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Julian’s eyes were smiling and dancing. His gaze went from the letter (he was holding ) to me, then back and forth a few times. He started pumping his right fist as he bounced up and down in a joyous celebration. My son had just found out he was going to college. The University of North Carolina-Greensboro had a place for Julian.

This was back in early March. We’d been awaiting word for several months from the school’s Beyond Academics program. The period between application and notification had begun to take its toll on our family. I imagine this is a particularly anxious time for all families, however for us it was intensified several times over. If he didn’t get in what would be next for our son?

As I’ve shared with you in the pass, education and academic achievement hold a prominent place in our household. Martina and I both come from families that expected, and would accept nothing less than, excellence in the classroom. During our sons’ formative years both were constantly reminded of the importance of such matters.

This became problematic once we had come to certain realizations about Julian’s autism.  High school proved to be very difficult for him, especially his tenth grade year. He had a mental breakdown and, eventually, had to repeat the entire year. He regressed so dramatically that doctors weren’t sure if he’d ever recover to the point of functionality he’d displayed prior to the break.

Forever seared in my memory is a meeting we had with a group of (well-meaning) educators, shortly after his return to school. The general consensus, from them, was that he would never be able to complete work for a diploma.

“Realistically what we’re looking at, for Julian, is a certificate of attendance.” Though spoken softly the words flowed from the educator’s mouth with a marked degree of dispassion and a measure of coldness. As Martina’s hands tightened around mine I didn’t have to look at her, I sensed the tears.

She gathered herself and pronounced to all, “If you don’t want him here then we’ll find somewhere for him. But don’t tell us he can’t do this!” The two of us were not willing to throw in the proverbial towel at that point. We knew our son.

After finding the right learning environment for him, a  very small specialized school within our public school system, Julian found his academic footing. It was never easy but, with tremendous support, he got on track to graduate. His expectation after that, instilled in him by his parents, was college.

Only a handful of schools in the entire country have programs designed for people with autism. With increasing numbers of persons, on the more functional end of the autism spectrum, graduating from high school every year there are not enough opportunities for those wishing to pursue college. In fact there are less than fifteen full-time programs, like Beyond Academics, in the nation.

We applied to the UNC-G program, which is in our home state and open to anyone with a developmental disability, that previous August. They were only going to bring in around twenty new students. So, as the months passed Julian’s anxiety level increased. It got to the point that he monitored the mail delivery.

One day I was reading a letter containing some disappointing news about a friend of mine, the look on my face reflected the letter’s content. Julian happened to be in the room;he saw me open the envelope, begin to read, noticed my reaction and was off to his own conclusion.

” I’m not going to college! Am I?” His voiced was raised and he started pacing back and forth as though he were verging on a meltdown. I calmed him down and assured him that every letter arriving at the house was not from UNC-G. Julian simply couldn’t process why it was taking so long.

In his mind no news was bad news.  His autism had led him to fixate on receiving acceptance from UNC-G. So we constantly were reminding him that it takes time. We went through a version of the above scenario several times a week for months. As much as he wanted to receive the news, truth is, Julian really had no concept of what it would actually mean for him to be in college. That’s a story for another time.

Hopefully you now have a better appreciation for the exultation the letter triggered in Julian. My son, who knew he was different from so many others, was basking in the moment that thousands of high school seniors experience. It only took the first few words to get him going. “Julian we are pleased to inform you that you’ve been accepted…..”

Someone was telling him, you’re wanted. So many persons with autism need to hear that more.

Back From A Break

“What do you mean you stopped writing it?” The combination of befuddlement and slight irritation was very apparent in the voice of my dear friend Rohena. The person who prodded me to start writing about our life with Julian, and later came up with the name for this blog and subsequent book, couldn’t understand why I’d stopped posting.

I had a couple of mildly plausible excuses. With the release of the book (last spring) and so much happening with media appearances, speaking engagements and Julian’s final year of high school, I just couldn’t find the time. Of course, as she accurately detected, this was all just sidestepping on my part. Truth is I felt as though I’d laid bare so much about our lives that I thought people might have read enough. I was wrong.

Over the last eighteen months I’ve delivered a number of talks/speeches and made myriad media appearances, most in connection with the book, which is available at Amazon, http://www.amazon.com/dp/159309423X . I’ve found that many of you connect with our story and have been moved by Julian’s spirit and courage. Therefore, after a considerable leave, I’m resuming this blog.

