Journey With Julian

Jared was in the middle of the dance floor displaying his impressive dance skills with an energetic performance of  “The Dougie”.   Ask the nearest teenager, he or she will educate you.  Julian was standing in the rear of the room with his mom.  This was a birthday party for the son of two of our closest friends.

Martina and I, being the cool(wink-wink) adults we are, were asked to be chaperons for the party.  I sat in a dark corner, which is where all chaperons live at such affairs, with the birthday boy’s father, my friend Reggie.  My gaze was back and forth; between Jared’s moment of social glory and Julian’s distance, socially and physically, from the reveling teenagers.

While hip-hop music was blaring from the sound system all I could hear, as I looked at my eldest son, was that 1970′s searing paean to teenage awkwardness, “At Seventeen” by Janis Ian. There he stood; handsome, well-mannered, considerate, socially disconnected, watching from the sidelines as his fellow teenagers celebrated with dance.  Being a teenager is hard enough, add autism to the mix.

My seventeen year old son stood there and I hurt for him, longing for a magic wand to wave and turn him into just another fun-loving teenager at the party.  As my tear ducts started to open up I turned away.  As I began to compose myself  Reggie tapped my shoulder to draw my attention to Julian.  He was dancing! Martina was right there with him as they turned the refreshment area into, in my mind, the home of the spotlight dance.

It was a choreographed hip-hop routine Julian had learned two summers ago during a wonderful six-week program(WELL) for teenagers with high functioning autism.  I can’t fully express the joy we felt as we watched his group’s dance recital at the end of that camp.  Julian had fully committed this routine to memory.  Despite the difficulties he’s had recently, because of his regression, he was the picture of precision. The hand gestures, the slides, the head bob, he had it down.  And there was his smile.

This reminded me of the mysterious and amazing quality of the mind of a person with autism. Though many, previously ordinary, functions had become a challenge for Julian,  he was able to quickly recall and execute that dance routine, with the attendant enthusiasm.  All it took was prompting from Martina.

A study conducted at Ohio State concluded that, in certain circumstances, persons with high functioning autism have better memory performance and higher memory capacities than the rest of us.  I suspect continued research into autism will eventually help us better understand new ways to tap into the potential of the human brain.

Meanwhile back at the dance, led by Martina and our dear friend Ranota, Julian had found his way to the dance floor.  There he was amid the rest of the teens dancing, beaming and shaking his groove thing.

You go son.

Julian and I were walking through a hospital lobby the other day, he had a doctor’s appointment, and as we passed people he constantly waved, to everyone! This is born out of early efforts by Martina and me to get Julian to engage with other people, something that can be very difficult for persons with autism to accomplish. Well, it stuck and Julian now greets most everyone with a smile and a hearty wave. 

Though this is a positive sign that Julian is returning to his old self we’ve told him that he doesn’t have to wave to everyone he sees. Last week, while attending his brother’s basketball game, Julian waved to a gentleman standing next to us as we entered the gymnasium. The man, a complete stranger, returned the gesture with a confused look, as though he were looking at an oddity. If, as was the case with this man, you don’t acknowledge the wave, sometimes, Julian will continue waving until we tell him it’s okay to stop.

After our visit to the hospital I’m not so sure that we should try to curtail this genuine greeting. As we neared the end of the lobby an elderly lady sat in a wheelchair, apparently awaiting someone to tend to her. She looked very lonely, the lobby was bustling with activity, people coming and going. However, there she sat, not able to keep up, it was as though the world had somehow forgotten she existed. 

Julian waved to her, said hello and her face lit up. We stopped to chat and were treated to a very enjoyable visit. She was waiting for a relative to pick her up and bring her home. In the span of about ten minutes we found out she’s a retired teacher, an avid reader of Harry Potter books, a huge college basketball fan and, most of all, loves being around children.

As we said goodbye she took Julian’s hand in hers and thanked him for making her day with that warm wave and beautiful smile. Watching the two of  them in that brief moment reminded me that we have, at our disposal, the ability to enhance other people’s lives simply by the way we treat them. No matter how brief the encounter a hello, a smile, and yes, a wave can make a difference. Even if only for a moment.

