A Long Train Ride to Destination... Gratitude

By Trotter Cobb

The adventure began with a train ride. My wife Anne, my DYRK1A son Trot and I decided to take a train from Birmingham to New York City instead of flying. Sure, flying would have been easier, but there was something magical for me about the idea of a train ride.

We were hurried and frantic when we got to the train station. Once we boarded, we were taken to our room, which would be our home for the next 22 hours. We tried to relax, enjoy being with one another; Trot, a curious guy in his 20s, played with his iPad and we settled in for the long journey north. 

A few hours after dinner, it was bedtime. When you go to bed on a train, you lay down knowing that the world is passing by right outside your window.

PEACEFUL FEELING

For me, it was an incredibly peaceful feeling; fulfillment of a longing I had had for years, a time for me to just enjoy life. I thought about how lucky I was to be able to take this trip with my wife and my son. 

The train ride met my expectations. I was relaxed and able to take in the landscape. It felt as if I were suspended in time. 

When I was growing up, my mom and dad used to tell me wonderful stories about trains — they took the train a lot because my mother refused to fly. My mom always told me how great it was to spend the night on a train — the “clickety-clack” against the tracks lulls you to sleep. She was right.

While the journey north was enjoyable for me, the train ride was less enjoyable for Anne and Trot because their sleeping accommodations weren’t as comfortable. Their disappointment made me feel less excited about the trip. Anne really wanted to fly to New York City, but I pushed to ride the train. 

It was an adventure I wanted to share with my family, but my family ended up not sharing it with me in the way that I had imagined.

We arrived in New York City and faced new hurdles. Our Uber didn’t show — it was a madhouse trying to get a cab. Plus we had five suitcases. And it was pouring. 

Getting to the hotel was additionally stressful. I was frazzled and Trot and Anne were as well. We ended up spending the afternoon and evening in the hotel. The first day was basically a bust because of the weather. But the highlight of this long, tiring day was meeting the hotel’s concierge. 

We quickly found out we had something important in common.

The concierge had a great personality, someone who you just enjoy talking to — she was warm and helpful. But you often can tell when someone has a sadness about them and I sensed that in her. 

HAVING AN EFFECT

I could tell that my son Trot, with obvious special needs, was having an effect on her. We were talking to her about what we were going to do during our visit and the conversation began to deepen.

It turned out that the concierge had a special needs son a few years younger than Trot and she was carrying a major burden. 

She and her husband had divorced and her son was struggling in school — she was not receiving the support she needed from her local school system. 

We live in Mountain Brook, Alabama where special needs education is so great that people move to the community specifically for that reason. We are also part of our wonderful DYRK1A community!

From what we could tell, this woman lived in an area where special needs is not a priority.

When we were talking with her, trying to share our own experience to hopefully help her, Anne and I forgot about our stress and concern over our trip being disrupted. 

After speaking with her for a bit, we went up to the room and I remembered that I didn’t tell her that Trot, like her son, is an only child. With having an only child who has special needs, there come unique worries and concerns about the future. Who will take care of them? Where will they live? I thought about it and went back downstairs immediately to tell her.

Speaking to her made me feel connected. And I felt grateful for the special needs resources that were available to us back home. Yes, we were frazzled and hassled, but I felt so content and engaged talking to her, because the parents of special needs children share a special bond. I felt that I had helped her and she had helped me. 

Here, in the middle of New York City, I felt so at home because we were talking about the thing closest to my heart — special needs families and the challenges we face. The ongoing conversation with the concierge also reminded Anne and me about the depth of our relationship and shared lives as the parents of Trot.

At one point in our conversation with her, I saw out of the corner of my eye Trot talking with the hotel doorman. Nobody was in the lobby — there was a lull in its usual buzz. I had been so concerned before the trip that Trot would be in someone’s way or he would be bothering someone — New York City moves so much faster than Birmingham. 

I saw Trot talking to this hotel staff member. They were bonding. I was relieved. Watching the two of them talk reminded me that Trot connects with people, he draws them to him, and, because of this, I believe that he will ultimately be okay.

I felt like my family was starting to have a great experience in New York City. In some ways, it was even better than seeing the sites.

PS The train ride home was great — and thankfully everyone was happy!

(Trotter Cobb, a retired businessman, lives in Birmingham, AL. You can learn more about Trotter’s family and his writing by going to http://www.trottercobb.com/)

A “Special” Connection

By Trotter Cobb

Far and wide, country to country and across different cultures, one thing that binds people is parenting special needs kids.

This was brought home to me not too long ago through a Zoom chat with an Israeli diplomat, Anat Sultan-Dadon.

Anat professionally is Israel’s Consul General to the Southeast, an important posting. Based in Atlanta, her region covers a broad swath of Southern states, including Alabama, where I live.

She also is the mom of a special needs daughter, and a mutual friend, knowing this, was the one who connected us. I’m glad he did.

Anat, warm and engaging, has had several important diplomatic postings which have taken her family — her husband, two older daughters, her special needs child and herself — to different parts of the world.

A Full Day

As I have come to learn, a diplomat’s life is a busy one, often 24/7, as they and their staff represent their home country in a variety of ways, from managing visas to meeting with high-ranking officials to creating new relationships.

Anat, for example, had recently spent a full day in Alabama in Montgomery and Selma accompanying the Washington-based Israeli Ambassador to the U.S. on a civil rights tour. Her day also included a meeting with Gov. Kay Ivey and other high ranking officials, and a news conference.

She was back in Alabama a few weeks later to meet with Gov. Ivey and others to mark the signing of a State of Alabama resolution supporting Israel.

However, if you had listened to my Zoom chat with her, you never would have known she was the Consul General from Israel. Rather, you would have thought of her as a devoted and loving special needs mom. Which she is.

The Consul General’s youngest daughter, now 10, is profoundly challenged by a rare genetic defect known as Kleefstra Syndrome.

Her daughter’s name is Niv, which means “expression” in Hebrew. She struggles with a condition that has been identified just in the past few years and there are only several hundred known cases in the world.

My adult son, who we call Trot, is challenged by DYRK1A, something our family has lived with, learned about and navigated since he was born.

Same Bond

In my chat with Anat, I felt the same bond that I always feel when I talk to parents of such challenged kids. We soften when we talk about our children.

Who we are and our professional accomplishments in life just fade away, and we listen intently to the other’s story, deeply interested in their child and the challenges their family and child face.

And there always is a look of understanding on our faces, as there clearly was in this Zoom chat.

Special needs moms and dads make time for each other. This was evident in my Zoom with the Consul General.

Hours earlier there had been a terrible accident in Israel. Forty-five people died and about 150 more were injured during a religious pilgrimage.

I suggested to Anat that our Zoom be postponed but she insisted we go forward. I could sense our conversation was important to her.

She reflected what I’ve found to be the case with most parents and families with special needs children — a willingness to help others. I was interested in hearing about what Israel is doing to help its special needs citizens become all they can be.

I’d read about how much the Israelis loved, included and took care of their special needs community, treating these citizens as a normal part of society. What the country offers in the way of services, facilities and teaching life skills can serve as an example.

I felt especially inspired by hearing how the Consul General has been able to manage a demanding career as an international diplomat — while being a mom not only of a special needs daughter but also of two other daughters, and being a wife as well, and having to move every 4 or 5 years.

During her career, Anat has served in Germany, Cameroon, the Netherlands and Australia. In 2016, she was the recipient of the Israeli Ministry of Foreign Affairs’ Outstanding Employee of the Year Award.

The foreign service has always been in her blood. Her father served as Israel’s ambassador to Egypt, Turkey and Canada, three important postings, and Anat would like to continue in his footsteps.

Yet being a woman at the upper echelon of the foreign service can be challenging, and additionally, wherever her family goes, she and her husband have to make sure there are support services for their youngest daughter. (She is pleased with Atlanta’s offerings.)

The One Comment

Anat admitted all of this can be challenging. She’s happy to talk to other parents of special needs children to encourage them. However, she is reluctant to portray herself as a role model, noting that she has been blessed with a supportive family and resources — things other such parents may not always have.

The Consul General and I are from different backgrounds — I am a retired Christian businessman who has lived much of my life in Alabama; she is a mid-career Jewish Israeli diplomat who has lived in countries across the globe; we are a generation apart. Yet in our conversation I again heard the one comment that above all else connects special needs parents to each other.

We both remarked that when we share our experiences with well-meaning people outside of the special needs community, they often tell us how lucky our children are to have us as parents.

What Anat says to these people is exactly what I say: “We are the lucky ones to have them.”

Olympic Heroes

By Trotter Cobb

They are my heroes.  These young teenagers who struggle.  Watching them compete at a Special Olympics event is deeply moving.  Seeing these wonderful and endearing kids put forth the most sincere effort I have ever seen is inspiring.

Even when they are in wheelchairs or grappling with other disabilities, they have just as much enthusiasm as typical kids competing in a sporting event.  Maybe even more.

My son Trot, a DYRK1A guy, who just turned 21, is one of these special needs Olympians.  My sense is that he and the other competitors want to feel normal, to be seen as typical kids delighting in competing against friends at a sporting event. 

They may even appreciate the opportunity to do this more than a typical kid might, based on their exuberance and energy.  They have passion, gumption, drive, enthusiasm and competitiveness.

They get a lot of pride from competing and being recognized by others who cheer them on.  It doesn’t matter what team they are on, or what school they attend; everybody cheers for everybody.

In fact, this environment is a reflection of our DYRK1A community — where everybody cheers for everybody.

After attending many special needs sporting events over the years to root for my son and the others, I still love seeing the pride and desire to compete on the faces of the kids — and the love and pride on the faces of their parents.

For these contestants, the accolades are special; there is nothing routine or expected about the awards or trophies they take home. Every ounce of recognition they receive is celebrated by all.

And, as often is the case with my DYRK1A son, they want to hear about their events over and over  — so even more pleasure comes in the retelling of their achievements and the continual celebration of their feats.

For these athletes, Special Olympic events are their opportunities to shine. They wait at the gate, well before starting time, anxious for each event to begin.

At my son’s last competition, there was one girl — probably 12 or 13 — standing at the gate anxiously, impatiently waiting her turn. I’ve developed the ability to read the facial expressions of many special needs kids over the years and I could sense she was fearful of being overlooked and missing her event. 

“When is my time? When is my time?” she kept asking, despite her parents promising her she was five events away and her time would come.

Competing in the Special Olympics puts a “normal face” on situations so many DYRK1A and other special needs families find intensely challenging.

For example, I often find myself worrying about Trot’s future. However, at these events everything seems normal, at least for a few hours. My wife Anne and I become absorbed in the competition just like Trot.

When you get there and take in the atmosphere — the pageantry, the color, the crowd, the smiling faces, the cheering and the sea of kids running around —  you can’t help but be happy.  It is so uplifting.

I’ve watched University of Alabama football for years. Yet, nothing I have witnessed rooting for my beloved Crimson Tide moved me more than what I saw at Trot’s last Olympics.

There was a small boy, probably about 14, who before the event was incapable of controlling his arms, legs and head. He was severely challenged. Yet this all changed once his race began. This young man somehow burst into the lead, even as his body flailed. 

You could tell he was giving it everything he had, trying desperately to control his legs.  He was relentless, he was determined, he would not be denied.  He captivated the crowd.

Coaches ran ahead to cheer him on along the sidelines. He finished third in the race.  He finished first in everyone’s hearts. 

