Daily Routines and Autism

"Children with autism are focused on a daily routine with fixed habits and familiar surroundings. ...changes to their daily routine can be very disruptive, shattering their feeling of security and triggering unexpected behavior, experts say. " - cnn.com

I read the above article and I couldn't even imagine suffering the loss of our home. Not the home itself but the sense of safety, comfort, and the sense of "being home". Mostly when I read the above article I thought about David. I remember our struggle when we moved in 2006 to our current home. Immediate after purchase and prior to moving in, we brought the family to the house. This was specifically for David's benefit - so that he could gain a sense of safety and familiarity. We were aided by wonderful neighbors who shared their Legos (which helped shape a sense of normality). He resisted at first. But I am deeply proud of him and how he has handled transitions (this is beyond painful for him).

David's routines have included:
- regular seat at the kitchen table for EVERY meal
- apple and waffle for breakfast EVERY morning

When he was younger, we often could not bring him to new places/homes, loud auditoriums, or crowded places. These were difficult times.

I read the article above and I understand. I know where they stand. I feel for this family.

David: I am very proud of you. I am proud of what you have overcome. I am proud of the boy you have become. I am proud of you because you have perservered through change. I have seen growth in your struggle to deal with adversity (quote from grandpa jack).

I am BEYOND honored to be your Dad.

Stick and Stones

Thursday afternoon was tough for me. While at work, I learned JP fell off a swing and broke his elbow. I found myself not only worried about his physical health, but also wanted to be with him. I felt very guilty about not being there for him. Not being there to catch him when he fell. In fact, when I think about it now, it bothers me and makes me sad.

I know in reality I can not be with my kids through every moment throughout their life. But I take pride in being there. I wasn't and I am coming to grips with that.

Actual exchange when I arrived home.

Dad: JP, sorry I wasn't here for you today Buddy, when you fell...
JP: Dad, that's okay, next time I won't hold my pumpkin while on the swing. Did you see my blue cast? It's only on for a little while....5 weeks.

Fruits of My Loin: AN UPDATE

David rode a two-wheel bike for the first time this past Sunday. He also says he has a "wiggly tooth".

PERSONAL NOTE:
I got "Stumped by the Schwab" tonight in a cause to help out the Cardinal Shehan Center. The Shehan Center in Bridgeport, CT is a wonderful organization supporting kids athletics. This short post reminds me to start "tweeting".

Fruits of My Loin

I noticed something recently. I get emotional at the SMALLEST things my children do. Maybe they seem small to me - but they are big for my children. For example, this past month included David shooting and making his first basket in our backyard. When it went through the net, I jumped up and down like he won the NBA championship. I wouldn't let him see me cry. Now he loves to "play hoops". In fact he has gotten a hoop two more times. This is a big step for him. We learned a lot about David through this experience (this is a future blog post).

JP also just learned to ride his bike WITHOUT training wheels. When I pushed him around the yard and he was able to peddle without help....oh boy, my tears started flowing.

Maybe I am getting soft in my old age? Maybe I am getting too sentimental about these things? Maybe my kids bring out the inner child within me? Maybe fatherhood does matter....

We have a failure to Communicate

A New School Year and more Fatherhood Matters. As other parents out there understand - it is unbelievable to see the emotional and intellectual growth in your children. As a Dad with daughters and sons (all different ages), I constantly need to modify my communication style. So even though I mentally cant comprehend (or accept) my oldest is in 3rd grade....I need to work to change my communication style. No longer can I talk to her as a toddler, but now I must speak with respect to her as a young girl. A girl with feelings, emotions, thoughts, feedback and a beautiful mind. I know this Dad is trying to figure it all out. I suspect this will be a continous life challenge with all my kids. Any wisdom out there? :-)

Cousins - Summer Memories 2007

Father's Day - My 4 Gifts

Father's Day started by playing golf at Centennial Golf Club with 3 great Dads (Cap, Viani, Suarez) whom I have known since my 1st year of college.

Yesterday was emotional for me. I am not sure why. I loved golf in the morning. But I missed my kids terribly. Driving from the golf course, I was excited to see my kids. I arrived home to an empty house. I felt lonely and incomplete.

