By GEOFF FOX
Missy Futrell and her husband Carl wanted nothing more than to raise a family of their own.
When they were still childless after 13 years of marriage, the Futrells began exploring adoption. It wasn’t a quick process. For a few years, the Jacksonville, Florida, couple viewed scores of profiles of children up for adoption and were interested in many. Every time, though, adoption coordinators didn’t think the match was right.
But the Futrells were persistent. Eventually, Missy Futrell saw a picture of an 18-month-old boy named Treston.
He wasn’t an “ordinary” baby. Besides being born with fetal alcohol syndrome, Treston – or “Trey” – was diagnosed with mosaic Down syndrome, a type of Down syndrome in which a percentage of a person’s cells have an extra copy of the 21st chromosome. Mosaic Down syndrome is extremely rare, affecting 2 to 4 percent of Down syndrome cases; about one in 27,000 people are diagnosed with it, according to the International Mosaic Down Syndrome Association.
Trey also has autistic tendencies, but none of that mattered to the Futrells.
“The adoption workers made it seem so bad; they said he may never walk, read or speak – and he would need lifelong care,” Missy Futrell said. “That seemed odd to me. They had nothing really positive to say about this child. We had had several miscarriages and if I was having a baby, I wouldn’t care (about the diagnoses). That’s my child.”
Carl, who helps manage a local funeral home, said the couple was equally resolute.
“They told us, ‘He’s not normal, do you still want him?’” he said. “Well, how do they know if we’re the ones who aren’t normal? What’s normal? The way somebody acts? Everybody acts differently. When you love somebody, you see them in a different way. If you love something, it’s 100 percent perfect for you.”
The Futrells adopted Trey in 2008 and despite Trey’s challenges, he thrived. The family was happy and Trey was growing up in a loving environment. The Futrells, who have been married 21 years, also recently adopted a 2-year-old girl, MaryBelle. They have also provided foster care for other children.
When it was time for Trey to begin school, Missy Futrell, who had worked in the recruiting and staffing field, decided to homeschool him through kindergarten and first grade.
A couple of years ago, the Futrells learned about the Gardiner Scholarship managed by Step Up For Students. The scholarship helps parents individualize the educational plans for their children with certain special needs, including autism, spina bifida, cerebral palsy and Down syndrome.
With the scholarship, parents can direct funds toward a combination of programs and approved providers, which may include schools, therapists, specialists, curriculum, technology and a college savings account. The average scholarship is worth $10,000. The Futrells applied for the scholarship and Trey was accepted.
Last year, Trey, who recently turned 10, went to second grade at a private school for children with learning disabilities or emotional issues.
It didn’t go well.
“Trey is an extremely trusting and sweet child,” Missy Futrell said. “He’s very quiet in public, and he is nervous around large crowds, new people and children. At home, he’s a lot more talkative, but he doesn’t talk much in social situations and can be awkward socially as well. He went (to the private school) all last year and made little progress academically. He also doesn’t interact with the others and was bullied. It just wasn’t a good fit for him.”
Thanks to the scholarship’s flexibility, Missy Futrell home-schooled him last year, as she was able to give him an environment that puts him at ease and the one-on-one attention he needs. Much of the scholarship money now goes toward curriculum, including online courses, and various technology, as Trey works much better with computers than pen and paper.
The family has used Step Up’s Purchase Assistance with Best Buy Education program, a partnership that allows Gardiner Scholarship parents to easily purchase items, many of which are pre-approved. Best Buy Education bills Step Up, which pays through the student’s scholarship account. Parents praise the program because many struggle to pay for all the care that comes with raising a child with special needs, so it can be tough to wait for reimbursements out of the scholarship account for big-ticket items.
“When I heard about Step Up’s Purchase Assistance with the Best Buy Education program, I jumped on it,” Missy Futrell said. “He really does so much better with technology. When he has to write, it could take him 45 minutes to an hour to do a 10-question worksheet, because he has to make each letter perfectly or he (gets frustrated). Through use of an iPad or computer, I can see more of what he’s able to do. With the technology, he clicks it or touches it and he just likes it so much better. I’ve heard that a lot of kids with special needs are like that.
“We use Time4Learning online courses that has all different subjects. We use it on his computer and his confidence is really growing. When he does something right, it tells him, ‘Wonderful!’ Or, if he’s wrong, it tells him in ways that don’t upset him. I can gauge where he is and what he knows. And there are so many apps on the iPad. I can take a picture of his worksheets and it converts them to where he can type in the letters rather than write them.”
Among other things, the family has also purchased a Phillips Hue Table Lamp and color ambiance kits. Whenever Trey starts getting overwhelmed by something, they switch the light on to a color that helps calm him.
Thanks to the Amazon Echo, which uses the voice-controlled service, Alexa, Trey can also listen to relaxing music when he needs to. Because the device is compatible with the Phillips Hue Lamp, it helps him understand his moods.
“If he’s upset, we tell (Alexa) to make the light angry and it turns red,” Missy Futrell said. “He can see in color what his current mood is. It makes him understand more what he’s feeling and if he’s mad, then he needs to relax. It helps identify his behavior and also helps the people around him.”
Carl Futrell described Step Up’s Purchase Assistance with the Best Buy Education program as blessings for which his family is grateful.
“In order to raise children with special needs, you have to have those who are willing to help,” he said. “These things we can outsource, it helps our family. It’s hard to make ends meet. You keep working and working and you get that income, but you miss that time being with your family.
“Now, he can call me on Facetime on his iPad and just say, ‘Dad, what are you doing?’ And I ask him how his day is going and if he’s being good for his mom. He’s usually playing with his stuffed animals – he loves monkeys. He pretends they’re the Ninja Turtles.”
For the Futrell family, this is their normal. And it’s the family they always dreamed about having, one connected by unconditional love.
Step Up For Students, a Florida-based nonprofit, empowers parents to pursue and engage in the most appropriate learning options for their children, with an emphasis on families who lack the financial resources to access these options. By pursuing this mission, Step Up For Students helps public education fulfill the promise of equal opportunity. In addition to the Gardiner Scholarship Program which helps parents customize the education of their children, ages 3 to 22, with certain special needs, Step Up For Students also administers the income-based Florida Tax Credit Scholarship Program (FTC). With the FTC scholarship, economically disadvantaged parents of children in grades kindergarten through 12 are empowered to find the school – private or out-of-district public – that meets their child’s learning needs. Step Up For Students’ dedication, however, doesn’t end when students are awarded one of these scholarships. Through its Innovation Fund, Step Up helps maximize the impact of the scholarships by creating and enhancing education-based innovations that propel children toward a brighter future. To learn more about Step Up For Students, or to find out how you can help, please visit www.StepUpForStudents.org.
A COPY OF THE OFFICIAL REGISTRATION (CH-14609) AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE 1-800-435-7352 WITHIN THE STATE OR ON THEIR WEBSITE WWW.800HELPFLA.COM. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.
Geoff Fox can be reached at firstname.lastname@example.org.