Three and a half hours by car with one stop for a break.
That’s how long it takes the Mezzei family to get from Tampa to the Down Syndrome Center at Hope Haven Children’s Clinic and Family Center in Jacksonville at least once a year.
The Mezzeis believe the trip is worth every minute.
Because once they’re inside the Beach Boulevard center, they get tools that make the rest of the year much easier for their 5-year-old son Matthew, who was born with Down syndrome.
Families travel from down the road and around the world to Hope Haven to get assistance they say they can’t find in their own backyards.
In a society where parents of children with Down syndrome often hear what won’t be, Hope Haven points out what can be. Then it provides resources to the families to help make what once seemed impossible probable.
It’s made the nonprofit so popular that there’s often a wait of nine months to a year to get in for an team assessment focusing on the educational potential of the child.
Although Hope Haven offers a variety of therapies, including physical, occupational and speech, for children who can come in regularly, that’s not what brings the Mezzei family and others from out of town, state or even country. They may have great resources in their own communities, but some families are looking for second opinions and others are seeking additional support.
“We felt we were surrounded by great therapists,” mom Lisa Messei said. “None had specialized knowledge of Down syndrome.”
Laura Watts, the founder and program director for Hope Haven’s Down Syndrome Center, does.
In addition to a background in teaching, Watts is the mother of Jonathan, 24, who volunteers at Hope Haven a couple of days a week. Jonathan was born with Down syndrome.
Watts started the Down Syndrome Center in 1996 as a way to help children in all areas of their growth and development.
“We are strength-based and not weakness-based,” she said.
The idea is to find a child’s strengths and then take them to the next level, Watts said. She wants the parents she works with to understand their children can learn most anything other children learn. They just learn it a little differently and at a different pace.
In addition to Watts, there is another educational consultant, six therapists, a behavioral pediatrician and a behavior specialist. There are no standardized tests. And every child receives different recommendations, depending on their needs and strengths.
The team looks at everything about the child — and the family — that will help the child grow. Sometimes that’s helping deal with behavioral issues. Sometimes it’s helping with problems in the classroom.
For the Mezzei family, Lisa and John were concerned that Matthew had difficulty communicating his thoughts because his speech was unintelligible.
But Hope Haven staff knew through observations that Matthew understood what he was hearing, and he was capable of communicating. He just needed the tools.
Now Matthew uses a computerized device that allows him to answer questions by pushing buttons with pictures, sentences or words. It doesn’t just help Matthew at home; he’s also answering questions in circle time at school, his mom said.
They didn’t feel they were getting the same message about Matthew’s strengths in their own community.
Hope Haven “made us feel he is doing great,” Lisa Mezzei said.
Many parents come to Hope Haven for similar reasons.
“Often, when you have a child who is different, you get a long list of what your kids aren’t doing,” said Royellen Moore, of the Orlando area.
But she finds that the people at Hope Haven are more positive, and they focus on what her 6-year-old daughter is doing.
Much of the Moore’s focus in the early years of their daughter’s life was on her medical needs, including open heart surgery and epilepsy.
So when the family came to Hope Haven, Watts helped them focus on their daughter’s educational needs, showing them what the little girl was capable of doing.
For instance, it didn’t occur to them that their daughter could tell the difference between different types of animals. But when asked to find a frog, the little girl was quick to respond.
“She picked up the frog and brought it to us,” dad Michael Moore said. “Wow. I didn’t know that.”
There’s little doubt in the minds of those who walk through the doors at Hope Haven what makes this place different than any other.
“I think the gift’s Laura,” Royellen Moore said. “She took her personal experience and turned it into a resource for all of us.”
Some make the drive in a few hours.
Some make the trip in a day or two, including from Syria and Kuwait.
And then there are those who decide the trip is too much, and they just move to the area.
Doctors in Brazil told Juliana Eras de Borgia about Hope Haven when she was seeking help for her youngest daughter, 2-year-old Ana Carolina, said her stepfather, Angelo Moneta. De Borgia doesn’t speak much English. Moneta speaks some English, but it’s limited, so he communicated with the Times-Union via email.
The whole family moved to St. Augustine to be closer to Hope Haven at the end of 2011. Moneta said he has been thrilled with the help Hope Haven has offered Ana Carolina and the rest of her family.
Moneta worried about how he should behave with Ana Carolina, and Watts explained to him what she tells everyone: Ana Carolina should be loved and cared for and educated like every other child.
“We all are happy knowing that Hope Haven Clinic and Mrs. Laura Watts will take care of our princess Ana Carolina,” Moneta wrote.
And he commented that the cost is reasonable. The prices vary, depending on the child’s needs and how many members of the therapy team they see, and there are financial aid and scholarship opportunities.
For parents and guardians, Hope Haven is a place where they can find support, answers and hope. For children, it’s more about adventure, encouragement and fun.
As physical therapist Kris Owen watched one day last week, Andi Wright, 5, of Orlando, climbed a ladder to reach the top of an indoor slide.
Owen wanted to make sure Andi was using the muscles she should — and suggesting ideas to mom Maureen Wright about ways she could help develop the muscles more.
And Andi’s mom wanted to talk to Watts about her transition into kindergarten.
That’s all great, but Andi didn’t care. She was ready to zoom down the slide.
“Ready,” said Owen. “Set.”
And then together, just before Andi started down the slide with a big smile on her face, she yelled out in unison with Owen: