Making ‘Special Needs’ Normal

I admit it, I have an agenda.

It’s not a hidden agenda. As you get to know me, you’ll see I wear my heart on my sleeve.

In the Wilton Patch column I’ve been writing for the last year, I’ve written about my family’s experience with unemployment, prejudice and feelings on guns. I’ve joked about my irrational fear of spiders, my obsession with Facebook, and the occasional chin whisker. Philosophically, I’d rather be open about these things, in an effort for us to find common ground and maybe hear someone say, “I’m so glad you talked about it—it’s the same for me too!”

I want to continue this approach in my “Patch In” space. But that’s not such a secret agenda. So what is?

It’s amazing to use such a public platform to shine a light on people who do good and who are trying to accomplish something that will benefit the larger community we all share. I’ve never talked about my unofficial mission with my editors, but it’s been great that they let me continue to do it whenever I want.

Recently I met a new friend in Wilton who shares a similar life outlook. But her efforts at living as honestly and openly as possible, and trying to emphasize the good you can accomplish over dwelling on life’s difficulties comes from a much different, more personal place.

This friend, Jennifer Ianuzzi, readily admits her beliefs about life have solidified after her third child, 5 year old daughter Sydney, was diagnosed with Smith-Magenis Syndrome (SMS) in 2007.

In the few short years since that diagnosis, Jen and her husband and two older sons have become tireless advocates and fundraisers for research about the very rare chromosomal disorder that affects Sydney. But Jen has also found her own voice to help educate people about what it’s like to live day to day with a family member with special needs.

There’s a line from a page on Jen’s website and blog, where she describes the turning point about how she and her husband Chris decided to face the world shortly after diagnosis: “From that moment on I knew we would not only survive this tragedy but we somehow would turn it into something exciting and beautiful.”

Jen and I sat down recently to talk about the foundation she started to raise funds targeted at therapeutic options and improving quality of life for those with SMS. She’s hosting the foundation’s first community fundraiser on October 15 in Georgetown, a 5K Walk/Run for SMS Research. It’s been in organizing the event that has reinforced for Jen how important community is to families with a child with special needs—and that helps her see the impact she has had on the community as well.

But it wasn’t always so clear.

“When we first got the diagnosis, I really didn’t want to tell anyone at all. One of the things my husband Chris said was that, ‘Whatever image you put out there, is how they’re going to respond to you.’ He said, ‘You need to tell everybody what it is, be very open and honest, and be very confident about it. It is what it is and go about your day. To deny it, to pretend it doesn’t exist, that doesn’t give a good message. Embrace it. We own it, we’re fine, and we’re moving forward. And that’s what people need to see—because that’s how they’ll see you.’”

It was in starting to take a look at labels and stigmas that got Jen thinking. Especially in this part of Fairfield County, where image and perception are sometimes valued above all else, suddenly being “different” was something that she wanted to redefine for herself—and for others. It’s a mission she says is never-ending.

“Particularly living in these kinds of towns, there is a lot of weight placed on the definition of the ‘perfect family.’ There’s such a stigma with ‘special needs.’ Yes I’m raising money with the foundation, but I also have this strong need to change this horrible stigma that’s attached to it. Before I was living one way of life, with no magnifying glass on me, and no ‘differences,’ whatever that means. Suddenly I was part of a group that I never envisioned myself belonging to, and I wasn’t ‘mainstream’ anymore.”

For Jen, early on, that meant starting to talk about it, but figuring out what to say was more complex. “When the foundation came about, I felt that I could go out and tell a sob story for one year, and people would donate to the foundation because they pity me. But when I think about who I am, nothing about me was pity oriented. That’s not how I wanted to raise money, and make an impact. I wanted to raise money by telling how something happened to our lives, and it doesn’t make us any different than anyone else. And this is what you do to try to move forward, you try to make a difference not only in your own life, but in other peoples’ lives as well.”

She’s very conscious about trying to redefine the word ‘normal.’ “That’s my subconscious message: normalizing it, because this is what ‘normal’ is for us. Because everybody’s definition of normal is different. I’m not different, I’m just like you, everybody has something go on in their lives, and we’re all trying to do the best that we can with what we’ve got.

“That what I’ve tried to teach my kids, that yes, are there yucky moments with this syndrome? Absolutely. Are there times when they feel very different than their friends? Yes, but in other ways, we’re just as fortunate as everybody else. And that’s what I feel like the foundation has turned into—yes, it’s raising money, but it’s more about showing that you can overcome something.”

Still, there are negative, heartbreaking moments when Jen has encountered ignorance or lack of compassion. During last year’s Wilton town budget debates, for instance, an acquaintance—upset about select proposed cuts to education funding—made a comment without even realizing how hurtful it was.

“She was very upset that, as she said, the money was being funneled to kids who likely would only wind up bagging groceries at Stop & Shop. I don’t think she knew that I had a ‘future grocery bagger.’ And she was crying and I just said, ‘I know, it’s hard.’ What I wanted to say was, ‘It’s interesting, everybody cries that they want to qualify for services, but if they actually had the diagnosis that would allow them to fully qualify, they’d be devastated.’ You want it, but you don’t really want the life that means you’re going to get it.”

The 5K Run/Walk on October 15 is a way for the community at large to show their support, with opportunities for individuals to race and businesses to be sponsors. Jen says they all help in more ways than one.

“Even local business that can’t afford to give money directly, have found ways to spread the news. The Luncheonette, a local Wilton eatery, couldn’t give money. But what they did that was even better, was put a collection can right at the register. They were not only collecting spare change but spreading the information, to more people than I could have. They wanted to give even though they couldn’t, and so they went to the community. That, in some ways, is even bigger than a $25 race registration. This reached the community, they see that their local place is supporting an event, it gets other people to support it as well.”

She adds, “The ripple effect that a move like that can have, and it gets people to pay attention or take notice, it does so much.”

If there’s any more prompting you need to get involved, perhaps the wisdom comes best from Jen’s son, Ben, who found a quote from Helen Keller that he thought would be perfect to encourage people to participate: Alone we can do so little; together we can do so much.

It’s easy to see that Ben is most definitely his mother’s son.

Interested in participating? Visit www.smsresearchfoundation.org to register in advance. The event is Saturday, October 15, and registration begins at 8AM with a kids’ race kicking off at 8:30 am, a 1.7 mile walk at 8:45 am and the 5K starting at 9 am. Everything begins at Elevation Spinning Studio at 4 Old Mill Road, in the Georgetown section of Redding.