Mike Freni of Beverly will be running his second Boston Marathon this April — and blogging for Boston Bound as he leads up to it. Here is his story:
Over a year ago, our son Joey was diagnosed with Autism. As a means to cope with his diagnosis and to raise money for a cause near to my family’s heart, I ran Boston last year to fundraise for LADDERS, Joey’s program at Mass General.
What started as a means of coping for our family quickly turned into an overwhelming demonstration of support. We were able to raise over $22,000 from generous friends and family.
While the sheer volume of the donations were staggering, what was most important to us was the network of support Joey was building, the awareness that was spreading, and the number of people that could now say they had a friend with Autism.
After trips to physical therapy, visits to an orthopedic surgeon and endless bags of ice, I thought 2008 would be my only Marathon. As easy as it would be to watch this year, I felt obliged to Joey and LADDERS to continue to spread awareness of this debilitating disorder and raise money to help subsidizew the care LADDERS provides to children.
So on Monday, April 20, I will be running the Boston Marathon again for the Friends of LADDERS in honor of Joey.
Much has happened since Joey’s diagnosis over a year ago. Over the summer Joey worked over 20 hours a week with at-home therapists who helped him master simple skills like sitting down, coloring, completing tasks, and using sign language to show he wants more. In December Joey turned three and was transitioned into the Beverly Public School System’s Special Needs Program.
Joey has been seeing his doctors at LADDERS for over a year. In that time, they have discovered food allergies that were causing him to feel ill, helped us secure talented at-home services, and have guided us through Joey’s integration into the public schools system. Every person in the clinic treats Joey as if he was their own son and all are committed to helping him get better.
Founded in 1981 by Dr. Margaret Bauman, LADDERS is a world renowned interdisciplinary program designed to provide services in the evaluation and treatment of children and adults with autism, PDD (pervasive developmental disorder) and related disorders. LADDERS believes that each child merits the opportunity to be carefully evaluated and to receive the quantity and quality of services necessary to allow that individual to reach his or her maximum potential for independence and personal growth, regardless of economic, social and ethnic background.
For all of Joey’s limitations, he is still the happiest person I know. Although he cannot speak, in his own way he tells us at least 10 times a day that he loves us. He works hard at school and has become a favorite of all his teachers and aides. Recently I had a woman who works in the school system approach me at the gym and thank me because her co-worker was having a horrible day until she went and met Joey — and he gave her a big hug.
Like any three-year-old, he loves to swim, dance, and chase his brother around the house. The worst part of his ailment is that you can see that somewhere inside of all of the intricacies of Autism is a wonderful little boy who is held back by the disorder.
His ailment has changed our lives significantly, but I would argue that it has made us all better people. My other two sons (Nicholas, who is 4 and Troy, who is 2 months), will serve as Joey’s support system as he navigates through life. For this, they will surely grow up to be patient, compassionate men.
We also take nothing for granted and can see promise in the smallest of measures. To us, Joey mastering simple skills like pointing will be just as rewarding as Nick’s first home run or Troy’s first touchdown. It is not a lower bar; it’s just an adjusted one. As long as we do not lose sight of this, Joey’s limitations will grow from a perceived disappointment to a continuous reward.
We have high expectations for Joey and will never let his disorder limit him. The journey will never be easy. There will be frustration, pain, and embarrassment along the way. Joey’s disorder calls him to be a recluse and shut off from the world, so I cannot begin to comprehend how brave he is being when he takes a chance and gives a stranger a hug, or when he goes and plays near other kids, or when he gives us a kiss. He is fighting his disorder every minute of every day. For this, he continues to be our hero, and as long as he is game we will do whatever it takes to make him better. We owe it to him.
This year we will be running as a three-member team. I have enlisted my brother EJ and brother-in-law Mike to help extend our efforts even further. I hope to provide updates as to how fundraising is going and how I am doing with training milestones.
Best of luck to the rest of the runners!
If interested, you can make a donation online at http://www.firstgiving.com/michaelfreniboston2009.
