Saturday is Autism Awareness Night at Red Bull Arena! Help the New York Bulls Light It Up Blue by purchasing tickets using promotional code AUTISM2016 on NewYorkRedBulls.com/AutismAwareness. By using the promo code, a portion of the tickets sale will be donated to Autism Speaks.
HARRISON, N.J. – When it comes to tall tasks, Marc de Grandpre has never been one to back down.
Returning to the New York Red Bulls as general manager in 2014, de Grandpre has faced his toughest tasks head on, bringing success to the club both on and off the field; but de Grandpre knows his work is far from finished.
That work continues this weekend with an initiative held near and dear to his heart, as the Red Bulls will host Autism Awareness Night, a night inspired by his daughter, Julia, and her own battle with the disorder.
Saturday night will mark the second consecutive year that Red Bull Arena will host such a night, and de Grandpre is confident that it will be even more successful than the first go-round.
“In year two, you always learn from the first year,” he told NewYorkRedBulls.com. “We’re engaging all of our partners like Audi, Horizon, and Bayer. We leveraged our network better. There’s been a much more concerted sales effort behind it to drive funds for Autism Speaks.”
It’s a commendable cause, and one that Red Bulls fans surely won’t mind going blue for. But unlike the other challenges he’s faced in his professional career, this one has been particularly difficult.
“No matter how you look at it, it’s affecting too many lives and not enough attention has been brought to it,” he said.
Few know just how autism can impact a family quite like de Grandpre, and Marc is the living embodiment of the sacrifice it often requires. After learning of Julia’s diagnosis, he and his wife, Kim, decided it best to uproot their lives in Atlanta in order to ensure the best possible care for their daughter.
“That’s when we decided to think about where we could get the best services,” he recalled. “We knew we had to think about Julia. That’s why we came back to New Jersey, specifically for Julia.”
For de Grandpre, every day is a new challenge. And while he has demonstrated a propensity to solve problems in just about every facet of his life, when it comes to his daughter, it’s not quite as simple.
“What’s so unique about this developmental disorder is that there is no cause. No one can tell us what is causing this for Julia and every other kid on the spectrum. There’s no cure in sight.”
It’s not for a lack of trying, as the de Grandpre’s have seen “every specialist under the moon” but the lack of answers and solutions has been particularly vexing for the couple.
“There’s nothing more frustrating as a parent as when you can’t understand what’s going on with your child and they can’t communicate why they’re acting that way. I’m not taking anything away from anyone else with other challenges, but not knowing what caused it, knowing that there is no cure, it’s painful.”
Not every parent may be able to relate to his particular hardships, but the pain of a father trying desperately to aid their child is one that resonates on every conceivable level.
For Marc and Kim, each passing day offers a brand new and unknown situation for Julia, presenting an entirely unique and difficult daily challenge.
“You cannot wake up one day and expect to have the same routine with Julia,” he explained. “With our son, Tyler, you know that he wakes up, has breakfast, goes to school, comes back and everything goes according to plan. But with Julia, the night could be different each time; really every moment of the day could be a new reaction, a new behavior. It really keeps you on your toes.”
As a parent of two, his responsibilities do not start and end with Julia. And when it comes to his 12-year-old son, Tyler, de Grandpre knows all too well just how far reaching the affects of autism can be.
“When you look at families that are dealing with this, I think the siblings are probably the ones most impacted,” he said. “Our son is 12 going on 21; he’s compassionate, loving, the most mature 12-year-old I’ve ever seen. But as parents, we have to make sure that he gets to enjoy life and just be a 12-year-old instead of always feeling the weight of his sister’s challenges.”
As Julia requires more comprehensive care, de Grandpre recognizes just how easily Tyler could be lost in the fray, which is why Marc has gone above and beyond to make sure his son receives just as much love and compassion as his sister does.
“She gets a major share of our attention, but we have to make sure we give him enough room and space with us,” he said. “That’s why he’s on the road with me all the time, so that he can have time with me alone and not be burdened by everything that’s going on. Of all the folks in the family, he’s probably the one who feels it the most.”
For his part, Tyler has continually proven to be an invaluable asset in his family’s quest to care for Julia in the best way possible. At such a young age, Tyler has demonstrated a desire to put his sister first time and again, an altruistic trait that brings a prideful smile to his father’s face.
“Tyler does everything. He prepares her breakfast in the morning, he helps her get dressed sometimes, and he’ll read her books when he’s around. He goes to all her events and supports her; he’s involved day-to-day in everything she does.
“It’s not easy for him, but he does it.”
When it comes to the daily struggle of coping with autism, hardly anything comes easy. But on Saturday night, with kids like Julia in the stands impacted by autism, perhaps a unifying effort will help to make that particular battle just a little bit easier.
As the Red Bulls light it up blue, de Grandpre can take solace in his admirable efforts to draw attention to such a worthy cause, with his own shining light as the inspiration for it all.
“I just want people to understand that this is a growing developmental disorder that affects one in 68 kids and families. I want people to understand that, while these kids are going to live long, fruitful lives, they’ll have different experiences than the typical child, and that it’s a challenge for families to live with it because you can’t pinpoint the cure or the cause. Hopefully, someday, we’ll be able to clearly pinpoint the causes and highlight ways to cure this.”
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