I’ve so much to share with you about Julian’s life over the past twelve months. I shall do so in the coming weeks and months. He did graduate  with a high school degree and now is a freshman in college. I know, wow!  He’s really become a media darling in the last half-year; the aforementioned publication of the book, appearances on the Katie Couric Show and the cover of Autism Digest provide clear examples.

Martina and I have been forced to let go a little, because he is living away from home while attending college. Let’s just say that has presented another set of anxieties. Our journey continues to be one of soaring highs accompanied by very challenging moments. But it does continue so, if you will indulge my reflections, join us  back on the path as we all walk with Julian.

 

Martina and I stared, completely bewildered by what we were witnessing. There was Julian, sprawled out on the den sofa, seemingly transfixed by the presidential debate between President Obama and Governor Romney. This is Julian! If it’s not Disney animated movies, Animal Planet or the occasional show, about mythical creatures, on the SyFy channel he’s not interested. Yet there he was, intently watching the screen, as the two political candidates went back and forth.

Why, of all things, has the presidential election penetrated his world? We don’t know. But, to be sure, it has. It started a couple of months ago when he would periodically ask one of us who we thought would win the election? Who was ahead? The intensity of his interest has increased as election day draws near. While he doesn’t really grasp the major issues and their respective complexities, frankly how many people do, he has latched onto healthcare and how it might affect him.

Just a few days ago he and I had this exchange.

“Dad do we have Medicade?”

“No.”

“So it doesn’t affect me?”

“No.”

“My life won’t change?”

“Everything will remain the same for you, son.”

“Who is winning the election?”

“It’s close, hard to say.”

The fact that I was having this dialogue with Julian was, to me, pretty amazing. He actually seems a bit anxious when discussing the matter. Could it be that because he’s seen his fair share of doctors and is on medication have something to do with this? Probably. As most of you are well aware, when a person with autism “dials into something” then they can become nearly obsessive. Julian has certainly turned his attention to the race. Yes, he has a preference and no, I’ll not share that with you. It’s his business.

What’s interesting is that something, so inconsistent with his well established interest community, could occupy such a dominant place in his thoughts. I look upon this as an opening, a teaching moment if you will. We’ve discussed who various political leaders are; he can now name our state’s governor, the candidates for governor in our state, our mayor, congressman, both vice presidential nominees and various members of the president’s cabinet.

Early voting begins in our home state(North Carolina) this week and Martina, Julian and I will go vote together. The idea of this moves him to bouncing , smiling and clapping his hands. Maybe it’s all about the realization that he will be able to do something that carries such weight in our society, something that makes him like so many others. On this matter he is Julian Ballen, citizen. Just maybe he’s doing something that we all should do when considering whom to vote for, pay close attention.

So there he was, completely engrossed, watching and listening. He didn’t want to go to bed until the debate was over. As he watched I noticed one of his stuffed toy Simbas, nestled snuggly in his left hand. He may be watching the debate but he’s still Julian.

Clearly, with all due respect, President Obama nor Governor Romney stand a chance when measured against the prince of  The Lion King.

As I rose one recent morning, wiped the sleep from my eyes and opened the door to our bedroom I was greeted by Julian, already up and ready for the day, wearing a big grin with his arms open for an embrace. “It’s my birthday!” Yes it was(his nineteenth), so I gave him a big hug and a kiss. I knew what he wanted to do for the day, after school of course, but I decided to ask anyway. He wanted to go through this again, it was written all over his face.

“So, what do you think we’re going to do today?”

“I want to get a Puffin(a stuffed toy animal that is a relative of the penguin) and another sea creature, go to Chinese 35 and will you watch a Disney movie with me.”

“Of course, anything else?”

“Do I have any cards?”

“Wait and see. First you do have school.”

What caught me off guard about that exchange was Julian’s query referencing the birthday card.  We’ve always had cards for him on his birthday but, frankly, Martina and I never thought they registered to him, just the gifts. I assumed that given his fixation on things such as stuffed toy animals and Disney movies that he paid little attention to the cards we got him.

 We are quick to assume the only things that resonate with Julian are those which fall under the categories of his special interests. That his world is so insular, very little else gets in beyond his “favorites”. Well, that’s not really the case. He takes in much more than we realize. This is probably true of most persons with autism. Though they may not necessarily communicate it to those of us who care for them, you might be surprised to find out exactly what they take note of in the external world.

Moment of embarrassing truth here; Martina and I actually had dropped the proverbial ball regarding his birthday card. Each of us thought the other had picked one up. The night before, when we discovered our oversight we comforted each other with the fact that as long as Julian had his new stuffed animals, a meal at his favorite chinese restaurant and got to watch a Disney animated movie, he would be fine. Therefore, when asked by him, we both made it seem that the plan was for the card to be revealed along with his gifts during his birthday dinner.

