Journey With Julian

I had to resist the urge to turn the car around. We were on our way to take Julian to his first overnight camp. I just wasn’t completely comfortable with the idea of Julian being away from us like this. Understand, with the exception of visits to close relatives and friends and his time in the hospital, he had never spent a night away from home without either Martina or me with him. When his school would have end-of-year trips one of us would always go along.

 Martina and I had discussed this at length. It took quite a bit of convincing, on her part, before I acquiesced. I fully realize how odd this might seem to the average person; a father’s anxiety over the thought of his eighteen year old son spending a weekend at camp. You must appreciate how much he has relied on us to help him with day-to-day maintenance matters that typical teenagers routinely perform as part of a personal daily regimen.

 At night we’re there to make sure he remembers things such as brushing his teeth and using the bathroom before going to bed. It is not uncommon for him to request that one of us come sit down with him, to talk, for a few minutes as he settles into bed. I lay out his clothes for him each evening. Julian gives little thought to what he wears. In fact, one recent morning while I was preparing his breakfast, I looked up to see him descending the stairs wearing a big smile and two different shoes. I’d forgotten to put a pair out for him so he just reached into his closet and grabbed the first two within his reach.

We (Martina and I) are acutely aware that Julian has to begin to gain a measure of , relative, self-reliance. We do want him to be able to live as independently as possible in the future. So this weekend camp, which was specially designed for young adults with high functioning autism, was really the right “first step”. I just had to let go a little. 

The moment we turned onto the gravel driveway leading to the wonderfully bucolic setting that is home to the Autism Society of North Carolina’s Camp Royall, near Chapel Hill, I began to feel a little better. It is the ideal place for Julian to attend camp. Lots of trees and trails, a pool, a lake and cabins to sleep in. If it housed a small zoo it would be close to Nirvana for Julian.

As we helped him set up his room we took great pains to make sure he was mindful of a few key points;remember to shower, take your medicine, these are the clothes you should wear at different times. His responses to this were, as always unfailing polite and respectful, “Yes Sir”, ‘Yes Mam” “I will Dad”, “Okay Mom”, “I promise Dad”. Once done with that task we escorted him to the dining hall where there was an introductory spaghetti dinner planned for the campers. When we entered the hall a number of them had already made their way through the serving line. One of the counselors greeted Julian and told him he could just join in and get his food.

At that moment she gave us a reassuring look, “He’ll be fine. It will be fun!” Julian hugged us both and merrily headed off to his new adventure. I stood there and nearly followed behind him, but just as I started to move Martina gently tugged on my arm and said, “It’s time for us to leave.” It was actually a difficult moment for me, I started to tear up and quickly walked outside. I could hear Jared, our younger son, asking his mom, “Is Dad crying?” Yes I was, boy this really was effecting me more than I anticipated.

That night we received an email from one of the counselors telling us that Julian was having a blast. The group had gone out to listen to some live music, afterwards he took a flashlight and scoured the camp grounds in search of “night creatures”. I so wanted to hear his voice but my brilliantly intuitive and level-headed wife calmed me and suggested that we take satisfaction and comfort in the counselor’s message. Of course she was right but that didn’t make it any easier for me.

His Saturday included swimming, hiking, a group dinner at a local restaurant and a telephone conversation with his parents. He sounded full of enjoyment. When we arrived Sunday morning to pick him up he was out looking for “creatures” in the lake. When we walked into his room his clothes were everywhere, his toiletries and medicine were left in the community shower. I could tell he hadn’t worn his clothes quite the way I’d laid out for him. None of that really mattered because at that moment we looked out the window and saw him walking back to the cabin, the picture of cheerfulness. It was at that moment it became clear to me that our family had taken a significant first step with Julian.

As we left the camp he was animated and flowing with stories about his weekend. I gazed at my son, through the rear view mirror, and realized, while going to camp is considered very ordinary, it had been anything but for Julian, and his Dad.

Julian’s face was the picture of bliss, at least his kind. His eyes were closed and his smile was so wide that it nearly rose up to meet the tips of his ears.  I’d walked into my son’s room to witness this scene.  Julian, sprawled out on his bed, surrounded by toy animals, books and Disney dvd boxes while “The Lion King” played on his TV/monitor, “The Jungle Book” was humming along on a portable dvd player on his desk and Al Green’s classic “Let’s Stay Together” was soothing the room from his cd player.  All at the same considerable volume!

