Dear friends and family,
On May 2, 2010, I'm embarking on my first charity bike ride. I've done organized bike rides for fun before, including really long ones (100 miles in 6.5 hours back in fall '08), but this one is for a special cause. This one is personal.
It's a charity bike ride to support the Flutie Foundation for Autism, a regional foundation that supports various autism programs, including some that our son Julian has been a part of. That's where it gets personal for me.
Many of you may already know, but for those who don't, our son Julian was diagnosed with autism about four or five years ago when he was still a toddler. He's seven years old now, but still has lots of difficulty communicating. His vocabulary is fair. You can show him flash cards and he can tell you what they are when prompted, but that rote memorization has not yet translated into functional verbal communication.
When he wants to communicate with us, he uses what's called PECs, which are little laminated pictures of things he might want Verlcroed to a binder. He'll hand us the picture on a sentence strip when he wants something. We push him to verbalize the strip, and he does from time to time.
But sometimes this system breaks down and he reverts to banging his head on walls or other objects when he wants something. He also bangs his head when he is hurting in some way, especially when he is sick with an ear infection, stomach bug, or whatever.
Last fall, his head banging landed him in the hospital where he had to have brain surgery to relieve pressure from bleeding inside his skull. He's largely recovered from that very frightening incident, but he still has to wear a helmet 24/7 with few exceptions. The photo at left was taken before that incident.
Despite all his challenges, he's a very loving boy. He's very gentile with his younger sister and loves hugs. When he's excited, he runs around windmilling his arms and making lots of happy sounds (though non-intelligible). He's also very good on the computer and loves to swing (we've mounted two swings on the ceiling of our living room).
We're slugging through as a family, but it's a challenge. Fortunately, there are many helpful services we've been getting, both publicly-funded and nonprofit services.
He's starting a new school that we're really excited about call Realizing Children's Strengths. It's a special school for kids with autism with a one-on-one teacher/therapist to student ratio. It's an outside service, but the City of Waltham's school system is paying for him to go there. The State of Massachusetts, through various public programs, is also helping with therapists, family support, and possibly even respite care.
We're also getting an augmentative communication device to help him "talk." It works like a digital PECs system that audibly says the words as he presses the buttons (it's actually an iPod Touch with special software). A local Easter Seals program funded by the Flutie Foundation is how we found out about these devices. The Flutie Foundation is also funding gatherings for parents, special camps for kids, advocacy, and more.
We're grateful for all of these supports and the generosity of our friends and family. But we also want to give back when we can. That's why I'm doing this 30-mile charity bike ride for the Flutie Foundation for Autism, and the important role that they serve in the community.
Today, I'm asking you to sponsor me on this bike ride. I've set an initial goal of raising $700 for this ride, but I really hope to hit $1,000. That's a small drop compared to what our family and others like us have gotten in return. Whatever you choose to give toward that goal, we are grateful.
You have our very sincere thanks,
Brian, Daria, Julian, and Ani
PS - There are others who gave offline, or prior to me setting up this donation page, so let me just give a shout-out to:
- Kyle & Paula Miller
- Mark & Kim Miller
- Maureen O'Connel
And a special thanks to you for whatever you choose to give today!