From College to Kindergarten

Last night, we said goodbye to my niece. She leaves on Friday for college, so we had our last Sunday dinner with the whole family. We are very fortunate to have two bright, beautiful and extremely talented nieces who graduated from high school this year and are starting the next chapters in their lives by heading off to college. While I am thrilled for both of them, it was a bittersweet moment for me. Not just because the Omaha niece has acted as the only babysitter that David has ever known in his soon to be six years of life. Not just because she graciously tolerates all of the emotional outbursts—mine and, yes, David's too. I think I was just a bit sad wondering if I will ever be sending David off to college. Will there be a time when we are anxiously waiting to hear from his roommate? Will we be running to Target for the 17^th time to get that one last necessity? Will I be packing the car, making sure that I have brought a box of Kleenex for the drive home?

I suppose, for the moment I cannot worry about David and college. David works extremely hard, but I now realize that I am the one getting an education and not just an education in autism. David has taught me to appreciate each step of this process. Without autism, I might not have noticed the first time that David called me by name, or told me that he loved me, or asked for a marshmallow. Without autism, I might not have noticed that an airplane flew over our house this morning while we waited for the bus. Without autism, I might not spend fifteen minutes each morning before school reading to David because I would probably feel like I have better things to do. Without autism, I might not be able to tell when David really is excited about something, or moved by a particular piece of music, or just happy that I have picked him up from school.

David has made great strides and I am confident that one day, he will probably make it to college, but for now, I'll concentrate on Kindergarten.

Eavesdropping

Yesterday, I drove Andrew and a friend to practice. We picked David up from school, first, and after acknowledging Andrew's friend, who was hard to miss as he was sitting in the back seat right next to him, David proceeded to sing the whole 25 minutes in the car. He was singing a musical version of "Chicka Chicka 123" from one of his favorite DVDs. Most of it was unintelligible, so it sounded something like "Dadadadada apple tree. Dadadadada 1 2 3."

After listening for quite some time, Andrew's friend finally remarked, "Did he do this for your whole drive to Chicago?"  Andrew laughed and said that, in fact, he hadn't because he watched some movies in the car, but then added, "I have to say, having David for a brother is never boring."

That's right, Andrew, David certainly is not boring.

What’s in a Name?

It is probably a good thing that Michael and I have two boys, because we quickly settled on boy names during each of my pregnancies, but girl names would have been more problematic. I have always liked the name, David, which quite appropriately means "beloved" and I don't mind the nickname, Dave, although we always intended to use his full name. 

To date, Andrew is the only person who has referred to David as Dave, which is just one of a host of nicknames that he has used for his favorite "little guy." I should have been writing them down, because it would seem that Andrew uses a different pet name for David each day. They range from hybrids of his real name, including The Davester and The Davinator, to more descriptive names like The Little Paratrooper, used when David had just scaled the kitchen cabinets to get to the chips, or my least favorite, Midget Man. Let's hope that last one doesn't stick, particularly because David tops the 97^th percentile in height and is projected to be at least 6'4" tall.

David rarely uses his own name and has a great deal of trouble answering the question, "What is your name?" When he does refer to himself, he seldom uses David. Sometimes he will say "Day-me" which I believe is a combination of David and me—at least he has the pronoun correct. Most often, however, he uses the name Ginnie, which has a hard g sound, like the word girl. I cannot possibly imagine where this name came from, but he uses it pretty consistently.

David often just repeats or echoes a phrase back to you, called echolalia in the word of autism. And so, as I tuck David in at night I am sometimes reminded of the old George Burns and Gracie Allen comedy routine where George Burns would close the show by saying, "Say goodnight, Gracie" and she would say "Goodnight, Gracie" except David adds his own little twist. I tell him "Say goodnight, David" and he responds "Say goodnight, Ginnie." Sometimes I feel as if I am living a comedy routine.

Image via Wikipedia

School Bus Blues

David started Kindergarten this week. It was the topic of conversation as I sat recently with some friends over a glass of wine—starting Kindergarten. Several of the Moms at the table had children starting Kindergarten and they were discussing what an emotional time it was. Now, I am a very emotional person as evidenced by the fact that my niece always includes in her movie descriptions to me, whether or not this particular movie will make me cry. Most do, even some of the animated variety. So, it came as a great surprise to me that I really was not sad to have David starting Kindergarten—not even the slightest bit. In fact, I could hardly contain myself and found it difficult not to do a little happy dance in the parking lot after I dropped him off on the first day. I just kept thinking about having some time to myself on days that I do not work.

