In the area of North Battleford, Lloydminster and Meadow Lake, the Prairie North Health Region's Autism Spectrum Disorder Program is working with 135 families living with the developmental disorder, with 50 of those in the North Battleford area.
Nyna Barclay, who has been with the program since March 2013, is the assessor co-ordinator. At an Autism Awareness Walk April 27, she said they want to raise awareness of their programs so people know where to go when they are looking for help.
Barclay, whose background is in occupational therapy, says there are three staff in North Battleford, herself, an occupational therapist and a support worker. There is also a co-ordinator in Lloydminster along with an occupational therapist and a speech language pathologist.
Program services include initial screening, helping develop individualized programs and supports, linking families to appropriate programs and services. The program vision is for individuals affected by autism spectrum disorders, and their families, to have co-ordinated access to effective and efficient services and supports that meet their needs and enhance their capacity to function in and contribute to the community.
Attending the awareness walk this year were several families who are living with autism. Two of the families are featured in this installment of Everybody Has a Story. Read on for their stories.
The Martens Family
Tim Martens is the son of Gloria and Alan Martens and older brother to Isaac. Diagnosed with high functioning autism when he was four, he is now a Grade 12 student at John Paul II Collegiate in North Battleford.
Gloria Martens says Tim is doing well in school. He is taking mainstream classes and no longer has a regular educational assistant working with him. It's part of getting him ready for life after school, says his mom.
"There are some challenges, but he's really matured this last year because of it," she says.
Plans for when he finishes school are not nailed down yet, says Gloria. He may take another year of high school to take courses he didn't have a chance to take before, such as drama, because the focus was on getting the credits he needed to graduate.
Maybe he'll take some courses through the North West Regional College to find where his interests lie, she adds.
He'll probably stay at home with his family for a while longer, but they will be submitting his name for assisted living in this community down the road. The hope is eventually he will be able to live on his own, although in an assisted living situation, and find work he will enjoy.
"I think he would do well with some independence," says Gloria.
Tim has always done well academically, she says. He excels at math and his chemistry teacher says he's one of two kids she's ever taught that could do chemical equations in their heads. He is interested in computers, electronics, anything mechanical, board games and video games, and has an excellent memory. It's in the area of socialization that he has experienced the most developmental delay.
Gloria says Tim was about a year and a half when she first saw signs that something wasn't quite right. He didn't seem to want to interact with others and was bothered by the vacuum and other loud noises.
"I had a feeling there was something there."
Tim's mom says there is autism in her family. Her sister's son has been diagnosed with pervasive development disorder not otherwise specified, or PDD-NOS, and since Tim's diagnosis, her brother has also been diagnosed.
Like many other families, it was a several-year journey to get assessment and a diagnosis for Tim. The diagnosis of autism was made at the Kinsmen Children's Centre in Saskatoon.
They have accessed a variety of interventions, starting with Battlefords Early Childhood Intervention Program. Through the Battlefords Society for Autism summer student program Tim was able to go out into the community to learn and practice socializing. He has also been involved in a social club through the Prairie North Health Region.
He's also had support at school, including the help of educational assistants in earlier years, and in high school he has been learning life skills through a work program. He has enjoyed working at Home Hardware assembling and pricing products and at Sobeys bagging groceries.
Gloria said the family can see an increase in his interaction with them as a result of his work experience. He's able to tell them more about what he thinks and feels.
At home, he has an established routine, something they've established since he was very young. When he gets up in the morning, he makes his own breakfast and his own lunch.
Gloria adds, however, they have made a point of having him fit into a family life routine, rather than revolving everything around him.
"We have him fit into the family, not the whole family to change how we do things for him," she points out. "That's not to say we don't understand there are going to be issues along the way, times when he's had a harder day or not enough sleep."
People often say people with autism can't adapt to changes, but that's not always true, says Gloria. They can adapt if they are prepared for it.
"I always just planned ahead, told him 'we're going to do this today, Tim.'"
The Martens family attended the awareness walk, not only to let people know "autism is out there and on the rise," but to let people know more funding is needed for services to families living with autism.
"In Ontario, my sister gets respite money year round, says Gloria, and now that her nephew has graduated, her sister has been given a lump sum to provide funding for him.
"Things like that we don't have here," she says.
The need for more funding has also to do with the fact that there are few services for adults with autism.
"After age 19, there isn't much," she says, although she is aware the Battlefords Society for Autism is looking into starting a social club for adults with autism.
When they are young, that's where the most amount of services are, she says. It's understandable, she qualifies, because intervention is such an important key.
