Saturday, October 30, 2010

The Halloween Parade

This was my very first glimpse of David in his Halloween costume.
Oh wait—this is not David, but my nephew who is slightly bigger and eight years older than David showing him that costumes really aren't so bad. On second thought, maybe David was somewhat traumatized by the sausage casing look. I need to give Thomas a great deal of credit, though, because extracating himself from the costume without ripping it was nothing short of a Houdini move.

So, this was my first glimpse of David at the Halloween parade and, as you can tell, he already doesn't look too thrilled. Please note the red shirt peeking out from under SpongeBob because, as you know, we cannot be without our favorite color. His left arm has begun to creep back into the costume to allow for a quick escape from SpongeBob's clutches if given the opportunity.

The parade begins and he's walking, although it is difficult to get a good picture when he is hiding from the camera like a criminal on his way to the pokey.

He's still walking...and still hiding.

And he's made his escape. There it is, Ladies and Gentlemen, he spied his family cheering in the crowd, decided that we had seen enough and he'd had enough. Now there is some strut in that step.

Let's see, I spent $12 for the costume, which averages to about fifty cents a second of wear time. I think that sets a new record for David.

Friday, October 29, 2010

A Change of Seasons

I am not the kind of person who would enjoy living in a temperate climate, sunny during the day, a cool breeze at night, flowers blooming continually. (Okay, maybe it would have appeal during the month of February. I hate February.) Call me crazy, but I love having four distinct seasons. Living in Nebraska, we certainly have weather extremes—sometimes all in a single day.

David, however, hates the change of seasons. I guess I shouldn't presume that. To be more accurate, David hates change—seasons or otherwise—and the change of clothes that accompanies a change of seasons can sometimes throw us into a tailspin.

Getting David to switch from sandals to tennis shoes or shorts to jeans is somewhat comparable to the Middle East peace negotiations. To get David to try something new, there is usually some coaxing, some compromise, a great deal of consternation, then a confrontation followed by a conflagration, but in the end we usually have to resort to flat out bribery.

The weather has gotten cooler and I was trying to prepare David for winter coat season. Of course, we had a coat for him to wear that had been Andrew's, but it was not the favored red, so I caved—I guess that is the compromise part—and bought a brand new red one to make the transition easier. So, on Monday we gave David a choice. If he wanted to go to swimming lessons, he had to be decked in his red and gray puffer coat from Target. Well, let's just say that he wore the coat, but not without a fight. And he was still so annoyed about it when he got home, that he ripped it off and threw it on the floor of the garage as soon as Michael had stopped the car.

Tuesday, I bought David his Halloween costume--nothing like waiting until the last minute, right? David does not like to wear costumes, surprise, surprise, but it was SpongeBob Squarepants, one of his favorite characters. I knew that he needed to see it and hopefully try it on before the big day, so I pulled out all the stops. First I had Andrew parade around in it and then (please HOLD for the bribery part) I told him that if he put it on, we would go get an ice cream cone. He abandoned the costume, left the room and I thought that he had made the decision to stay home until he quickly returned wearing his new red winter coat zipped up to the chin, looking like a puffy red cherub. It was like introducing the SpongeBob costume into David's wardrobe had pushed the red coat one notch up the tolerance totem pole. David still hated the coat, but not as much as he hated the costume.

One of my wise advisors, who in this case just happens to be my 13-year-old nephew, has suggested that I should always just be a season ahead. Tomorrow, I should introduce David to his Christmas sweater, so that he will wear his SpongeBob costume on Halloween. Then by the time I am ready to get David dressed to take Christmas card pictures, I can break out the Easter outfit. By the way, when does Target begin stocking their Easter clothes?

Tuesday, October 26, 2010

He Ain’t Heavy

Growing up in Omaha, Nebraska, I am intimately familiar with the famous quote, "He ain't heavy, Father, he's my brother." It was chosen by Father Flanagan to be the motto of Boys Town, a home for troubled boys that he founded in Omaha in 1917 and later made famous in a movie starring Spencer Tracy and Mickey Rooney.

When David was diagnosed, it was like my world shifted course. For a long time, I couldn't think of anything else. Obviously now, almost three years later, I can think of other things. I have to think of other things, but not a day goes by that I do not think of autism, even though that thought may not evoke the same feeling in the pit of my stomach that it did originally.

