Tuesday, May 15, 2012

Being a Parent of a Child with Autism and What "Pathfinders For Autism" Has Meant to Me."

Last night was pretty special. I had the opportunity to speak in front of about 100 people and talk about being the parent of a child with autism and how the wonderful people at Pathfinders for Autism have impacted my life. As a result of my relationship with Pathfinders I have become friends with Alisa Rock, fellow autism parent, autism blogger and she is a board member for Pathfinders. Last night she suggested that I share a copy of the speech I prepared. While not exactly what I said (I did use some creative license) this captures the spirit of what I shared with the audience.

When Rebecca first asked me to speak today she told me that many of you are longtime supporters and that many of you are not parents of children with autism. To you I am truly grateful. You have given a tremendous amount of your time and money to an organization that means a great deal to me and to people just like me. It is hard to articulate what being the parent of a child with autism is like but my wife and I often say “ if you don’t laugh, you’ll cry.” Let me be clear… I love my son with all my heart. He looks exactly like my wife and I always imagined he would. Mikey has a mop of blond hair with big sparkling blue eyes and he laughs like an elf from one of those Christmas cartoons we all watched as children. But his Autism is something that we never expected and it wears on me every day… the center for disease control told us recently that 1-88 children will be born with Autism and that for some reason, in the state of Maryland, that number jumps to 1 in 55. ASD or “autism spectrum disorder” is so frustrating, not only for the parents, but for those trying to solve it. The Puzzle piece really is appropriate. No one knows what causes it, but they have some ideas. No one knows how to treat it, but they have some ideas. Some things help some kids but not others. The disruption to your regular life is incalculable. Simple every day routines like shopping or going to the park are now “adventures” at best and can often turn into nightmares. My wife and I have another term we use, divide and Conquer. That’s where we each take a child to accomplish the necessary and typical aspects of our life. Mikey has a big sister and she has a life too and frankly she deserves to live it like a typical child. So we go out of our way to allow her to live it that way. But that means that her brother doesn’t get to attend her basketball games because the noise and the activity would be too much for him and he wont get to attend her concert tomorrow night because he just CANNOT be quiet for the 90 minutes the performance will take.

And that is why I am grateful for Pathfinders for Autism. For in addition to the vast resources they offer on their website I know these ladies work their butts off (usually seven days a week) providing seminars on every topic of need and interest to families like mine. But more importantly, Last summer they created an environment where my family felt safe to have dinner together in public without the scrutiny of others watching us. They allowed us to take our family to a baseball game and to eat ice cream and be together as a family. When you have child with Autism, it is very easy to draw inside and feel alone. because of Pathfinders, I feel a lot less lonely. I’ve made friends through this organization that I am sure will last a lifetime. So again, I ‘ll say thank you to each one of you for being here today and supporting this wonderful organization, I am truly grateful.

Afterwards, I had many people thank me and congratulate me for my presentation including BJ and Polly. That meant more to me than words can describe. Everyone in that room was giving something to make the world better for families dealing with Autism and that really is the point of all of this.....

Thank you for reading, together we can do great things!


BTW I hope to see all of you at Camden Yards on May 27th, still some time to get your tickets, click here 

1 comment:

  1. Let me be the first to congratulate Mike on an outstanding speech! I am proud to say that not only is Mike my cousin, but I am also the father of a son who is autistic. I remember when my son was younger than Mikey, and his mother and I had to do many of the same things Mike describes here. Today, my son Ryan will be 16 next month, has had the benefit of early diagnosis and therapy, and has a bright future ahead of him. That would not have been possible without the hard work of people like my cousin and those at Pathfinders for Autism. Keep up the great work!