I asked Julian why he feels the need to wave to so many people. His reply was typical Julian.  “Because it’s nice”.  Son, you can be nice anytime you desire.

Julian stared intently at his grandmother. I hadn’t seen that level of focus in his eyes in quite some time. His maternal grandmother, Mrs. Ruth Kendrick, lay just a foot away from him in a hospice bed, laboring to breath. She would end her marvelous and impactful eighty-nine years on this earth a few days later on New Year’s Day. Death had visited Julian’s world.

It was hard to know exactly what thoughts were racing through his head at that moment. Since his setback, he hasn’t been very talkative or forthcoming. It takes persistence and patience to get anything out of him. Before averting his gaze, after about a five-minute study of his grandmother, his brow furrowed and he mumbled something to himself.

Later, in a quasi-urgent mode, he asked Martina if he was going to die.  Let’s pause and remember that Julian is processing this in a manner none of us really understand.  Remember, unless otherwise prompted or instructed, persons with autism rarely spend very much time pondering matters beyond their realm of interest.  Though we went to the funeral of a dear friend’s daughter back in June, death just wasn’t a topic of discussion with him.

Martina’s answer?  She explained to him that he has a very long life ahead of him and went on to point out that his grandmother had lived a long time and was now at rest after a sustained illness.  We’re not sure if that answer satisfied him but he didn’t, voluntarily, return to the subject again even after we told him she had died.

I wanted to know how much of this he had absorbed so I sat with him Sunday, in his room, and gently prodded.  Did he realize that he would never be able to speak with, hug or kiss her again in this life?  What came to mind when he thought of her?  What did he say to himself that evening at her bedside?  Were there any questions he had about life and death?

Well, it probably will not surprise you to learn that Julian offered very little in the way of answers.  In response to what he would remember about her, he replied,”Love”.  Simple and heartfelt.  When I pressed him for more, he said ”Pork Chops”.  I initially thought that odd  until he added, “Christmas Eve”. You see his grandmother’s tradition was to hold a Christmas Eve dinner at her house.  She always prepared an amazing meal, for Julian the pork chops stood out.  Funny I don’t remember the pork chops, for me it was the lamb.

Julian and his grandmother each played a role in ushering the other into a new aspect of their respective lives.  When he was a toddler fidgeting in church one day, she pulled out a piece of paper and pen and suggested to Martina that this might help occupy him until the services were over.  Well, as most of you know, that opened the door to one of Julian’s gifts.  His ability to draw.

As for how Julian figured in a new stage of her life?  Six years ago, she was beginning to show early signs of Alzheimer’s, which would eventually take her life.  Martina and her siblings had been discussing ways to introduce the subject to their strong-willed and fiercely independent mother.  That Christmas Eve, we gathered for a family picture after the aforementioned traditional dinner.  As we awaited the photographer’s signal Julian, who was seated next to his grandmother, turned to her and asked, “Are you having memory problems?”

The silence was deafening. We all waited for what seemed like minutes but were only seconds.  She looked at her grandson, smiled and replied, “Well buddy I guess I am”.  She knew full well that his autism didn’t provide him with much of a filter and this was something he’d overheard.  Why he asked that question at that moment?  I have no idea.  But he did and the topic became easier to bring up as Mrs. Kendrick and her family began what Maria Shriver has aptly called the long goodbye.

 I think Julian, in his own way, understands what has happened.  Maybe that evening, as he sat near her, in his own way, he was saying goodbye.

Earlier this week I was speaking to a class of second year dental students who wanted to better understand how best to serve patients with autism. After my talk one of the students pulled me aside and, with obvious sincerity, wanted to know how long it took for my wife(Martina) and me to become “okay” with Julian’s autism.

As I began to answer, explaining the trajectory of emotion, thought and action I realized that not only were we “okay” with it but we were thankful.  Not because of the autism but because of Julian and who he is, autism included. You see, this Julian is the only one we know, the one we love and cherish unconditionally.

Despite the considerable obstacles and challenges that a life with autism entails our daily life with Julian  is dominated by smiles, laughter and hugs. Granted it requires a greater effort on the part of Martina, Jared(our youngest son) and me to always be mindful of  the prism through which Julian views and understands  the world. To a certain degree, isn’t that the case when trying to navigate most family dynamics?

