A classroom for Elise
Wicked Local Millis, February 7, 2008
By Heather McCarron
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MILLIS - When 3 1/2-year-old Elise Spies reaches for a sparkling, purple fairy princess wand, there is excitement.
"You're showing off!" Browning exclaims, beaming at the toddler on a recent morning at the Spies' Millis home.
The child's mother smiles. "Just not too long ago, she would not even reach for things," she explains. "She would sit and look at something a long time, but she didn't have the motor planning to reach out to get it."
So reaching for the wand is a notable accomplishment — one of many Spies and the educators who assist her expect Elise to achieve as she continues to learn.
And helping Elise to learn is exactly the goal behind an ongoing project to turn the basement of Diane and Ed Spies' home into a classroom for their daughter, a special needs student with a chromosomal disorder called Partial Trisomy 18 whose multiple food and environmental allergies necessitate her home-based education program.
Random Smile Project, a Franklin-based, non-profit organization that, among its many projects, offers assistance to families with unusual or difficult circumstances, has been helping with organizing the project. Already, a brand new cork floor has been placed in Elise's new classroom, with the material purchased at a discount from Lowe's in Milford and with help from a $1,000 donation by the Millis Lions Club. Installation was completed free of charge by Franklin Tile.
Other work has included painting the walls and installing moldings around the windows. The next step is to find someone to put in a drop ceiling.
"Once we realized Elise would be (getting her education) at home because of her immune issues, that's when we decided to use the basement as her school area," said Spies.
The mother of two — Spies and her husband also have a 5-year-old son, Parker — is enthusiastic about giving her daughter a proper learning space where she can focus on lessons provided by the various specialists who visit during the week.
"I'm so excited about it (the classroom) and also just to have a space where she can go down, and this is school time," said Spies.
The project all began when Spies discussed her desire to fix up the basement with Browning, a special needs teacher from the Clyde Brown School who works with Elise three hours every week. She contacted different organizations including the Millis Lions Club and Random Smile Project to see what they thought.
"Sarah wrote a letter and I brought it before the executive board of our club," said Al Baima, president of the Millis Lions Club, who dropped by recently to see the progress. "They voted to donate money for the floor. We have helped with many projects like this."
With Elise comfortably ensconced in his lap, Baima said the classroom so far looks "very nice" — a perfect place for "adorable" Elise to learn. And the project fits in well with the primary work Lions do, which is to help the blind. Without her little glasses, Elise is legally blind.
Fellow Lion Dorman Picklesimer, who joined Baima on the visit, agreed the project is a good one.
"This may be the best thing we've done all year," he proclaimed. "I feel very rewarded for having a chance to do this. This is why the Lions Clubs were started, to help in the community."
Webson, Elise's vision specialist from the Perkins School for the Blind who comes once a week, is excited about the classroom project herself. It'll help her to get Elise to focus more on her lessons, she said.
"I'm looking forward to having it set up, because here (upstairs) you have the windows. Downstairs there's less distraction, so I can focus on the visual stuff," Webson said, explaining she uses shiny objects and lights to train Elise's brain and eyes to track movement of objects and to reach for them.
Browning, Webson and other specialists, including a speech pathologist and an occupational therapist, have been working with Elise in the Spies' home since late last summer. Their goal is not only to help Elise learn how to track and reach for objects, but also to crawl.
Because of her chromosomal disorder, which was diagnosed shortly after Elise was born in 2004, the youngster struggles with several disabilities, including moving around by herself.
Besides her physical and cognitive delays, Spies said her daughter has gastrointestinal issues, and vision and hearing difficulties. She also has obstructive sleep apnea, and so must be monitored by either her parents or a nurse when she sleeps, in addition to wearing a CPAP machine (Continuous Positive Airway Pressure) that blows air into her nose and forces her throat to open for her to breathe. Sleep also involves being hooked up to a pulse oxymeter to monitor her heart rate and oxygen levels.
The delays are all typical manifestations of Trisomy 18, which means Elise has additional chromosomal material on her 18th chromosomes — this is unlike a full Trisomy 18, where there is a whole third 18th chromosome present.
Elise's case is unusual, Spies said.
"We were told there are only six reported cases of partial Trisomy 18. Most likely it will mimic a full Trisomy 18," said Spies.
While the doctors don't know a lot about how the partial Trisomy 18 will continue to affect Elise, the youngster has already beaten the odds.
"With a full Trisomy 18, 90 percent of the children don't live through the first year," Spies said.
Heart problems are the number 1 cause of death for children with full Trisomy 18, followed by apnea, Spies said. Elise's heart is healthy, and her apnea is managed. Spies said she has found sticking to a strict and super healthy diet has helped her daughter.
Since Elise's more formal schooling began last year, her mother and teachers have been encouraged by her progress.
"She's just a joy to work with and to see all the gains she's made in the last year is very rewarding," Browning enthused.
Spies agrees.
"It's fun just to see Elise make these strides and to know that we've made a difference in how she will live the rest of her life," she said. "The goal now is to get her mobile and to increase her communication. And, of course, to keep her healthy."
Heather McCarron can be reached at hmccarro@cnc.com or 508-634-7584.