Give focus to Autism Awareness Month
EDITOR’S NOTE: In recognition of Autism Awareness Month this April, The Expositor worked with Pam McLaughlin of Gore Bay, the mother of fraternal twins Molly (who was diagnosed with autism at age 1) and Annie, on this story, reflecting on both girls’ parallel life journeys and varying experiences their first year of high school.
MANITOULIN—Gore Bay fraternal twins Molly and Annie Blodgett are winding down their first year in high school at Manitoulin Secondary. For both girls the year was filled with new adventures, but for Molly the transition to high school had additional challenges through the lens of autism.
Molly and Annie were born two minutes apart on March 4, 2001 to Pam McLaughlin and Ken Blodgett and have lived in Gore Bay their whole lives. “The girls have always been close but after Molly was diagnosed with autism they have been experiencing life differently,” explained Ms. McLaughlin. “The girls have been on parallel journeys: Annie experiences life from a ‘neurotypical’ viewpoint while Molly’s experiences are those of a child with autism.”
Molly and Annie both attended C.C. McLean Public School in Gore Bay, starting at Manitoulin Secondary School last fall.
“Annie was excited to go to high school—a bigger school with more students and activities,” said Ms. McLaughlin. “She picked out the courses she wanted to take and went to orientation at MSS last summer.”
“I was a little nervous, but mostly excited,” Annie said. “Most of my friends were already in high school.”
For Molly, attending a new school presented many challenges which had be handled carefully in order to make the transition positive.
“We had several meetings with representatives from both of the schools then we prepared to begin the ‘transition visits’ for Molly,” said Ms. McLaughlin. “This is standard for children with autism, to slowly introduce them to changes in routine and/or new experiences. In a typical transition visit, Molly’s private therapist and her EA from elementary school would take her to visit the high school. First they prepared a ‘social story’ for Molly. The social story would be a booklet with words and pictures to explain what would happen on the trip to the high school. The social story is a crucial tool for many children with autism. It tells them in advance what to expect when their routine is changed. Molly’s social story had pictures of the MSS entrance, the hallways, the new classroom and some of the staff. The story would include what she would do there during the visit, who would be with her and how long she would stay. This helps to reduce the fear and anxiety that people with autism often suffer from. This anxiety can be really debilitating and can lead to upsets or meltdowns. So many precautions are taken to make sure Molly is prepared so that her new experiences can be successful. Often the social story is introduced several days (if not weeks) in advance to prepare her.”
The transition visits allowed Molly to settle into her new routine at MSS. Her class is a life skills classroom with five male students as her classmates and teacher Paul Becks, assisted by four females education assistants that frequent the classroom.
Despite being settled into her routine, the change was still giving Molly anxiety.
“MSS was so big and she wasn’t used to not seeing people she knew,” said Ms. McLaughlin. “At C.C. McLean she knew the teachers and students and saw her sister and cousins in the hallway. A big turning point for Molly was seeing Annie and her friends at school. I took her to school one lunch, and Annie and her friends, who Molly also grew up with, came out and spoke to Molly in the car. She was able to see that all the kids transitioned and realized that her sister and her friends were at MSS also. She made that connection and that really helped her.”
High school presented different challenges for Annie, taking a bus for the first time and a fuller academic load, for instance.
“Math class was challenging, but everything else has been good,” said Annie. “I like having more freedom and being with my friends from different towns.”
“High school is much different, but Molly is having a positive experience and learning how to be more independent,” said Ms. McLaughlin on Molly’s behalf.
Ms. McLaughlin praised MSS Principal Laurie Zahnow who she said was very helpful during the process of providing a classroom space in which to set up Molly’s sensory equipment.
“The school board’s occupational therapist has made a sensory diet of activities that Molly can partake in to keep her happy, calm and focussed,” she explained. “Many children can benefit from the activities to help them learn better in school. If Molly is having a rough day or is feeling sensory overload (from lights, noises, smells) then she can go to the sensory room or ‘break room’ to have some quiet time. There is a swing hammock, a bubble light tube, a small trampoline, a roller/squeezer device and other helpful OT approved equipment. Everyone needs a break sometimes and it helps kids with autism to regulate their bodies and senses so they can connect with others better.”
The average day for Molly and Annie differs. Ms. McLaughlin describes a typical routine for Annie is getting up at 6:30 am and getting ready for school.
“Things are very different now that she is in Grade 9,” she said. “She is more independent. She makes her own healthy lunch for school, usually the night before, and makes her own breakfast. She leaves the house by 7:45 am to walk to the bus stop downtown. The bus arrives back in Gore Bay at 3:45 pm and then she walks home or goes to hang out with friends—a typical 15-year-old high school kid. She works part-time and does volunteer work. Annie says high school is harder than elementary school with more schoolwork to do but she likes it. She worked hard and got exempted from all her exams in first semester.”
