When Maci’s mom told us that Maci has a presence about her, she wasn’t kidding. Maci enters Hershey Medical Center for a routine visit and nurses she’s never worked with before light up and call out, “Hi Maci!” She’s a social butterfly, and not moments after you’ve entered her home will she grab your hand and, grinning, pull you to her room to introduce you to Phil, her guinea pig. Maci is brimming with exuberance, a five-year-old clearly wanting to share her excitement about the world with others.
Maci has a rare chromosome translocation, a particular abnormality that has never been seen before, so Maci’s parents and her doctors are learning about Maci as she grows. At six months old, Maci’s first noticeable delay was in not being able to sit unassisted. Now, Maci is a physically active little girl, who’s bright and social but currently non-verbal. While it is clear she understands what is being said to her, she is not able to verbally communicate back.
“In my heart, I know her little voice is in there,” says Lindsey, Maci’s mom. “She does know some sign language and we know some of her verbal approximations for things, but she has to be very frustrated.”
Maci uses her iPad to communicate things she wants and needs, like which snack or toy she would like.
Enter: the iPad. When Maci’s speech therapist initially approached Lindsey about assistive technology for Maci, Lindsey was a little hesitant. She didn’t want Maci to become reliant on the iPad and give up the progress she was making with speech. But, Lindsey explains, “As time went on, I could see that wasn’t the case. She was able to use the iPad, but continued to verbalize wants and needs to us the best she could.”
But the process of getting an iPad to use at home was not simple. Countless phone calls with the insurance company, doctors’ offices, and Durable Medical Equipment (DME) suppliers all seemed to lead Lindsey in circles. Even with a doctor’s prescriptions, the iPad is considered a multipurpose device, so DME companies do not supply them. And while going directly through insurance was an option, the company indicated that the iPad would be denied, and fighting back would surely take months. “With a child who is non-verbal, I felt we didn’t have months,” Lindsey says. So, she began reaching out to others, and that’s when Maci’s occupational therapist suggested she call PATF.
LAMP: words for life is the iPad app Maci uses at school and at home. Eventually she’ll have the option to use it to help her communicate anywhere she goes.
“The application was simple and I got a reply so quickly!” Lindsey shares. “We received the check within a week to purchase the assistive technology. After going through all the stress with doctors, DME suppliers, and insurance… PATF was a true blessing.”
Now, Maci uses an app called LAMP: words for life both at school and at home. While the app initially seemed daunting to learn, Maci is picking it up quickly, remembering where to find words she’s only been shown once. She uses it to tell her parents and her teachers what she wants. “She’s very good with the food categories,” Lindsey says with a laugh, “She loves to eat!” Maci’s parents are excited that Maci now has a way to communicate with everyone, not just those who know sign language or understand her verbal approximations. “Hopefully the iPad and app will diminish her frustrations when it comes to her communication.”
Watch Maci use her iPad to tell us what she wants for lunch:
With 0% interest and monthly payments as low as $20, PATF miniloans are perfect for small loans under $1,500. But loans aren’t all we offer. Our primary goal is to help you get the assistive technology you want and need through the means that make most sense to you. Contact us to learn more about funding options for your assistive technology.