A Life of Good Works, Unfinished

raise a glass

Here’s to you, friend.

Last night I attended a post-work happy hour with co-workers from an earlier period of my life. It was a reunion of sorts, but far from a happy occasion.

We gathered to celebrate the life of a friend and colleague who was taken from us way too soon, 10 years ago this week.

I was far from his closest friend at work. But I occupied the office next to his for a few years, and we had a great office kinship. We discussed everything from last night’s games, to politics, to world events, to office gossip.

I was two years younger than him, but we were in very different places. I was married with two young kids, while he was enjoying everything that life as a young, successful New York bachelor had to offer. And yet, what we talked about a lot was family. He told me, on more than one occasion, that when he was ready to stop playing the field, “I want what you have,” in a way that made me proud.

I had the office next to his during the period we learned of Ryan’s diagnosis. There were some difficult days. He was the type of person with whom I felt comfortable sharing my fears and hopes. He listened. He asked questions. He seemed to know what to say to pick me up when I was down. He cared.

He did not offer many details of his family story. But it was obvious he was incredibly family oriented. To me, he appeared to be someone who had the world in the palm of his hands — and he did.

He was smart, successful, full of life. He was destined for big things in his career. But there was something about him — a spark, an unmistakable charisma — that you couldn’t help but notice. He was the type of person that, if you’re lucky, you’ll meet once or twice in your life. A light that draws others in. He seemed to be better at the game of life than everyone else, but not in a Gordon Gekko, titans-of-the-universe way. His joy and zest for life were inclusive. He lived to surround himself with friends and create experiences in which others could share.

Every person in the office that knew him liked him and considered him a friend. I couldn’t imagine anyone ever had anything bad to say about him. He squeezed every drop of juice out of the pulp of life. He collected experiences and friends. He was a gatherer, a connector. The life of the party, the center of every social orbit. He was the type of person that could close the bar, and be the first one up the next morning to go lead a community service project.

He was deeply involved with the Special Olympics, and used his interpersonal skills to convince large, red-tape filled organizations to make things happen. He created an entire Special Olympics event in New York City seemingly out of nothing more than the force of his will and his considerable charm.

And then, one day, he didn’t come to work. There were hushed conversations, obvious concerns. Soon, we learned the terrible truth. He had gone to sleep and not woken up. The most full-of-life person I had ever known was gone at just 34 years old.

This occurred in the midst of a miserable professional period, just days after many colleagues were laid off in a work stoppage. The sadness was crushing. The unfairness was indescribable. Incredibly, he was the third of his parents’ children to pass. I doubt I will ever see a feat of strength that surpasses watching his father deliver a beautiful eulogy at the funeral.

Last night, we gathered to raise a glass in his honor. Many of us only knew each other through him. We had all been co-workers once, but from different areas of the organization. He was the common link. Colleagues I hadn’t seen in years stopped by, some making extraordinary efforts to be there. We reminisced. We showed off pictures of kids that were toddlers then, middle- and high-schoolers now.

It was not a sad occasion. Here we were, 10 years on, still connected by our association with our dearly departed friend. I can’t help but think that somewhere, he was smiling, having brought people together once again.

For me it was a reminder at the rapid passage of time. Where did 10 years go? My goodness, I was in such a different place then. If my friend taught me one thing, it was this: seize each day. Squeeze it until the juice runs dry. Surround yourself with friends, with family. Collect experiences and people. Don’t. Waste. Time. Certainly don’t wish it away.

He was taken from us, unfairly, far too soon. But he lived every single day to its fullest. It was a life incredibly well lived. In the obituary, his was described as “a life of good works, unfinished.”

I try to remember his lessons and apply them in my life. Nothing is promised but today. Make an experience — today. Make a memory — today. Those are the things that will matter when our time is up, no matter when that is.

Thank you, Pete. I miss you. I was proud to call you a friend. I remain in awe of the way you lived your life. Shemenahah!

Calm Amid the Chaos

birthday cake

Happy birthday, Ryan!

It’s true: It’s sometimes harder to notice change that occurs right in front of you. Being around my kids every day, I am aware of the changes taking place of course, but sometimes it takes an event — discovering an old box of photos, a visit from a relative, an annual event, or a milestone — to realize just how rapidly that change is occurring.