Molly’s average high school routine is much different, focussed on providing her with more time to wake up and aimed at preventing any anxiety.
Molly usually wakes up just after Annie leaves the house at around 7:45 am.
“She needs extra time in the morning and she thrives on routine,” her mother explained. “We try to keep it stress-free with no rushing. That would be upsetting for her and cause anxiety.”
“The first thing Molly does is ask me for a bath. She doesn’t like showers (she is sensitive to having water on her face and hair). I run a bath for her each morning and then make her breakfast.”
“Molly likes to listen to the kids’ music channel on the satellite TV (No. 936) every day,” says Ms. McLaughlin. “She insists on it. After breakfast she has her iPad time watching music videos and reading stuff. Often she will read out loud or sing to herself. I put out her clothes for school and I make her lunch. Shortly after 9 am I begin gently prompting her, ‘time to get ready for school, Molly’. Sometimes she gets upset and I know she needs more time. Then she gets dressed and is ready to go. She grabs her backpack and puts on her coat on and tells me: ‘Mom’s black car. Go to MSS,’ and off we go.”
Though Molly has adjusted well to her new adventure, Ms. McLaughlin reflected on where Molly’s path strayed from her sister’s.
Ms. McLaughlin explained that when Molly reached age one she changed drastically over a short period of time—she stopped talking, lost eye contact with others and became withdrawn. Eight months later she was diagnosed with Kanner’s Syndrome, a classic severe autism.
She said that Molly didn’t talk, so Molly and the family learned sign language to help her communicate.
“Molly started intensive ABA therapy at the age of two,” said Ms. McLaughlin. “This is called IBI therapy which stands for ‘intensive behavioural invention.’ The technique of ABA (applied behavioural analysis) is used to help pull these children out of the isolated worlds they live in.”
“It saved Molly,” Ms. McLaughlin insists. “I really believe that. She couldn’t speak and didn’t interact with others. IBI therapy helped her to connect with us again.”
When Molly was six, the government cut off her IBI therapy.
“The government agency told me in 2007 that Molly had ‘aged out’ of the program despite the fact that she was progressing well,” said Ms. McLaughlin. “Last week the Ontario provincial government announced that therapy for children with autism will be cut off at age 5. It breaks my heart that here it is in 2016 and instead of increasing help for children with autism, our government is cutting them off even earlier. To me this is life saving and life changing, necessary therapy to give these kids a chance. Autism doesn’t stop at age 5.”
“We are past that point now, but I remember what it was like having Molly on that waiting list—being at the mercy of the system,” she added. “We waited eight months, but it dragged out, which is frustrating when early intervention is key with autism. What most people don’t realize is that the waiting lists for these families keeps growing longer. The children with autism are getting little to no actual intervention therapy which can change lives. What will happen when they become adults? It seems criminal to me to deny a child help.”
Ms. McLaughlin said that as a family they have been “extremely lucky” to have great therapists who have worked with her from a young age.
“After she was cut off from the government program, we hired the same therapists privately so they could continue to work with Molly until this past year,” she shared.
Though Ms. McLaughlin said they don’t regret the decision to hire the therapists privately, it did come at a price as they had to re-mortgage their home.
“You do what you have to for your children’s health and the future,” she said. “Sacrifices are worth it.”
Molly began speaking when she was five, and reading and writing by age eight.
“She has a huge vocabulary, excellent spelling and an amazing memory,” Ms. McLaughlin shared. “She can talk now but she’s not able to engage in a full conversation like people are used to. She can explain things or ask for things in simple, short statements, but we are optimistic that more spontaneous speech and casual conversation can develop. There are so many great apps on the iPad that can help children with autism to communicate. The technology has been a huge boost to children with autism.”
For Annie, she is looking forward to a summer of hanging out with friends and boating. She also enjoys volunteering and writing. She tried CrossFit at MSS this year, but is thinking she might go out for badminton next year.
As for Molly, Ms. McLaughlin is glad that she has settled into her new routine at MSS and hopes that next year Molly will continue to grow socially.
“One thing about Molly having autism now that she is in high school is to note that unlike her ‘neurotypical’ teenaged sister, Molly never argues with me about what she is wearing to school and I don’t have to worry about her wanting to go out to parties, however I would welcome those minor parent-teenager conflicts in a heartbeat if things were different for Molly,” she concluded. “I hope that she is able to learn to adapt more easily to situations. I would like to see her blossom more in terms of communication and socially—I want to see her make new friendships.”