David has been in school already for two and a half years and in therapy even longer so I guess David and I are somewhat immune to the first day jitters. I say "somewhat" immune because we still have to work pretty hard to prepare David for new situations, but he handled his new classroom and teacher very well and apparently, according to his teacher, sang his way through his first day.

 Tuesday was more worrisome for me, however, because we had decided to have David ride the bus to school starting on the second day. I had not really prepared David for riding the bus primarily because it took me so long to decide that he could handle it--or if we are being honest, that I could handle it.

 We started talking about the bus when he came home from school the first day and I could tell he was not happy. David did not come up to me and tell me that he was sad or that he was worried about the bus. He chose instead to start listening to music. He picked a piece of music on a CD that he had not heard for more than two years. It was a CD we used to play for him when he moved from his crib to his bed and was in the drawer of his nightstand long after we took the CD player out of his room because he kept throwing it and finally broke it. He held up three fingers, remembering that the third track was his favorite, Brahms Sonata No 1 for Cello and Piano in E Minor performed by Emanuel Ax and Yo-Yo Ma. It is a good thing that he has good taste because he has been listening to it almost non-stop since.

 The next morning, my sister came over to help get him on the bus. Ann-the-Enforcer had to carry him, but he did not cry or really make a scene, he just kept saying "Mom Mom car." The past two days, he has walked to the bus by himself, but has insisted on walking down the driveway backwards. It is as if he just needed to reiterate that he still was not happy—a sort of silent protest.

For a long time, we did not know what David was feeling because he could not express himself and really did not care to. When his little circle started to expand enough to include us, he would tell us that he was mad or upset usually by throwing something or hitting one of us. This time, however, he chose to listen to melancholy music and walk backwards—much more appropriate ways to express himself. I always have to remind myself that David is making progress--even if we are sometimes backing our way toward it.

It’s Not Every Day

NOTE: I am extremely blessed to have two beautiful and loving boys. My older son, Andrew, serves as David's champion, protector, playmate, and on occasion, partner in crime. He had a few things he wanted to say about his brother and asked if he could have a chance to write. His ideas came so quickly, I had to type them for him, but the thoughts and words are all his. So, it is with great pleasure that I introduce my very first guest writer, Andrew, age 10.

It's not every day you have a brother with autism. No, it's not every day you have a David with autism. It's tough having a brother with autism. When you want to play with him it's just so hard because he wants to play stuff that you don't want to play. When you want a turn sometimes he doesn't allow it and he just keeps on playing happily. You don't get a lot of choices with a brother with autism, but at least you have a brother and he's there to support you.

It's hard having a brother with autism, but it also has its ups and its downs. The downs are that he will sometimes hit you to try to get your attention because he can't tell you straight to your face. He usually won't share with you unless he is in one of those good moods. Sometimes he won't play with you because he has autism and because of that he feels like he is in his own little box—a clear box where we can see him and he can see us, but he can't hear us. He knows what we are saying, but we don't know what he is saying back.

It's good having a brother with autism because he is there to support me. He jumps up and down and laughs when I play SpongeBob with him. He hugs me and smiles at me and tries to communicate with me. I love it when we are in the bathtub and his eyelashes are wet and he is just looking at me with his big pupils and smiling at me.

I would never change that David has autism. Again, it has its ups and downs. The ups—you are confident to say that he has autism and I would never change that. The downs, well, I think there may be too much to list. I love him and he loves me. But, the main thing is he is there and that's that.

It Takes A Village

At almost six years old, David has been going to school and therapy for more than half of his young life. He is, quite frankly, a pretty busy little guy and fortunately seems to love structure and thrive on his busy schedule. And because I am still working—although part time, it is sometimes a logistical nightmare to schedule therapies and appointments and then make sure that everyone can get to their destination on time, with matching shoes, having remembered to eat whatever the last meal was and, on a really good day, with teeth brushed.

