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.

The Most Wonderful Time of the Year

It's been nothing but smiles and happiness around here for the holiday season, and the little guy is the main reason. Elijah continues to show great progress, and both Sarah and I couldn't be happier. From dropping him off in the morning at school (where unprompted hellos to teachers, fist-bumps with the principal and smiles for classmates are the norm) to picking him up in the afternoon (when, according to Sarah, hugs from classmates signal the end of the school day), it seems as if first grade is first-rate! Without any help, Elijah gets his lunch each day in the cafeteria and eats with his classmates. (Although we have discovered that his favorite item, the "Deli Sub," is nothing more than a piece of turkey and a piece of American cheese between two slices of white bread. Drool, drool!). For most parents, these moments may not signify all that much, but for us, it shows incredible growth.

School is just one example of how things are different this year. In previous years the holiday season meant as much to Elijah as the start of hunting season .... nothing. Last year he seemed to get the holiday idea somewhat as he asked for gifts from Santa and lit Hanukkah candles (of course the fact that the latter included chocolate coins made it all the better). This year, however, he is in full holiday mode. On Thanksgiving, he devoured turkey at two different settings (at home and at Uncle George and Aunt Julie's) and shared with Grandma Smith turkeys he had drawn. Then, after insisting that the packed-away Christmas tree be brought up from the basement, he proceeded to decorate it like a true professional, or at least like a professional 7 year-old. (Most of the ornaments were on one side, all of them about his eye level, with no rhyme or reason to his pattern.)

Then the menorah was filled with candles, and when I tried to explain that only one candle is used on the first night, Elijah insisted that all eight be lit. It appears as if a new Hebrew tradition is being started in our home -- start with eight candles on the first night of Hanukkah and work your way down to one. But hey, a miracle is a miracle any way you look at at.

Elijah's artistry has taken a new path as he now uses the Paint program on the computer to create pictures that sometimes convey a story arc, but more often are images like the house pictured here.

Add to all of this activity Elijah's happiness to go weekly therapy sessions with "Miss Nicki" and his joy when we go to the gym (he gets hugs and kisses from the girls who work there), and what you have is one very happy and rambunctious little boy, full of life and expressing it both in words and actions. A very wonderful time indeed!

A Lost Tooth, but Not a Lost Cause

It has been a very exciting couple of weeks here as Elijah has FINALLY lost his first tooth, waiting until he was 7 years old. After a few days of pushing against it with his tongue, the big moment occurred while he was at school, which meant he not only lost a tooth, but also gained a certificate, signed by the nurse, announcing the occasion. That night the Tooth Fairy, taking into account the rate of inflation and the tough economic times we are in, replaced the tiny tooth with two dollars and a note telling him to spend the money on anything he wanted. Elijah, being Elijah, used the money to buy a clipboard on which he has been practicing his spelling test words for school. Practical and educational...that's Sarah's genes, not mine!

Losing a tooth was not the only notable event that occurred at school recently. Sarah, concerned that some children were making fun of Elijah, wrote his teacher about it. Since bullying is such a hot-button issue at schools these days, his teacher suggested that a way be found to educate his classmates about Elijah's autism. She asked if there might be a book she could share with the class and help them understand why Elijah acts the way he does sometimes.

Dad took to the Internet and found a couple of titles that could be used. One of them, Looking After Louis, was a perfect fit. The main character, Louis, who is autistic but still mainstreamed at a public school, had many characteristics that were similar to Elijah. Louis has an adult sit with him in class, mimics the teacher and has wonderful artistic skills. He wants to play with the other boys but doesn't seem to comprehend how to do it. The narrator of the story is a little girl who is a classmate of Louis and wants to be his friend but can't understand why the rules don't seem to apply to him. At the end of the story, the children begin to see, through his art, how special Louis is and play with him like they would any other classmate. As a father of a little boy with autism who hopes each day that his son will be accepted by his peers, I admit the ending brought tears to my eyes.

But what would Elijah's classmates think? His teacher, with the assistance of the school counselor, read the book to his class while Elijah was out of the room. (His absence was not an unusual occurrence, as Elijah, who reads at a very advanced level but has trouble comprehending what he reads, goes to a reading skills room at least twice a week.)

According to the teacher and counselor, the class really seemed to understand and wanted to help. (I must give praise to Elijah's teacher whose incredible enthusiasm is only equaled by her and the counselor's empathy for Elijah's situation. They are both doing a wonderful job.) A sign-up sheet was posted for members of the class to be Elijah's "recess buddy" (it would involve playing with Elijah for the first 10 minutes of recess) and it looked like every one of them signed up to do it. Not only that, at the school book fair, at least four of his classmates made a beeline for him to say hello, with one little girl insisting that her mother, who was volunteering at the checkout area, stop what she was doing so Elijah could be introduced to her. And each greeting to Elijah was returned by our little guy with his eyes looking at the person, and if it was a female classmate, a smile from ear to ear.

Sarah and I have often said that we are lucky to have Elijah in the school system he is in, and his progress has borne that out. When we drop him off in the morning and he gets out of the car with a huge smile while running for the front door, sometimes laughing with another student, he looks like any other typical first grader. What more can a parent ask for?

Hold that Tiger

Just like the proverbial Jewish wedding, Halloween seemed to go on forever this year. Because parent-teacher conferences were scheduled for the end of the week, Elijah's school costume party and parade was held on the Wednesday before Halloween. Usually Elijah's costume is something that is bought at the last minute because of a complete lack of interest on his part. Since Star Wars and ninjas are as foreign to him as they would be to a child in a Third World country (no, that's wrong -- a child there would be more likely than Elijah to know who Luke Skywalker is), the costume-selection process this year seemed destined to be futile.