This was Julian in complete repose.  Hard for most of us to comprehend this being comforting and relaxing, three things going at once.  It sounded like confusion to me, but for Julian it was a slice of  nirvana.  I stood just inside the doorway looking at my son, he was unaware of my presence, and thought of the irony.  Here was this person who, like most with autism, tend to focus intently on one thing, awash in the (obvious) apparent joy of multiple audio stimuli.

After staring awhile longer I had to engage him, this seemed like noise to me.  I asked if he wanted me to turn down, or off, one of the devices.  He was quick to decline the offer.  He informed me that he was listening to all three and could hear each one clearly.  It was all just the way he liked it, remember it’s about Julian not me or the outside world.  I realized he was really happy in the moment and excused myself from his room.

I don’t know that there is a scientific explanation for this, maybe it hasn’t even been considered by researchers.  I suspect, there is probably something exceptional about his ability to absorb different streams of information at one time, provided they are in areas that are of interest to him. 

This runs counter to conventional thought and scholarship about autism.  Science has determined that the very reason some people with autism excel at one thing is because their brains are wired to prevent reception and processing of multiple streams of information, simultaneously.

However, as all of us connected to the world of autism know, if you’ve met one person with autism…you’ve met one person with autism.  So, for Julian, this is his way of escaping and relaxing.  Considering all that he deals with on a daily basis as he faces a world that is still finding its way in understanding persons with autism, I think it’s just fine. 

I made my way downstairs to join Martina in the den, where she was reading.  We could hear the “interesting” symphony coming from Julian’s room.  She peered over the top of her book at me, I knew what she was wondering.

I smiled, shrugged my shoulders and assured her, “He’s fine, just chillin, Julian style.”

Julian stood before the small gathering giving his presentation on a poster he designed for the Piedmont Wildlife Center.  This was the closing event for what had been six weeks of growth and enjoyment for Julian in the WELL Program. As he explained his process of researching the animals that are housed at the center, how he decided on placement and which ones to draw, I was nearly overcome with emotion.

Allow me to refresh your memory. This time last year he was enrolled  in the WELL program but, at best, was a very passive participant.  You’ll recall that he was still dealing with the effects of his breakdown. Barely verbal with a slow and deliberate gait, he just wasn’t engaging in anything. No drawing, no Disney movies, he’d even lost his desire to eat and would eventually lose twenty pounds off his slim frame.  Our Julian had all but disappeared, literally and figuratively.

So it’s understandable that WELL executive director Tiffane Land wasn’t sure what to expect when he began this year’s program back in early July.  What followed was a delight for Ms. Land, Julian and our family.  Each day when I picked him up she had something wonderful to say about Julian and how he was so enthusiastic and involved in the program’s myriad activities.

There was the day they visited a horse farm. Julian rode the horse, walked with it, fed it and cleaned it’s stall. When they would have grocery shopping day, for the weekly meal they planned and prepared, he got to the point that she could give him his list of items (along with a debit card) and he would finish before everyone, without any assistance. Whether it was compost day or volunteering at the food bank she always came back with glowing reports about Julian.

Even in his interaction with his fellow program participants he was different. When the yoga instructor paid her weekly visit Julian, being the only returning student in the program, took a small leadership role as he showed the others how to perform certain exercises. Julian was beginning to display capabilities that we hadn’t seen before.

One field trip that was of special meaning to Julian was the one to the Piedmont Wildlife Center, an animal preserve.  If you know anything about him then you’re aware that his top two passions are animals and Disney.  This day was nearly like visiting utopia for Julian. 

Ms. Land told me that Julian had this look of pure joy on his face the entire day.  I’ve seen that look, we were visiting Disney World at the time. The campers were allowed to help with the care of some of the animals. Ms. Land said Julian listened intently and took great care in his assignments. He even was smiling as he cleaned up chicken poop!

Martina and I are thankful to Ms. Land for her belief in Julian and desire to have him involved, no matter what level his engagement.  Her program, www.wellprogram.webs.com , has been a huge boost for Julian and (I’m sure) the other young people enrolled. If anyone reading this wants to assist her efforts and the amazing work she does please visit her organization’s (Autism Support and Advocacy Center) website at www.ausupportandadvocacy.com to learn more.