Julian has this innate ability to make me feel better, no matter what the day has brought. The sound of his voice, his smile  or embrace is enough to set me on a better course. I’m not alone in this, he has the same effect on Martina and I suspect, though he probably wouldn’t admit it, Jared.

This brings to mind some thoughts from Albert Schweitzer. The medical missionary, philosopher and noble laureate believed that we all possess an inner fire that sometimes goes out. It can be reignited by an encounter with another human being. Dr. Schweitzer concluded that, “We all should be thankful for those people who rekindle the inner spirit.” For me, that’s Julian.

This morning I was sitting in our den pondering some issues I needed to resolve when, in walked Julian. Frankly, I wasn’t in the best of moods. We began to talk, since it was Thanksgiving I asked Julian what he was thankful for, he said family. When I queried why he smiled, as if I should already know the answer, and said , “Because  we love each other .” With that simple and  genuine  response he immediately took me to a better place.

As you gather with those that you care about this Thanksgiving take a moment to recognize the one that rekindles your spirit, your Julian, and be thankful that he/she, or maybe they, are part of your life.

If you’ve followed this blog then you are well aware that it’s been nearly two and a half months since my last entry. It’s not out of a lack of things to share about Julian, quite the contrary. It’s just that, well…the last ten weeks have not been easy for Julian. Each time I sat down to write about him, I couldn’t. It was too emotional for me.

You’ll recall(from an earlier post) that Julian had a setback earlier this year, one that brought on a noticeable change in his behavior and demeanor. It’s proven much more challenging for him to get back to his former self. He’s stopped drawing and no longer searches for information on animals on the internet. His speech has even changed to a pitch similar to that of a small child with the use of very few words.

The walks, through our neighborhood, he used to enjoy are no longer part of his daily regimen. It’s as if he’s withdrawn into a world inhabited just by Julian. His routine, upon getting home from school, is to retreat to his room with the television usually on Animal Planet and his favorite toy, a well-worn stuffed Simba(from the Lion King), that seems to provide him with a measure of comfort.

He’d become so disengaged from school that we recently had to place him in a specialized school that fits a child with his specific needs right now. This overall apathy, something that doctors have told us is not uncommon for someone recovering from a setback like he had, has even manifested itself in the way he walks. His gait is now much slower, no matter what the circumstance Julian takes his time, maybe that’s not such a bad thing.

This new stage has required even more intense oversight of his daily routine. If I tell him to brush his teeth, after dinner, he will reply, “Yes sir”. Once upstairs I’ll call after him to remind him about it, his reply, again, is ”Yes Sir”.  However it’s not until I go upstairs and guide him into the bathroom to brush his teeth is the task actually accomplished. He’s not being recalcitrant, it’s just the nature of where he is right now.

There is a pleasant irony to this more insular Julian. He now wants constant hugs. Not just from Martina(my wife) and me but also from his younger brother Jared. The latter part of that is funny because before, Jared, like most brothers, served as a benign irritant to his brother. Martina and I would often hear  refrains, from Julian; “Leave me alone Jared!” “No Jared!” “Stop Jared!” echoing through the house.

Now Julian regularly wraps Jared in long embraces and tells him he loves him. Watching our youngest progeny start squirming after about sixty seconds provides us with delight. If the “old” Julian could see the “new” Julian doing this he wouldn’t believe his own eyes. Not more than five minutes can go by, when we’re with him, that Julian doesn’t want to hug one of us. That is never bad.

As anyone, that loves someone with autism, well knows there is no roadmap that clearly lays out the journey before you. You just have to hold on to each other and do all you can for that special person. Martina likes to say, “If Julian has a smile on his face then we’re moving in the right direction.”

We still do many things as a family;a Saturday afternoon at the state fair, a college football or basketball game, family movie night, an outing to a museum and eating out together. While it appears that Julian may not be as involved as he once was we know he’s taking everything in, in his own way, and enjoying it all.

A few nights ago Martina and I were seated at the kitchen table discussing Julian when, out of the corner of her eye, she noticed him, in the next room, hovering close enough to listen in on our conversation. That told us that he is not only aware but interested in what’s happening, especially as it pertains to his life.