When David was diagnosed, our older son was seven years old. We did think about the ramifications that David's diagnosis would have for Andrew as an adult. Would he need to care for David? Would they live in the same town? Would Andrew need to support David? What we did not originally consider, however, was that Andrew would feel the impact immediately. At the first autism conference I attended, I heard a developmental pediatrician discuss the effect of autism on siblings. The worries that he had heard expressed by siblings of children with autism as young as six, seven, eight or nine years old were startling.

RulesAndrew is an extremely tender-hearted boy, so I knew that he worried about his brother. Last week it all came spilling out. He had just finished reading the book Rules by Cynthia Lord. It is written from the perspective of an older sister, ironically, with a brother named David who has autism. To quote the back cover of the book, "That's where I keep all the RULES I'm teaching David so if my someday-he'll-wake-up-a-regular-brother wish doesn't ever come true, at least he'll know how the world works, and I won't have to keep explaining things."

Andrew is required to read every day for school, and on this particular day he read an extra 11 minutes because he wanted to finish this book. An extra 11 minutes that were so moving to him that he came into my bedroom sobbing. The flood of emotions could not be stopped. All of his fears came tumbling out. "What if David never can be understood by other people? What if David gets lost? What if he cannot be found even with an Amber Alert? What will he do if I die first? Who will take care of him?"

I could not tell him not to worry because, he informed me, he worries about it every day. He worries every single day. Just like me.

What I learned from this experience is that Andrew has wisdom beyond his years. I cannot pat him on the head and tell him everything is going to be okay. I cannot tell him not to worry. I cannot tell a joke and take his mind off of it, coax him out of his concern. He wants to be a partner in this process. He is a partner in this process and he is smart enough to realize that at some point, he may be solely responsible for David. Do I wish that this was not the case? Yes, but I know that Andrew loves his brother unconditionally. Andrew accepts David's autism, even celebrates David's autism as an integral part of who he is. He has often remarked that he would not take away David's autism if he could. So, do I believe that Andrew is up to the task? Absolutely. In fact, we may have a difficult time convincing Andrew that David and (hopefully) his wife and kids do not really want to live with him. Maybe just next door.
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Monday, October 25, 2010

Double Standard

Until he started full-day Kindergarten, David stayed at my parents' house on the three days a week that I work. Because my parents have a relatively new coffee table—especially when compared to any of the furniture that I own—my Mom used to cover it with a blanket when David came over to stay for the day. Obviously, she was trying to protect the table from sticky fingers, matchbox cars, spilled milk or any manner of injury that David can inflict. In David's mind, however, it was like she had wrapped it just for him, creating a blank canvas, a platform on which to run his train, assemble a puzzle or line up his DVDs. Soon, David could not be in the house for five minutes without carefully lifting everything off of the table—remote control, magazines, potted mum plant—and then requesting help in covering the table.

Last Friday, David had a day off from school and spent the whole day at Granny camp, as it has come to be known. As soon as we arrived home from the land of the veiled table, he apparently decided that it was a practice that needed to be implemented at home. Did he carefully remove all of my precious treasures off of the table to prepare for the draping of the blanket? Of course not. Instead, he lifted one end of the table and watched with delight as everything slid off the other end into a pile on the floor. Talk about a double standard.

So, last week I also had David's first school conference of the year. I was a little bit nervous just because I have not known this teacher for very long and I wasn't really sure how David was doing in her class. Well, she told me that David has made huge progress. His handwriting is improving. He is doing well with his Touch Math and he is reading above grade level. Stop the presses. David READS? He certainly will not read for me at home. Essentially, David will do everything at school that he respectfully declines to do at home. Once again, the double standard. David performs better for his teacher, than he does for me at home and it couldn't have made me happier.

Tuesday, October 19, 2010

In a Line

David loves to listen to music and it can be a very moving experience for him. Because he is not very verbal, the lyrics are not the important part of the song to him. When he starts to sing, he will frequently repeat the same word or sound over and over again—whether or not it was part of the original lyrics. Often this word is "goodnight" and I will hear David singing, "Goodnight, goodnight, gooooodni-i-ight" stretching the syllables to make his word match the melody—using his own words for filler, because he likes the way they sound.

I have long been a fan of James Taylor's music. I am sure that there are people out there who can tell you the meaning or the backstory to every song he has ever written. To me, however, it would seem that sometimes he puts words together not necessarily because of their meaning, but because to him, like David, that particular combination of words—of sounds—seems to work.