Ryan celebrated his birthday recently. On the actual day, we went out to dinner (his choice! a first …) then had our neighbors and good friends over for cake. By Ryan’s choice, we marked that gathering with a group viewing of his current favorite TV show, Seinfeld.

As will tend to happen when three tween-to-young teen girls, four parents, and an excited birthday boy share a small space, the volume in the room quickly rose to a point that was uncomfortable for me. It didn’t seem to bother Ryan.

Then the phone rang. It was his aunt, uncle and cousins, calling to wish him a happy birthday. At one point not so many birthdays ago, it was a chore to even get Ryan on the phone for a few seconds. The conversations went something like this:

“Hi”

“Thank you”

[pause...]

[Ryan hands the phone to one of us, without saying goodbye, and runs off to return to whatever he was doing before the phone rang.]

This time was different. So different. When the phone rang, Ryan asked who it was. Hearing the answer off the caller ID, he said “I want to talk to them.”

And talk to them he did. I heard him engaging in genuine, two-way conversation. He asked each of his three cousins, in turn, about their first days of school. He asked about their homework. He told them about his.

He did all this while the chaos continued around him. It did not faze him one bit.

Of course, Veronica and I were aware of the contrast to early, difficult birthday celebrations. But this change was so stark, it was impossible not to notice, even amid the noise and activity.

Finishing the conversation, he said his goodbyes and announced he was ready to watch Seinfeld. It may have been no big deal for him, but not for Veronica and me. Not after the stress and dread of those birthday parties so long ago.

Watching my son grow more comfortable with who he is and how to express himself is the greatest gift of all.

On ‘This Is Why’

This Is WhyI titled Monday’s guest-post “This Is Why,” (If you haven’t read it yet, please do so. I promise it’s worth your time. Read it here) and it occurs to me I never alluded to the title in the post. I think that is worth revisiting.

There were so many things that struck me about L’s story: Its similarity to our family’s journey. The role that hockey plays in his child’s development. His willingness to address his son’s emotional and social environment with the same level of concern as his academic one. It’s a story I wouldn’t have known, nor been able to share, were it not for this wonderful online community.

This Is Why … I blog. To join this online community of parents, experts, self-advocates who can relate. Who Get It, down to their core. Who, no matter how unique an issue you think you’re experiencing, have experienced something similar. The connection to this community has helped me gain perspective. it has helped me evolve my thoughts on autism. It has provided useful suggestions. It has been there to say “I stand with you and I understand” in difficult times. It has been there to cheer our successes and say “I understand that is a Not Little Thing.”

This Is Why … We are so grateful to have hockey in Ryan’s life. Participation in team sports has not been without its rocky moments, but the benefits: in socialization, in physical development, in added self-esteem, far outweigh the challenges. When Ryan struggles socially in school, we remind him that he is a well-liked and valued member of his hockey team, and it helps.

This Is Why … It’s so important to look at the whole child’s development. Intellectual, developmental, physical, emotional, self-esteem, self-awareness, self-advocacy. All the academic support in the world won’t matter if the social piece doesn’t work. A successful social support network won’t prevent anxiety from sinking any chance at academic success if steps aren’t taken to mitigate it.

This Is Why … It’s critical to support your child’s affinities. L.’s son did not feel like he fit in at his first high school because he couldn’t make a connection through hockey. Ryan, too, finds it difficult to connect with any boys who don’t share his love of the sport. I am reminded of one of the lesson’s of Ron Suskind’s book “Life, Animated” about recognizing how much his son needed a friend, and that the best way to find one was through his affinity for Disney movies. Some affinities make us uncomfortable, but trying to suppress them in favor of more “normal” interests is not a ticket to success. As Suskind writes, “affinities are a pathway, not a prison.”

Thanks again to L. for sharing his family’s story, and for being a part of this community for which I am so grateful.

Guest Post: This Is Why

High school hockey

A high-school hockey game. NOTE – image from Google images. It is not a picture of L.’s son.

