insurance deductibles and lifted him off the floor to move him to the next “center” or spot on the carpet they had directed him to go. God bless them! Sometimes, they tried to speak rationally to him through one tiny air pocket of his rock. In short, they adapted. So did Sunday School teachers (sometimes), other parents, grandparents, and siblings. As parents though, we felt like we had to “do something” about the behavior (just like you have to do something about a child that bites his preschool neighbor or colors on the walls). So, we began to discipline Wylie for dropping into rock mode. We would count to ten slowly before placing him in time-out, etc., all the typical approaches. Maybe this would have worked in the long run if the behavior had simply reflected willful disobedience. But, like the other coping mechanisms Wylie would develop in the future, dropping like a rock was one of his first. It was necessary for his survival.

You see he dropped like a rock at his own birthday parties…during children’s church when the Bible puppet came out…when it was time to line up to go back to class…when one too many people came through the front door at home...at restaurants when the food was brought to the table. Any experience that overwhelmed one of Wylie’s senses resulted in this defense mechanism. Daily—multiple times a day--he was terrified beyond his ability to express or communicate. Thus, the rock. We know that now. Sadly, we didn’t know then.

The Finale

My last section of Introductory Economics for Business meets tonight. It's the season finale! I've enjoyed these students tremendously. As working adults, they have a perspective about all things economic that is different than "traditional" students. Plus, every day we've had headline fodder to discuss. Certainly topic #1 has been the price of gas. We've explored the consequences of price controls, government intervention, off-shore drilling, etc. I maintain it's a supply problem and we need to start drilling--somewhere! What do YOU think?

Two Fingers and A Blanket

Two Fingers and a Blanket
There they are—clear as day: two miniature human beings scuba diving inside my body. Twelve weeks old. They are the reason I had been enjoying “enhanced” symptoms of pregnancy: double-the-nausea, double-the-increase in body parts above and below the navel. As I looked at the ultra-sound picture, it almost appeared the divers waved at me. Arms and legs are moving, blood is pulsing, hearts beating. Cool. Turning my head to look at my husband, I found his nervous smile trying to convey confidence. It belied a little bit of fear. We had been here before my daughter was born. “It looks like twins” the doctor said. Twins. Three years earlier, laying on my back for the same reason, the ultrasound did not verify life. It confirmed there had been two lives, but they were over almost before they began. That day wasn’t about fear. It was about sorrow. Our daughter, McKenna’s, subsequent birth one year later was normal and she was now approaching three years of age. I was healthy and we were ready to expand our family. It just seemed vaguely familiar—the discovery that there were two. We both hoped these little guys would arrive as planned.

They did.

From the very beginning, they were different. That’s no surprise—even mothers of identical twins will say the same thing. But, the differences between the two boys went beyond physical features and personality. It was as if they both had two radically different ways of engaging the world. Baby “A”, named Campbell, was alive, awake, alert, and enthusiastic from the start. Baby “B”, named Wylie, almost always seemed like he had something on his mind. Like he was thinking about the number pi or considering quantum physics. He ate, slept, and responded like a normal baby at the milestone appointments. There was just always something a little unique about him.

My mom was the first to comment that Wylie seemed always to hum. When he was sleeping he made noises. When he was awake, he seemed to make noises, more so than Campbell. At about three months, Wylie found his middle two fingers and they were almost constantly in his mouth. Especially for comfort. Neither one of the boys took a pacifier. But, the fingers…When he was older, we used to joke that Wylie was “smoking” them: he would remove them only to speak or make comment on something. Truly, he was addicted! And, just like smokers sometimes take their nicotine with coffee, Wylie took his fingers with a blanket.

Among the many gifts we received after the twins arrived, were several blankets. Some were purchased, some handmade. My favorites of these were from our friend, Abby Rankin. She sewed two blankets from that super soft flannel that you just want to touch and caress. One blanket’s flannel had coffee cups and saucers all over it and the other had cows and other animals. Both were trimmed in satin. Over time, Campbell grew indifferent toward blankets, but Wylie loved the blankets Abby made. He especially loved the satin trim. He would thread the trim around his fourth finger and underneath the two smoking fingers and rub the satin with his thumb and fourth finger. It was a delicate and daily operation. After he began speaking, he identified the beloved items as “blanket blue” and “blanket purple”. Either one would do. But, one was always a necessity.

If the family loaded up for a trip and got a few miles away only to discover blanket blue was missing…to home we would return. If blanket blue was left inadvertently at a friend’s house…to the friend’s house we would go. Worst of all--when we had not even left the house, but blanket blue had gone missing--an all-out search was forced upon us until the thing had been found and returned to the finger-chain-smoking boy who could not, would not sleep nor be comforted without it.


Child psychologists teach and most parents are aware that children have favorite blankets and toys. This is not unusual. However, Wylie’s preoccupation with fingers and blankets was the first sign of needs that went beyond comfort and security. Wylie’s preoccupations were coping mechanisms necessary for him to survive the fourteen hours a day he was awake. Fingers and blankets would turn into laces properly tied and food groups carefully parsed; to ears covered during toilet flushes; to schedules carefully planned and consistently executed; to haircuts given with extraordinary care and peanut butter and jelly sandwiches made with precise specifications; to preschool teachers lovingly making exceptions and speech pathologists and school psychologists gingerly delivering the news to us: Wylie is undeniably and diagnostically …different.

Look, There's a Parking Lot Now

Out little town is watching the painfully slow construction of a Chili's Restaurant. When you have 12 Mexican Restaurants, 1 McDonalds, and 2 Del Taco's...you can see why we're all fairly interested in the grand opening. Wylie--who like most Aspergery-kids is very often master of the obvious--observed the parking lot is finished.

This is good news. And, it got me thinking...the parking lot is pretty important. Not just in business, but in life. Consider the business: they could have the best food in town, the most polite servers, the best ambiance. But, if people can't get to the restaurant, if they cannot get close, they won't come at all.

A parking lot says: we're expecting you. We're making a place for you to arrive. We want you to visit. We will help you get close.

Sometimes I think we decorate our homes/lives with all the best stuff: great furniture, good food, polite conversation, effiecient operations. But, if people can't get close to us, if they don't sense there's a place for them to arrive, if they don't feel invited or expected to be in relationship to us, they won't come at all.

Simple question: is your parking lot finished?

Laces

Laces

“It bothers me”.
“It” is a shoelace double-knotted on my son’s left shoe. The knot tilts slightly to the left on the shoe instead of balancing nicely in the middle as all good knots should. Noting this I offer to fix it once we get to school. Sometimes these things are forgotten. The morning routine continues. Siblings are dropped off at their school, the extra stop at a famous drive-thru for morning caffeine completed, and the trek to sloppy-knot-shoe-son’s school is underway. Conversation about the weekend is enjoyed. All of this takes us thirty to forty-five minutes away from the first complaint about the offending lace. There is hope it could be forgotten.
Approaching the row of backpacks hung on pegs in front of my son’s class, the request is uttered again from behind me, “Can you fix it now”? And, I do. What parent doesn’t want to accommodate a child’s request for comfort and security? We all do hundreds of things a day for our kids almost subconsciously as we learn their likes and dislikes. All kids have likes and dislikes. All human beings have them. Some…more so than others.

A Blog is Born

I've been carrying this baby for way more than nine months. More like years.

This is it: Happy Birthday!

ZigZagStraight is a story. It's a life. It's a way of navigating through chaos and change. Now, it's a blog.