For the past several days, I have been humming the James Taylor song "Sun on the Moon" from the Never Die Young album. I liked the song even before David was born, but now it reminds me of him because of a part of the lyrics:
    In line, in line, it's all in line
    My ducks are all in a row
    They do not change, they do not move
    They have nowhere to go

Not surprisingly as a kid with autism, David sometimes likes to order things, to line them up. I try to be patient with this behavior, but by about the tenth time that I saw that my perfectly ripe Pottery Barn pears had escaped from the antique dough trough in the dining room and looked like this

I decided that it was time to put them away for a while.

On Sunday, David's item of choice was Bounty paper towels. Michael had just returned from Costco and one of the items purchased was paper towels. I had seen David playing with them, lining them up on the table which seemed harmless enough especially since the packages were individually wrapped. A few minutes later, I looked up from the kitchen table and discovered David had included himself in his little linear display. There he was, eyes gleaming, incredibly proud of himself like he had just completed his very first performance art exhibition.
With that, words escaped me, so to borrow the words of James Taylor, "Bow wow wow, honk your horn."

Sunday, October 17, 2010

A Stranger Among Us

We have decided to take advantage of the extremely low mortgage rates and refinance. We had an appointment on Saturday morning with an appraiser to come take photographs and measurements in advance of our closing date. So, first thing Saturday morning, Michael and I spent some time making the house look presentable.

I guess we rarely have people in our house who are not aware of David's diagnosis. Of course, our family and friends understand why we have a mini trampoline in the corner of our family room, or a huge calendar on our front door. No explanation is necessary. I always wonder, though, what someone new coming into our house will think.

We got the house picked up and we waited, and waited, and waited until it became apparent that the appraiser had forgotten our appointment. A call to his cell phone confirmed our suspicions and he told us that he would be over in 45 minutes. Not surprisingly, I was annoyed. With David, there is a pretty narrow window where you can keep the house picked up before he, for example, steals the desk chair from his brother's room, manages to get it down the stairs (it's a pretty heavy chair) and proceeds to give five hand towels collected from every bathroom in our house a ride.

Short of stopping the space time continuum—or rendering David unconscious—there really is no way to prevent this from happening and by the time the appraiser arrived, the towels were neatly arranged, in a perfect row, of course, across the family room carpet. Michael quickly explained that David has autism and our visitor couldn't have been nicer. David said hello to him and offered him one of the hand towels in the manner of a miniature bathroom attendant. It was like we were distributing some sort of strange party favors.
When the tour arrived at our main floor bathroom, Michael must have realized that most people do not have a 9 inch television with built in VCR in the corner of the room—especially a bathroom the size of a postage stamp as ours is. He was quick to comment, "We have a TV in there because sometimes David likes to watch TV while he's…." At that comment, the appraiser smiled, bent down, looked David in the eye and said "That's okay, I like to read in there." With that one comment, that moment of kindness to David, all irritation at his tardiness was forgiven.

Saturday, October 16, 2010

A Change of Perspective

David is our second child. I know that is it not unusual for parents to be more relaxed with the second child, more lenient with rules, less structured with the routine. When you add autism into the mix, at least in my experience, it makes you have a totally different perspective.

I hesitated, although only for a moment, before writing Thursday's post about David stepping on a piece of glass. I momentarily felt like I should justify why he was outside without shoes—or maybe even rationalize it in my own mind. I never allowed Andrew outside without shoes, but with David it is a different story. Honestly, he did not ask my permission before he bolted out of the kitchen door, but I have not been strict about his footwear anyway. For a long time, David had sensory issues and would not have considered going barefoot. He would not even walk through the grass with sandals on because he could still feel the grass on his feet—one of the reasons why some kids with autism toe walk. So, the fact that he will walk on the deck, on a sidewalk, in the grass without shoes is, for David, a milestone.

I was reminded of my paradigm shift last night at bedtime as I rounded the corner into my bathroom to discover David, smiling as always especially when he thinks he might be about to get into trouble, using his leftover toothpaste to write his name on our mirror in a lovely shade of Kids Crest. Had it been Andrew, I would have grabbed the toothbrush, put it back in the drawer and hurried him off to bed. If I had been in mean Mommy mode, I may have even made him clean the mirror.

