- Associated Press - Tuesday, January 28, 2020

NORTHBOROUGH, Mass. (AP) - Pulling out novel after novel from her canvas bag, fifth-grader Madisyn Lathrop said she’s almost finished reading the entire “Little House on the Prairie” series.

“I have one book left to read,” said Madisyn, 10, an avid reader for as long as she can remember.

But when she started picking up chapter books in third grade, she started coming home every day from school in tears.

″(I would tell my mother), ‘I’m trying, I’m trying,’ but (my teachers) kept telling me to just keep (on) trying,” she said.

“It was causing her a lot of anxiety, because she wanted to keep up with her peers,” said Madisyn’s mother, Tracy Lathrop. “She wants to do well but she was getting very discouraged and was coming home every day crying, saying, ’Mom, I just can’t read (the material). (Her teachers) thought it was more about laziness and (Madisyn) was just getting so upset … she always said, ‘They don’t get it, Mommy.’ It was sad for me because when she was younger she really loved (reading).”



Madiysn has been diagnosed with visual impairments – alternating exotropia, convergence insufficiency and ptosis. She has another “invisible” disability called Ehlers-Danlos syndrome, a connective tissue disorder that causes muscle pain and fatigue. which includes her eyes.

″(Her impairments) are not tangible and you can’t see them, so it’s hard for people to understand when looking at her,” said Lathrop.

These impairments mean Madisyn can’t read standard-size print, typically in a 12-point font. Lathrop said reading wasn’t a problem when Madisyn was younger because most children’s books contain larger printed words.

“She doesn’t have an acuity issue, it’s that her eyes just don’t team well together,” said Lathrop of her daughter, who reads well with 20-point font. “She can see when she’s walking around but when she tries to focus on something, especially something small, her vision becomes blurry and doubled, and then she gets migraines. She’s also had episodes where she’s lost her vision for periods of time, just from (her eyes) being overwhelmed.”

There are about 568,202 children with vision impairments nationwide, according to the American Foundation for the Blind’s 2017 American Community Survey. According to its 2016 data, there are 9,525 children from 0 to 17 years of age who have vision impairments in Massachusetts.

While attending a local school with no large-print materials – which are typically printed in 18-point fonts - in its library, Madisyn often read in the corner of her classroom with a magnifier plugged into the wall while her classmates read at their desks. But it was “very clunky,” said her mother, adding that reading on computer screens would also cause her eyes to tire quickly.

After changing schools, they encountered the same thing, she said, with a principal allegedly telling Madisyn to “tell your mom to get you some glasses.’”

Lathrop, who has congenital heart disease, said she relates to the frustration of those not believing in an “invisible” disability, because it’s not visibly obvious.

But “not all handicaps are visible,” said Lathrop, who now home-schools Madisyn.

On top of being hard to find, large-print books are also “definitely more expensive,” she said. “You can get a regular chapter book for maybe $6 or $7. (Large-print books) probably go for $20 to $30.”

While the Northborough Free Library has about five rows of large-print books for adults, it has none for children and young adults, said Lathrop. While visiting other surrounding libraries, they heard the same response.

“No, sorry, we don’t have that,” except for the Milford Town Library, which has about two small rows of large-print books, she said.

Milford’s youth services librarian, Michelle D’Amato, said its large-print selection for children - up to fifth grade - extends to about two dozen books. She said it’s “not too common” that she hears young adults request large-print books, but when they do, they order those materials through the Central and Western Massachusetts Automated Resource Sharing (C/WMARS) network, of which the Nortborough Library is also a partner.

“I was shocked. I just didn’t get it,” Lathrop said. “Most people just think about how when you get older your eyes need magnification to read, but people don’t think that kids can have this problem, too.”

Under the C/WMARS network, there are about 500 large-print titles for juvenile fiction titles, said Northborough Free Library Children’s Librarian Katrina Ireland, and teens have about 150 additional large-print titles. The exact number of titles available in standard print, however, cannot be searched via the C/WMARS system, said Ireland, though the number is expected to be much higher than what is offered in large print.

If Madisyn orders a book from this system, it takes about four days – sometimes longer – for them to arrive to her local library to pick up, said Lathrop.

Sometimes she orders books through the Worcester Talking Book Library, which provides print materials for those with visual or physical disabilities. On other occasions, they buy books from Amazon.com.

″(The Worcester Talking Book Library) is really great because otherwise she wouldn’t have access to these books, but it’s nice to be able to walk into a library and just pick a book off the shelf like any other kid,” said Lathrop. ”(Madisyn) was talking to (Ireland) and was just really discouraged, because she had went through probably every book in (the library) trying to find something she could read.”

In August, she finally ordered her first book from the library.

″(Madisyn) was beaming,” said Lathrop. “She was just so happy – from that day she was inspired to help others like herself.”

To give all children and young adults equal access to print-reading material at the Northborough Free Library, Madisyn is raising money to start a large-print collection for those under 17 years old, hoping to take her effort statewide, and possibly even nationally, said her mother.

After speaking at a Northboro Junior Women’s Club meeting in November, the club donated $250 to Madisyn’s fundraiser and started her collection by donating books from the “Little House on the Prairie” and “Harry Potter” series.

“Before I thought I was the only one,” said Madisyn about feeling different in school. “But once (Ireland and I) started doing research, I realized that large-print can be good for all kids, especially for kids with dyslexia who already have trouble reading. I know a lot of other kids with visual impairments, and they also aren’t able to come to the library and pick a book off the shelf like me.”

Having a couple friends with dyslexia, Madisyn said “they read small-print books, but have a lot of trouble with it.”

“We’ve only had a handful of requests for large-print at this library,” said Ireland, but said she wonders how many more children would come looking for books if they knew the library had a decent collection for them.

“Many kids may feel disenfranchised from the library, knowing that we don’t have a huge collection in-house for them to browse,” Ireland said. “However, the amount that (it) would benefit? Everyone.”

A 2019 national study by the Thorndike Press measuring the effect of large-print books on student reading skills found that 43% of students reported reduced anxiety about reading, nearly 60% reported focusing better with less distractions, and four out of five teachers said large-print benefited students with issues like eye tracking or who showed low self-confidence in reading. Ninety-five percent of teachers said they were more likely to use large-print text for the next school year.

“Studies show that kids that who are reluctant readers, have visual impairments or dyslexia do much better with large-print because it takes the fatigue away from their eyes,” said Lathrop. “When they’re straining to read and using all their focus to see the words, they’re not actually understanding the content.”

“We believe it’s the mission of our library to serve all members of our community - an important part of that is making sure every aspect of our libraries is accessible, including our collections,” said Ireland. “Gaps in our collection, whether intentional or unintentional, send an unfortunate message that the library is a place for ‘some,’ instead of ‘all.’”

So far, from going door to door with fliers about her mission, Madisyn has raised $1,275.

After bringing a large-print selection to her local library, Madisyn plans on fundraising for other area libraries. Currently, she’s writing a letter to Gov. Charlie Baker about her mission and why others like herself should have equal access to reading materials at their local public libraries.

Online: https://bit.ly/37yJUVF

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