Jun 13, 2013 2 Share

Loud and Clear


The author and her brother as teenagers.
Photo by Donna Fischer

I read a fascinating article this week:  Jeff Howe’s CNN Money piece, “Paying for Finn: A Special-Needs Child.” Be forewarned: Reading this in-depth account of an autism family’s financial situation may be overwhelming, especially if you’re a frugality fiend like me. And as a former program director for a nonprofit that supports adults with intellectual and developmental disabilities, I found myself speaking to the family aloud, making helpful comments like: “Seriously now! Those monthly expenses have to come down! And yes, do explore special needs trusts as soon as possible!” Despite this, however, I couldn’t stop reading; the descriptions of Howe’s young autistic son Finn’s relationship with his older sister Annabel kept me hooked. 

Reading the piece, I felt as though I’d found a family I could relate to, a family that would understand the dynamics and difficulties of my own. Annabel is two years older than Finn, and I’m two years older than Willie. And though Finn sometimes hurts Annabel during his frequent tantrums, her love for him is unconditional. For her—as for me—there is no question about whether the time, money, and effort her parents spend supporting her brother’s needs is, “worth it.” “If it were up to [Annabel],” Howe writes, “Our every last dollar would go to her brother, the subject of her every poem, her every drawing, the first thought she has on waking and tumbling into his room in search of a hug that is rarely reciprocated.” 

Annabel, my sister in spirit, one day it may, indeed, be up to us. And on that day, I can’t help but believe that we will do everything in our power to care for Finn and Willie. We will not always know what to do. In fact, we’ll often find ourselves completely at a loss, but we’ll do the best we can for our brothers. We always have. They may not reciprocate our hugs. They may not be able to stop hurting themselves, or hurting us. But then again, they have surprised us before, and they will do so again. 

***

When I was in the first grade, I wrote my first book. It was a pivotal moment; from then on, I knew for sure that I wanted to be a writer when I grew up. The title of that slim, oh-so-terribly-crayon-illustrated volume? “My Brother.” And now, 22 years later, I’m holding a long-awaited DVD in my hand. It’s a copy of “My Brother,” a 14-minute documentary by Edwin Mah, a graduate student and adjunct faculy member at American University. The short film is about—you guessed it—my brother and me. It’s a little piece of our story, and I’m absolutely terrified to watch it. 

But then I think about why I agreed to be featured in the first place. I think about telling our family’s story, and how doing so might be, in some small way, a help for families like Annabel’s. I think about how many people don’t have a filmmaker on hand to document what it’s like to be a sibling. 

I put the DVD into my computer, grip my husband’s hand tight, and press "Play." 

***

My favorite line from Howe’s piece described a banner day for Finn, Annabel, and their parents: “One day this spring [Finn] hugged Annabel, out of the blue.” 

I could imagine just what that unprecedented moment would have felt like for Annabel. I could picture her eyes opened wide, marveling in the simple delight of a spontaneous hug from her brother. I felt the same way last week, on the eve of my 28th birthday, listening to a voicemail from my parents and brother. The message featured the traditional Fischer family birthday serenade; in our family, such merriment is mandatory. 

I played and replayed the simple song that my perfectly imperfect Mom, Dad, and Willie offered to me. “Happy Birthday to you, Happy Birthday to you … ”  Willie played the piano, and sang along as well. And everything in me heard them—what they were really saying, what they were really singing. It’s what runs through every scene in the documentary, even the ones that hurt to watch. 

Love, loud and clear.



Comment Options

Anonymous

Thank You!

Jeez Louise, what a treat to find this today. I tend to put my pieces away once I write them and ignore the feedback. (It's always a little nerve-wracking). But today I happened to Google the story to see what reactions had been, and found this blog post. I can't tell you how much it means to us to imagine that Annabel will grow up to be as empathic and loving and devoted as you clearly are. It's terrifying, the constant allocation of our resources, and wondering if we're short-changing one or the other of our children. What we want to believe is that, in the end, it will all be just fine. Your post certainly helps me think that's the case. Thank you again for your kind words and hopeful message.Jeff Howe

Amazing! Thank You1

Jeff, what a wonderful surprise to receive your comment -- I'm so glad you liked the piece! I really enjoyed your article as well -- by far the most engaging piece on special needs financials I've ever read. :) Thank you for sharing your story (I definitely appreciate how much courage that takes). I can only imagine how challenging it is to parent two very different and beloved children well, and I'm so happy to know that I could, in some small way, offer reassurance. My parents are my heroes, and it sounds like you have two amazing kids who (very likely) see you the same way.PS - "My Brother," the documentary I mentioned in the piece, is now live here: http://vimeo.com/65740679