The six-week camp culminated with the program we attended , which featured yoga and martial arts performances, a group poetry recital and individual project presentations. Martina was beaming as she watched our son.  Jared, I hope I don’t imperil his cool status, was clearly happy and proud as he watched his big brother.  Afterwards we thanked Ms. Land for all the program had done for Julian.  She quickly reversed the dialogue and thanked us, for allowing her the opportunity to be part of Julian’s life.

Yes, Julian is doing WELL.

Recently our family attended a celebration/send off for the son of two of our dearest friends. The young man was headed off to college. Family and close friends gathered for an evening of dining, dancing and joy.  Julian and our friend’s son are in the same age range, so for us this was a very real reminder of Julian’s autism and the very different trek we are embarked upon with him.

While everyone congratulated the young man and participated in the joy of the occasion I watched Julian to gage his reaction to this event.  Julian will enter eleventh grade this fall while the evening’s honoree is headed to a prestigious university on an academic scholarship.  Julian has known the college bound lad his entire life. There is a picture of the two of them, as toddlers, enjoying  juice boxes and a turn on a swing, posted on our friend’s refrigerator.  

I just didn’t want Julian to feel he was not doing well in comparison to our friends’ son.  When they saw each other Julian gave him a handshake and a hug while congratulating him.  May I be allowed a sidebar here?  To see Julian continue to evolved like this and interact with people, considering where he was just twelve months ago is so heartwarming. 

Following their exchange I “checked in” with Julian.

    “What do you think of this buddy?”

    “It’s nice.”

    “Anything you want to talk about?”

    “Uh…no sir. Well, how am I doing Dad?”

    “Great and we’re so proud of you!”

    “Thanks, Dad!”

Julian was good.  He just needed to know that, in our judgement, he was doing well.  He did not dwell on this.  Shortly after our discussion he was off to find materials to draw with, remember he finds such comfort and pleasure in drawing his animals and Disney characters.

As the evening wore on there was music and dancing inside while Julian settled at a table on the terrace of the restaurant with his pen and papers. A large glass window allowed me to stand at the bar talking with friends while keeping an eye on Julian who was just a few feet away on the other side of the glass.

Throughout the evening a number of the pre adolescents, hopped up on cake, were running around the restaurant and chasing each other out on the terrace.  They incurred the benign wrath of one of our friend’s father who constantly warned them that they’d better slow down ”or else”.   He and I were chatting at one point, later in the night, when I noticed his gaze had become fixed on a point behind me.  With my back to the glass wall I couldn’t share his view of the terrace. 

“That’s amazing.”  He said with an approving smile.   I turned and saw Julian, seated at a table drawing while surrounded by all those kids.  Some were standing just behind him watching every stroke of his pen while a couple of others had paper and pen of their own and were copying what they saw him doing.  They were peppering him with questions about the animals he was drawing and he was giving them a tutorial on the animal kingdom.

“No one else in here could get those kids to settle down.”

“That’s Julian.”  I replied.

“You’ve got a special boy there.  He’s going to do something in this world.”

“Yes sir, I know. ”

That night as we celebrated the accomplishments of another young man Julian, in his own quiet way, reminded us that there is more than one way to measure success.

Boy, he keeps doing that!  Teaching me about life.

His face was a mixture of mild uncertainty and anticipation.  Andrew, a new acquaintance, was asking me about my experience with Julian and Jared.  Like me he has two sons, about two years apart in age. The eldest, as is the case in our family, has autism. The difference is Andrew’s sons are much younger than my teenagers, Julian and Jared, who are now 17 and 15, respectively.  Was there any insight I could offer on what lies ahead for him as a father?

Flexibility was the first word that came to mind. I recalled that Julian’s autism forced me to recalibrate my view of, what most would consider to be, the traditional father-son dynamic. I had to accept that it was unlikely he and I would recreate a Norman Rockwell inspired image of the father teaching the son the nuances of throwing a curve ball and a slider.  I had to come to a place of understanding that Julian was not going to grow up to be a man of(traditional) power, astride the worlds of business and philanthropy like a colossus, as I originally expected of any son of mine.  Bottom line, Julian was going to show us the pathway of his life’s journey.

