For the past 8 years, Boston University Men’s Ice Hockey Team has partnered with Autism Speaks to raise autism awareness and compassion. They have invited families to private practice sessions, hosted meet and greets, helped build play grounds, and volunteered for the Greater Boston Walk Now for Autism Speaks. The team has publicized their involvement with Autism Speaks in media guides, blogs, newspapers, interviews, and at awareness nights in its arena.
This year, their partnership has continued to grow and the players are wearing an Autism Speaks puzzle patch on their jerseys for the entire season. This has created a whirlwind of media attention from TV, radio, and online sports reports. Both the men’s and women’s ice hockey teams have set up Puzzlebuilder fundraising pages, so individuals can purchase a $10 puzzle piece from each player. Their goal is to raise $10,000. Coach Parker also shot a Public Service Announcement about the team’s relationship with Autism Speaks and how important it is to get involved.
This weekend, the following games will be dedicated to Autism Speaks. If in the area, please attend and show your support!
BU Men’s Hockey Autism Awareness Game
Saturday, February 18, 7:30pm
Boston University—Agganis Arena
BU Women’s Hockey Autism Awareness Game
Sunday, February 19, 3pm
Boston University—Walter Brown Arena
Tickets can be purchased via Ticketmaster or at the ticket office window during the night of the game.
Autism Speaks is incredibly grateful to Coach Parker and the BU team for being so connected to the mission of the organization.
Last Thursday evening, I attended a talk at Boston University with Dr. Geri Dawson, Chief Science Officer for Autism Speaks. What follows is the letter that I felt compelled to write to her after hearing her speak.
Ed note: I have written before about Autism Speaks and why I have stuck with them through some difficult times. If you’re interested, please click –> HERE <– to read a post that I believe pretty well sums up my position.
I need to share his words with you. I need you to know how much this matters. To our precious children, of course, above all. But also to US – to their mothers and fathers, their siblings, their grandparents, their aunts, their uncles, their cousins, and, if they’re lucky enough to have them, their friends.
Quicksand And A Rope from Luau’s blog, Run Luau Run
**I am running – pounding the treadmill.
My demeanor is calm, almost stoic, but I am sinking.
Sweat is dripping out of every single pore of my body. I am drenched. The display of the treadmill is spattered.
I’m waiting…waiting for the endorphins to kick in; waiting for the wave of “feel good” to wash over me and wash away the troubles of the day, the 1000 paper cuts that are threatening to bleed me out. I wait, and when I feel like I’ve waited long enough, I double-down and pick up the pace. The sweat continues to pour out of me, now like a leaky bucket losing water.
My breathing becomes labored and yet, I am still calm, stone-faced and waiting.
When the endorphins finally kick in, it is almost anti-climactic.
Yes, I feel good.
Yes, there is some release of tension.
But there is an underlying sense of dread, of sadness, of disappointment, of loneliness.
Something is not right. There is still a weight upon my chest, my shoulders, pressing down. The immediate world around me is no longer bending to my will. The destiny of me and my family no longer seems to be in my hands.
I think about Brooke’s future a lot. I know that any parent thinks about their child(ren)’s future, but when you have a child with special needs, like Brooke has, those concerns get multiplied. What roadblocks will autism throw up against her as an adult? as a teenager? as a tween? next week? It doesn’t seem to stop. A few weeks ago we had a scare that Brooke might be suffering from brain seizures (nearly 1/4 of kids on the autism spectrum will at some point suffer a seizure of some sort). She had been rolling her eyes into her head sometimes at a terrifying rate of 10 – 15 times per minute. In the end, after an EEG and an evaluation, it was determined that she was not suffering from seizures, but rather a motor tic associated with autism.
Not that I would have wanted it to be a brain seizure, but I thought, “Great, just one more thing that is going to make it difficult for her. Great!” Fortunately the eye rolling has subsided immensely. I now see her do it maybe 10 times in a day as opposed to 10 times in a minute.
That, along with a few other factors related to Brooke, have taken their toll I think. My sleep has suffered. My running has suffered. My motivation to do ANYTHING has suffered. I have been sinking slowly in a quicksand that has threatened to swallow me up.
But then last night I was thrown a rope.
Jess and I went to listen to a talk given my Autism Speaks Chief Science Officer Geri Dawson. She spoke on the state of science and research in the field of autism – where we were, where we are and where we just might be going in the not-so-distant future. Jess is much better at conveying events, so I will leave it to her to elaborate on the talk, but I will tell you this – we were sitting with Mrs. SGM, a military wife/mother of a little one with autism. At the end of the talk, Mrs. SGM went up to Dr. Dawson and told her that this was the first time she had been to something like this where she walked away with a sense of hope – a true sense of hope.
That is exactly how I felt.
It took those words for me to realize that my “hope” had been waning over the past few months. It was more of a general deterioration of my hope for the future. As the economy continues to struggle and town budgets get tighter, administrators eye more and more the funds spent on a child like Brooke. Long-term views are replaced by short-sighted ones. It’s happening everywhere and our community is no exception. So my hope for Brooke had taken a beating.
Until last night.
What she said will not impact the budget issues each town faces, but as I listened to Dr. Dawson speak, I was lifted by the possibility that big breakthroughs are right around the corner – that there may be a time, relatively soon, when Brooke’s autism won’t demand so much attention, so much manpower. My hope for a truly independent adult Brooke was reborn.
And with that, a certain amount of weight was lifted off of my chest. This morning I woke up just after 4AM and went for my run (10 miles, putting me over 1,000 miles for 2011!). There was the usual dragging my butt out of the comforts of my bed, but there wasn’t the sense of defeat and dread that has accompanied the moment of consciousness this past month or so.
Did Dr. Dawson’s talk resolve the issues we are currently dealing with now? No. Not even a little. BUT, as I look out over the horizon of time, I can see the storm clouds starting to break. The skies aren’t quite as dark or threatening and I think I see some sunshine coming through.
Thank you Dr. Dawson and Autism Speaks for inadvertently throwing me a rope and bringing back the sun.
Little darling, the smiles returning to the facesLittle darling, it seems like years since it’s been hereHere comes the sun, here comes the sunand I say it’s all right