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Leah Meyer has almost forgotten what a vacation is like or an evening out with her husband.
Something as simple as going to the swimming pool is almost unheard of.
Meyer doesn’t complain about her lack of a social life. She’s had seven years to adjust to the fact that her darling, beautiful daughter, Maggie, has autism. Every day is a new learning experience that presents itself from the challenges the entire Meyers’ family faces together.
“It was my birth mother who first recognized something was wrong with Mags,” Meyer said from her living room that bears testimony that children live in the house. Tubs of Legos, sorted by color and shape, line the wall.
A little after she was two years old, Maggie would not make eye contact, she wasn’t talking like most children her age and everything she did was organized and symmetrical.
After a visit to a developmental pediatrician confirmed the autism diagnosis, Meyer had her first bouts of both fear and confusion.
“What did I do wrong?’ She said she asked herself. “What caused it? Can I do the right things to care for her?”
The answers were nothing, we don’t know and of course, she can.
“The first thing I acknowledged,” Meyer said, “is she is the same child we had before we ever heard that word. She is the person she is meant to be.”
And dealing with that person day in and day out requires a lot of patience, Meyer said. “With Maggie, I learn more about patience every day.
“She’s very sensory oriented and I’ve had to learn when and what she needs and to anticipate those needs.”
Light, noise, touch–all the things that average people experience without harm can cause great concern for the 9-year-old. And when things get overwhelming, her mother knows the exact pressure points to squeeze or massage to alleviate her fears and frustrations.
“I’m just trying to learn and understand,” said the mother of four, that also includes another daughter, 19, and two sons, 14 and 4.
In the beginning, it was her daughter, Betty Jean, who became an extension of her mother as Maggie’s caregiver. “She was my right hand and was always there when I really had my hands full.”
While Meyer has learned to cope with a child with special needs, she is also fully aware that for most people who are not accustomed to it, it can be awkward at best.
There are two camps of families of autistic children, she said. There are those who proclaim, “You will accept us no matter what.” And then there are those like herself, who respect their surroundings and people around them.
Just recently, dining out in a fast food restaurant became a milestone and always, she said, the family sits where they can make a fast getaway should Maggie not take to her environment.
“We try to pre-plan as much as possible,” she said. “If we go to someone’s house, we let them know we may have to pick up and leave without much warning. We tell them what they can expect and how to react. We don’t want to make people uncomfortable,” she added.
For the most part though, the family stays put in its comfortable home and entertainment is often movies from Netflix.
Maggie, a third grader at Williston Elementary, is in school until about 11:30 every morning. That gives Meyers a few hours to herself five days a week. After the morning chores, she said she spends time online researching more about autism, sipping coffee or talking with people through social media.
Every time the phone rings, she jumps immediately to answer just in case it’s the school telling her that Maggie needs to come home.
“They know I can be there in six minutes,” she said.
Maggie is verbal, her mother said, but it’s limited. Most of her interaction with others is both scripted and rehearsed–like simple greetings.
She likes to be swaddled and if she’s had a bad day thinks nothing of piling every blanket in the house on top of her.
There is no set schedule for eating in the Meyers’ home. Everyone grabs what he can when he can. Maggie eats little, her mother said, and has to be reminded to do so.
Maggie’s sleep patterns are also irregular. She is only able to sleep after taking prescribed medication and even then, it takes about an hour for her to wind down.
Those with autism are often extremely intelligent but anti-social. “All the neurological wiring is there,” Meyer said. “It’s just hooked up differently.”
And if there were a pill discovered tomorrow that would put the pieces of the puzzle back together in Maggie’s brain, Meyer said she would refuse it.
“I’d lose her,” she said. “I would no longer have the daughter I’ve had for the past nine years. I’m not willing to take that risk.”
Autism is not curable, she said, but there are methods and approaches that get people to a level of endurance.
“I just want to get the most out of my child. I want to work and push her to her fullest potential,” Meyer said.