Every child's a star

MOSES LAKE — Three moms of special needs children met at a community forum in March to find ways to help their children and support each other.

The meeting was a chance for lawmakers and school administers to hear ideas and concerns from parents, but it became an inspiration for Tammy Bousson, Mica Scholte and Heidi Stentz.

“The idea to form a parent-advisory committee came from that forum and anyone could put their name in to help start it, and that was us,” Bousson said. “We got together and tried to figure out what we wanted it to look like and how it would work.”

The women formed Loving Hands to promote the welfare of disabled children. Their goals include having a special education parent advisory committee, operating a booster club, organizing activities to involve the children in the community and promoting awareness.

The parents invite anyone interested to come to their second meeting held 7:30 p.m. Monday at The Learning Center, located at 421 S. Balsam St. in Moses Lake. The women and four other board members are discussing their children’s needs, concerns and ideas from parents.

“The idea is to fill any gaps there are with needs that aren’t being met, step in and help out,” Bousson said. “We realized this was something the school board couldn’t do so we thought we would be a sounding board for parents.”

Bousson’s 6-year-old daughter Leah Bousson has Rett Syndrome, a disorder of the nervous system that leads to developmental reversals. Leah can’t talk, use her hands, stand-up, crawl or walk.

“I had a plan, such a plan for my life and what was going to happen,” Tammy said. “When Leah was born, she just knocked down my world. You’d expect me to be unhappy, but I am not.”

Having a special needs child changed Tammy’s perspective on life.

“I see kids like her and I would have normally never paid attention to them,” she said. “Now I notice them and love every part of them.”

Scholte’s 15-year-old daughter Heather Liggett’s disorder doesn’t have a name.

“It’s a very rare chromosomal deletion that happens at conception,” she explained. “Heather is tiny, has low muscle tone, feeding issues, vision problems, hearing problems and unusual features.”

Liggett didn’t walk for a long time and initially had to use braces on her feet for support. She is currently enrolled at Frontier Middle School, although she is old enough to attend high school.

“Having her has really opened my eyes and heart to the greater population of disabled people,” Scholte said. “It taught me not to judge a book by its cover, there is a story within every individual that is worth discovering.”

Scholte decided not to tell her daughter she is disabled.

“She is smart enough to know the difference and we don’t want to have to put a label on her,” Scholte said.

Stentz wanted to label daughter Harli Stentz, 7, so her other children would understand why she was treated differently than them.

“We wanted them to know we are treating her differently for a specific reason, but we love each of them the same,” Heidi said.

Harli has Kabuki Syndrome, a genetic mutation causing feeding issues, low muscle tone, developmental delays and autism-type behaviors. She has arched eyebrows and large eyes.

“Harli has brought a unique element to our family dynamics,” Heidi said. “She has stuff going on, the tricky part is figuring out what she is capable of. She brings a sense of humor in ways people wouldn’t normally think are funny.”

Heidi recalled a time when the family was at church. She was walking by the Sunday school room and saw a pair of sandals fly across the room. Harli was mad because she hadn’t received the piece of chocolate promised to her by the leader.

“I just started laughing because she is such a tiny person with so much attitude,” Heidi said.

The moms said they all have unique senses of humor when it comes to their daughters.

“We get excited when they have normal moments,” Tammy said. “I’ll never forget the day Leah laughed because her brother was getting in trouble. He yelled at her to stop laughing and the whole family broke out in hysterics.”

The women want the public to embrace their daughters in the same way.

“People tend to avoid (disabled individuals) because they don’t understand and don’t know how to ask questions,” Heidi said. “But everyone understands eye contact and a smile.”

The parents don’t mind the questions.

“It’s the open mouth stare that gets me; no one wants to be judged,” Scholte said. “They really aren’t any different than other kids. They want people to look at them in the eye, engage with them and connect with them.”

The women want to be a resource for parents and school board members.

“We want to create a more cooperative system to save the district trouble,” Heidi said. “Instead of having tons of different parents approaching the district with concerns, there can be one group coming forward with information from all parents. This way we are more effective and not just noise.”

The moms said laws placed on schools for children with special needs, such as Individualized Education Program, are sometimes ineffective because each disabled child is different.

“It is hard because even if there are two children with the same disability, they have different needs,” Scholte said. “I really believe most teachers want to do what is right for each child, they may just be getting too many different views.”

They hope they can inform the district  so each special needs chid is getting the right education and treatment in the classroom.

Loving Hands members hope to turn the group into a non-profit organization so they can receive funding to help pay for equipment, specialized toys and field trips for the kids.

“I think the school board is in-between a rock and a hard place because insurance won’t pay for things they say are not medically necessary,” Tammy said. “Yet some of the children with disabilities require certain items to be safe.”

Tammy said school bus drivers are required to strap in children in a wheelchair while they are riding the bus.

“Yet every kid’s wheelchair is different, so the strap doesn’t work for many of them,” Tammy said. “This isn’t safe for the child or the other children riding the bus.”

There are about 950 children in Moses Lake schools receiving special education services. State cuts in healthcare and education mean the children are not getting the services they rely on, according to the parents.

“We want to gather up used equipment that is still in good condition and give it to the kids that need it,” Scholte said. “Kids grow so fast. They outgrow their expensive equipment and have to wait for their parents to be able to afford new equipment, being uncomfortable while they wait.”

The group welcomes any equipment such as highchairs, developmental toys, bikes, tricycles, jogging strollers and books. They need volunteers to offer time and expertise in sewing, wood working, grant writing, metal working, fund-raising and legal advising.

“We’ll be happy if we can get just one kid taken care of, providing them with a need never met before,” Tammy said.

For more information, call Mica Scholte at 509-762-2987.