Oh, the Places We'll Go

It was my privilege a couple of weeks ago to attend a conference in Philadelphia sponsored by Autism Speaks, which used a variation on the Dr. Seuss book "Oh, the Places You'll Go" as the conference theme. More than 200 people associated with Autism Speaks fundraising walks from coast to coast (and Canada) came together in the City of Brotherly Love to share experiences, hopes and dreams for all of our children who have been diagnosed as being on the spectrum. On a more personal note, this was the first time since Elijah was born that he and I had not spent the night under the same roof , which apparently was more difficult for me than for him. (After Elijah greeted me with a huge smile upon my return, his comment a few minutes later when didn't get his way was, "Daddy, I think you need to go back to Pennsylvania.")

Eight weeks of summer camp are coming to a close, and though it has been for the most part fun (or at least as much as we can ascertain from Elijah's limited vocabulary), there have been some moments of angst. Having escaped the "terrible twos," we are now going through the "execrable eights." Tantrums, brought on by the excessive heat, exhaustion or both, have reared their head on a couple of occasions. Luckily, those moments have passed quickly and sweetness (or at least the relative sweetness of an 8-year-old boy) returns. It also appears as if a new vocation -- as a tattoo artist (see photo at right) -- holds some promise

for the little guy.

His social skills continue to be a work in progress. He's moving forward, but the steps are awkward, and he does stumble on occasion. One can sometimes see the frustration he feels as he attempts to say the right thing, which in itself is a breakthrough. His interactions with his new friend Janey range from total indifference (a step back) to taking turns while playing a game, talking with her and responding to everyday social activities (major step forward). A recent visit involving music, bouncing and slipping and sliding featured much of those positive endeavors.

With one more road trip planned for next month (a visit to Sarah's parents and a nature (ugh) trip to the Ozarks), Elijah's summer has been one of real movement forward. Though there have been setbacks (rote speech patterns, short bursts of anger and tantrums that seem to come out of nowhere) the past few months have been positive and fun for the little guy. He continues to do well on the piano, "mom school" is getting him prepared for second grade, and he has actually shown some interest in playing a sport. Elijah loves "Oh, the Places You'll Go," and when I saw that the Autism Speaks conference had the same title, I thought that was a good omen. I can also say today that though Elijah will never be a "normal" kid, with the progress he is making, the words "Oh, the Places You'll Go" mean a little more in my heart than they did before. It won't be an easy journey, but at least he's starting on a path.

Another round with Elijah

A busy summer for Elijah has started, and if the first month is any indication, it will be a successful one. The last day of first grade was also our departure date for a trip out to California to see family, friends and clients. Outside of the continuing battle with Mom over who got to use the new Nook that Sarah got for the trip, the little guy was happy to see Grandpa and Grandma and to stay at "the little house at Aunt Kathy's." A trip to the Santa Monica Pier provided an opportunity to play at the beach and ride both a Ferris wheel and the Scrambler. A round of mini golf, an early birthday gift for Elijah of a Lotso Bear (from Toy Story 3) from our friends Judy and Marko, and a party (with cake) for Grandpa's 86th birthday rounded out a very pleasant but too-short vacation.

After we got back home, it was time to celebrate Elijah's birthday. Since we were going to be out of town on his special day, we decided to celebrate a few days early. Uncle George and Aunt Julie came by to share in a giant birthday cookie along with Elijah's new friend Janey, who not only was in his class this past year but also lives just a few doors down the street. Elijah really enjoyed having Janey over, and with some newfound social skills, he insisted on getting her a fork for her piece of cookie. Later they went down to the basement and played games together, with Elijah fully interacting with her on a level that would seem run-of-the-mill to most but was something beyond what we had seen before with him. Perhaps it's because Janey seems to understand Elijah quirkiness so well (she told her mom that if Elijah is ignoring her it isn't because he's being mean, it's because his brain doesn't work the same way as hers) that Elijah is so quick and happy to share and be a real friend to her. One day at the park pool, Elijah told me with a big grin on his face that his FRIEND Janey was about to go down the water slide. Again, that may be routine for some, but it's a major step forward for Elijah.