It is amazing to think that he is now nineteen and beginning his senior year of high school. We have traveled such a long way in that period of time with our eldest son. He has shown remarkable resilience and a steely will to experience a full life, traits that I wish all of us could command. The road ahead is uncertain and causes me no small amount of anxiety but I take my strength from Julian. He is quick to say to me. “Dad I will have a great life and be successful.” Partly, he offers this so that I will provide reaffirmation. But another part is a deeply held belief in himself.

At dinner that evening we presented him with cards, Jared read a touching note he’d written about what his big brother meant to him and of course he received his stuffed animals. It was interesting to watch the reaction of the other diners as this handsome nineteen year old erupted in pure glee upon the sight of those animals. When I scanned them what I saw were smiles accompanied with looks of approval and a measure of instant understanding. Julian doesn’t even realize how he is helping to make the world more accepting, of thousands like him, simply by being himself.

That night, prior to turning in for the evening, I stood in the doorway of his room and watched him sleep. Positioned on the edge of his bed(to make room for all the stuffed animals he shares it with), arms around a large stuffed lion and the puffin in his hand, with the hint of a smile on his face, he was off somewhere in his dreams. My gaze traveled just beyond his resting body to his desk where he had carefully placed both cards we’d given him.

It was a very good birthday, for all of us.

“You have your lunch?”

“Yes sir.”

“You know where to go?”

“Uh-h, yes sir.”

“I’m very proud of you.”

“Thank you, Dad!”

With that exchange concluded Julian was out of the car and on his way into the home of our local arts council  to begin a few days of volunteer work for a children’s art camp. As I watched him disappear into the building I felt pangs of anxiousness, I admit to having some separation anxiety when it comes to Julian, and rushes of joy.  He was doing something for someone else and was excited about it.

When Martina and I first discussed the idea of Julian doing volunteer work it was a matter of finding a situation where he wouldn’t be overwhelmed but would have the opportunity to contribute in his own way, a setting that he would feel comfortable in. It had to be somewhere that would allow for his autism and recognize that he needed specific instruction. This turned out to be perfect.

The camp director and I agreed that it would probably be best if Julian worked a half day, we weren’t sure how he would handle a full day. This was a first for him. When I arrived to pick him up I found my way to one of the large meeting halls where the campers were having lunch. Kindergarteners were everywhere, it was noisy and animated. I didn’t see Julian, he was in the restroom, but immediately spotted the camp director.

She approached me, face beaming and clasping her hands together. “He’s been awesome! We’d love to have him stay for the full day.” Turns out working with small kids fit Julian just fine. She informed me that his demeanor was calm and patient with them. His job was to help them with various art projects. During breaks he would enthrall the youngsters with his drawings. He took requests from them, the most popular being Mickey Mouse and the Disney princesses. Boy, talk about being in his wheelhouse. I was quite happy to leave and return later so that he could complete a full day.

When I finally did return to pick him up I found him in the office sitting with a little boy who was hanging on Julian’s every word. He was telling the boy about cryptids, mythological creatures such as the Yeti or the Chupacabra. At that very moment it occurred to me just how right this was for Julian. Though he is nearly nineteen years of age, socially he’s closer to that kindergarten aged child than to an adult. He’s able to converse with children on a comfort level that is easy for him. They find his interests fascinating. There is a sweet innocence that is apparent when watching him with children.

 The director couldn’t stop talking about how great he was with them, in fact when his week was done she asked if it would be possible to have him involved with more of their camps for kids. Julian thought it was a great idea and I was overjoyed for him. He truly was happy because he’d helped someone else.

On our way home I asked him what it was like working with all those kids.
“It was fun, I like it, it’s kind of like working with animals.”  Now understand, that’s the highest compliment Julian could pay those kids because he loves animals and thinks anytime with them is awesome. So, in Julian’s worldview equating a group of kindergarteners with animals is a very good thing.

The weekend following his week of camp work Julian volunteered to help man a booth for our local First in Families chapter, a group that assists families and persons with autism. It was part of a communtiy outreach day sponsored by the ARC. As was the case with the camp this was something new for him. In this particular instance he would have to talk about autism as he explained, to those stopping by the booth, the services provided by FIF. 

