'Enlightened child'
Special needs children: One parent's story

Anusha Lee, a special-needs child, is comforted by her mother Kathleen Hubbell at thier home in Fort Defiance, Ariz. Lee was upset when she was not given a chance to ride on a toy four-wheeler. [Photo by Daniel Zollinger/Independent]

Part one of a two-part series.

By Kathy Helms
Diné Bureau

Lee, a 9-year-old living in Fort Defiance, Ariz., has required special attention over the years and was born with a cleft lip and hydrocephalus. [Photo by Daniel Zollinger/Independent]

WINDOW ROCK — Kathleen Hubbell is the parent of a special needs child. It's not anything she asked for. It's not anything she was prepared for. It just happened.

After nine years of ups and downs, frustration, and having doors slammed in her face, she still has difficulty sharing her story without breaking into tears, though sometimes, they're tears of laughter.

"I was raised with a brother who had mental retardation. I didn't know anything was wrong with him," she said. "When I was like 3 years old, he'd be having a birthday and he'd be 16 again, every year. I'd be like, 'Oh, it's your birthday. How old are you, Willie?' and he'd be like, 'I'm 16.'

"Now, he's 46 years old. When we have his birthday and we're like, 'How old are you?' and he says, 'I'm 16,' I'm like, 'Well, where did you find the Fountain of Youth?' she said, laughing.

Prior experience
She became comfortable with having a brother with special needs. "He was just my big brother. Then he became my little brother somewhere along the way."

Then, nine years ago, her daughter Anusha was born.

Anusha means "enlightenment," and for Hubbell, raising a special needs child has been an enlightening experience one she will share Aug. 3-4 at a Din for Our Children summit at Navajo Nation Museum.

The first three or four years of Anusha's life seem like a blur, Hubbell said. "She was born with a cleft lip and palette and was later diagnosed with hydrocephalus (water on the brain)."

It put a strain on her marriage as well as the family's finances. "We just kind of had to learn to cope and preserve and just be prepared for the unexpected," she said.

"When Anusha was born, it was really a shock to look at her and see what I saw. And right away, everybody wanted to know, 'How do you feel? What do you have to say? We want to know what it's like for you as a parent.'

"So within the first 10 minutes, I just kind of had a quiet time where there were a lot of fears for what's going to happen the road up ahead." In that moment she found the courage to accept her child for who she is, Hubbell said.

"Right away, that story about the Ugly Ducking came to thought. Yes, it's hard to want to look away," she said, breaking into tears, "but she's going to grow up one day to become a beautiful swan. And it's so true, because she's 9 years old and she just has this beautiful gold hair, and it's like, 'Wow, you're so rich. How come you have this beautiful gold hair? Where did we find you?'

"She's just really beautiful a blessing. She's really strong, determined," Hubbell said.

Operations
During the first year, Anusha underwent four operations. "We had a lot of doctors, a lot of therapy. But they just don't hand it to you. You have to go look for it. It's not just, 'Here's all your therapy, here's your appointments.' It's not that easy."

She and her husband could have just thrown up their hands and quit, but they didn't. They had to take matters into their own hands. They went door to door, searching for programs that might help them.

"It was a process that took time to find. A lot of the times we got denied for everything. They would say it was not severe enough, or she was too little. It was really discouraging. We'd go home and it was just like another door closing on us."

Before Anusha underwent surgery, her mom went searching for parents of children who had been in similar situations.

"I went and looked for these kids that had surgeries and I saw how their surgery left a big scar, like a centipede on their face and these were mild cases," Hubbell said. Anusha had a severe cleft that went all the way up between her eyes.

"I was really scared. I didn't want her to go to those doctors, but they said, 'We can send you here or here. I said, 'No, I don't think so!'

"We went and found our own doctor in Albuquerque. He was really good. He just left a hairline scar. One of the other doctors saw her and he said, 'Did she have a cleft pallet?' because the scar tissue inside is so well done."

They had good insurance. "A lot of parents, they don't have a choice like that," she said.

"But, it strained our relationship. My husband and I almost got divorced. We got separated several times. We got denied for a lot of things because our income was too high, but my God, it's like, how high is too high?' she asked, when most of your finances still end up going for medical expenses."

Ongoing battle
Anusha's first day at Head Start, at the age of 2 years, 7 months, was another battle.
"The second day the bus came but the school called and said she couldn't come back to school because she was too small, she was too young. And I'm like, 'She's all ready with her backpack and everything. The bus is parked outside. What do I tell her that she got expelled on her second day of school?'"

Actually, Anusha wasn't too young, Hubbell said, and about a week later, she was back in school.

"As a parent, I don't know the things that she's been through and I don't know what it feels like to go under the knife. Sometimes I don't even know what to say to her," Hubbell said. "You try to understand the best you can, but ... " she trailed off into tears.

Despite Anusha's special needs, last year she was selected to participate in the school spelling bee, her mother said. "But with her speech impediment even though it's not critical enough to her, she kind of felt like 'I'm not ready for this,' because some people still don't understand her.

"But next year, she would like to do it. They can write it instead of saying it. They can make a way," Hubbell said. "She really has good phonics and she has good hearing."

Although the family has tended to think of Anusha as frail, "the way they said one of those Kennedy's wouldn't amount to much because he was so frail and so skinny and so sick she's proved us wrong."

"She's real strong. She can climb rocks, she can climb poles and ropes, and she can carry her own weight. One of these days she's going to be a drill sergeant! Even with her speech, when she wants to, she can be heard. She really raises her voice with authority," her mother said.

Good and bad
Though there have been a lot of bad moments for the family, there also have been a lot of good. "She's really taught me a lot taught me how to see things, not just one side, but to see there's goodness in everything," Hubbell said.

"She's really given us a lot of humor in our life. She just has a whole other way of thinking that's so cute."

For example, one day when Anusha was still in kindergarten, she came home and announced, "Mom, they're having a PTO meeting tonight. They're going to have fun and games, they're going to have all this stuff at the PTO meeting."

Hubbell wasn't enthused. "It's raining out. I don't think we'll go tonight," she said. Anusha was persistent. "But Mom, you have to go."

"I do?" Hubbell asked. "Yes," Anusha replied, "because it's going to be fun."

Hubbell told her, "Well, I know, but let's just stay home tonight." She wasn't really involved in school activities at that point in time, she said.

"After a moment of silence, Anusha came back up to me and she stood in front of me, and she said, 'Mom, am I your business?' I said, 'Yes, you are.'

"Well," Anusha went on, "this PTO is about me, and if I'm your business, you better make it your business too!" Since then, Hubbell has served as PTO president and attends meetings every chance she gets.

"When she says something, she doesn't say it lightly. She chooses her words really well, I guess," Hubbell said.