A Blessing in Disguise
Fort Collins couple takes the lessons of autism to needy communities abroad
By Erin Frustaci
efrustaci@fortcollinsnow.com, (Bio) efrustaci@fortcollinsnow.com
1:05 a.m. MT Mar 25, 2008
Good days for Luke Purvis are the same as good days for any toddler—they start with the willingness to get up and get dressed. They are the days when sitting down for breakfast is met with smiles and getting buckled in the car seat to go to pre-school happens with little or no fuss. Nap time is a breeze, playtime is bliss and bedtime comes promptly at 7 p.m.
A bad day, on the other hand, starts and ends with violent tantrums. On bad days there’s hitting, flailing and urinating on the floor.
“Every decision I make is challenged,” said Luke’s mother, Ariana Iacobucci. “It’s just a struggle.”
Luke was diagnosed with autism last year, but Iacobucci, 32, said she knew he was different from the moment he was born. His parents noticed warning signs such as delayed speech and that he often formed obsessive interests.
“Initially I was in denial that it was autism,” Iacobucci said. “Without the information, it has a stigmatism that was frightening. No parent wants to imagine their child is going to be different their entire life.”
But as a parent, Iacobucci has learned how to patiently soothe her son on those bad days, so life can continue on as normally as possible. For 4-year-old Luke, those soothing techniques often involves deep-pressure hugs and music. Like many other autistic children, Luke has an extraordinarily good ear. He can differentiate between classical composers—something his mother definitely didn’t teach him considering she doesn’t know Bach from Mozart herself.
Lately, one of his more obsessive interests is letters. Staring up with his deep brown, almond shaped eyes, Luke enthusiastically asks his mom how to spell my name. With a marker in hand, she carefully spells it out on a white sheet of paper. She explains that he wants to see it because he is cataloging words.
Today is a good day.
But even on the worst days, Iacobucci counts each and every blessing. She and her husband, Matthew Purvis, 36, live a pretty good life. They have a nice home in a safe neighborhood where they can raise their two happy boys, Luke and his 2-year-old brother Sean. Purvis is a cardiologist with Heart Center of the Rockies, and Iacobucci, who has a background in international affairs and business development, is a stay at home mom. While it is no easy task to raise an autistic child, Iacobucci is grateful to have the support she does because many families in similar situations do not.
“After we sort of got over the tragic part of knowing our child is autistic, we were quick to say let’s find out everything we can and get him all the help we can because we have lots of resources,” she said. “There’s no reason we shouldn’t try everything available.”
Managing Luke’s therapy schedule has become her full-time job and Iacobucci is thankful she is able to have it that way. She has often wondered what people with fewer resources and little education about autism do to manage their autistic children because it can be a very difficult thing. That thought sparked an idea. Because Iacobucci has wanted to find volunteer work outside the United States for a while, she decided to create an organization called Hearts Abroad, with the goal of providing health and wellness information and resources to underdeveloped communities in other countries. Her first project will be a workshop in Cozumel, Mexico this summer. She plans on bringing an autism expert and a child psychologist from Colorado to talk with social workers, teachers and parents about what autism is and how it can be managed.
“It’s inspiring,” Purvis said of her wife’s new endeavor. “She has a vision and she has dealt with these challenges on a personal level. In this type of situation, you have two options. You can feel like a victim and feel sorry for yourself or you can go out and help others.”
Iacobucci chose the latter. She figured she could put her skills gained from her background in international affairs and her experiences with autism to help people in other countries. Logistically, Mexico seemed like a good place to start, given its close location.
The first step was to do some research. Iacobucci wanted to see if there were any other organizations working with special needs children. The few she found all had religious ties. From there, she started contacting orphanages and a variety of agencies. Through email, she made contact with Rosa Isela Pirez, who is an active volunteer with two non-profit organizations that work with children.
In mid-February, Iacobucci flew to Mexico where Pirez took her to the social services agency. Pirez explained that though there is a vague idea of what autism is in her community, children with special needs are lumped into one category—which they call “intellectual deficiency”—and are all treated the same. Iacobucci visited the special education school in Cozumel and was also taken house to house to visit with children and their families.
“It’s very important when somebody can open their heart to give,” Pirez said. “This is a field we don’t know much about. ... There are so many needs. I spoke directly to her, ‘Are you ready? Because as soon as you get into this house and see the pain and everything, you cannot forget. You have to do something. If you want to do this, then I am with you. I am going to do whatever it takes.’”
Pirez said that there is a center for autism in Cancun, but that it is not very accessible for people in Cozumel, since they would have to take a boat to get there.
“They don’t have money to eat, you think they have money to do that?” She said. “That’s why this is a good opportunity.”
The workshop, which is scheduled for June 20, will focus on explaining how to identify autism and then explain some of the ways to manage it at home and at school. Pirez said she sees the workshop as the beginning for people in her community.
“My main message is there are techniques that exist that are extremely helpful and can help children with autism develop more normally,” Iacobucci said. “What I’ve learned is if you do nothing, those children will not develop on their own. They need help.”
Purvis said his wife’s mission since the beginning has been to help others. Once she started to reach out, so many others were eager to lend a hand. She has received donations of airline miles to cover the speakers’ flights, as well as small cash donations from people in Fort Collins that will help cover operational expenses
Purvis said his wife motivates him, as well. Though Hearts Abroad is in its infancy, in the future the couple hopes to expand in other directions within the medical realm.
“I think ideally the point is to look beyond our borders and beyond what we have here at home or what we have that other people don’t,” Purvis said. “In terms of the opportunities available to Luke, they are almost limitless here when it comes to educational programs and the commitment of people involved. ... It’s really sort of became a blessing in disguise.”
