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Being Henrys mom

Living in a world of change where consistency is key can be isolating for the parents of autistic children. One Forest Grove mother wants to change that by starting a parent group. For her, life is all about the challenges and joys of being Henry's mom
by: Chase Allgood, Toddler Henry Kottke, who is autistic, peers from behind a curtain at West Union Elememtary School.

Henry Kottke, 2½, looks up at his mother with adoring eyes and smiles.

He leans in to give Kristy Kottke a kiss, grabbing her with two chubby arms and pressing his body to her chest. But then something happens.

The toddler's expression changes suddenly and he bites Kristy on the cheek, causing her to wince with pain.

'Ow!,' she cries. 'Henry - why did you do that?,' she calls after her son, who's already off in another direction.

It's a new thing for Henry to bite, another behavioral nuance in a procession of changes that have defined the life Kottke, 36, shares with her husband, Kevin, and their only child, Henry, who is autistic.

It's been a long road for the Forest Grove couple since Henry was born in 2004. He was a challenging baby, keeping Kristy up many nights trying to soothe him as he screamed.

'There was a lot of crying,' recalled Kristy, a former Hillsboro School District teacher. Her husband still teaches at Evergreen Middle School. 'Everyone said he was colicky.'

Sleep deprived and worried, the Kottkes turned to their pediatrician for help.

'Henry wasn't doing some of the typical things,' Kristy said. He would isolate himself at family gatherings and by 18 months, he still wasn't saying 'Mom' or 'Dad.'

Besides that, he would get upset whenever his parents would take him inside an unfamiliar building - whether it was a grocery store or the library.

'He had some extreme anxiety about being inside,' she noted.

Kristy was torn between chalking up Henry's slow speech and eccentricities to 'just who he is' and trying to figure out what was wrong. But somewhere inside, she knew everything wasn't OK.

An obsession

A Kaiser physician put Henry through a battery of tests and determined he had autism spectrum disorder. For Kristy, the news carried a double edge: along with the relief of having a diagnosis came an obsession with trying to manage it.

'I read every book on autism and got online for more information,' she said. 'It was too much - overwhelming. It was overkill.'

Her mother, who lives in Seattle, begged Kristy to calm down and pull back.

'She said to stop and just enjoy Henry,' Kristy said. The advice was helpful because it allowed her to rest.

The doctors want to see Henry again when he's 3. Until then, Kristy and Kevin will do their best to engage their son in everyday activities and work on communication and social skills.

They won't resort to extreme measures, such as vitamin B-12 shots or sessions in a hyperbaric oxygen chamber.

'That's just not us,' Kristy said.

School days

A brochure about an early intervention program for children who are developmentally delayed led Kristy to West Union Elementary School in Hillsboro, where she takes Henry two mornings a week.

His cooperative 'school' consists of a brightly colored classroom at the end of a long hallway. Elsa Young, an early childhood specialist with the Northwest Regional Education Service District in Portland, is the teacher.

Four boys, all between the ages of 1½ and 3, alternately scurry between activity tables and look around for their mothers. When the mood strikes, they indulge in sponge painting or scoop up dried split peas from a plastic trough.

Henry hides behind a blue and white curtain while his mom talks to a friend.

At circle time, Young gathers the youngsters and their parents in a corner of the room and sings a greeting song, using sign language and pointing to photos of each child in turn. One boy cries. Another has trouble sitting still.

Inviting the kids to come closer, Young reads a story about going to the zoo. Henry lounges contentedly in his mother's lap until the story is over and Young brings out some musical instruments.

He's the first one to shove his tiny fist into the bucket. He pulls out a modified tambourine with shiny bells attached and shakes it like crazy.

The children practice making music and then staying silent for a few seconds. Henry twirls around in a circle with a wide grin on his face.

Next come the soap bubbles. Henry seems interested, tracing circles in the air as he tries to pop the glistening orbs. But he soon tires of the activity, stopping to gaze up into the air at a red-and-blue windsock hanging from the ceiling.

Kristy gathers up her son and holds him high so he can touch the nylon material.

'That's pretty, isn't it?,' she coos to Henry, nuzzling him close.

Going to West Union has been cathartic for Kristy - and for Henry.

'This program has been wonderful because it meets each child where they are,' Kristy said. 'The goal is to prepare kids to be able to go into the school system and be successful.'

The 'Henry way'

For Henry, every day is a new adventure filled with discovery when he's feeling safe and anxiety when he's not.

'We do things that all other kids do, just differently,' explained Kristy. They ride the MAX line and visit the Children's Museum in Portland.

They go to the park, the toy store and run errands.

At the zoo, Henry shows little interest in the animal exhibits, but 'he loves the train and the pathways and pushing the handicap button a million times to open the door,' she said.

In their culdesac on Harvest Court in Forest Grove, Henry might play for a full hour arranging balls as they roll down the gutter.

'We do things the Henry way,' Kristy said.

He's prone to the same inconsistencies as any 2-year-old, exhibiting momentary bursts of glee interspersed with occasional tantrums.

For Kevin and Kristy, it's important to 'let Henry be Henry and enjoy his world with him,' Kristy said.

'I wouldn't change him,' she added. 'We get some interesting looks because Henry plays differently sometimes in public places, but I think people are increasing their awareness about kids with autism.'

Family support

Kevin has been Kristy's 'saving grace,' she said, dropping everything after he comes home from work so he can care for his wife and tend to Henry.

'He's all about Henry as soon as he hits the door,' Kristy said. 'Even when he's tired, he's just amazing.'

For a personal break, Kristy works as a barista a couple nights a week at the Cornelius Starbucks store.

'I decided I needed to get out of the house sometimes,' she said.

Kristy's grateful for her support system, which includes her father, Robert Seward, who recently moved to Forest Grove from the Midwest and comes over to play with Henry almost every day.

It took about a year, but Henry is beginning to interact with his grandfather in meaningful ways.

Just like with school, 'it's taken time and patience and working with Henry at his own pace' to get him this far, his mother said.

She can't predict Henry's future - how his autism will impact his life - and sometimes it's hard not to worry. But Kristy and Kevin are trying to take one day at a time.

'Life goes on, and everybody deals with something,' she said. 'Henry doesn't know he's autistic. He's a happy guy.'