After receiving his birthday gift -- a coveted Buzz Lightyear action figure -- Elijah was on the road again as we headed down to Springfield, Mo., for a work reunion (Sarah's old job was at the newspaper there), a birthday trip to a water park and cave exploring with Grandpa and Grandma Smith at Fantastic Caverns, the only drive-through cave in the United States. Elijah insisted on bringing not just Buzz, but all the other characters from Toy Story on the trip. Hopefully, the people in the hotel room next to us weren't too startled by laser blasts and calls from Buzz for Space Rangers to attack, especially when they took place at the crack of dawn.

The water park was a huge success for the little guy. For years, Elijah has refused to go down the water slides at our local pools (this made little sense, since he had no fear of jumping off the high diving board). But at the water park, he went down slide after slide, rode a lazy river (well, had Dad push him!) and had a great time. Of course, the rainbow lollipop that he wanted (and got) made it a true birthday celebration. And, as the result of our trip, the local water slides now have a new customer.

While all of this has been occurring, Elijah has been going to camp four days a week, meeting with a social skills tutor twice a week and taking piano lessons once a week. All these activities have had an extremely positive impact on the little guy. Camp has awakened a desire to go out and play tennis with Dad. The social skills lessons seem to taking hold and have led to proper behavior (on occasion). Elijah is doing so well on the piano that Sarah was roused out of her sleep on the 4th of July by Elijah playing a spirited version of "Yankee Doodle Dandy." Of course, none of this progress would be as advanced if it wasn't for Sarah's "Mom School" daily lessons, which include math, reading comprehension and piano practice, along with occasional geography lessons. Her efforts have easily magnified any gains the little guy has made.

The biggest news in recent days has been the loss of a front tooth that seemed to be on the cusp of falling out for weeks. After what seemed like an eternity, it popped out on the ride home from camp one day. At this writing the tooth right next to it is barely still attached and if it comes out the title of this blog could have a double meaning: A round of golf or the results of

a round of boxing (Think of Leon Spinks.)

Spring into Summer

Although there have been no real new milestones since the last post, that doesn't mean there hasn't been any excitement around here. School has been a steady stream of good reports and projects, with Elijah excelling on his spelling tests, getting bonus words such as "valedictorian," "subterranean" and "corduroy" (yes, I needed spell check for them!) correct. He has gone through his lunch account faster than we can replenish it by going through the entree line twice a day to get an extra Uncrustable (a processed peanut butter and jelly sandwich), which we have plenty of in the house (for which we paid 1/4 of what it costs him at school).

Most important, he seems to have been accepted as

part of his class, with his classmates (especially the girls) attempting to interact as much as possible.

As previous posts have mentioned, there is one classmate, Sofia, that Elijah is really fond of, and she is really sweet to him. His affection can be seen clearly in their class picture below, as everyone, with one exception, is looking at the camera. Yes, he told us, he was looking at Sofia.

Elijah did something else pretty cute involving Sofia. After he begged us to invite her over one Friday immediately after school, we reminded him that "Miss Nikki," the KU graduate student working with him, was coming over. Though her visits are always something Elijah looks forward to, with the constant "Is Miss Nikki coming by today?", nothing was as important as Sofia coming by to play. So Sarah e-mailed Sofia's mom to ask if they could come over one day -- and the big date turned out to be a day that Nikki was there. The thought of having Miss Nikki there when Sofia arrived was too much for the little guy. He tore through his lesson and, once done, told Nikki as he was literally pushing her out the door: "You can't be here when Sofia comes over." Heaven forbid his "women" were to cross paths! Nikki did meet Sofia, but once Nikki was gone, the kids had a great time together playing both outside on our swing set and inside in the basement (especially in the bouncy house). It was a great day for Elijah, and hopefully there will be more visits in the future.

As for Miss Nikki, it appears as if her work with Elijah is near an end. Elijah is doing an excellent job with her math program and has reached the levels needed for her to use the data. She has been great with Elijah, and we are going to miss her visits, though she has promised to keep in touch and be part of our Autism Speaks walk team, Elijah's Wanderers. As I have told her, and anyone else who has worked with and moved Elijah forward, I will always consider them part of our extended family.

Another recent event was the first-grade musical, presented for the entire school (during the day) and parents (at night). Although he constantly wandered off the stage (to get drinks of water, he later said), Elijah delivered his line and sang along with the rest of the first-graders. Of course, there was a little girl assigned to make sure he stepped off the risers at the right time (which she did). His enthusiasm for the show has continued -- he now recites and sings all the songs when the mood hits him.

