My Smooka

My Smooka is five years old today.
Not sure when, how, or why I came up with this nickname for my baby.  However, the term is found in the urban directory so it can't be all bad? :-)

It's a bitter sweet day.....I love the joy, passion, enthusiasm, and light she brings to her life (and mine).  But there is a sense of loss.  For me, 5 years old is a milestone of sorts - a new beginning or a new stage for her (starting school) and for me (losing my baby).

So I will celebrate her life (probably a trip to Friendlys is in order) and I will reflect on what this day means for me in my fatherhood road.

A Letter to Ciara

Today is my niece Ciara's birthday. Had she lived, she would be 1.

I vividly remember spending Easter Sunday in her room. This was two days before she died. While staring into her eyes and holding her hands, I kept whispering to her,
"I'm right here".

She was sick and battling so I don't know if she heard me or felt me. But I felt her and connected with her.

I find solace in reading "A Letter to Ciara" written by my brother in law to his daughter.

In reading this letter for him during Ciara's Eulogy, the below part is what I most struggled with:

"Throughout the high and lows I want you to know you were never alone.
We did everything good and bad together as a family with God guiding us along the way.
As I continue on in the race I want to thank you for teaching me to enjoy the simple things in life."
- excerpt from a Letter to Ciara (MV)

Thank you Ciara for teaching me about the simple things. You changed my life. You inspire me. I'm still right here, just missing you.

Fathers Day Blues

Fathers Day is a day to celebrate Fatherhood (from a non Dad perspective).
However If you are a Dad, Fathers Day has a different lens.
Today we celebrate, embrace and reminisce about our children.

There are challenges of being a Dad (JohnnyO vs the Lawn Mower)
There are celebrations like D winning 3rd place in his karate competition.
There are milestones like playing golf with JP for the first time today.
We had a walk to the lake today, a bike ride in the neighborhood and a game of Jenga with my little 4 yr old smooka. Not a bad day pre fathers day.

But I realized something today. I am sad. I have been sad since Jan 1. That date was a mark to let my niece Ciara live into 2011. She made it, but not for long.

I miss Ciara. I miss my Dad. Losing my Dad when I was 17 really hurt, I can never explain that pain. Losing Ciara for me was different. I feel extreme sadness.

Ciara's Dad, my brother in law, has been an inspiration for me this past year. He is a living example of how a Dad loves his child, unconditionally.

Don't waste an opportunity. Savor the good times. Earn your stripes during the bad times. I know starting today my fatherhood matters more than ever.

Facing Fear: Zac Smith Story

Funny on a day of new life (New Years Day), this video struck a chord with me. Maybe it was because he was a Dad with small kids. Maybe because he faced death at such a young age (33). Maybe with the start of a new year, it is a good reminder for me to savor every moment with my children. My mind has been consumed in the past months on another child in my life, my 6 month old niece. I am honored to look into her glorious eyes and witness her cheerful smile. I had the privilege to feed her (before she had a feeding tube) and hold her for an entire afternoon. This was one of the most wonderful yet difficult things I have ever done.

This video resonates with me by how Zac handled impending death. I wonder how my niece sees the world. I wonder how my Dad looked at the world prior to his death. I wonder if I could be strong in the face of death. Can I still give Glory to God through word and action? Could I be that strong?

Thank you God for giving me my niece. She is a living testimony (like Zac) that there is precious life through suffering.

In Search of Bobby Fischer

D and I have sporadically played chess over the last years. He picked up chess quickly and impressed me with his ability to accept the competitive challenge of chess. When he asks to play - I play....but can not gauge if that is "interesting" to him.

Most recently, JP has been reintroduced to chess - given his own chessboard and the book "chess for kids" (Thanks Abu & Ita!). He is like a sponge....literally read the entire book in one night....and re-read the book again last night.

We played chess the last two nights. If you can believe it - he got better on the second night (he pulled a castle move on me!).

I have a competitive nature (as some of you may know), so realizing this kid was REALLY PLAYING, I started to REALLY PLAY. Oh did I mention this kid is competitive and wild about sports like me? (smile).

Midway through our game, I looked up and saw my 6 year old across from me - PLAYING CHESS! I was impressed. I was shocked. I was touched. I was happy. My competitive juices reigned in, I just soaked up the moment. He might remember this game someday, he might not. But I always will. Thank you JP - I have found my Bobby Fischer.

LeBron James

For a Dad and his son, there is nothing better than having a catch. If you are follower of this blog you know one of my earliest posts was on this point - "Fathers Playing Catch with Sons" and my longing to have a catch with D.

This past week while picking up JP from Flag Football....D and I headed over the NYA and walked into the gym. Unexpectedly and without warning...D picked up the basketball and asked to shoot hoops with me. In minutes, we were engaged in a true one on one basketball game. I was impressed with his dribbling, his shooting and his speed. I was shocked at not only his skill but his willingness to play and engage with me.

Needing to catch my breath, I held the ball and asked him if he wanted water. He replied, "Nah". I said to him - "D, you are really great at dribbling and shooting!". He said, "Yeh, I guess Dad.....but that's what you taught me, right?"

Yes, son.... just like I taught you.

Parenthood Matters

The TV show Parenthood is definitely striking a personal heart string. I absolutely relate to the family (specifically the Dad) dealing with autism. I hope they continue to bring poignant storylines on this issue.

Most recently the show helps me realize how life moves fast and I FORGET about dealing with autism and I FORGET how far our family has come (or yet to go) This show brings back a lot of those feelings for me - feelings I need to deal with.

For instance, yesterday D had his first Karate competition. Two highlights for the day were: 1) D was in our backyard practicing his moves (literally breathless) before the competition 2)The utter joy/excitement/happiness I saw on his face when he received his ribbon for competing.

In the 9 years of D's life, I have never seen him this excited in preparation or conclusion of ANYTHING. That, was sad to me. But that is a reality of autism....a distancing of emotional and social connection.

He is connecting with Karate. He knows every move without hesitation. This is expected as he knows every state capital AND knows where every state falls geographically on a US map. Literal, factual stuff is an Aspergers thing.....don't ask him to "wait one minute"....because he will literally wait ONE MINUTE. :-).

I am coming to grips with learning about this world of Karate. I am also coming to grips with the Karate financial commitment (can it really be that expensive for a belt test?) but that is another blog :-)

Seeing him yesterday, he maintained focus - accomplished his 3 moves (i think brilliantly) WHILE being in a noisy hotel room filled with kids and parents is no small feat in his world (or mine). That is our parenthood reality.

For a moment he was connected with life's reality and it was good....really good.

Back To The Future

Been thinking about my Dad lately. Specifically thinking about the people who were around me during this time. There were folks outside of my immediate family who supported my family during the time of his sudden death. I am extremely thankful for them and I wanted to ensure I did thank them (even 22 years later) but honestly not sure how to do this - but will give it some thought.

Maybe I wonder how he would handle the challenges I am facing as a father to a child with autism. Maybe I would just like to have that beer with him and speak to him man to man (never got that chance). Maybe I feel cheated that he never did get to meet my wife or my children. Maybe I am grateful for the time I did have with him and more and more grow to appreciate that time. Posting here helps and I need to do that more.

Overall I definitely sense I am a lot like my Dad. But yet there are major differences as well. I am coming to grips with that as I get closer to his age when he died. He was 43.

Anniversary Present

Kids came through with an interactive high tech anniversary presentation. Created on their own using powerpoint. Take a look at PDF version. It doesn't give the interactivity and presentation justice.....but hopefully my sense of PROUD comes shining through. Thanks Kids!

Arthur discusses Aspergers Syndrome

I found the below clip interesting and very empathetic by the creators of the cartoon, Arthur. They have introduced a character with Aspergers Syndrome.

Want to play a Game?

Chess has always intrigued D. On Saturdays when time allows we go to the library where they have an open chess club. This past Saturday the boys were excited to go and upon arriving at the library the boys scanned the room. There was 8-10 young boys (ages ranging from 7 - 14) along with 6 adults. Once a table became free, D's eyes lit up and he was ready to give it a shot. An 11 year old boy invited D to play and cautiously I watched this play out. Knowing this boy played chess often, I did not know what to expect. My concern was that D knew how to play the chess pieces but not necessarily how to protect them (the strategy behind the game).

I watched as my son played his first competitive chess match. There were many wins for him throughout the game (what glee in his eyes when he captured the bishop). But as time continued on, D was left with only his king and 3 pawns. Tears started to well in his eyes knowing defeat was upon him. I let D know he could keep playing or he could drop his king and say "good game" to his competitor. I truly expected a complete meltdown and a table to be overthrown (pieces flying everywhere). D extended his hand (grudgingly) and a lesson was learned. Withing 5 minutes, JP jumped in and played with D and life moved forward (brother against brother).

A lesson was learned that day. As another adult said to me as he watched this game play out, "It is never easy to lose, losing still hurts and we are adults". I don't like watching my kids lose. Yet today's loss felt so much like a win. A leap of faith for D to play, lose, and play again. Sounds like a winning combination to me.

Karate Kid

D is a Karate Master. Well, I am not sure about the exact discipline but he is currently training in a form of Shaolin Kung Fu. Today, D completed an intensive 45 minute test and received his YELLOW BELT.

I watched the entire session while the rest of the family went shopping. Now I know why I needed to be alone. Throughout the session I continually choked up and cried. There was a sense of fatherly pride. There was a sense of shock in seeing his attention, interaction and discipline. Mostly, I was overcome with a realization of how far a road we have traveled. Today was a step forward.

We closed the day with a celebratory trip to Pizza Hut and watched the movie, "Karate Kid". David and I entwined under a blanket on the couch giggling to the instructions "wax on, wax off". During a "fight scene" I looked at D and said, "What's he doing?". D said, "He's doing my moves!".

Today was a day the student became a teacher.
Well done son....well done.

Autism Clusters

Good media on the development of autism clusters. Autism is more prevalent in educated white families. Lets see where this heads.

Writing Study Ties Autism to Motor-Skill Problems

This article from NPR (and related podcast) is a must read for autistic parents.

Interestingly enough, last night I pushed D on his fork using habits. He knows how to do it....but struggles to do it. Socially his eating habit looks in appropriate.

This article speaks to my greatest fears for my son....."being the last person picked in kickball"

Doug Flutie # 22

22 is my favorite number. Maybe Doug Flutie's Hail Mary pass had something to do with it? Recently coming across his autistic son's website (dougflutiejrfoundation.org) brought back memories.

We had a tumultuous couple of weeks for D - surgery, parties, lots of attention and noise - he finally seems to be in rhythm. I invited him out with me last evening and we actually had a conversation. He was engaging, open, insightful and responsive. This truly may have been THE BEST conversation we ever had in his 8 years of life. He also woke up the next morning "bright eyed and bushy tailed". It was truly a conversion. THAT is what keeps me going.

I have a lot more to learn about D and a lot to learn about autism.
Can we focus more on dietary impacts? Yes
Can we focus more on environmental impacts? Yes
Can we do this while staying sane? Yes - with the help of friends, family and the social networks out there.

Thank you Doug Flutie. Maybe you will give me more than just # 22.

Super Duper Pooper

Abi finally did poop in the potty yesterday.

Simple - yes.

TMI - yes.

Life milestones slowly being checked off - yes.

8 Years Ago

Sept 11 will always have signifigance for me. My father worked at the World Trade Center. I spent time there with him "behind the sheetrock" of the Twin Towers (he worked for NY Telephone). A small piece of me was lost 8 years ago today.

It saddens me that I will never be able to take my kids to see "where Grandpa Jack worked"

As a parent, I look back 8 years ago. J was our only child. Rachel was pregnant with D. Today all 4 kids go to some sort of school program. Life moves forward. We move with it. Gaining and losing pieces as we go.

The First Time

We wrapped up an adventurous summer with a trip to a Lake George Log Cabin (courtesy of the Vanda-Leary's). This was the first time J, D and JP were on a boat. We realized that as the boat was hitting full throttle. We wrapped up the evenings with campfires and smores.

My children are receiving life experiences at different times in their life than I received. I am enjoying watching them do things for the first time. The excitement, pure joy, innocence and wonder.

I am looking to bottle this formula for all of us kids (young and old) to experience again and again.

Seizing Dad and Son Moments

The kids returned to school this week. J in 4th. D in 3rd and JP starting kindergarten (see photo). We celebrated the start of a new school year with a trip to Cold Stone Creamery.

After returning home, everyone came inside except D. He was dribbling a basketball outside. I listened and then watched....he was really dribbling!! He caught me standing there at the door watching him. He stopped and said, "Hey Dad, want to play?". I nearly pulled a hamstring muscle running to play with him (hey, I waited years for this moment to arrive). We each took turns dribbling and then passed the ball back and forth. I was in shock - realizing this is VERY RARE to play catch with D (read earlier post). We then played a game of 1 on 1. He laughed heartily as he repeatedly stole the ball from me.

We finished and started to walk inside, D said "Hey Dad, how about we play some baseball?". My jaw dropped. "OF COURSE!", I said (as darkness quickly approached). I pitched as D hit balls far into the night. I ran after the ball as D ran around the bases. After about 10 straight hits, I said, "OK, buddy ONE MORE". D said, "OK Dad, one more crushing homer". I like the confidence, I thought to myself. I pitched and you know what.....he crushed it!

With beads of sweat on our brow we walked arm in arm back into the house. I looked at D as he said, "Dad, that was so much fun I did not want it to end!". Starting to choke up, I composed myself quickly and said, "me too buddy, me too".

Kids with Autism, Graduate, Achieve Dreams

The article title really sums it up for me - Kids with Autism, Graduate, Achieve Dreams.

Every parent has dreams for their children.

For me, the autism word hit me like a rock and the greatest fear is that those dreams would not be realized. My dreams for my children change over the years (from wanting them to be a professional baseball player to simply being happy then to back being a baseball player again)

I am learning to love and let go....and the fine art of balancing that. A healthy balance to support those dreams....whatever they may be and whatever hurdles come our way.