News and Knowledge

In April, the Centers for Disease Control and Prevention upped its estimate of autism prevalence in children from 1 in 68 to 1 in 59. That is an alarming number. In our family, however, it is even higher. Of my wife’s and my four grandchildren, two — twin granddaughters — were diagnosed on the autism spectrum at around age 2. That is personal.

The journey for every child with autism is unique because every child is different. Support systems and resources vary among families. Amid all the diversity of experience that comes with autism, one thing is clear: grandparents often play a vital role and experience their own stresses and triumphs in these families.

The Twins

For our family, the diagnosis was a relief in a way because it was an explanation for the signs we had already noticed. However, it was an answer that brought many more questions. What do we do?  What can I do?  Over the next few years, they were enrolled in a pre-school program specifically for kids with autism. They moved in with us so that the family would have more financial support. The girls thrived in the program over the next few years. By the time they were five, they were able to start kindergarten in a regular class. They still had challenges and struggles but were able to do well.

Today, amazingly, they are freshmen in college. Ali is studying music and hopes to become a band teacher while Sara wants to study neurology and work in autism research. They tried different activities throughout their school years, ranging from soccer, softball, and cross-country to the academic quiz team (or what I call the nerd Olympics) and the marching band. They absolutely found their niche with those last two activities.

The hardest part about school for them had nothing to do with academics. It was lunch. Fitting in and finding someone to have a conversation was the most difficult thing for them. A large group of friends has never been their thing, which is okay. Hanging out with a big group is not for everyone.

What Grandparents Do

In 2010, the Interactive Autism Network surveyed more than 2,600 people whose grandchildren had been diagnosed. The survey revealed that 30 percent reported they were the first to voice concerns about development delays. A large majority (71 percent) said they were involved in making treatment decisions, while 34 percent said they provided at least some level of “direct care” at least once a week, and 57 percent provided some sort of financial help. Nearly one in five of the respondents reported that they and their adult children had moved closer to each other so that the grandparents could help the family manage all that is involved with the child’s autism spectrum disorder (ASD).

I believe grandparents can make useful contributions to their grandchildren’s lives. These are a few suggestions gleaned from my personal experience:

• Do the research. Learn about autism and be a resource for your family. Organizations like OAR make a world of difference in offering resources, support, and awareness.
• Know your grandchild’s plan and be able to offer a seamless transition when they are in your care. Even if you do not agree.
• Focus attention on all your grandchildren. So many times, the children with autism will require more resources and energy, but do not let that take away from other kids.
• Support the family in every way you can or feel comfortable with.

I cannot tell you that the road will be easy. In even the most ideal circumstances, families struggle to agree and work together. In the end, it comes down to doing your best to support not only your grandchildren but also your adult children in their role as parents. And don’t forget to give yourself time and space as needed.

What I hope is that you find the same kind of happy ending my wife and I have: Watching two gifted children overcome challenges to grow into the young adults they were meant to be.

In addition to his active role as a grandparent, Pete Jewett is part of OAR’s RUN FOR AUTISM team. He has participated in the Marine Corps Marathon three times, the Virginia Ten Miler three times, the Blue Ridge Half Marathon five times, and several others. He also began a yearly charity 5K at his work to raise money for and support OAR. Last year, the 5K raised $8,000; in the past two years the race has raised a total of $115,000 for twelve different charities.