It will be a very busy next few weeks for the little guy. Graduation from first grade, a trip out to see relatives in California, the beginning of his annual summer camp with Miss Tiffany (along with the continuation of his piano lessons with her), and a trip to a water park and cavern ride for his birthday. As to what he wants for his birthday, Elijah has made it known that at least TEN characters from Toy Story 3 (although he will settle for just a Buzz Lightyear, which has already been purchased) and markers are high on his list. Of course, with Elijah being Elijah, he made one other request for a gift, something he wants for his room. He drew a picture of it and gave it to us...a snack machine:

And, as the close-up shows, he had definite ideas about what should be in it... Oreos, M&Ms, and Crunch and Hershey bars are among the mix.

So if the next time you see us, we all seem to be a little heavier, I guess it will mean that Dad has given in again.

MARCHing Forward

While the last blog posting was about Elijah getting ready to tackle the piano, I can tell you that after just a few lessons, he has shown not only an interest, but some ability in tickling the ivories. Of course, like any child, he may soon get bored and decide that watching "Toy Story 3" for the hundredth time is more enjoyable, but with the efforts of Miss Tiffany (pictured with Elijah) and Sarah to keep him on track, I don't think that's likely.

Speaking of "Toy Story 3," we all enjoyed the Disney on Ice production of TS3 in which the first act retold the story of the first and second movies, with the last act dedicated to what happens to the toys once Andy grows up. Needless to say, the little guy enjoyed the show (though not as much as Mom did) and I'm sure all the fathers in the audience became much more engaged when "Barbie" (in tight blue spandex) became a lead character in the third act. We got away cheap at the souvenir stand (only a $15 program, which came with the requisite Mickey Mouse ears). Requests for every toy in the movie came only after we got home.

Though piano and Disney on Ice have been the recent highlights, a carnival for St. Pat's Day (with numerous SOLO trips on a scrambler ride, although Mom did join him initially) also contributed to our own March Madness. If we can get through April and May with just the normal craziness, a scheduled birthday trip that includes both a cavern ride and a water park visit should make the month of June a fun one for the little guy.

Doing the Elijah Cha Cha

Living with Elijah is like a day at the dance studio. Two steps forward, one step back. As long as the movement is always forward we can do the shuffle, but while it can be exhausting, it is never dull.

On Super Bowl Sunday, a friend of Sarah's came by with her two children. Elijah eagerly awaited their arrival (this was the same family who visited us for fun in the snow -- see the previous blog), and he happily played with the boy, Quinn, for quite a while (step forward). When Quinn and Elijah started to play a video game that Elijah hadn't played before, Elijah got frustrated and announced that he was going to his room (a step forward and also a step back -- the retreat to the room was bad, but the fact that he felt embarrassed by his inability to play the game was an emotion we had never seen and was actually a good sign). A few moments later, Elijah emerged from his room and continued to play until our visitors went home.

That same week, a parent-teacher conference yielded both good and not so good results. Again, all the people working with Elijah at school told us how much they loved him and what a incredible little guy he is. (I'm not naive enough to think that ALL the parents aren't told that, but with his joyful personality and his love for school, I think there is a lot of truth in their feelings.) In terms of his work and where he stands with his peers, Elijah appears to be all over the place. Sometimes his assignments and journal entries are correct and proper, while other times what was asked of him and how he responded have absolutely nothing in common. Yet, unlike many autistic children, he constantly seeks to interact with peers and teachers (on his terms, of course), so it appears that his socialization skills are at least moving in the right direction. Also, his memory for detail is another source of wonder, as his teacher and specialists marveled at his abilities to remember every announcement, incident and object placement in the classroom. The cha cha continues!

Last week at a classmate's birthday party, Elijah happily greeted and interacted with classmates and climbed the rock wall at the facility. Since we have never seen him even attempt do this at our fitness center, both Sarah and I were very happy and looking forward to the fact that he would have the opportunity to show off that skill the next night as we would be taking advantage of our club's "Parents Night Out" to see a movie while leaving Elijah at the club to play, swim and climb. After dinner and the show, we returned to pick up Elijah and were told that the swim time had ended a little sooner than expected because someone had decided to use the pool as a toilet -- and our little guy had happily volunteered that he had been the culprit.

