Excluded Since Birth: A New Group Rises

Inclusion Ambassadors: Autism Hits Home

By Ethan W. Haslett

WOODSTOCK- People often shy away from the microphone as soon as the words question or interview are uttered but, at the bean and salad supper in support of Autism and in memory of Glenn Bruce. People were open to being asked questions. Five people even asked to be interviewed and from there they tracked down other people with different stories. A connection existed between them.

Everyone there was affected by the life change that accompanies a family member or friend being diagnosed with autism. For someone like myself it can be awkward to talk about issues like this. Not knowing these people and diving deep into a subject that seems personal can be hard. As the doors opened though and people swarmed in, their thoughts and experiences came flooding out, happy that someone was there to listen.

The mental condition was officially recognized in 1994; before that it was hiding in the shadows and was blamed on a magnitude of other mental health problems. It has affected thousands and will continue to affect thousands more. It’s an issue that won’t simply go away. 

For some, like Francine St. Amand, the developmental disorder threw her entire family in a state of disbelief. 

“Our son’s autism was a shock, it was just when they announced it in 94 and not much was known about it.” 

Even after going through a divorce, St. Amand and her son, Luke Sinstadt, are together and happy. Some might think it has hampered their social abilities, and they would be right in a sense. 

In the everyday world where the majority shun what they don’t understand, it happens. Autism is not something everyone knows about. Few are well educated about it. That is until someone they know is diagnosed with it. 

That’s why St. Amand started Inclusion Ambassadors, a local group promoting inclusion.  

“It initially started out as just as a means of having three individuals come together… a place where they could start friendships.”

The parents of the three original members decided to do what they could to make sure the three got together at least once a month. Troubled with thoughts that their children were losing out on the experience of making new friends that they could communicate with, brought about a great deal of understanding and co-operation from the adults as well as the three members. 

Aaron Bouma was one of the original three. For him the group isn’t just for fun. He sees it as a work in progress where they strive for success in spreading inclusion opportunities for all.  

“It’s a task force we’ve been working on since 2007,” said Bouma. “We work on inclusion of people with autism and people with mental disabilities. We’re here to promote inclusion and to support what’s been going on.”

Bouma, a strong conservative supporter, has different viewpoints on most things. As he talks, he relates every paragraph in some way to the military, for him life revolves around the structure of the organization. His eyes speak more than his words as his excitement grows when speaking out about the disorder. 

 

Since 2007 the group has doubled in size and now has six members, ranging from teenagers to those in their mid to late 20’s. 

As the group sits down to enjoy their meal, they tell jokes, laugh, and even gossip a little. Like any other group of young adults, they banter, knowing these friends understand what it means to be excluded. 

As a joke is told and they start to laugh in the back ground, I crouch down beside St. Amand to ask her what her take is on the group. For her and the other parents, the group means more than just a place for their children to see other people. For them it lets them relax knowing that their kids are happy, included, and free to be themselves. 

The group helps parents too, said St. Amand. “It gives the parents a break. It lets them go out and have a night to themselves just like other parents when the kids stay the night at a friend’s.”

She breathes a sigh of relief at the end of the sentence. Talking about how much the group does, not only for her son but also for herself and the other parents seems to calm her.

In part, the group started because some parents believed that not enough support was given to families after their child turned five. The Upper Valley Autism Resource Center though is there though to help people in this region. Sue Legacy is an autism support worker and volunteers with UVARC. 

She deals with children on a regular basis who have difficulty socializing.

 “We teach applied behaviour analysis which is a system of teaching children with autism how to socialize, and teach them skills to function in society.” 

Support workers like Legacy don’t just work with the kids. “Well to be honest with you, when you work with a child with autism, you are working with the whole family.”

That’s something that a family with a diagnosed member has to go through. The experience, according to both St. Amand and Legacy, is something that most will never understand. They both agree the challenges they face can bring them together or tear them apart.  

Ron Turner, like any father, loves his family and tries hard to always be there for them. The difference is his son requires more time than any working dad can give.  

He’s the father of two and for him life’s changed quite a bit from what he had planned. As a stay at home dad, he spends his days watching his son grow and slowly developing the needed social skills required in today’s world. Having his son diagnosed meant life changes.

Both Turner and his wife wanted three children but because their son takes up the majority of their time, they decided instead to focus on the two they had. Even having two, at times, has put strain on the entire family. Turner believes that his older daughter felt the strain at times, more than others.

“She was very jealous of him, and he was very jealous of her. And it wasn’t until later on that I really realized this.”

When she was about six years old, Turner finally realised just what a huge impact having a brother with autism had on the older daughter. 

“She pretended she was seizure’ering on the steps,” he said. “After that we tried to give her as much attention as we could, but because of his behavioural problems she was forced to grow up a lot on her own.”

That’s a problem that any family with multiple siblings has to worry about, especially those affected by a disability in the family. Turner remembers times when his son would get upset just because his sister walked in the room.

Worrisome thoughts can plague any family, but for families like the Turners it takes on a whole new meaning. Turner and his wife have different things to worry about; they have to be concerned about everyday tasks that most families wouldn’t even think twice about. 

“I worry day to day. My wife worried way back when he was born about when he hit school. I said “I’m not worried about that, I’m worried about today.””

Families that have autistic children are generally open, said Turner. For them the most important thing is something that the inclusion group helps to alleviate, at least once a month. 

These parents worry intensely about their kids fitting in, even as they get older. Like a mother hen pecking at the farmer trying to take her eggs, these parents want to be there to protect their kids. They have to constantly watch out for them and at times have trouble letting go.

Most parents can allow their children to gradually grow independent, but most parents of children with autism often can’t do this. At least not completely. 

Safety in doing everyday tasks can come into question. At times tasks such as, cooking, cleaning, or working often require 24/7 supervision from someone else. This is often required even after they’ve reached adulthood.

Their concerns are also related to ignorance about developmental disorders. These parents worry that because people don’t understand what their child is going through, that they will be excluded and won’t be able to reach their full potential. 

They hope people will eventually want to learn about it, that eventually everyone will have a place to call home with friends and family that understand, no matter how different someone is. Because like every other kid, they just want to be included.