ED. NOTE: My blogging career began with a guest post at Diary of a Mom. That came about after I sent an email to Jess in response to one of her posts, and she read it and said she wanted to expose her readers to it.

Saturday night, an amazing story arrived in my email. I knew as soon as I read it that I wanted to share it here, and the author, L., graciously agreed. Please read it and let L. know how you feel in the comments. I have removed all personal reference’s to respect L.’s son’s privacy. The following words are all L.’s, except where indicated.

First I have to thank you for sharing your story. After reading yours, I am going to share mine. It is similar to yours but my son is like Ryan and a little older. My son also loves hockey, eats, breathes and sleeps it. He did not love it at first.

He started playing when he was 10. Our autism consultant advised us that kids on the spectrum really need to exercise and break a sweat. Fall, spring and summer were no problem but the long winters were a challenge. His three older cousins were hockey players so we decided to give it a try. He started with the Learn to Play hockey program which were mostly 6- and 7-year old kids. That ended and most of the them went on to play hockey. The league president advised us that USA Hockey rules stated [our son] had to be a squirt. We were concerned. The squirts looked pretty good. He spoke with the coach who didn’t seemed too thrilled to have a kid that snowplowed [ed note: a "snowplow" is how beginners first learn to stop on ice skates] on his competitive team but became more receptive when we advised him that we were only looking to have him practice with team. My rotating schedule would not allow any travel.

We went to the first and only practice squirt practice it was a disaster. The music was loud which for most kids would be OK. For my son it was causing anxiety. Then the players came out and were skating the circles. The coach told my son to go and join them. The kids were skating repeated laps around him and he skated two circles and made a beeline off the ice. The music and speed were more than he could take. He crunched into a fetal position and trembled. He told me he wanted to go home. It was a day I will never forget. I thought about ending his hockey career.

We kept him going to open skates and stick-and-pucks. He wanted to play hockey. We found out that the league to the north of us had house leagues that were considered recreational leagues and they seemed to be a better fit. We signed him up and he played a full season at 11. Our son was on a team, for the first time in his life. A developmental pediatrician had told us that he would probably never play a team sport. WOW!

At 12, the game became faster. He was struggling to keep up with the speed. I was concerned that he started hockey too late and was on borrowed time. I thought his hockey future was in jeopardy. That year, he was put on a team that had no goalie. He was the worst kid on the worst team and they had no goalie, I didn’t realize that we had gotten lucky. All the kids rotated in the net and they lost every game … by double digits. He wanted to try [playing goalie] because he felt he could do better than this teammates had. I wasn’t sure he could. I was wrong because the day he played goalie his team lost 6-4. You would have thought they won a championship. The team was ecstatic and a goalie was born. They were competitive for the rest of that year. They even won a few games. They lost the consolation game by one goal.

We bounced around for the next few years playing in any league that I could find that needed a goalie and that didn’t have travel. In the meantime he would study every goalie on YouTube, TV or any game we could go to. Only a parent with a child on the spectrum could understand how much he studied them. He became fairly good and was self-taught. He was even well liked by his various teammates … goalies are allowed to be quirky. My schedule finally changed and he could play travel. He tried out for the Bantam B team and didn’t make it. They offered to keep him as an alternate and let him practice with the team. He was 14.

Fast forward to last year. He never played in our local youth hockey league because they only had travel. He also attended a local Catholic high school because of the small class sizes. He hated it because it is a baseball school and that is all the kids talked about. Not one hockey player in the school. He was an unhappy kid and we feared he was bordering on depression. Our public school districts high school team won the state ice hockey championship and we went to many of the games together. He dreamed of playing for them and to be quite frank, I didn’t know if he was good enough, he had never even played or made a travel team.