Village People via last.fm

There is an expression, "It takes a village to raise a child," and for David this is most certainly true. I am fortunate to have my own little village and I would like to introduce you to the Village People—I mean villagers. Of course, they need to be called villagers because for someone of my forty-some odd years, Village People means something different entirely and unless I have a pressing desire to hear, "Y.M.C.A." or "Macho Man" I will stick with my villagers. I mean, I have no use for a G.I. or a biker, although a police officer might come in handy on occasion and a construction worker certainly might be useful patching dents and refinishing woodwork from David's pre-verbal stage where he would throw things when he got frustrated, but anyway, I digress.

And so, the cast of characters includes first and foremost, my mother—or Granny to the boys. Ten years ago, she told me that she would watch Andrew for one year so that I could go back to work part-time without putting Andrew in day care. Aside from the one month break that she had five years later when Andrew was enrolled ever so briefly in Lavender Patch--before he decided that day care really wasn't for him-- she has had one or both of the boys on days that I work, well for a decade. Andrew fondly refers to her house as "Granny Camp" and either she is an incredibly poor judge of time, or one of the most selfless Grannies out there to provide the combination of well baby, sick baby, respite care, cafeteria service, activity planner and even, on more occasions than I probably want to admit, laundry service.

The mention of Andrew's fleeting enrollment in child care brings me to my older sister, Annie to the boys. I mention that she is older, not just to advertise the fact that she is, in reality, older than me, but also because it means that her children are older than mine. Andrew started day care when he started Kindergarten because they would transport him to and from his school. When it became apparent that he was going to be a day care dropout, Annie offered to drive him to and from school and has been carting my boys around ever since. She offers support in many other ways, but since her kids are already past the carpool stage, the fact that she has been willing to be bound by elementary school schedules for another five years is amazing. She has also served as the occasional stand-in on school activity days and was, come to think of it, the first person with a separate name from David, "Ann-NIIIIEEE."

The name that all of the Grandkids have for my Dad is "Bitsie" translated to "Addy" in David-speak. I am not even sure how it started and it might be an embarrassing nickname to some men, but my Dad has embraced it. Of course, Bitsie participates in all of the running with David, but more important in my mind is the fact that he finds special things to do with Andrew, who sometimes has to feel left out with so much focus put on David. He will take Andrew to ride bikes, to shoot a bucket of balls or even just play a game with him on the Wii, something I absolutely do not have the patience to do. He must be better than I am at Wii games, or more coordinated, or in better shape, or most certainly all of the above because Andrew enjoys playing Wii with him, but finds playing with me an exercise in frustration.

Our sole babysitter, who also happens to be my niece, Katie or Ka-hee to David, has been a godsend to me. It seems that she rushes to my rescue at just the right time with a sort of 18-year-old energy that I do not even recall having at 18, often armed with a café mocha prepared just the way I like. She smothers David in kisses and seems to be able to convince him to do things that he will not do for me, or if she cannot convince him she will scoop him into her arms (which with David weighing in at 55 pounds is no longer an easy feat) and somehow get him to cooperate. She has even volunteered for some of the really fun jobs (insert sarcasm here) like accompanying us to a dental appointment. We will certainly miss her as she heads off to college in a few weeks.

Thomas, my nephew, who is T or Tommy to David serves as David's wrestling partner, pommel horse and general punching bag. I think David put together his first two word sentence to get Thomas to continue playing a chasing game with him, "Run, T." At 13 years old, you would think he would have very little to do with his younger cousin who happens to have autism, but I marvel at the fact that he still chases David around our house, sometimes sporting David's favorite red blanket around his neck like a cape just to get a rise out of him. David's laugh makes Thomas grin with these big dimples that melt my heart—watch out girls!

And finally there is my bother-in-law, the doctor. I am not sure why Andrew chose to double his name to "John-John," but it stuck. David has always seen John as the intellectual of the family—rightfully so—and saves his deepest and most philosophical comments for him. It does not matter that John cannot understand a word of what was just said, he always listens intently and comments in return, for which I am grateful.

David does not say "thank you" very often. Actually, David never says "thank you" without being prompted and I certainly do not say it often enough. So, on the eve of David's first day of Kindergarten, I hope that David's villagers know how much we appreciate everything they do, but just in case they do not, a most sincere and heartfelt "thank you." David couldn't have made it this far without you.