He is who I will take away from Trot’s last Special Olympics, another powerful face in the chain of young heroes I have come to know over the years.

At these events, you can get a Coke or a hot dog, just like you can at any typical high school sporting event.  For those few moments, all is right with the world. 

Trot will be leaving this family of friends, as will we. Our family is moving on to the next age group.  For years, he has competed against the same group of kids and we have gotten to know and love many of these other young people and their families.

My definition of a hero is someone who inspires me to do better.

I have never seen any special needs kids complain or cry when competing or waiting for their events to begin. They just give it  their all,  pushing themselves to the limit, enjoying their success.

They never seem afraid, they never seem conflicted. They always seem determined.

They are my heroes.

Birthday Candles

By Trotter Cobb 

At that moment, I took a deep breath.

Tears were creeping into the corners of my eyes.

The birthday candles were lit, ready to be blown out.  We all would share in the honors and then the singing would begin.

Twenty-one candles that my wife Anne had so perfectly arranged, with an extra one to grow on, adorning a colorfully-iced cake that looked simply delicious. 

A happy moment. 

Yet amid the family singing "Happy Birthday" to my now 21-year-old son, a terrific DYRK1A guy called Trot, I was lost in thought:   “If I love this young man, and I do, then this is the moment that I must begin letting go.”

Letting go, I believe, is one of the biggest challenges we face as DYRK1A parents.  And it doesn't just happen at 21.  

It can happen at 2, 10, 16 and points in between -- whenever our child, whom we hold so dear and have nurtured and protected so lovingly, is ready to take a step forward.  A step toward whatever level of independence he or she will achieve. 

Understanding that your son and daughter, in some small or large way, is about to venture off into the unknown can be challenging, perplexing, unnerving and even sad -- no matter how much you've planned.

In Alabama, where I live, and perhaps in most places, at 21 your son or daughter must exit the public school system.  In our case, this is the point in time that Trot finished the programs that our local school system provides. 

It was a day that Anne and I always knew would come.  

What would it be like when Trot -- as well as Anne and myself -- no longer had the daily routine that gave our family such a predictable and productive structure?  The unknown was at hand; logistically, structurally and emotionally. It was a moment of gulping uncertainty, the kind of moment that we, as DYRK1A parents, live with on a recurring basis.

So while this story begins with singing "Happy Birthday," I know in my heart that it is really about my fear of the unknown -- and the comfort and friendship that the DYRK1A community has provided my family and me. 

Past DYRK1A conferences have given Anne and me the opportunity to talk to other parents.  For the most part, we have found that the challenges and concerns we all struggle with are similar and reflect many commonalities. 

One common thread, which I've smiled about at times, is that in many DYRK1A families, it seems that one parent is optimistic and upbeat about their child's future.

In our family, that parent is Anne, a woman of deep religious faith.  She is indomitable, the anchor in our family and Trot's North Star. 

Then there's the other parent, in this case me.  Overprotective, often worried, intrusive, anxious and, at times, anguished.  What will Trot's life be like when Anne and I are gone?  How will he manage?  Will there be people in his life who will love him?

The answers are as elusive as the flames of the birthday candles.  Anne would say, "Relax.  All will be fine.  The candles are burning brightly."  I would say, "Those candles are flickering, alone.  I don't know how long they will continue burning."

What I do know is that I love this son of mine with an intensity that even out-burns the flames on a birthday cake.  We who love and nurture special needs kids develop a unique intensity in our love for them; a passion for their well-being that never quits, a protectiveness that at times, as in my case, can be out of balance.

Trot is 21.  He may not have the mental abilities and social skills of a typical 21-year-old, but he has a unique sweetness that powers me through my moments of turbulence; a beautiful way about him that radiates and draws people to him.  In fact, he is the one in our family who burns the brightest.