Given his reluctance to engage in prolonged dialogue about his autism Martina and I weren’t sure how he would handle this, but we reminded him that this was more about the help that FIF gives to people who really need it and that he was doing a very good thing. We also pointed out that by doing this he was showing everyone that autism didn’t stop him from doing productive things. Also that this, once again, was an example of him thinking of others as opposed to himself. When we arrived at the park where the event was held Wanda, the chapter director, was there waiting for him and eager for him to participate.

Martina and I decided to make ourselves scarce, lest he fixate on us being around and not fully engage in the task at hand. We found a place where he couldn’t see us but we could watch him. I can’t tell you how proud we were to watch him shake hands and carefully read from the pamphlet as he explained about FIF to the constant stream of visitors. It was a really good day for Julian.  As we were leaving, Julian had already gone to the car, a lady stopped me.

“Excuse me, was that your son at the First In Families booth?”

“Yes, his name is Julian.”

“Well I want you to know that he was so sweet and considerate that I decided to participate and contribute to First In Families. All because he was so nice and took time to read every word of that flyer so that I understood what they were about. He’s such a special young man.”

Yea, I get that a lot.

The Pool Boys

Julian wanted to go to our community pool, in fact he’d already donned his swim trunks, flip-flops and located his goggles. The last of that trio being nearly essential for his enjoyment in the water. We had already promised him he could go so he was just waiting for Martina and me to gather ourselves so that we could all go, Jared included. It is a rare summer day that Julian doesn’t want to go for a swim. He has always loved the water, everything about being in close proximity to a pool, ocean, lake, etc. brings him joy.

I recall a vacation trip to a coastal resort that really drove home this point. We’d spent the entire day, emphasis on the word entire, on the beach. That evening, after dinner, Julian settled in on the balcony of our oceanfront condo and took in the waves, sound and wind, for hours. He was content to simply sit there, watching and listening well into the night. Some experts believe that the affinity persons with autism have for the water has to do with the sensory pleasure from the total immersion in something that doesn’t push back. Others posit that the dramatic decrease in noise while underwater is especially soothing to them. In or out of the water Julian is happy as long as he’s near it.

With that in mind you can understand how anxious Julian was for us to get going. At that moment I decided to try something different. “Why don’t you and Jared go? Mom and I will stay here.” This caught both boys off guard. Previously a trip to the pool always included either Martina or me, most times the both us. But, at eighteen, we must allow Julian more opportunities to take “small steps” towards independence. Plus we thought it would be good for both our sons.

Jared, who is now sixteen, has lived with Julian’s autism for nearly all his life. While he has done a good job of trying to understand, and adapt to, his brother’s differences it has not been easy for him. Sometimes they argue and fight. While not uncommon among siblings, especially teenage boys, these disagreements occasional lay bare the frustration Jared feels, at times, with Julian. One particular instance, after hearing some very loud bumping and shouting, I found myself upstairs separating the two.

I sent Julian to his room then addressed Jared. Sometimes it can be hard to trace the origin of the argument when Julian is involved. Such was the case that evening. I reminded Jared of the myriad conversations we’d had about the high tolerance and patience levels required on our part (this included him) when Julian is upset. At that point it didn’t matter so much who was at fault as it did how Jared handled the situation. This is the part of the equation that would seem unfair to Jared, but it goes to the very nature of him being the brother of someone with autism. The burden of resolution falls more on him than Julian. Not the easiest concept for a typical sixteen year old to accept.

It’s not that Julian gets a free pass. We make sure that he fully understands the consequences of his actions and realizes he will be held accountable. It’s just that “in the heat of the moment” diffusing a situation is more likely to come from the person without autism. As Jared and I talked about this his eyes welled up and he released.

 “Dad why does he act like that? Sometimes I think he hurts our family? He makes me so mad sometimes. This just isn’t fair.”

 I listened and allowed him to get it all out.  Then, with my arm around him, I asked him to put himself in Julian’s place. Did he think his brother’s true intent was to cause problems for us? Could he conceive of living life in a world that is not designed with someone like him in mind? What if he were eighteen(like Julian) and had never been able to even approach a girl and have a sustained conversation with her?

Our discussion went on for about thirty more minutes. I offered no easy answers but assured Jared that the strongest bond our family has is our love for each other and that was unbreakable, no matter what disagreements arose. As I left his room and descended the stairs I heard him walk into Julian’s room and apologize, interestingly Julian reciprocated. 

So, my descision to send them off (to the pool) together was a way of forcing them to talk  a little more and continue to find ways to connect with each other. About an hour and a half later I looked out the front window to see them walking back. Laughing and at ease with one another. Brothers. Later, when I asked Jared how it went he said it was good.