But they really do need support all through life, not just up to age 19, says Gloria.
Once they leave the school system, she says, it's "OK, see you later, you're on your own now."
It leaves many families in need of help, she says.
The Dietrich Family
Robyn and Mike Dietrich have three sons, the two elder of whom have been diagnosed with autism.
Keelan, 7, was diagnosed at age 3, and Graham, 6, was a year and a half when he was diagnosed.
They were living in British Columbia at the time, but it was in Saskatchewan that the journey to diagnosis got its start.
After Graham was born, Robyn was visiting her mom in Saskatoon.
Her mom said to her, "In the three weeks you've been here, Keelan hasn't looked me in the eye once."
Robyn says without much experience with children, her boys' behaviour was her normal.
"I didn't realize until I had a fresh pair of eyes," she says.
With Graham, it was more obvious because they'd been through it once already.
Getting a diagnosis started with a visit to the family doctor, who recommended them to a paediatric psychologist. In British Columbia, says Robyn, the system is so streamlined that as soon as the diagnosis was made, they were given a lump sum of money and a list of professionals to choose from to get the needed therapy.
"They were both getting about 20 hours of therapy a week," she says.
But, with Robyn's family in Saskatoon and Mike's in Regina, they missed the support of family. Three years ago they decided to move back to Saskatchewan. They knew there were fewer services, although that has improved in the three years they've been here, says Robyn, but the family support was important to them.
"To have so many professionals in your life and no family support was almost more difficult, more stressful," says Robyn, comparing the two health systems they've experienced.
"In B.C. the system is so focused on 'how can we change these kids to make them look like everyone else?' whereas having family support is 'let's love these kids for who they are.'"
The family feels less pressure as a result of the move. Who they are right now, rather than "how can we fix them," is what's important, says Robyn.
"It's easier to love them from that perspective."
Since their move they have been involved in just about every program available - speech pathology, social play groups and occupational therapy through Prairie North Health Region, the Battlefords Early Childhood Intervention Program and KidsFirst.
Graham is now in kindergarten and Keelan is in Grade 2 at Holy Family School in North Battleford. They both did pre-school there, says Robyn, so everybody knows the family.
"They do their best to help us in any way they can," she says.
The boys are in mainstream classes. Graham has three or four different educational assistants helping him throughout the day, mostly during unstructured time. During the most structured times of day, she says, he doesn't need that support, whereas the less structured time, like play time, is difficult for him.
"He doesn't understand the inherent social cues and rules that other kids just pick up," says Robyn. "These are things that have to be taught to him - to ask 'can I play with you?' or ask 'can I have that toy?' He often doesn't realize that's even an option."
Although he speaks rarely, Robyn knows he enjoys school.
"The other day he left school and said 'I love school,'" she says.
She says being away from school during the Easter break is also telling. The family's time has been less structured, and he hasn't been as positive.
"He's happy to go back to school," she says.
There's often talk that people with autism have no emotions, says Robyn. They are seen as "these emotionless sort of beings."
Not true, she says.
"Graham is really hypersensitive to other people's emotions. He picks them up quickly; he just doesn't know what to do with [them.]"
When other people get excited, he does too.
"He feeds off their energy, so in that way he is very sociable," says Robyn. "He just doesn't have the skills that other people learn. Those have to be specifically taught."
She sees his social skills improving as he progresses through school.
"Autism is a developmental delay," she says. "It isn't never, it's just not right now."
Right now, Graham has social skills at about a three-year-old level. It may be a huge difference now, she points out, but it won't be when he's 20.
"What's the difference between a 20-year-old and a 17-year-old?" she asks. "He will get there like everybody else. I believe he is fully capable. He just needs a lot more practice."
Keelan also loves school. But in other respects, he and Graham are "like night and day."
Keelan is more sensory, says his mom. He has issues with bright lights and loud noises. Unlike Graham, Keelan is a social butterfly. He is high energy, whereas Graham is more laid back.
"Keelan loves to be in control of everything," says Robyn. "If anyone is going to race, he has to be the one starting it, and that has been a bit of a challenge at school."
So far he is keeping up with his peers in his school work, although there may be issues further down the line. They deal with each of these issues as they come up, she says.
"Until we had Wesley, the baby, I didn't realize how easily all of these things came to other people's kid, like the language and the socializing, all these things that we have had to teach," says Robyn. "It just blows your mind how a lot of other people have experienced their children and how my kids are, and yet you're are left feeling so much more grateful."
With tears of emotion, Robyn adds, "Graham was five the first time he said, 'I love you.'"
