By Donna Cornelius
There’s a kind of hush all over Sara McDonald’s world. And she’s determined to break it.
Her 11-year-old son, Jay, has Asperger’s syndrome, a disorder that’s on the higher-functioning end of the autism spectrum. The Crestline mom said it’s important for parents like her to tell it like it is – to be honest about living every minute of every day with a condition that affects the entire family.
“I feel like if people talk about it, they only talk about the good stuff,” McDonald said.
She’s willing to talk about painful experiences.
“Jay started to regress and became quieter and quieter in the second and third grades,” McDonald said. “There was one time when he was in the fourth grade. I went to the lunchroom. The boys in his class were sitting on one side, the girls on the other – and he’s in the middle by himself, his head in his hands.”
Another time, she said, she picked Jay up from a friend’s house and found a situation that would break any mother’s heart.
“The other boys were circling him, throwing things at him and saying, ‘What’s wrong with him? He’s so weird,’” McDonald said.
Jay was diagnosed with Asperger’s when he was a second-grader, she said.
Those with Asperger’s often have difficulty interacting socially – even within the safety of their own homes.
“I threw a pool party here at our house for his third-grade class and another class,” McDonald said. “We ended up having about 75 kids. They were all swimming and having fun, and my child shut himself in his room.”
One person who can empathize with McDonald is her friend Celina Miller, whose 14-year-old son, Jim, also has Asperger’s. The two mothers met when Miller and her family lived in Mountain Brook. They’ve remained friends even though the Millers now live in Brewton.
“Children who have Asperger’s are very high-functioning,” Miller said. “They’re typically very bright children with learning difficulties.”
Other conditions, like dyscalculia, which is difficulty in learning or comprehending math, or dysgraphia, which affects writing abilities, can accompany Asperger’s, she said.
Miller sent her son to Middlebridge School, a private school in Rhode Island for students with learning disabilities.
“Jim was sad to leave, but he wants to go to college,” Miller said. “Even as a 14-year-old, he has goals and wants to achieve them. The growth I’ve seen in him is remarkable. I’m so very proud of him.”
McDonald and her husband, John, tried a private tutoring center and other options when it became clear that public school wasn’t working for Jay.
“I prayed hard about taking him out of school, but he was so depressed and angry,” she said.
Last fall, Jay began his fifth-grade year at Spring Valley School in Mountain Brook. It’s an independent school for bright students with learning differences, according to its website.
“This school – it’s not about a label,” McDonald said. “It’s a safe place to learn.”
Attending Spring Valley has been a good experience for Jay, she said.
“It’s the coolest thing to sit in the carpool line and see how all these children who ‘don’t fit’ do fit there,” McDonald said. “They’ve all been beaten down so badly, but there, there’s no judgment, no fighting.
“I try to go on all the field trips. One day, one of the girls got in the front seat and said, ‘I’ve got dysgraphia.’ One of the guys said, ‘I’ve got dyscalculia.’ Jay said, “I’ve got Asperger’s.’ It was so refreshing to hear them talk so openly.”
Sara and John McDonald have become active advocates for Spring Valley. They are co-chairing the school’s building committee, and John is a member of the school’s board of directors.
LeAnn McMillan, Sara McDonald’s sister, once taught at a school for dyslexic children and thinks Spring Valley has a crucial mission.
“It’s important to get these kids on the right track,” McMillan said. “I’m grateful for Spring Valley, where kids aren’t bullied or different.”
McMillan said she realized how happy her nephew was at the school after a recent conversation with him.
“Jay said he only had four more weeks of school and was going to be a little sad when it ended,” she said. “He said, ‘I love it.’”
Disorders Affect the Whole Family
The McDonalds also have a daughter, 9-year-old Sterling.
Children who have siblings on the autism spectrum are “the greatest kids,” McDonald said. “I’ve got to take care of her, too.”
She and John have separate “date nights” with Jay and Sterling so they can spend one-on-one time with each child, she said.
Miller agreed that autism affects not only the child who has it but a wider circle.
“It’s a total global impact on the whole family,” she said. “The parents, siblings – it affects every moment of their lives.
“Helping educate these children impacts their families and their futures. Sara is working so hard not only to help her son but to help other children, too.”
McDonald said her faith has deepened through her family’s experience.
“I’m closer to God now,” she said.
It also doesn’t hurt to keep a sense of humor even during trying times, McDonald said.
“Jay said one time, ‘Mom, I just want to be normal,’” she said. “I told him, ‘I don’t want you to be normal. Normal is boring.’”
Opening up about her family’s situation wasn’t easy for McDonald. But she said she hopes doing so will help others in similar circumstances.
“Talking about this was a family decision,” she said. “Jay is on board with this. I asked him if this was something he wanted to share. He said, ‘Yes, if it will help somebody else.’ He’s proud of himself, and I’m proud of him, too.
“You just want your child to be happy. That’s your heartbeat out there.”