NAVIGATION

Autism: A Father’s Perspective - “Hopeful Devastation” to Profound Joy

Throughout the year, we honor the parents of children with autism spectrum disorders and other special needs. We are proud to know Jim Wright, father of a young man who attends one of our May Center schools, and to share his story and perspective here. 

Jacob was two-and-a-half when my wife and I learned that he had autism. My son is now a very busy 18-year-old. This is our story, and one that for the past 11 years has been inextricably connected to May Institute – a place that has made a profound difference in Jacob’s life.

For every parent of a child with autism, the journey is unique. It was 1994 when ours began. The diagnosis rate for autism at that time was somewhere around 1 in 800, compared to the 1 in 110 it is today. We had gone to our pediatrician with concerns about language difficulties and other developmental delays. We were told that Jacob was simply developing at a slower rate than our older daughter – essentially not to worry. The pediatrician’s words offered little comfort. Knowing that something was wrong and driven by a determination to “fix” whatever it was as quickly as possible, we looked for better answers. Our fear that something was not right was confirmed with a diagnosis of autism.

I remember that our initial reaction to the diagnosis was probably best described as “hopeful devastation.” We were crushed to find that our perfect little boy wasn’t perfect. But, at the same time, grateful for the early diagnosis and hopeful that it would give him a better chance at overcoming his challenges.

I think all parents – mothers and fathers – respond to an autism diagnosis differently. Some parents immediately go into problem-solving mode, while others need more time to process the information. They need a second or third opinion before they can begin to acknowledge the situation and move forward. For us, we jumped right in.

We didn’t know much about autism. However, my wife worked at a long-term care facility for children with disabilities and was somewhat familiar with some of the early intervention methods used. We were able to connect with some local home and school-based services through the school, which at that time were very limited.

Finding May Institute

We had heard of the good work at May Institute and wanted Jacob to be part of that world early on, but we were living in southern New Hampshire at the time and the distance was an obstacle. However, three years later when Jacob was seven we moved to California and discovered The Bay School in Santa Cruz, Calif. – a private school specifically serving children with autism that a few short years later would become part of the May Institute family. It was the perfect place for Jacob to be. (The Bay School is one of five special education schools operated by May Institute.)

In 2004, we returned to New England. We were not emotionally ready to have Jacob go into a residential school setting, but as Jacob got older, our thoughts began to change. Jacob would frequently wander from the house and out into the neighborhood. He would climb fences, climb out windows, and walk miles away from home. Frantic phone calls to resources in the community to help us find him were becoming routine, causing a high level of stress for everyone in the family who were becoming increasingly fearful for his well-being.

After six months pleading with the school system to find Jacob a residential placement where he would be safe, we found the May Center for Child Development in Chatham, Mass. Jacob spent four years there, in an environment that helped him to control his wandering compulsions and to deal with the frustrations and limitations that are real life. Two years ago, he transferred to the May Center for Child Development in Randolph, Mass., where he could be closer to home. Jacob is in a full-time day school program including academic, vocational and self-help skills instruction. He also lives with other students in one of May Institute's community-based residences. His greatest challenges come in the form of understanding social cues, awareness of his environment and communicating with others. We know Jacob is in a good place when, after a long weekend or vacation, he is asking to go back to school.

One of his greatest achievements and one our proudest moments was when Jacob performed a piano solo at the May Center’s Annual Jubilee held last summer in front of an audience of parents and his peers. Jacob also had the opportunity to show off his drawings as part of the art show that went along with the Jubilee. He also had his artwork displayed with another local artist’s exhibit in Westford, Mass., last year. Being able to express himself so creatively in front of an audience was huge for us, and huge for him.

Jacob has two sisters and a brother. To watch all of my kids grow, mature and develop has given me profound joy.

Advice to parents new to autism

To parents of children who have been newly diagnosed with autism, my advice is to learn as much as you can as fast as you can. The sooner you can come to terms with the new “normal” for your family, the better it is for your child and the rest of the family. Unfortunately, your “normal” plays out differently in the community.

In general, the community is empathetic when it comes to supporting children with autism, until there is a child with autism in their neighborhood or in their typical child’s class. The mindsets and prejudices that people have are formed early on in life. To the extent we can find ways for typical kids and those on the spectrum to have more interaction during those formative years, I think would help teach kids to appreciate each other as individuals rather than by defining them by any differences between them.

Learn to appreciate your child for the person he or she is. Be involved in their lives, spend time together. Sometimes it is difficult to find ways that you can be a part of their world, but those are the times you can engage with your child and share a part of their life. Continually work to understand their perspective and to find that middle ground between where he is and the rest of the world. Accept those things where there is difficulty and accept that there are some things you won’t be able to do as a family, and things that you will need to modify to accommodate their needs.

For example, when Jacob was young he learned to ride a bike, but he didn’t have the attention span or understand the safety issues related to riding a bike. So we bought a “trail-a-bike” that connected my bike to his, allowing him to pedal and balance, but not need to steer or brake. We spent hours together riding on local bike trails not far from our house. From that point on, and long after he had outgrown it, I knew there would be a few hours a week where he and I could spend time together, enjoying the outdoors, and each other’s company without the stress and demands of the rest of the world. We are looking for a new (and bigger!) bike that will give us that opportunity again. With summer here, we still take long walks in local parks, and when the weather is nice, we take canoe trips on local ponds and swing on the swing set.

Jacob will never be “normal” from society’s definition, but with the help of the May Center and countless individuals over the years, I feel blessed for the family that I have and the opportunity to see all of my kids grow up healthy and happy.

- Jim Wright

P.S. For the past two years, I have been an enthusiastic participant in the 100-mile Rodman Ride for Kids. There are lots of fund-raising rides out there, but it makes me feel good that 100 percent of the funds raised by May Institute participants go directly to the kids at May Institute. If you want to help make a difference, please consider participating!
 

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The Wright family - (l to r) Shannon, Collin, Kelsey, Kathleen, Jim, and Jacob