I shared with Andrew that his son will provide their family with unforseen moments of joy that will leave  indelible impressions.  He will take them places they never expected to venture.  Julian has opened up the world of animals and Disney to a degree that I never would’ve imagined.   His gifts as an artist have truly moved me.  He and I visited a local zoo recently and watching the pure delight he took in looking at the animals reminded me that there are myriad ways to experience happiness. 

I also had to be very honest with Andrew.  There will be very trying times.  There have been occasions where I’ve gotten quite upset with Julian.  Despite being well aware of the fact, I’ve had to remind myself that Julian’s brain functions differently and he doesn’t “see” things the way most of us do.  Yes, having a child with autism can be frustrating at times, for even the most patient parent.  It’s human nature.

There are times Julian does things (he shouldn’t) that have little to do with autism and everything to do with being a kid, or worse, a teenager!  We’ve found that letting him know he has to meet the same standard of respectful behavior and conduct, as his brother, has been a plus in his development. There will be those larger issues that arise that you simply have to find the courage to battle.  We’ve learned that with Julian’s educational and social challenges.

I suggested to Andrew one thing to guard against is being overly punitive with the other son.  I’ve been guilty of this in the past with Jared.  Because “he should know better” sometimes I’ve been especially hard on him, in stark contrast to dealing with Julian on the same issue.  What all of us, parents of siblings of children with autism, should be aware of is that it can be very difficult for those children who are growing up with a brother or sister who demands such special attention and understanding. 

What I am hopeful of more than anything else is that Andrew came away from our conversation feeling hopeful and excited about the voyage he and his family have embarked upon.  Because it is a wonder, watching the child with autism make an imprint on all others around them.  And watching the other child develop and gain a greater appreciation for all persons and things that are “different” in our world.

At the end of our visit Andrew’s face seemed a bit more relaxed and calm.  Maybe being able to share thoughts with someone who’s a bit farther along down this road of autism and parenting helped.  There was one final thought I wanted to leave with him.  Through all of this you will emerge a better man and father, I certainly hope that I have.  That daily improvement never stops, Julian makes sure of that. 

Afterall, isn’t trying to be better every day one of the real keys to fatherhood.

Julian and I were seated at the kitchen counter eating lunch and discussing Disney animated characters, actually he was giving me a tutorial on the different villans featured in those movies. It is his considered opinion that Scar (The Lion King)  and Frollo (The Hunchback of Norte Dame) are far and away the most diabolical.  Then, seemingly out of nowhere,  he posed the question.  “Dad, will I have a girlfriend?”  Okay, I didn’t see that one coming.

It shouldn’t have surprised me, after all he is a seventeen year old boy.  By nature, most are consumed with thoughts of the fairer, and at that age far smarter, sex. Though I’ve long since had “the talk” with him, and periodically inquire about his interest in girls, it just isn’t something that comes up much. I spend a lot of time with my two sons and we talk a lot.  Jared, who’s fifteen, constantly peppers me with queries about, among other things,  girls. Though Julian doesn’t offer much on this topic, I now realize he’s absorbing everything.

Girls do notice him.  Recently, during a visit to a shopping mall, we were in a clothing store that’s frequented by teenagers. Martina wanted to pick up a few things for the boys.  I assumed my normal position in these scenarios.  Muted support, nodding approval when Martina signaled and pretending to understand Jared’s “curious” fashion choices.  While Julian was educating me on the Set animal(Egyptian mythology) and happily going on about its mysteries, a few racks over a young lady was staring at him, he had no clue.

She worked her way over to the rack nearest us and a made a point of smiling and saying hello, giving Julian one of those very friendly looks. He smiled and waved, as he does with everyone, and quickly returned to Egyptian mythology. I found the irony both touching and humorous. Despite standing right next to him she still would have to travel quite a distance to reach Julian’s world.

I don’t think she ever noticed the animal figure clutched in his hand.  She just saw a cute boy.  After she walked away I asked him if he realized she was flirting with him. Of course I knew the answer.  Persons with autism rarely are able to pick up on social language and cues. He just thought she was being polite.

So when he presented me with the question about his future with girls you can understand my surprise.  However, this did open the door for dialogue.

“Would you like to have one?”

“Maybe, some day.”

“What kind of girl would she be?”

