A candid mother’s life and worries about a child with autism
Most moms don’t worry too much about getting their 14-year-old son ready for school, because at that age, most are self-sufficient. It’s different for Angela Avila.
At 6:10 a.m., Angela flips on the lights of her son Nathan’s bedroom. There is a pungent smell of urine because he frequently wets the bed.
“Nathan, it’s time to wake up,” Angela says. Nathan doesn’t say anything.
Angela walks on to the bathroom, past a sign that reads, “Peace is found in the simple moments.” She must get Nathan’s bath ready because he cannot do it himself.
Nathan walks to the bathroom and sits in the tub for a few minutes by himself. Meanwhile, Angela tells her 11-year-old son, Enrico, to wake up and get ready for school.
When Angela gets back into the bathroom, Nathan immediately covers his ears because he knows his mom is going to turn on the water in the sink to get his toothbrush wet. The rush of running water is one of a number of sounds Nathan is sensitive to.
Angela brushes her son’s teeth, telling him to open wider. He looks uncomfortable.
Nathan squirms as Angela washes him with bar soap. He is sensitive to the feeling of soap. She dries him with a towel after his bath.
Nathan mostly dresses himself, but can’t put on his socks. Sometimes he tries to put on his 3-year-old sister’s socks because he doesn’t understand which socks are big enough for him, Angela said.
Nathan has autism.
“If you’re not already affected by somebody (with autism), you’re going to be,” Angela said. “One in 88 children are diagnosed with autism.”
This is Angela’s story. A mother’s story.
“We are prisoners in our own home,” Angela said through tears on a weekday afternoon, sitting in front of her computer in her living room. “But sometimes it’s better this way.”
It’s not easy for her and her husband and their children — Nathan, 14; Enrico, 11; Demecio, 5; and Sophia, 3 — to leave their home together, even for a short drive. She rarely takes Nathan into public situations at all, with school and doctor appointments being about the only exceptions.
The biggest reason they stay home is because she doesn’t feel like Nathan is accepted by society, she said. And there’s an incident that she will always remember.
When Nathan was 4, he had a meltdown at the Rimrock Wal-Mart. He didn’t recognize the store’s setup like he did the Wal-Mart on North Avenue.
While Nathan was on the floor, hitting his face and legs, a stranger walked up to Angela and told her that Nathan needed to be put to death like a dog.
“I went to the car and broke down and cried and told my husband, ‘I’m never taking him to the store again,’ ” Angela said. “Obviously, I have, but when you’re faced with that, you’re on edge because you don’t know what’s going to happen.
“We’ve just arranged our schedule so that (shopping) gets done when he’s at school,” Angela said. “If you need something when my husband’s not home, it won’t happen.”
On top of the comments people make, Angela said Nathan frequently gets stared at, even when all he does is clap. She thinks Nathan can feel the stares.
“I’m like a ball of tears when people stare,” Angela said. “You find the adults are more judgmental than the little kids are. That’s what really grinds my gears. It’s rude because these are human beings. They have feelings. So how are you going to stare at someone who is different? Oooh, it makes me so angry.”
It’s not only strangers Angela worries about.
Nathan has had close and good relationships with many of his teachers, but not all. A teacher bullied Nathan when he was a fifth-grader.
One day, after participating in water activities, Nathan received a Popsicle like everyone else.
Shortly after he received it, a teacher took it out of his hand and said the Popsicle was not for “kids like him.”
“I was not notified of this until another teacher said to me, ‘Why didn’t you ever do anything about that teacher?’ I was livid,” Angela said.
LONELY IN ROUTINE
Along with feelings of anger and frustration, there’s loneliness.
Angela feels she only has one true friend and her relatives aren’t welcoming. While Nathan can injure himself during a meltdown, he isn’t violent toward other people. But Angela and her husband and their children are excluded from family events because her relatives don’t want Nathan there, she said. She often feels like no one is there for her.
“They can at least say, ‘Do you want to come?’ ” Angela said, “Even if we’re going to say no, they could still at least give us the invite, so I could politely decline. Nathan’s birthday was (February) the 8th, but we didn’t even have a party or anything. Because who’s going to come for Nathan?”
With each birthday and school year, Angela becomes more nervous about what will happen to Nathan once he completes school.
“As far as I know, there’s not anything for Nathan once he finishes school,” Angela said sadly.
Weekdays are better for Nathan because there is structure at school. As a seventh-grader at Redlands Middle School, Nathan finds comfort in routine.
Breaks from school are usually a source of joy for children. Not for Nathan. When there isn’t school, he will sometimes pace the floor.
But the thought that scares Angela most is what could happen if she and her husband were to die before Nathan. Just in case, she has detailed information in a lock box explaining what Nathan likes and dislikes because it is difficult for him to communicate those things.
Angela asked relatives if they would care for Nathan if the worst were to happen. No one wanted to, she said.
