Jane Grimes’ goal is to raise awareness, support of autism in the community
By Robert Herrington
When Noblesville resident and advocate Jane Grimes’ daughter was diagnosed with autism at age 6, the statistics of those with autism was one in 10,000. Now, nine years later, the national rate is one in 68 children according to a recently released CDC study. This is a 30 percent increase from the 2012 report.
Grimes said the increased rate is due to better diagnosis, significant environmental factors, a genetic component and the spectrum is broad.
“Indiana is still the seventh highest state in numbers in autism,” she said. “The numbers are soaring and they aren’t going to go away. There isn’t a cure.”
Community impact
“Although Hamilton County schools are very good, we still have a long way to go with inclusion for special needs kids,” Grimes said, adding that autistic students in the county is 23 percent in the past two years. “We kind of box the kids in. We need to take a different approach on how we include them more in academics as well as sports and special interests.”
Grimes said autistic families often face educational challenges like educating the teacher to their individual child.
“Every child with autism is so different – the way they learn and the way they think is so incredibly different than the other 25 kids in the classroom,” she said.
Because Hamilton County schools are known for its special needs programs, the number of autistic students continues to grow. As students graduate, Grimes said the adult population is going to continue to grow at significant rates that no one is prepared for.
“Three years from now we’ll have the largest number of individuals with autism are going to be coming out of high school and we are not prepared. Can they live independently? Can they go on to college? Will they be living at home? It’s going to affect everyone,” she said. “I feel strongly that every single one can get employment – simple jobs that are repeatable depending on where their levels are.”
Issues
Grimes said the top three biggest challenges a family with autism faces are acceptance, the financial burden and support.
“As a parent it’s exhausting. You’re so caught up in the now that it’s hard to think of what the next journey is or what the future holds for not only your child with autism but the entire family,” she said. “So immersed in tackling and getting through the day or the week that we don’t spend the time you need to think about two weeks from not, let alone 10 years from now.”
Grimes said support can come from a friendly smile during tough times in public to neighbors or family friends offering to watch the child so the parents can get a break or have a date night.
“Everyone’s heard the word autism. Not everybody understands the different levels of autism but we are getting better,” Grimes said, adding the spectrum ranges from non-verbal to high functioning.
Grimes said a lot of individuals with autism look very typical but act up because something in their environments sensory wise sets them off. It could be the sunlight is too bright, fire sirens or too many people in a room.
“Whether you are a good parent or not, the child has a disability,” said Grimes. “People need to be more understanding regardless of where you are at and ask to help. If something happens it’s OK to ask a family if they need help instead of staring or judging. Jump in and help or give them a friendly smile and say, ‘It’s OK.’ These simple things are part of the acceptance goal.”
Sharing knowledge
In September, Grimes launched the Autism Companion magazine.
“I just jumped in,” she said. “I quit my nice six-figure job to launch a quarterly magazine. It’s one of the best things I’ve ever done. It addresses so many questions, anxieties and worries that a family goes through in the autism journey.”
Grimes said the target audience is families, educators and medical professionals. Sections are broken down by years and include several articles in each edition written by those with autism.
“It’s a glimpse of what an individual with autism really thinks, how they feel, how their brain works and what they want you to know,” Grimes said. “It brings more knowledge into our community in general.”
The magazine, which is created with a team of volunteers, contains expert topics including special education, speech and language, neurology, behavior and nutrition. Grimes said the goal is to inform and let others know they are not alone in the autism world.
“I wanted there to be more knowledge in the community and more support to the families – being behind the scenes to make a difference,” she said. “It’s such a significant, difficult journey. A piece of my heart is in each magazine, it’s who I am.
Autism Companion is circulated in Hamilton County and the other eight counties surrounding Marion County.
“My goal is for it to be a state magazine but the funding is not there yet,” Grimes said.
On April 23, Grimes will host the “Have a Heart for Autism” fundraiser at the Colts Pavilion. The sold-out event features keynote speaker Holly Robinson Peete, actress and mother of an autistic child.
What’s worked?
Autism is a journey and what works for one individual may not work at all for another. Jane Grimes shares what programs have worked for her family:
“Music, horseback riding and swimming have really reduced my daughter’s anxieties. I believe honestly that the environment and teachers your child has can make it a huge success or the worst disaster for your child with autism and family life.
We have had great success with GlutenFree/CasienFree with a low sugar diet. It’s made a significant difference to the point my daughter does a decent job managing it herself and knows she will feel horrible later and her GI system will not be healthy.
For me personally, counseling and connecting with other families who at the time were one to three years ahead of me with their child’s age was huge for me. They gave me insight into what is coming and yet allowed me to cry and learn to laugh at all the craziness that goes with autism. It’s a journey, it’s exhausting, it’s expensive and it takes a significant toll on marriages, sibling and the entire family unit. Our grandparents need to become more involved as we need their support. We used counseling for many years due to areas in anxiety, divorce, social situations, etc. … in the end it really helped her learn coping skills which in my opinion are priceless.
Many therapies and treatments exist so talk with others who have used them, get referrals and advice, and by all means stick with your “gut” feeling. I also believe that Special Olympics regardless of function level should be a must for your child. Initially, I will admit that I thought my child did not “need Special Olympics;” however, I believe it is a very good option and available to all.”