Decorating Dilemma

We need to replace the carpet in our family room. Actually, we probably should have replaced it some time ago, but I haven't had the energy. I know that it is really not a difficult task, but when I start to think about replacing the carpet, then of course the wallpaper has to go because it came with the house and is not really my taste, anyway. And if the wallpaper goes, I will have to pick a paint color. And if we repaint, then it goes without saying that we will have to replace our furniture that we bought over a decade ago.

Now, aside from becoming a very expensive and time consuming proposition, I also have David to consider. It would be fair to say that he is somewhat hard on furnishings. For example, he is extremely fond of the music that they play at the close of the national news and if you are not on your guard when it starts to play, he will climb onto the coffee table to do a tap dance. Scratch glass top table off the list.

HGTV has a myriad of shows on the air, offering decorating ideas for all types of people on any size budget, but I have yet to see one offered to appeal to my style of decorating, which might most accurately be called autistic eclectic. For our purposes, it is a fairly minimalist style with fewer projectiles, I mean accessories. It would encompass more hand-me-downs than heirlooms and have a color palette that leans away from Gettysburg Grey and more toward Five Year Old Fingerprint. (What color is that, anyway?)

So, I will eventually pick new carpet and instead of being armed with my swatches for color matching purposes like most normal—whoops sorry, "typically developing" people, I will be looking for a nice shade of Cherrios (original flavor) to camouflage the cereal that is somehow always dribbled across the floor within seconds of vacuuming.

Watch your mouth, young man

I know it sounds crazy, but for a long time I ached to hear David say the word, "no." Really, I would have been delighted to hear him say any word, but "no" just seemed like a word that so many Moms can take for granted—a word that so many Moms probably wish that they would never hear again. To have David be able to answer a question—or even insert his little opinion totally unsolicited, with a firm and very emphatic "NO" was a like a dream for a long time.

David has now learned the word "no" and is certainly not afraid to use it. I hear it often and have not yet grown tired of it. I was interested, though, that a few days ago, "no" evolved into "nope. And he says it like he is really enjoying it, kind of drawing it out more like "no-puh." He uses it often, particularly when he wants to avoid talking, as in I say to him "David, say 'Hi'" which he should be able to tell by the desperation in my voice really translates to "David could you please tell the kind woman at the snack bar at Target hello because she is just trying to make conversation with you and since you are the tallest five-year-old she has ever seen, surely you must be able to say hello and not appear rude because I really don't feel like getting into a whole discussion right now about how you have autism when all I was really trying to do was buy you a cinnamon-sugar pretzel so that maybe I can get all 14 things on my list before you run out of patience." And David's answer? "Nope."

Just today, however, there was another evolution. You may know that we recently got back from Chicago, or "Cago" as David calls it and he must have had a good time because he has been talking about it a lot. We have also been talking about going back to school, because David will be in a different classroom this year. This morning, when I mentioned that he starts back to school on Monday, instead of saying no—or nope, for that matter, he said "Go CAGO!" I did not really think too much of it until this afternoon. David has been taking piano lessons. I thought he might enjoy it because he loves to play our piano while singing. It is probably another story for another day, but let's just say I was wrong and as of today (lesson number 5), his butt has yet to touch the piano bench.

So, David and his "piano" teacher were taking turns playing instruments and she had some egg shakers. She was asking David if he wanted the red egg or the purple egg, the red egg or the purple egg, the red egg or the purple egg. She has not worked with David before this summer and cannot understand much of what he says, but she must have felt confident she did not hear red or purple, because she kept repeating the question. And David finally answered her with a forceful "Go CAGO!"

I think "Go CAGO" may have become David's personal and very private expletive. His way of saying, as Radar O'Reilly so eloquently put it on an episode of M*A*S*H (and for the benefit of my 10-year-old, who often reads what I have written), "Go to H, E, double toothpicks."

Seeing Red

David's favorite color is red. This may seem like a trivial detail—something that every mother certainly would know about her own son. But, because David has struggled for so long to communicate, I can still remember the day that we learned this fact. We were working with someone from the UCSB Koegel Autism Center and she had some dot markers that David loved. We were all sitting around the kitchen table, each holding a couple of the markers. If David wanted a marker, he had to request it verbally. It didn't matter how close his verbalization was to the real pronunciation of the word, if he said something, he got the marker.