Needless to say, the ride back home was a bit tense until Elijah realized what he had done was wrong and wasn't something to laugh about. But then, the next day, after we had gotten a written apology from Elijah for the club, the story changed. Elijah told us it wasn't him, that he had just said that because .... well, just because.

You may think he was just trying to shift the blame, but a similar incident occurred a few weeks back. An employee from the club's child center came to get me from the workout floor because Elijah had insisted that he had soiled his pants. When I got there and checked him out, it was obvious that wasn't the case. When I asked him why he had said that .... well, I still haven't gotten an answer. My guess is that he wanted more attention from the girls working there and knew this was a way to get it.

It's been years since he's had a verified "accident," and he always announces to everyone and anyone that he needs to use the restroom, so I really don't think he was the culprit. A step back, at least in terms of his ability to communicate accurately.

A more positive moment occurred just last week. Elijah has been working with a graduate student at the University of Kansas as she, for her advanced degree, is teaching him math as part of a research project into how best to teach children with autism. (In a prelude to this, the teacher, "Miss Nikki," taught Elijah about vegetables, so he now can point out artichokes at the grocery store with great excitement.) The sessions were held here at the house, and Elijah always looked forward to Nikki's visits, asking, "Is Miss Nikki coming today?" and always smiling broadly when the answer was yes.

Then we found out that the music therapist who runs Elijah's summer camp had an opening for piano lessons -- on one of the days each week that Miss Nikki visited. We've been trying to get him into piano lessons for a long time, and we couldn't pass up the opportunity. This led to a farewell to Miss Nikki, and it was sad to say goodbye. Piano lessons, step forward .... losing Miss Nikki, a step back.

Then the challenge became finding a piano or keyboard that the little guy could practice on.

The music therapist advised against using the small electric keyboard we have, because it doesn't have "weighted" keys -- no matter how hard or soft you hit the keys, the tone is the same. For someone on the spectrum (and maybe for everyone) the need to hear the difference in sound by the force of the key being struck is very important.

Incredibly, Sarah found someone willing to give us a piano, which was moved to our house today. And we received an e-mail from Miss Nikki telling us that after speaking with her advisers, she had received approval to continue working with Elijah on a different schedule, so piano lessons could be accommodated. At the first lesson after Miss Nikki returned, Elijah got, for the first time, 100 percent correct on the teaching portion of the session. BIG steps forward!

Another first came last week, as Elijah put on roller skates for the first time at an after-school skating party -- an event that in the past might have caused some anxiety for the little guy. But as I have mentioned earlier, his class seems like a pretty special group and once he saw his classmate Sofia, all was well. (Although Sarah realized that ice-skating expertise does not transfer into roller-skating skills, even if you were a great roller-skater in your youth. Her time on the rink was very limited.)

The little guy is very excited about his upcoming lessons -- he wouldn't even wait for Sarah to clean off the piano before he sat down and tried it out. And who knows? Eventually, maybe he'll be able to produce his own soundtrack for his ever-changing dance steps. Hopefully, they'll all be forward!

Time Passes Slowly

We're not even a month into the new year, and I really think it's going to be a hell of a year! For those of you who follow this blog (and yes, Sarah, there are more than family among our readers), I have never mentioned either my occupation or my employer, and that's not going to change today; but I will say that I moved on to a new employer (my choosing) and I couldn't be happier. It was as if the clouds parted and allowed the sun to shine through. Combine this news with Sarah's success and happiness with her self-employment venture, and I relish the coming year.

But the real reason I believe 2011 will be special is, of course, Elijah. Although sometimes it feels as if his autism is dominating his brain (his insistence on telling everyone he meets to"smile with your teeth" is wearing thin), he continues to show growth in all aspects of his socialization process. Every morning, as he bounds out of the car at school, he will greet any adult or classmate he sees. At a Cub Scouts meeting, he interacted with everyone he knew and enjoyed himself so much that we are participating in the "Pinewood Derby" for toy wooden cars this weekend. On the mornings I can't take him to school, he happily catches a ride with our neighbor Doug and his daughter, apparently yakking it up the entire way there.

