Grandparent shares the joys and frustration of autism
Sylvia Grubb, a former resident of Hudson and once owner of the Valley Bookseller, is in town Friday night, June 1 for a book signing at Chapter 2 Books in Hudson. Over a decade ago Grubb went searching for a resource to help her and her husband Hollis, understand autism and what grandparents could do.
Shortly after their grandson Micah was diagnosed with autism at age 3, Grubb attended a Minnesota Conference on autism.
"I asked for a book that would help grandparents," said Grubb. "They did not have the foggiest idea of what I was looking for. I came home and decided I'd better write one myself." She started back when Micah was four or five with the concept of that it would include stories and discussions of what grandparents could do.
"I wanted to write it but realized I didn't have that much experience so I set it aside," said Grubb, who then went on to join writing groups both locally and in Arizona where the couple spends winters. In the meantime she and Hollis gained literally years of experience with Micah and his family.
"Two and a half years ago Stuart came by and said if you are going to write this book you need to do it," said Sylvia. Stuart realized there was something missing in the text and that was when he stepped in to add to the discussion part of the book.
This spring, "Grandparenting a Child with Autism" was published and Grubb will be signing copies Friday, June 1, at Chapter 2 Books, 422 Second St.
The book is full of compassion and even a bit of humor as Sylvia and Stuart chronicle Micah's life and the family's involvement. What it really offers is insight not only for grandparents of a child with autism, but for anyone with a family member or friend who wants to understand the joys and frustration of that journey.
Today, Micah, attends Stillwater High School, participates successfully in many individual sports and has a phenomenal memory. He also agreed to be interviewed and did a book signing at a St. Croix Trail Blazers fundraiser.
"I learned so much since Micah's diagnosis," said Grubb. "The book became a nice bonding thing for our family. It was sort of a family project. I don't know of any other books that are exactly like this."
Sylvia and Hollis were stunned, after Micah was diagnosed, which took time since doctors initially tried to tell the family that their bright, talkative child, who was withdrawing into himself and retreating from their world was just going through a phase.
Micah was three and it was the mid-90s at the onset of what would become an autism epidemic. Tests were not yet developed to give family doctors the insight they needed.
"First is the mystery of autism," said Sylvia. "I had no idea what it was. I knew we would have to do a lot of studying. It was a terrible feeling that your (grand) child is not neuro-typical. It was such a vast emptiness."
Many families do not survive the stress of the diagnosis.
"It is a challenge beyond belief," said Sylvia. "We are fortunate that Micah is more mid-range and he has had a lot of help along the way."
"You ask yourself will he be able to go to school, will he be able to learn," said Sylvia. "It is a feeling that is difficult to describe. Some grandparents cannot deal with it, because the child may not have social skills and they don't know how to relate. That is really the ultimate challenge to get the social skills they need." According to Sylvia, denial is huge, especially on the part of grandparents. It is hard for them to acknowledge anything is wrong.
Another challenge is that it is very difficult to determine, what is bad behavior as a result of autism and what is bad behavior because that's just how children act normally.
"Once you become aware of what the characteristics are, you see that as they grow into adulthood they change," said Sylvia. "Now they believe that between the age of 18 and 25 they can make significant progress."
Today, Micah is a teenager and Sylvia's book chronicles the both his and his family's challenges and joys.
"When I was in elementary school my mom said my autism was bad," said Micah Grubb, who excels at skiing, swimming, golf, bowling and horseback riding. He has competed in Special Olympics in many of those activities. "My mom is not a very good skier." Being candid is one of Micah's traits.
"U.S. history is my favorite subject," Micah continued as he was interviewed about school and his interests. It was not surprising then that Washington D.C., the Smithsonian Institute and the Washington Monument were favorites. "I do like to travel and of course the Smithsonian and visiting the mountains are special."
Projects are keeping Micah busy as well.
"I groom four hours at a time at the stable," said Micah. "I can usually get six horses done, brushing their mane, tail and picking their hooves." He also cleans the stalls. Micah started riding with River Valley Riders when he was quite young. His experience and how it profoundly changed his life is one of the stories included in Sylvia's book.
Micah shared many remembrances that he enjoyed, from visiting San Francisco to taking a pottery class and raising chickens. His mother Susan joined us and added some insight as well.
"I am the one that has a good memory," said Micah. "I know stuff my mom does not remember." In fact, his recall was amazing as he related details of family vacations and events that marked his life.
Reading "Grandparenting a child with Autism" is a reminder that family members working as a team can enhance and pull a child back into a world they have left for reasons unknown.
For more information, go to www.autism-grandparenting.com or attend the book signing Friday night at Chapter 2 Books in Hudson.
Editor's note: As a family friend of Sylvia and Hollis Grubb, I have been aware of Micah's diagnosis and one time photographed him playing T-ball in Hudson. Reading her book, was a poignant reminder of how little, those of us who do not come into daily contact with the challenge of autism, understand. My own god-child is on the spectrum but he was not diagnosed until he reached the age of 30 plus and yet I see many of his quirks and behaviors revealed on the pages of this book. Perhaps we could have all related to him differently all those years, which would have enhanced not only his life but ours as well, if we had only known.