But this was David. David who rarely, willingly at least, puts a pencil to paper, marker to dry erase board, crayon to coloring book. So, when I caught him in the act, I did grab his hand, but instead of scolding him, I found myself saying "Here, let's make an A." I have to say that I still have some scruples. I may have stopped him if he had been using mascara. I certainly would not have allowed nail polish, but if I had thought of it last night, I probably would have handed him a tube of my lipstick.

Thursday, October 14, 2010

Emergency, Emergency

Earlier this week, I wrote about David's quest to find the perfect bed at my sister's house. He thought that he had found it, but within 24 hours it was only a distant memory. My nephew, Thomas' bed, had quickly been replaced in David's catalog of supremely comfy beds.

In retrospect, it would have been better if David had just stayed in Thomas' bed that night. In fact, I think that Michael and I did try to tiptoe out of the house because it is sometimes extremely difficult to get David to fall asleep. It would have been a luxury to skip the nighttime routine, but clever Annie noticed the 55 pound five-year-old lump in the bed and sent David packing.

I say it would have been better if David had stayed because shortly after I brought him home from school the next day, I heard him outside screaming. His language has developed very slowly, but he is now able to tell me "I churt" and where it hurts, which is a great relief. But, on this occasion, he had "churt" himself so badly that all language was gone and by the time I got to him, he was a bloody mess. At first I could not tell where it was coming from because he had blood all over his hands and feet.

Let's backtrack for a minute and say that there are a few reasons why I chose English Literature as my major and did not enter the medical profession, not the least of which is BLOOD. I cannot handle blood. The sight of blood alternately makes me want to faint or vomit. Or vomit and then faint. You read stories about mothers and the rush of adrenaline that allows them to perform herculean feats to save their children—like lifting a car, for example. Well, my rush of adrenaline did allow me to carry David into the house avoiding all carpeted areas, clean him up enough to see that the blood was coming from his foot, bandage him, get him to the car and make the appropriate phone calls, all without screaming…or fainting…or vomiting, although I may have had a stab at hyperventilating, I am not sure.

David was a real trooper. By the time we got to the car, he had stopped crying and my husband, who had just come home from work, wondered what all the fuss was about. We arrived at the hospital and were greeted at the door by a nurse with a wheelchair. I quickly realized by the size that the chair was not for me, although I could have used it. David was hesitant, but then when he saw the hospital bed, he was in love. Of course, if you think about it, what boy (or grown man) wouldn't be? Built-in remote control and call button, head, foot and height adjustment and David's favorite feature—the side rails.

The diagnosis—David had cut his foot on a piece of glass. We don't routinely keep glass on our deck—think dinner party, umbrella lights, windy day and umbrella comes down, add one barefoot boy and you have the recipe for a cut close to the artery, which explains all the blood. The treatment—three stitches for David and a large glass of wine for me (or maybe two if I am being completely honest). The prognosis—good.

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Monday, October 11, 2010

Goldilocks and the Three Beds

We recently had dinner at my sister's house. David had been missing in action for quite some time and I thought it was probably prudent to go looking for him. You see, my sister has actually decorated her house—with nice things—and does not practice my style of decorating previously referred to as autistic eclectic, which essentially means stripped bare with the exception of whatever David's items of the week may be, currently five empty Kleenex boxes in varying sizes which is another story for a different day. Suffice it to say that visitors to my house in need of a tissue have to pull them out of a Ziploc baggie because David is not currently tolerating full tissue boxes in our house.

At my sister's house, however, in addition to a decadent number of Kleenex boxes with those little tissues still all neatly stacked, she actually has decorative items on her tables and in her bookcases that she has to dust around (or under, as the case may be) and I could only imagine which antique toy or oilcloth books that might have taken David's fancy.

Well, I found him upstairs and although he had made a mess it was really quite benign. Before leaving for dinner, we had bathed David and dressed him in his favorite p.j.s and he apparently was on a quest to find the perfect bed. First, he tried the guest bed and that was TOO SMALL. Then, he tried Annie and John's bed and that was TOO LUMPY, but when he got to Thomas' bed, it was JUST RIGHT, which is not surprising as Thomas recently pushed his twin beds together to form a king sized bed, the largest bed in the house, which is adorned with red bedding. David had tucked himself right in the middle of the bed and had his arms draped over the pillows in playboy fashion. When he noticed me standing in the doorway, he smiled and asked me to bring him a movie to watch—while lounging in bed. It was a scene reminiscent of, I don't know…Goldilocks? Hugh Hefner?