So sometimes, it is very hard, but there is hope, something we all should maintain in our lives. Julian always seems to give us a dose when we need it most. To quote Martina again, “Our son is still in there, I can see the light.” She’s right, we just have to follow its path.

It was seventeen years ago on this very date(August 31st) that I first met Julian. Early that afternoon he was born and, immediately, forever changed my world. As I held him I searched his eyes for some measure of recognition, some tacit acknowledgement that we would be forever bonded.

Obviously that’s expecting quite a bit from a newborn. Despite that I began talking to him as if he understood everything I was saying. I promised that his mother and I would always be there for him and that we looked forward to watching him grow , hearing his laughter, sharing his tears and taking a journey with him.

As most of you know, that journey has taken us down an unexpected path. One that has produced moments of pure joy, interludes of heartache and (most of all) a wonderful tutorial on the true values of  life. Julian’s approach to the world has really taught me that the rough times are never as bad as we think and as long as we press on, just as he does in life with his autism, we will emerge smiling.

When Martina asked him how he wanted to celebrate his birthday he didn’t respond with a litany of potential gifts. He just said he wanted us, his family, to go to dinner at his favorite Chinese restaurant. That’s it, nothing else.

So tonight the four us will dine on low mein noodles and orange chicken. I can’t help but feel moved by him, imagine a seventeen year old choosing to spend time with his family on his birthday. After a bit of persistence Martina did get him to say he wouldn’t mind a dvd of a Disney movie. Dinner and a movie, Julian style.

As I dropped him off at school today he smiled and told me he loved me. I swear I saw something in his eyes(a sparkle of recognition) that reminded me of that afternoon seventeen years ago. Maybe it was all in my head. If so it’s because Julian put it there. 

 Happy birthday son.

Recently Martina(my wife) and I were having a conversation with our son Jared about the significance of embarking on his high school journey. In a few days he will begin life as a 14-year-old freshman. We discussed how this period would be the foundation for his path to college, which would, in turn, help map out his early adulthood.

Julian was not in the room at the time but he did overhear the conversation. Later that night, as I sat chatting with him in his room, he posed the question. “Dad, what will my life be like?” Almost reflexively I countered with “It’ll be great!”   That was not sufficient. “What will I do? Will I be happy?”

Julian has witnessed much of our (ongoing) dialogue with Jared regarding what he’s capable of achieving, in life,  if he fully prepares himself. He (Julian) is acutely aware that we don’t have the same conversations with him, at least not at the level of intensity displayed in some of our “back and forth” with our bright and, ahem,  ”self-confident” youngest progeny.

While Jared tackles ninth grade Julian will continue his steady and specifically designed curriculum. He will turn 17 later this month. He knows that many of his “age” peers are in full “college pursuit” mode. We’ve stressed to him that the only thing that matters is that he’s happy and continues to move forward.  At some point, time is not an issue, he will get a high school diploma.

We strongly feel that there is more education in his life beyond high school. Because of his spirit and desire to do well, I’m sure of that point. Julian knows that his autism will lead him down a less traditional path in life. That doesn’t automatically mean less fulfilling or meaningful. Just, as all of us who love someone with autism realize, different. 

A close friend has noted several times that he thinks Julian’s wonderous imagination, love of animals and ability to draw could give birth to some very enjoyable children’s books. I agree and have actually asked Julian if he would like to collaborate with me on a book.  He could provide illustrations and we’d write the story together.  He’s still thinking about that one. No hurry. I’ll keep you posted.

So, how did I answer his other two questions that night? Well, I admit to not being prepared for his follow-ups, usually a quick answer of affirmation is enough to satisfy him. I asked him what would he like to do. He talked about animals, going on safari and animated movies. I told him he already had certain gifts that would lead him to something that would make him very happy and that we would make sure he had every opportunity to succeed on his terms.

I also told him that his mother and I expected him to do well. He looked at me, recognition on his face and said, “Like Jared?”  “Yes, son just like we expect from Jared.”  With a heart stealing grin he answered, “Cool”.

My thoughts exactly.