Thank you, DYRK1A community, you have been and continue to be my GPS.  Through conversations and friendships with many of you, I've been able to develop healthier perspectives, more informed insights and a growing sense of serenity.  Our journeys as DYRK1A parents can be lonely, but if we have one another we are never alone.

So that's my story for today, except for this:  

We've gotten Trot a cell phone and he's taken to it like the proverbial duck to water.

In fact, I called him the other day to chat and check on him.

“Dad,” he said with a hint of impatience. “I can’t talk right now. I’ll call you back."

***

(Trotter Cobb wrote the above when his son turned 21. He son will be 25 in July.)

Cooking Spaghetti

By Trotter Cobb

How could spaghetti make me the happiest dad in the world?

All it took was a few FaceTime minutes with my son.

My son and namesake, Trotter, who my wife Anne and I call Trot, is a DYRK1A guy.

He had called me while in the midst of an amazing program called Crossing Points, held at the University of Alabama.

The program is for young adults, such as Trot, who have special needs and who are in their late teens and early 20s. The purpose is to give them the skills and guidance they need to function as semi-independent adults.

Trot didn’t know how to FaceTime before the program. But he learned quickly. And gosh did he ever FaceTime me while there!

I would light up every time I saw his incoming call, knowing that I was about to see his sweet face on my screen.

"I cooked spaghetti for dinner last night and it was so yummmmmy!” he exclaimed exuberantly one day. I thought he was going to jump through the phone.

"I want to cook dinner for Mom when I get home,” he told me.

"She'll love it," I said.

"Will you help me?” he asked.

"You bet I will. I will be your assistant,” I promised.

"Thanks Dad!” he responded, as excited as can be.

Trot cooking spaghetti, his favorite food, is something I never could have imagined

before Crossing Points.

Nor could I have imagined him going away for most of the summer; thriving, and meeting new friends who, almost immediately, lifted him to a new level of happiness, confidence and maturity. Friends such as his suite-mate Bobby.

Bobby’s not his real name, I’ve changed it here to protect his privacy. But this kid, also special needs, was a big boost for Trot and our family. He was a little older than Trot and very protective of my son. He would tell us how well Trot was doing.

My wife Anne became friends with Bobby’s grandmother and they chatted all the time.

They were talking on the phone one day when she told Anne what Bobby had said to

her about Trot: "He's my best friend, and he's cool.”

The next time Anne and I talked to Trot we told him what his suite-mate had said about him. "He's my best friend,” answered Trot.

One of the things we’ve tried to do as DYRK1A parents is teach Trot to be more specific,

so I followed that up with, “Now, who is your best friend?” — knowing it was Bobby.

“Hold on...wait, wait,” Trot said, turning to his suite-mate to ask him, “What’s your name?”

Such moments remind me that within my son’s adult body still resides a mind that is not fully developed. This is why helping to navigate a new path for our son is so challenging — and rewarding.

Never did we imagine that he could go off by himself for nearly two months and function so well.

Other FaceTime exchanges with Trot have been as uplifting as our spaghetti chat.

“Guess what, Dad! We went swimming. Everybody clapped for me. I climbed the ladder to the top of the water slide.”

Then there was our chat with Trot about him having gone bowling.

He’s always loved bowling and has won a local Special Olympics gold medal. So bowling is something Anne and I have encouraged.

His bowling report from the Crossing Points program, of course, was exactly what he tells us every time he goes bowling. He always gets two spares and a strike or two strikes and a spare. It never changes.

But so what? Each time he sounds as excited as if he were telling us for the first time. Anne and I respond with excitement as if we were hearing it for the first time.

Whenever he FaceTimed us from the Crossing Points program, I asked myself these questions after our chats concluded: Does he miss us? Does he want to come home? Would he actually be happier in a group setting?

The answers weren’t clear. What was clear, however, was that the two months he was away eased my concern about whether Trot will be able to manage once Anne and I, both in our late 60s, have passed away.