“Someone who likes my interests?”

In a very deliberate manner he used his fingers to denote each one.

“Disney, animals, cryptozoology, animated movies and R&B music.”

“I’m sure when the time is right you’ll meet her.”

“Okay, thanks Dad.”

At that moment I didn’t know whether to cry or smile. I want so much for Julian to experience the full breadth of life and, if possible,  to know the kind of love his mom and I share. It will take a very special person to connect with him, it will not be easy.  Not impossible, just not easy. The good thing is that we have plenty of time to help him navigate that course. Remember, he’s just seventeen and in no hurry.  And he does already know love, of family.  He fully realizes Martina, Jared and I value him and would do anything for him.

Martina and I have now begun planning for ways to place him in safe social settings where he can interact with girls of his age and understanding.  His favorite musical artists are, in no certain order; Alicia Keyes, The Temptations, Jill Scott, Al Green and Earth, Wind & Fire. Whomever the young lady is(that will be interested in Julian) she must be open to his love of music, animals, animated films and Disney.

Because, as EW&F might put it, that’s the way of Julian’s world.

I recognized the familiar facial expressions, however subtle, as the lady approached.  Her face  was covered with befuddlement accompanied by a small measure of disapproval. Julian, unaware of her at first, was blissfully engrossed with the items in his hands.  A toy zebra and a large gift bag covered with Disney characters, a very large bag! We had just visited a toy store, as promised to Julian for doing so well recently, where his face lit up at the sight of the bag.

Julian and I were waiting outside another retail store, Martina and Jared were inside, enjoying the soothing spring afternoon weather. I was seated on a bench, he stood just in front of me. By the time the aforementioned woman was upon us Julian greeted her with a hello and that heart melting  ear to ear smile that I’ve come to love so much. He then proudly held up the bag and began to explain which character came from which Disney animated movie.

At this point the transformation was complete in the woman, who’d paused her shopping day for a brief chat with Julian. She was now beaming and listening intently.  From the earlier distance all she saw was a, physically typical and attractive, seventeen year old boy holding, and transfixed by, a toy animal and a small child’s gift bag. To her initial gaze, I imagine, the scene appeared “off”, hence the noticeable immediate facial reaction.

It only took a matter of seconds for her to recognize the genuine joy that those items brought Julian and the alacrity with which he was willing to share information about Disney and animals. As their brief visit ended she told Julian that her favorite Disney animated film was Snow White. He then told her, that one fell under the category of “Classics”, whereas his favorite, “The Lion King” is under the heading of “Renaissance”. Who knew?! Julian did. As she walked away she paused, turned and with complete sincerity said, “Julian, it was REALLY nice to meet you.”

 That encounter underscores something Martina and I have come to terms with as Julian’s parents.  Allowing him to have the things that bring him comfort and joy whenever he wants them, no matter the circumstance or setting. There was a time, as he moved into his teenage years, that we restricted where and when he could carry toys and other items we deemed age inappropriate. We did not want people “giving him those looks” or making fun of him in public.  Frankly, there were moments when it could be a little embarrassing. 

Well, we were wrong. These things, toy animals and all things Disney, make Julian happy. They represent the center of his universe, not ours, “his”. Given all that he has dealt with in his seventeen years he deserves the measure of comfort these items bring him.

The day we got the bag Jared opted to remain in the car, listening to his iPod, while we went into the toy store. Upon our return an excited Julian showed Jared the bag. Jared’s response? “What’s in it?”  It was empty. Julian’s unbridled glee was in simply having the bag with some of his most cherished characters featured on the outside.  Realizing this, Jared smiled at his brother and said “That’s cool Julian.”  That’s all the validation Julian needed to hear. He then became lost in a delightful world all his own making.

Julian now carries that bag everywhere, even at home. It’s as if he thinks it has some magical powers to make him feel better, maybe it does. When he’s eating dinner, the bag is placed on the floor near him. When we have family movie time, the bag is there. When we’re going out, the bag is in one hand and a toy animal or Disney figure in the other. 

So when we’re out and people give us “those looks” we simply respond with smiles.  It rarely takes long, after seeing Julian, for them to “get it”.  Truth is, it really wouldn’t matter if they did or not. To paraphrase Jared, if it’s cool with Julian it’s cool with us.

That’s how we roll.