But to me, the real show of progress was his request (actually, insistence) that two children he played with on New Year's Eve come over to his house for a playdate. A former co-worker of Sarah's who has a boy about a year younger than Elijah (and a little girl less than 2 years old) invited us over on New Year's Eve. Elijah, who had gotten to know Quinn during the past few summers at the local park pool, was very excited about going over to the house and counted off the days until the big event. When we got there, an added surprise, a little girl cousin named Zoey, was also there. After a little bit of getting-to-know-each-other time, the three played all evening long, which allowed the adults (there were eight of us) to relax and enjoy each other's company.

The next day I asked Elijah if he enjoyed playing with Quinn and Zoey, and not only did he reply in the affirmative, he asked if they could come over to our house to play. I could count one hand, with fingers to spare, how many times that has ever happened. Needless to say, I was overjoyed and insisted that Sarah start the process to get this done. When arrangements were finalized we put the date on Elijah's calendar and, as the date neared, he eagerly counted down the days.

Unfortunately, it appeared as if Mother Nature would put a crimp in our plans. Seven inches of snow had fallen a few days earlier, and now the weather forecast was calling for another four to five inches the day our guests were due to come over. Thankfully, the local weather people were as accurate as they always are, and all we got was a little dusting in the morning. Elijah was so excited he climbed up on a chair to move the clock hands, as if that would really make them come any earlier. (He mistakenly turned the hands back rather than forward, so it appeared to Sarah that the batteries had gone dead, and she insisted I change them.) When the young guests finally arrived, it was almost three straight hours of jumping, laughing, playing musical instruments, sledding (our backyard has a hill) and finally, cookie eating. It was a complete success!

These pictures may seem to be nothing but some kids playing together in the snow, but that's what makes them so wonderful to us. That Elijah not only asked for Quinn and Zoey to come over, but actually played and laughed with them, is an incredible milestone, one which I'm sure we'll be repeating soon. Yes, it's going to be a great year!

No U-Turn on this gift idea

When you ask Elijah a question, there is a chance you might get a response, and on occasion, that response may actually relate to the question being posed. But when asked what he wanted Santa to bring him, Elijah told us without hesitation, "an International Sign Set and all the Sharpies." No surprise there. Any type of marker is always on his wish list, and anyone who has read this blog or gotten to know Elijah knows that outside of his obsession with basketball courts (which is off the charts), traffic signs are always on his radar. So, when Christmas morning arrived, under the tree with some games and books were his requested gifts from Santa. (A quick shout-out to all of the relatives who again contributed to Elijah's camp fund as his gift. Your generosity is very much appreciated, and no gift can mean more to him in the long run.)

As Elijah surveyed his haul, his eyes immediately locked in on a box marked "To Elijah from Santa."

"I want to open my International Sign Set now!" He knew the size and shape of the box -- Santa needn't have even bothered to wrap it. So much for that Kodak moment of surprise upon opening the gift.

But his smile upon seeing the signs and putting them together was worth a picture. The Sharpies also drew a big smile, but the fact that he is not allowed to draw basketball goals with them has tempered some of his enthusiasm. And since he can't go an entire day without drawing basketball goals, we hear, "Can I draw basketball goals not using the Sharpies?" on a regular basis. Ahh ... progress.

Sarah's parents came for the holidays, and it only took one morning of a 4 a.m. wake-up call of "Daddy, can I go downstairs?!!!" to drive Sarah's mom to Aunt Julie and Uncle George's house. So when Christmas Day came around, all four of them came by and brought Julie and George's gift -- a pad and software that allows Elijah to use a pen instead of a mouse while using the computer. Of course, while we all floundered (well, not all of us - George is an IT specialist), Elijah soon mastered his new device.

From reciting the Hanukkah prayer to insisting on decorating the tree, Elijah was completely engaged this holiday season. His insistence on driving through neighborhoods to see light displays (and not basketball goals) was also a nice change of pace. His joy at calling out the numbers while playing bingo and interacting with kids at holiday parties and social situations brings to mind what has became his "catchphrase" these past few months. Whenever he sees someone, Elijah insists they "smile with their teeth." When I look back on this past year with him, and how far he has come, it's a pretty easy request to fulfill.