That day was very emotional for me, because I learned several things about David. He not only knew all of his colors, but had a separate and distinct name for each one. He always requested red first, it was the last to be put away and his pictures—predominately red. It seemed like an amazing revelation to us because David had been able to communicate something new, something we had not realized before. We had made a connection. He had a favorite color and it was red.

For a long time, David's word for red was "da." Who knows? Anyway, I made a new entry in my mental David dictionary, da translates to red. In the 16 months since that day, David's pronunciation of the word has improved, as has his ability to voice his opinions. When he strings together a sentence like, "I WANT red churt," guess what—he gets a red shirt. Consequently, David wears a red shirt almost every day. And almost every day as we are slipping it over his head I am thankful that he picked red—socially acceptable for a boy especially since we live in Nebraska, Husker Nation.

I sometimes worry how we are going to be able to break David of this habit, but for the time being it doesn't really seem like our most immediate problem, so I let it slide. But, what if at 35, he still has to wear a red shirt every day? What kind of job can he have without looking out of place in red every day, I mean every…single…day? Amazingly, I have been able to come up with two places that might consider his application—the Husker athletic department and Target Stores.

There was a story on the news last week that men who dress in red are perceived as more successful. Men who wear red are more attractive to women. Maybe David really had it figured out all along.

My Baby

Earlier this week, a co-worker was showing me some pictures of a newborn baby. They were beautiful pictures taken by a professional photographer and, not surprisingly, the baby was asleep.

There is something about a picture of a sleeping baby that almost stops my breath. They look so tranquil and peaceful, so innocent, that somehow you just feel like everything is going to be alright.

I know at 5-1/2 years old, four feet tall and almost 55 pounds, David is no longer a baby. But, he is my youngest and I am fiercely protective of him. He is my baby. Sometimes I sneak into his room at night to watch him sleep. And, no matter what has happened during the day, somehow I get an overwhelming feeling that everything is going to be alright.

Heart Wrenching

Yesterday was David's last day of therapy at the medical center. We made the decision to discontinue therapy, at least for the time being while David starts school full days in a little over a week. There were a combination of factors including the worry about the long days for David and the fact that this type of therapy is not covered by our insurance. I have been melancholy since we made the decision—although I may have been melancholy before we made the decision, who can really tell.

I had not said much about it to David, but I am sure he had heard us talking and equally sure they have probably made reference to it at therapy, so yesterday morning I just mentioned to him as we were getting ready that today was his last day of therapy. When we had said our goodbyes and were walking out to the car, I said, "That is the last time you are going to see Amber and Rashea for awhile." I was feeling pretty good about myself at the time because I had just placed David on the waiting list for next summer until David asked me, "Bad Boy?" He wanted to know if he was not coming back because he had been a bad boy.

Oh, David, if you only knew.

Our trip to Cago

Someone mentioned to me (thanks, Mom) that in previous posts I have made it sound as if David and I did not enjoy Chicago at all. Well, that is certainly not the impression that I intended to give. It is a challenge to travel with David, but it is a challenge to take him into the neighborhood Hallmark store to buy a birthday card. And since we have returned, David has been talking about our trip. Every time we are in the car for more than 10 minutes, David will ask "Cago? Cago?"

So, to dispel the myth of a miserable vacation, I find it necessary to highlight some of David's and some of my favorite moments from the trip.

The first on the list would have to be the Navy Pier Ferris Wheel. Now, if you read the August 3^rd post, you would certainly be able to determine if it goes on David's list or on my list. Let's just say that David does not share my fear of heights. In fact, the only reason I stepped into the gondola was because if I hadn't gone, I know David wouldn't have gone, or wanted Andrew or Michael to go either.

Next on the list is the Chicago Double Decker Bus Tour. We didn't use our car the whole time we were in Chicago and used the three day pass on the double decker bus to travel between most of the attractions that we saw. The tour guides were knowledgeable and extremely friendly and David was trapped—I mean contained—so I was able to relax and enjoy the tour. David really liked going under the bridges and since there are a plethora of bridges in Chicago, he was happy as well.

High on David's list would have to be doors, doors and more doors. Elevator doors, automatic doors, and most especially the heavy hotel room door that was so exciting to open and then watch slowly close with quite a satisfying click. So satisfying, in fact, that David did not seem to care which side of the door he was on when it closed—in the room, or temporarily locked out of the room. And I learned that if I piled enough furniture in front of the door at bedtime, I could actually sleep pretty soundly without worrying about David escaping and taking a midnight tour of Chicago on his own.