Last summer he/we had a life-changing event. The local high school coach hosted a youth hockey summer clinic … two age groups and one was High School-aged. My son was going to be a sophomore (now 15) and wanted to go. I let him just so he could experience playing with high school players. After the clinic the coach wanted to speak with me. He advised me that my son was technically perfect and he had never seen any goalie track a puck like him (his autism at work)*. He told me my son was very good and wanted to know what school district we lived in. He was floored when I told him that it was his. He had never even heard of my son and he thought he knew of all the goalies in the area, especially in his district. We told him that he went to the local Catholic high school and didn’t play in the local youth hockey league. He was even more amazed when I told him he was self-taught. He told me he was good enough to compete with the two seniors for a starting position. I was in shock. He asked if I minded if he checked with the state high school governing body to see if he could play for his team, while attending the Catholic H.S. He couldn’t and he would have to attend the public high school if he was going to play. We didn’t want to move him to the public high school and he understood and respected our position. He was on track for a high school diploma and we really didn’t want to chance the change. Once my son found out that he could probably make the team and that we were not going to send him to the public school, well it was bad. To make it worse, the captains from the high school team were texting him asking if he was going to switch schools. He would see the players at the stick-and-pucks and they were all trying to recruit him. This was so tough for us.

(* NOTE – emphasis added is mine. I love that L. was able to immediately see strengths in his son’s autism)

The first three weeks of his school year was classic depression and we were concerned. My wife and I always felt his social well-being was equally as important as his academics and we decided to take the chance and move him to the public high school. It was a hard decision. Our public school did not have the best reputation for dealing with the kids on the spectrum.

He made the high school team and competed with three other goalies for ice time. He did play in three games and did well in all of them. Since he had never played travel, he did Midgets as well.

Today, he is a junior. Our school has made improvements in its special education department and has been great to work with. He is still on track to graduate and will be playing for the high school team again. This year he will compete for the starting position and we are still one of the top teams in the state. His self-esteem is through the roof and his peers think his quirkiness is from taking “too many pucks to the head.” His coaches know he is on the spectrum and welcome him. In fact they really like him. As a bonus, he made a friend, another hockey player on the spectrum. He is not on the school team … yet.

Every day, I am amazed at how far my son has come. He, like Ryan, is an extremely hard worker. Hockey has changed my son and only for the better. I am glad to see the same for Ryan and others.

Thank you L. for sharing this story. I can relate to so much in your words. From the internal debate between pushing a child vs. the desire to protect them, to the fear about them “fitting in” on a typical team, to the son’s unhappiness at not being able to find friends who also like hockey, to the concerns about his social as well as academic well-being, to the amazement at the child’s ultimate triumph. L., you are a terrific dad and I’ll be pulling for you son this season!

Progress vs. Development

Ryan's first first day of school

Ryan, on the occasion of his first first day of school in 2003.

Yesterday was the first day of school for our family. We made the kids pose for the obligatory photo and then sent our newly minted seventh- and eight-graders off to middle school.

We’ve been at this school thing for a while now. Counting Ryan’s years in special services preschool, yesterday was his twelfth first day of school.

And in so many ways, the child we saw off to school yesterday is different from the one we sent off one or two or five or 11 years ago.

The easy temptation is to label that “progress.’ In fact, I have written a lot of blog posts aboutprogressrecently. But now I’m wondering if that’s the correct word. “Progress” implies an end goal to meet or peers to catch up to. Ryan is progressing — rapidly, in fact. We’re seeing things regularly that would not have been possible even a year or two ago.

But the more I think about “progress” and what it implies, the more I’m not comfortable with that word as a description of what we’re seeing. What we are seeing is development. To call it “progress” suggests there is only one path, and that Ryan was lagging behind on it.

It’s taken me a long time to realize, and become comfortable with, the idea that Ryan is simply on his own timetable, developing towards the person he will ultimately be — unique brain wiring, remarkable skills, and challenges included.

A few months ago, I had coffee with a friend of a friend whose child was recently diagnosed on the spectrum. We talked about a lot of things. I was wary of not trying to sound like I had the “right” answers on anything. For as we all know, autism is one word but there is no one autism.

But there was one piece of advice I felt strongly about, and it was to abandon following others’ timetables for his child’s development. The sooner you do that, the sooner you’ll be able to cherish the accomplishments that are bound to occur.

Ryan is developing at an incredibly rapid pace. Physical, mental, emotional changes — most of which are, yes, typical for his age — that are too obvious to miss. Yet, he’s still on his own pace.

And you know what? We’re OK with that. Now that’s progress.