When the kids arrived home, I was beyond ecstatic. I opened their gifts (see picture). I choked up and was ready to cry. Is it possible to cry over a homemade card in the shape of jacket and tie?

My children are my gift. I want to celebrate each of them. Jaclyn asked, "Dad, did you get all the balls in the hole?". My response, "I sure did, my sweetie!"

Our First Yankee Game

Saturday, June 7, 2008

First Yankee Game

Yankee Cap Day

Last Year of original Stadium

Dogs, Fries, Soda - $57

Tickets - Free (Thanks Beaz)
Water - Free (Thanks Yanks)

National Spelling Bee

We are seriously considering entering David into the National Spelling Bee. He has been reading since age 2 (no joke). I learned that he could read when he said "All the News that's fit to print". He was reading the front cover of the NY Times.

OFF THE CHARTS Intelligence is one of the "side affects" of being on the autism spectrum. Right now he can read ANY word (age 6).

I want to do more for him. But I don't know what. I am struggling right now to know what he needs, what he wants, when he needs to be challenged. I have to respect when he needs to drift into his world and embrace him when he returns to our world.

This is painful for me. I am a problem solver with a problem I can not solve.

Fatherhood DOES Matter

Hey - I made Best of the Web - check out this site! I am always interested in what other parents are doing - so this is wonderful to be a part of that. Thank you Best of the Web!

On Sunday I realized how far we have come and how far we have to go. There was a magic show at a local amusement park. When the magician asked for volunteers, David raised his hand! I was so proud when he was selected!!

It was on stage and his interaction with the magician that it was uncomfortable. There was a disconnect between who David is an how he acts versus the magician's expectation (asking him not so politely to stay still, move back - don't ruin is magic trick!) The end game was the rabbit was pulled out of the box and everybody lived happily ever after.

The major win was David had a blast! He loved talking about the bunny! My take away from this experience is that maybe I am the issue. It was my discomfort not David's. He had fun in his own way, his own time and in his own space. David is cool in who he is.

Maybe I am the one that needs to change, to grow, to accept.

Milestones for my Children

Today Jaclyn celebrated her first Holy Communion. My daughter can now celebrate the Eucharist each week with her parents. What a blessing and what a ceremony today! I am amazed at how she has grown.

I am even more amazed at how time flies by in the life of my children! As a Dad, I am ready for these milestones & I enjoy them. They are touching to me & bring a sense of accomplishment for all of us. So I am savoring & doing my best to live in the moment. I enjoy these days with all my children and I want them to know that.

Jaclyn mentioned that a boy gave her a rose and told her that "he loved her". Now that is a milestone this Dad is not ready for...

Finding God In Autism

There is a book, Finding God In Autism, which I have yet to read. However, it looks very intriguing. Rachel has purchased it - so I will check it out when she is done.

You know, I never asked "Why me? Why us? Why my son?" There is an entire autism spectrum and I know every family has their own battles - for better or worse. We have days when we struggle. We are very blessed.

I do find God in autism. I find God in David and I find God in this journey we are on. I am very blessed to be David's Dad.

Don't Mess with my Boys

My biggest struggle with David being on the autistic spectrum is developing a connection with him. With a lot of hard work over time - we have developed a deep bond and a true love for one another. What I have been trying hard to do for some time is connect and have it stick. Specifically we are working on proper actions/communication in the social setting. We are working hard to have him do simple things - for example: proper hello/goodbye and eye contact.

Two instances happened today which remind me that we still have work to do. 1) Inappropriate physical and verbal behavior at church and 2) He punched me in the ___ (lets say "boys") at Trader Joe's. It's hard to concentrate on the checkout line when you are seeing stars.

These are not intentional acts. At least I don't sense them to be. It most likely is a call for attention or overwhelmed by the situation (lots of people, lots of sensory inputs).

We've made progress. I love him immensely. It's a gut check (literally) and I know we need to stay the course.

Simple but Powerful Days

The last 2 days I worked around the house. Cleaning the garage, cleaning the patio furniture. Getting ready for Spring. Throughout the day all 4 kids joined me outside. They played while I worked. In between work we rode our bikes, played baseball and soccer. What surprised me the most was they wanted to help clean. So we cleaned the patio furniture together - they liked spraying me with the hose!

We went to the park yesterday. Well, actually 2 parks. I can tell each of them enjoyed the days outside because they were exhausted by 7 pm each day. We had a blast.

Simple days but hopefully very powerful connections were built.

Baseball, Hot Dogs, Apple Pie and Child Friendly Ballparks?

Yesterday I attended the LAST Shea Stadium Opening Day. Thank you to Rae, BH, Ed, Sean and Shimmy for making that happen.

I MUST bring my kids to Yankee Stadium this year.
However, after experiencing a wild upper deck at Shea.....Do I really want to expose my children to the inhabitants of Yankee Stadium? Anybody have any suggestions? Shall I dare check out the No-Alcohol Bleacher seats?

I really wanted to see my boys tonight. When I arrived home, they were already asleep. Trying hard to fix that daily weekday routine.

The Game of My Life

I noticed the book, "The Game of My Life" while walking in the supermarket. Initially, I thought "sports book".....cool!

I soon realized it was more than a sports story. I soon realized whom it was about - J Mac.
I could not give him or his story any justice, so take the time to check out this video.

If you've read the book, leave me a comment and let me know your thoughts. I will do the same.
It is stories like this that keep me going.

Autism Speaks... on CNN

Something that saddens me is I often forget the details of where we came from with David.

I guess that is a good thing. But when pressed by others to elaborate on his early years, I struggle. But when I remember the details, I am filled with many emotions. I guess I can go back and read this blog from the beginning. Some day. But I am sure reading it will give me a sense of where we are today. Not that I don't appreciate all the hard work and dedication of everyone. I feel I am living in the now.

Tomorrow (April 2) CNN is devoting a full day of programming to investigating Autism. Wow - impressive. I'll poke around the channel and see of this actually happening.

Check out this section on CNN which covers all articles, videos, podcasts on Autism.

Charlotte's Web: I laughed, I cried

This afternoon I attended a play (class trip) with David. The play (Charlotte's Web) was held in New Haven, so I met the school bus at the auditorium.

I surprised David when he arrived with his classmates. He seemed genuinely excited to see me. In fact, he pulled me over to meet his friends Henry and Jake. It seems like a simple act, but if you know David then you understand. I was shocked at this step of recognition and joy on his part.

I was mentally preparing myself while driving to the auditorium to have low expectations. I guess I feel this especially with David but I think this may hold true with all my kids. It sounds weird to say - but sometimes I find myself so excited to do something with them and be with them. I just don't get that same response back. So maybe it is a protective mechanism? Who knows.

But today on the way home, I was on cloud nine. I enjoyed every moment today with David. Oh this included being surrounded by hundreds (if not thousands) of kids in the auditorium. Kudos to Mrs. A and the teachers!

At dinnertime, he thanked me profusely for coming to the play.
I'll do it again and again and again.

20 Years

My father died 20 years ago yesterday (Feb 16). Yesterday we honored him with Mass. We were blessed to have my friend Gino (whom I have known for 20 years) and his family join us & welcome us in his restaurant. Shameless Plug Alert: If you are in the Mahopac, NY area, you have to check out Gino's Trattoria. The food is fresh and tastes incredible.

It is hard to believe 20 years have gone by. It is hard to believe how far I have come from that turning point in my life. Truth be told, I never thought I would make it.

The highlight of the day was watching the kids. 8 kids in a restaurant - so well behaved, having so much fun together. They had a blast. I looked around yesterday and knew I was blessed.

Dad - we love you and miss you. Your legacy moves forward.

Sweetheart Dance

Today, J and I attended the sweetheart dance. It was a girls date with their daddies. It was square dancing fun! From what I can tell - she had a blast. As for me.....let's put it this way....Last Sunday I was at the Super Bowl (Go Giants!). That was a once in a lifetime opportunity. Today was better. Much better. I would not have traded today for anything in the world. Not even Superbowl tickets.