That’s in the future, though. Hopefully a long way off.

For now, I’m looking forward to cooking spaghetti.

***

Son Shine

By Trotter Cobb

I’ve come to think of my son as my GPS.

Whenever I veer off-course onto paths of cynicism, fatigue and despair, it’s his voice, spirit and way with people that get me back on track.

It has been easy to become jaded this past year and distracted from the essence of life.

Politics has torn friends and family apart; a plague has put us under house arrest; travel, movies and restaurants became off limits. It got dark too early at the end of each day; not only outside but inside of me as well.

For me, my son has been my sun.

He continues to shine brightly, this 24-year-old young man with special needs, wherever we go. When we do venture out, safe-distancing and wearing masks, he lights up other people. He has a magic about him — others have told me this. He softens hearts and brings smiles to faces wherever he goes.

Yet he also has the sweetness and innocence of a young child. He lives his life wide-eyed with a never-ending wonderment and curiosity. Though at times this requires a lot of patience from my wife Anne and me, these traits of his never cease to lift and soothe our hearts.

His interactions with others get me back on course. They steady my hands on life’s steering wheel and motivate me

to keep going. Even when the terrain is unfamiliar, his sweet and innocent personality are constants, as people react warmly to him wherever we go.

I believe that we all are God’s children and that the Almighty endows us with gifts. For my son, known as “Trot,” it’s the gift of connecting with people and making them smile. I have seen it over and over as the years have gone by.

Moreover, he cares and worries about others deeply, whether he sees an ambulance whizzing by, someone who appears lonely walking down the street, or somehow senses that someone he knows is having a bad day. He wants everyone "to be happy" -- and says it over and over.

Anne, a woman of deep religious faith, has instilled the same faith in Trot. He, like his Mom, is a believing Catholic, unswerving in his faith in God and Jesus. He loves to pray for people; sick people, lonely people, homeless people. His heart aches if he sees someone struggling, and he often asks me to join him in praying for the person.

Which I do — because he has asked me to.

I believe that people respond to Trot because he responds to them.

At restaurants, especially those where we go often, they know him. No matter how busy they are, everyone -- from the waitresses to the owners -- stops and opens their hearts to my son. "Hey, Trot, how ya' doing?" they smile, already knowing his favorite order.

Then Trot, because he's always been the kind of kid who feels at home anywhere, often starts wandering from table to table, saying hi to other customers, most of whom he doesn't know.

Oftentimes, it makes me anxious. I can see these are folks involved in business discussions or social engagements or just out enjoying themselves with their families. I worry that my son -- who you can easily tell is a special needs person -- is interrupting them, even disturbing them.

Yet, this never seems to be the case. No matter how serious or involved in conversation these other folks may be, when Trot approaches and begins engaging them, simply telling them things such as "have a nice day," they smile and stop what they are doing.

The problem is not Trot. It is me. And that's the way it's always been. Even going back to his younger days. I'd let him roam the grocery store while I was shopping, knowing that he was looking for treats. Yet, I'd be worried.

What if he annoyed people? What if he got in their way? But that also never seemed to happen. He'd always come back with a treat or two, having made at least one new friend and endearing himself to the cashiers and other grocery workers.

It truly is an amazing thing to watch.

I don't believe that people respond so warmly to him because they feel sorry for him. He's become a strong, strapping guy, and though obviously challenged, he carries himself in a way that inspires warmth and puts people at ease. He always has a smile on his face and can't wait to see the next person; he is kindness personified. These are his magical ingredients.

My son, in fact, has made me "famous" -- I've come to be known throughout town as "Trot's dad." That's how I am seen on the outside; perceived as dutiful, loving and protective of my son.

What people don't see is that on the inside, Trot's zest for life, willingness to reach out to others, appreciation of every moment, and kindness are my GPS. Striving to be like him is what guides me and powers me along life's journey.

My sun is my son.