Angela does not want to put him in a group home. She wants him to live with her his whole life.
WALKING ON EGGSHELLS
When Nathan was about 18 months old, Angela took him to see a pediatrician because Nathan made sounds instead of talking. The pediatrician said Nathan was fine.
Angela, who was living in Pittsburgh at that time, was still concerned about Nathan’s behavior but took the physician’s word for it until a nurse told her she suspected Nathan had autism.
Nathan was about 3 years old when he was diagnosed with autism by a psychiatrist in Pittsburgh. He was then very low-functioning on the autism spectrum.
He since has improved, Angela said.
Now “he can communicate his basic needs and wants to me, like he wants a drink or if he wants to get a (soda) pop,” Angela said, “But if he’s sick, I don’t know. He can’t say ‘my head hurts’ or ‘my throat hurts,’ or anything like that.”
Over the years, Nathan has received Applied Behavior Analysis therapy, which promotes positive behaviors and the learning of basic and complex skills, such listening, imitating, reading or having a conversation, according to autismspeaks.org.
“He can add,” Angela said, explaining the benefits of the therapy. “He knows his colors. We tried to set him up some type of system at home, but Nathan very much wants his home life separated from his school life. So anytime we would try and bring anything into the house, he would regress and not even want to do it.”
Just as a change in his schedule or the pattern of his day can upset Nathan, so can some smells, sounds or even certain textures of food. Those sensitivities can sometimes cause meltdowns. Angela feels like she is walking on eggshells, wondering when the next meltdown will happen.
“Sometimes they happen if he has to wait for something,” Angela said. “Or if he’s not being able to communicate with me. If I’m just not understanding. There are times I can tell he’s having an off day by his mood or certain sounds that he’s making. But then, like the other day, I thought he was totally going to go into meltdown mode, and he was fine.”
Angela has learned to let him “cycle through the meltdowns” because there’s not much she can do to help him feel better.
“If he is in a really, really bad place, he’ll come into my room and lay in my closet because it’s dark, there’s nobody in there,” Angela said. “It (the meltdown) can go 45 minutes to an hour.”
However, his meltdowns aren’t anything like they used to be, Angela said. For five years Nathan has taken Risperdal, an anti-psychotic medication used to “treat irritability and behavior problems associated with autism,” according to pediatrics.about.com.
It’s the only medication Nathan will take because it is a melt tab. He doesn’t swallow pills.
“Before he went on it, his entire face was just black and blue,” Angela said. “He would bang his head onto the floor. He had to wear a helmet because he would hurt himself so bad. And the school was calling three to four times a week to come pick him up because he was screaming.”
‘WHAT’S GOING ON INSIDE?’
Along with medication, routines help Nathan, and Angela knows his routines by heart. He does the same thing every afternoon after he steps off the school bus. He eats Top Ramen noodles for dinner every single evening, and he must eat it off a plate from the family’s set of dishware with an apple design.
“If we ever break the apple plates, I don’t know what we’ll do,” Angela said. “I don’t think they sell that pattern anymore. He won’t eat off of anything else.”
She wishes she could communicate with Nathan about the apple plates and the Top Ramen. She hopes that one day Nathan can communicate by typing on his iPad.
“I would like to tap into his brain and just see what he sees and what he feels,” Angela said. “What’s going on inside?”
She labeled things around the house — the TV, the light switch — to assist his learning. So far, he can type in “The Wiggles,” a TV show he enjoys, into his iPad.
Nathan also communicates certain wants and needs through his iPad using an app called Proloquo2Go. This app has customizable icons, such as “I want…”. Once that is touched, another screen will appear. Then Nathan can touch the “Burger King” icon, for example. The following screen shows the food available at Burger King, and he can click on the item he wants. It removes a lot of guesswork for Angela.
AFFECTION AND LOVE
Even though Nathan can’t communicate his affections through speaking, he shows them through his actions. He frequently holds his mom’s hand and nuzzles against her.
“When I’m sick and I’m lying in bed, he’ll just come to the bed and lie with me,” Angela said. “He’ll pet my head. It’s like he knows that mom’s not doing good.”
Nathan loves his mom and Angela loves him, but autism impacts every aspect of Angela’s life, from her “free time,” a couple hours in the morning between seeing Nathan and Enrico off to school and before the younger children wake up, to her marriage — she and her husband, who did not want to be named in this story, are getting a divorce.
But Angela does not want people to pity her.
“I love my life,” Angela said. “I don’t want anybody to feel sorry for me or think it’s so hard because honestly, it is like the best thing that’s ever happened to me. It’s completely changed me. I was so selfish. I was mean. I made fun of people, I did as a teenager.”
And she’s tired of stereotypes.
“If you’ve met one (child with autism), you’ve met one,” Angela said. “No two are the same. I just think there needs to be more positive portrayals. Even though there are negatives, I just want people to know what our kids are like.”