BELFAST, Maine — For Kim Topaz, every day is a good day to talk about autism. But Monday — World Autism Day — just happened to be a time that the Belfast Co-op employee made extra efforts to describe the disorder that affects her teenage son.
She wore blue to mark the third year of the Light It Up Blue global initiative to help raise awareness about autism, which affects a growing number of Americans. According to the U.S. Centers for Disease Control and Prevention, 1 in 88 8-year-olds has some form of the disorder, which is marked by symptoms that include social and communication difficulties starting in early childhood as well as repetitive behaviors or abnormally intense interests.
One of those affected is Topaz’s 18-year-old son, Sebastian Grant, who was diagnosed as a child.
“I am trying to increase awareness,” she said. “I don’t look at my son as being damaged. I look at him as special. He functions outside of what’s considered normal.”
She said that every single child who is diagnosed with autism has a different experience.
“They all have different limitations and different special gifts,” Topaz said.
When her son was little, the single mom described him as her “sunshine boy,” especially as compared to his hyperactive older sister.
“He was always good, really sweet and loving and affectionate,” she said.
But when he went to school, teachers began to question whether there might be a problem. He was oppositional, meaning he didn’t like to be told what to do, and they wondered if he might have attention deficit disorder. In sixth grade, a teacher asked if he had been tested for Asperger’s syndrome, which is an autism spectrum disorder.
The suspicion proved to be true. But that label does not mean that Topaz considers her son to be anything less than amazing. She said she has heard of parents submitting their autistic children to laboratories for testing in an effort to “cure” them of autism. The causes of autism are unknown and there is no blood test, brain scan or other biological marker for it.
“It broke my heart that parents would fight so hard for their children to be average,” Topaz said.
But life with an autistic child still presents its challenges. When Grant was small, Topaz and her daughter worked to teach Grant how to have a sense of humor — something that did not happen naturally with him. They would make jokes, catch his eye and say “ha, ha, ha” when it was time to laugh.
“Over time, he’s developed a pretty good sense of humor,” she said.
An elementary school teacher gently helped him learn how to make eye contact, which he continues to do. Later, Grant began to go to The Game Loft in downtown Belfast, an after-school program which serves Waldo County youth. There he found a niche, running his own games, making friends and becoming a leader.
“I can’t stress enough how much The Game Loft has done for him,” Topaz said.
He’s plugging away at high school and is on track to graduate this spring through B-COPE, the alternative high school for RSU 20.
Topaz said that she drives him to school each day, making sure along the way that they listen to music, laugh and that he is set up for a good day.
Grant has had difficulties trying to hold down a job, she said. A part-time job in the co-op’s maintenance department didn’t work out for him, even though his co-workers tried hard to understand his limitations because of his diagnosis.
“There are definitely difficult times,” she said. “It’s not all roses.”
On the positive end of the scale is Grant’s artwork. He has been developing his own style, and lately has been drawing famous people as My Little Ponies. One he did of Johnny Depp as a pony makes Topaz smile.
“My job is keeping him going on that,” she said of Grant’s artwork.
Topaz said that even though helping Grant thrive takes a lot of time and energy — she gave thanks to a number of local and state organizations that are helping him do exactly that — she doesn’t plan to quit anytime soon.
She cited Temple Grandin’s mother as an inspiration. Grandin, who has autism, is a well-known autism advocate and doctor of animal science at Colorado State University in Fort Collins. Her mother wouldn’t accept the conventional wisdom of the day, that Grandin never would be a functional member of society, as fact.
“There’s certainly a temptation to give up,” Topaz said. “But I’m not going to give up now.”
For more about the Light It Up Blue autism campaign, visit www.lightitupblue.org.
This young man is lucky he has such a special mom to advocate for him.
Kim and Sebastian are so lucky to have each other!
Temple Grandin believes the world needs all kinds of minds. Here’s a video of her speaking at a TED conference.
http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html
My boyfriend has Asperger’s Syndrome. I wouldn’t want him any other way, though times can be difficult. He was not diagnosed until age 29. It has made it harder for him not having any idea why he felt so different for most of his life. early diagnosis is very important and I am so happy that it is becoming more easily recognizable so that children can get help as early as possible. Sadly, there are not as many resources for adults with AS so my boyfriend still has some major struggles, such as getting and keeping a job. It is very damaging to his confidence. I wish I could help him more.
I wonder how many people have autism? Sometimes I think I do . Not being a social creature always thinking abstractly , not going along with the social norms. Sometimes it make you a better person in some ways.
as a Mom of a teenage boy with autism, I say BRAVO to this Mom-job well done. I too fight tooth and nail and advocate for my son to overcome the many obstacles that autism creates. I try and educate those around me about autism. I have to. The worse part is the fact that this is a hidden disability. People look at my son not knowing that he is autistic. They dont understand that some of the quirky things he says or does is because he is autistic. I have had interactions with both rude and understanding people. I have been shocked by complete strangers who have given unsolicited cruel remarks about my sons quirkiness. I have also met some wonderful people who truly have compassion towards my son. I used to wish I could cure my son of his autism. After years of living with autism, I can honestly say that I cant imagine him not being autistic. Its a part of him. In strange ways, autism has been an eye opener in our family. It changes your perspective. it has made us better people. We are more tolerant of others, and more willing to fight for what we believe in. My son is a happy teenage boy, who has hopes and dreams like the rest of us. One day with continued hard work, he will be able to care for himself, and have a job. Thats what he wants. He even wants to go to college. He has come a long way and should be proud of how much hard work he has done to get where he is today. What more can I ask for?
also, too bad that state and federal governments keep cutting services that will help people with autism and other disabilities to lead more independent lives. These state and federal agencies should realize that they are spending a dime to save a nickel with their current approach. Cutting services will cost them more in the long term financially.
Like lucikasky, my boyfriend has Asperger’s as well. It can be a major strain on a relationship, but he really excels at the things he loves. He’s a mathematician and a college professor, which is great because no one expects math nerds not to be socially awkward! And he looooooooves mountains and hiking. He calls them the 3 M’s (he has another obsession beginning with M). He was diagnosed at a young age. A funny story is about how he corrected the kids on the playground. When the other kids played bus and were steering like mad men, he showed them how to steer properly. When the other kids pretended to be dogs on their hands and knees, he would do it on his hands and feet because dogs don’t walk on their knees! Pretty cute, but clearly different somehow. Now that he’s just turned 30, and I’ve been helping him with his social skills for almost 4 years, he’s doing really well.
I love the sample of Sebastian’s artwork. It seems pretty clear to me that it’s something he loves doing. He has a great personal style, definitely keep it up!
It always helps me tremendously to be in touch with people who understand. There is a father of a young man with Aspergers who recognized the “look” on my son’s face, “sweet innocence” he called it. It helps both of us to be able to talk with each other about raising these exceptional kids. I have enjoyed reading all of these letters. Thanks for the positive feedback!
viptoshopper.com