One of my favorite things about the trip was not actually an attraction, as much as the little triumphs that David can still make even when he is out of his element, with a different routine. David is pretty particular about where he goes to the bathroom, especially public restrooms and so am I, although I would like to think for different reasons. It was a seven plus hour drive to Chicago and David summarily rejected the first gas station restroom and to be honest, so did I. The next stop was the DeKalb Oasis and since apparently they use jet engines to power the hand dryers that was also a no-go, so to speak. Let's just say David left his mark along the Illinois Tollway. The next day, however, was a different story. With a little coaxing—okay, it was pure bribery as in, "You can press the elevator button after you go potty," David managed to find two acceptable public restrooms the first day of sightseeing. Hooray!

Okay, so as not to sound completely pathetic, I will pick a favorite thing that does not revolve around bodily functions. In general, we found that people are becoming more aware and understanding of autism. When I explained that there was no way David would wear his wrist band at the Children's Museum, they offered us an autism kit equipped with tools to make the visit easier for David. At the Field Museum when Michael explained that David was not going to be able to come in, they cheerfully refunded half of our money, so David and Michael could go back to the hotel. No one in the hotel elevator said a word when David would imitate the female elevator voice, "Going UP," which was always followed by "Beep, beep, beep, BEEP" as we passed each floor. There was one man from Europe—maybe Italy—who did remark (please read with an Italian accent), "He is really excited by this lift." No, really?

So, Michael and I both had brief moments when we got discouraged, but for the most part were really proud of how well David did. And when we got to a challenging situation Michael kept telling me, "Just think of it as therapy." And the good news is that we managed to come home before David's "therapy" meant that I had to seek therapy.

The Field Museum and the Ferris Wheel

Image via Wikipedia

A few days ago, I mentioned our trip to Chicago and Andrew's pilgrimage to see the Chicago Cubs play at Wrigley Field. I knew before we left that the game would be the highlight of Andrew's trip, especially if the Cubs were victorious. Planning activities for David, however, can be more difficult because I am often amazed by what takes his fancy—the wind turbines along the drive, for example—and I am sometimes equally surprised by the things that cause him great difficulty.

David probably would have been happy simply to swim in the hotel pool for several hours each day and call it a good trip, but we felt obligated to attempt to find other things for him to enjoy. Forced fun, I like to call it. After all, we belong to a pool in Omaha and if we were just going to have him swim the whole time, we could have saved the 450 mile drive and stayed home. And frankly there were many occasions on the trip when I wondered why we didn't do just that.

One of the things I thought both he and Andrew would enjoy was a trip to the Field Museum. I actually thought he might be interested to see the T-Rex, Sue, and some of the other exhibits. What I did not anticipate, however, was that he would not be able to make it past the front doors—the beautiful, etched glass and polished brass automatic doors. Actually, he did make it just past the doors and no further. They were too intriguing, too exciting and all David wanted to see. They served as his escape from everything that was making him uncomfortable.

Little did we know that we could have saved the $74 in admission, sat on the bench by the doors and David would have been happy, but Michael had already purchased our tickets before it became apparent that we would not be able to coax David into the museum.

Our ride on the Navy Pier Ferris Wheel was not much better. Obviously afraid of heights, you could tell that there was discomfort any time the gondola moved, even slightly. The white knuckles and the staring at the floor instead of enjoying the view were also indicative of the incredible amount of anxiety experienced. The only difference was that the person having such a problem on the Ferris wheel was not David, it was me.

I am afraid of heights and I know it is an unreasonable fear, which Michael tried to remind me several times during the seven minute ride. Actually, Andrew was quite amused by my reaction to the seemingly innocuous ride. I know intellectually that my reaction is ridiculous, but the anxiety that I feel in those situations is quite real.

Well, I am happy to report that you did not miss the news of the terrible Navy Pier Ferris Wheel tragedy of 2010, because, much to my delight, we made it back to solid ground without incident. And since taking that ride, I have been thinking about my reaction and how easy it was for Michael to dismiss it because he does not understand what I am feeling. I will have to remember that ride on the Ferris wheel the next time I dismiss David's anxiety. And the next time we visit Chicago, maybe we will skip both the Field Museum and the Ferris wheel.