“Dad, we actually had a cool conversation, we talked about Disney animation and girls. It was really nice. I was kinda surprised.”

“That’s nice, glad the two of you could hang out and enjoy each other. All it took was a little effort.”

“He really is special. I want you to know I’ll always be there for him.”

“I know.”

 

Tears were streaming down her face as she approached me. “I wish my husband had been here, I just…may I hug you.” We embraced, and the lady I’d just met took a few minutes to tell me how difficult things had become in their household because her husband simply was refusing to deal with the realities of having a son with autism. I had just finished giving a talk at a fundraiser for  iCan House, a non-profit that assists persons with social skills difficulties, such as those normally associated with persons with autism. For more on the inspirational work being done by founder Kim Shufran and her team you can go to www.icanhouse.org.

As the woman spoke to me it was clearly evident just how emotional and taxing their life had become. Her husband would not accept their adolescent son’s autism. She explained that he didn’t recognize that their son wasn’t acting in a certain manner to be contrarian, instead he initially insisted on disciplining the child as though he were neuro-typical. In other words he was determined to “straighten the boy out”. Eventually the father distanced himself from the son and the mom has been left to do the heavy lifting by herself.

This story caught me, somewhat, by surprise. Most of the men I know (personally) who have sons with autism are involved and exceptional fathers. But, as I have learned, there is a significant segment of fathers who do not handle autism, especially in their sons, very well. If you consider the expectations our society places on what it means to “be a man” then maybe it shouldn’t surprise anyone to hear stories of men who have problems relating to a son with autism.

Having recognized, and allowed for,  this societal expectancy I have this thought to share with those troubled dads, “It’s not about you!” It is about that young boy who, despite behavior that you may not understand and that might (at times) defy conventional norms, really needs you in his life, not on the periphery but actively involved. To abandon your station and leave the daunting task of raising a son with autism to his mother is not only wrong but, frankly, it will shortchange you.

I speak of this from experience. When Julian was first diagnosed (at age four) I had to go through periods of adjustment and acceptance. At first I wanted to “make him understand” what was going to be proper behavior and what wasn’t. Any son of mine was going to comport himself in a manner that reflected positively on our family and me. Note the latter part of that, me. I was concerned about what it would say about me, as a man, if my son were perceived as “different”. Autism was not in my playbook for my first-born son’s life. I’m certain there are fathers out there right now feeling this way. Again, “It’s not about you!”

As almost always has been the case, in major transformative stages of my adult life, Martina (my wife) played a lead role in getting me to where I needed to be emotionally and logically. During especially difficult times she would remind me Julian was not intentionally acting out, his lack of conforming to my rules was not a challenge to my authority. He had autism, it was different, I had to accept this. I had to learn, it wasn’t about me.

I recall one incident when he was about five or six, Julian had a major meltdown; tearing his room up, ripping things off the wall, breaking his own toys. This had become regular theatre in our house. I was done, it was going to stop. I was ready to really take matters “into my own hands.” Martina interceded; calmed and sat me down, then presented me with a small stack of literature about autism. “You really need to read some of this and think about things.” She knew that I’d resisted educating myself, in detail, about autism. At that point, I’d yet to realize it wasn’t about me.

I heeded her advice and as I came to terms with my son’s autism it opened up a level of connection with him that I’d, previously, thought impossible. Over time we came to rely on each other, he would let me know what he needed, how he was feeling and I always assured him that I was proud of him, loved him without conditions and would always be there for him. I understood it wasn’t about me.

To those fathers feeling disconnected and thinking this isn’t what you’d planned for when your son was born I ask that you consider your child. Imagine what his world is like. He may not ever say it, he may not be capable of expressing it, but he wants your guidance. I promise you it is not your son’s intent to make you appear less of a man because of his differences. As for the “looks” you’ll receive in public, especially as he gets older, those embarrassing moments. They don’t matter. It’s not about you and it sure isn’t about the perception of others.

You’ll have to suspend most of your notions of traditional manhood and find ways into his world that allow you to nurture and support him. Easy? Not at all, but well worth the effort. The modern philosopher and writer, Robert Brault wrote, “You will find that if you really try to be a father, your child will meet you halfway.” It may not be the usual, you take one step he takes one. It might be, you take five and he takes one, but you will get there. Just be mindful, it’s not about you.

At eighteen, I look at Julian and realize that my son, in his own way, is going to be one helluva man. You see, it’s really all about him.

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