But that wasn't the case. As we went costume-hunting, Elijah shocked me by saying, "Daddy, I want to be a tiger." This was a first. Not once had he ever WANTED to be something for Halloween. My excitement was tempered, however, when I discovered that the only tiger costumes available at any local store were for either infants or women with very small waists and very long legs. Thank God for the Internet! A Google search found a costume store in New Jersey with the perfect tiger outfit, and a delighted Elijah soon had his costume, which he loved wearing and which was big hit with other felines in his class.

That was just the first time that week he wore the stripes. On Saturday, the day before Halloween, our health club held a "Spooktacular" that had all sorts of activities (including face painting, a bounce house, pumpkin decorating and pony rides) for kids. The little guy had a great time.

At last the big night arrived, and after some hugs from a very cute "Cat in the Hat," Elijah was ready to collect candy. Trick-or-treating with Elijah used to be a very quick experience. The first couple of years, it was two or three doors and then back to the house. Then last year, he realized that the more houses he went to, the more candy he would get, so we would go door to door until he would get a large candy bar (usually a Crunch Bar), and then he'd want to go home immediately to devour his gains. This year was different. He was on a mission to get candy, and lots of it.

As I tried to explain to Elijah, first you ring the doorbell, then you say "trick or treat," then allow the person to put some candy in your pumpkin (bag). You don't grab. And you thank them. Well, even the best-laid plans ....

At the first house we went to, our neighbor told Elijah to "grab as much as you want." Though he didn't do it then, the thought stuck with him, and it was a constant battle at every succeeding house as his hand reached out for the bowl brought to the door and he tried to grab a handful of candy. That was the only real problem of the night (if one doesn't include the fact that Elijah would ring the doorbell and say "trick or treat" at almost the same time, which led to many awkward moments of silence when someone finally opened the door. But at least he always said "thank you.")

We went up and down the blocks in our neighborhood and collected lots of candy before the little guy announced he wanted to go home and eat some of his stash. The first thing he devoured when we got home was a large Hershey Bar given to us by one of our neighbors, who also happens to be our dentist. Do you think there is a connection there? As Elijah's chocolate- smeared face shows, it was a good night to be a tiger.

It Was a Beautiful Day

The words of Bono and U2 couldn't be more apt for the Walk Now for Autism Speaks event this past weekend. From the weather, which was double the temperature from last year, to the turnout of walkers and volunteers, it was a great day at the Kansas Speedway.

Of course even great days with Elijah can have some stress to them. I had left early to help the committee get things ready at the site, so I was unaware that Elijah had informed Sarah he wanted to finish the Microsoft Word project (probably recreating some signage he had seen) he was working on and didn't want to go anywhere for the foreseeable future, even if it was an outdoor party. However, after some arm twisting (verbal, not literal), the little guy and Sarah were on their way.

While all of this drama was occurring, I was helping the volunteers get situated and seeing if the vendors needed any help getting set up. It was a nice feeling to see a constant flow of people coming to the main area, all of whom volunteered to help Walk Now for Autism Speaks. Yes, I knew that some did it for community service credit at school, while others had been asked (coerced) by their company to be there, but whatever the reason, they all seemed happy and eager to be part of the Walk experience.

When Sarah and Elijah arrived I could tell it had been a stressful ride. I told Sarah to go relax and have something to eat, while I took the little guy around. Our first stop was to see Miss Tiffany, who ran the summer camp Elijah enjoyed so much and was a vendor at this event. The second he saw her, a huge smile ran across his face (and hers too!) followed by hugs and even more smiles.

Right after that we ran into two of the employees of the children's center at our health club, Ali and Christian, who had signed up to walk with us. That brought another big smile and a question for them from Elijah: "Where's Kelsey?" Kelsey was the third member of health club contingent, the first one to sign up to join us, and to be honest, Elijah's favorite. (Although for the last few weeks, Elijah has been telling Katie, who works the front desk, that she looks beautiful and he would like a hug from her. When I reminded him that he had told me that Kelsey was his favorite he replied, "I like Kelsey, but I love Katie P.")

After being delayed by traffic, Kelsey arrived, and that brought the biggest smile of the day from Elijah. After the girls made Elijah a bracelet with his name on it (more on that later), we set off with about 8,000 others to Walk for Autism Speaks. All during the walk Ali, Christian and especially Kelsey interacted with Elijah so much that not once did he ever whine or complain about walking. What makes events like these so special for me is to see such a large crowd and know that no one is judging your child as if they were different, but instead understanding your family and what they go through on a daily basis -- that there is a community out there for support. Yet, as wonderful as that feeling was, for me that wasn't the most memorable part of the walk. What I found extraordinary was the number of spectrum kids and their parents who knew and greeted Ali, Christian and Kelsey and the genuine affection that both sides shared for each other. What a wonderful sight to see! It made me very proud to have those three on Elijah's team.

Once the walk was over, Sarah took the little guy home and I helped volunteers and committee members clean up the grounds. Little did I realize a crisis of major proportions was brewing at home. The bracelet that Ali and Kelsey had made for Elijah, the one he had proudly worn all throughout the walk was, as he discovered later, missing two foam letters from his name. The magnitude of this trauma was expressed to Sarah through teary eyes and breathless crying that was more intense than when he got his first shot.

Upon my arrival home, I was instructed by Elijah that I needed to immediately go back to the walk area, find the missing yellow "L" and "H" and bring them home. Obviously that wasn't going to happen, so a "plan B" was devised. A trip to Hobby Lobby to buy a bag of foam letters (along with a chocolate chip cookie) turned out to be our solution. The bracelet was made whole again and the memory of the happiness and joy of the afternoon festivities was quickly restored.

Any day that can have as many hugs and smiles as this one did is truly a beautiful day and one I hope we can wander through again.