Having a Son with Asperger Syndrome: A Father’s Perspective (page 2)
For a dad (and a mom too), the arrival of your child is often like a gift from heaven. The package is perfect; the possibilities are endless, as are the expectations and hopes. With our first son it was that way for me.
As time went by, the realization that our son had something “different” going on was at first difficult to deal with. Many of the hopes and expectations I had for my son started to shift for me, but it was those same hopes and expectations that held me back from accepting help, or even a diagnosis. I simply felt that a diagnosis would be a label placed on my son and an admission that he was “broken.” That did not sit well with me. After all, I still viewed my son as a perfect gift from heaven with endless possibilities. Those two realities seemed to be impossible to resolve and I did not want to admit—when we received the diagnosis that he had Asperger Syndrome (AS)—that he was broken.
With the diagnosis came a ton of “churned-up” feelings that I described at the time as a cement mixer. I remember all of these heavy thoughts turning over and over in my heart and mind. What would this mean for our family? What would this mean for our plans? How would it affect Cam's future? How would it affect my career? Once we built up a support community around Cam, moving due to a career opportunity would mean rebuilding that team. For us that was a huge consideration.
A major turning point for me was the realization that kids with AS are not broken. They are, in fact, still perfect gifts from above that simply have different obstacles in front of them. As a dad, I was now in the obstacle-removal business. Individuals with AS have infinite potential as long as we can help them remove their obstacles. Fixing things that are broken is often thought of as a dad's role in the home. And although I couldn't “fix” my son, I could help him remove obstacles and enjoy watching him accomplish his goals. That was an infinitely more appealing idea than trying to “fix” him, at least to me.
The distinction of accepting him as a child with infinite potential and not as a kid I was unable to “fix” has changed our relationship forever for the positive. It has allowed me to see his differences without seeing him as different.
Once Cameron was diagnosed, the obstacles seemed to hit us faster than ever. School brought huge challenges. My wife Jen and I chose to face them by building a team of teachers, paraeducators and therapists to help us help him during his school day. We were blessed with great folks to work with, the ability to influence those (in a friendly way) who weren't so great and the wisdom to be able to see the differences between the two.
Was it easy? No.
Now that Cameron is 17 and in his final year of high school, it still isn't easy. Some of the obstacles could not be removed. School buses are still hugely difficult for many kids with AS. They are noisy, confusing places where bullying can occur and where it is almost impossible for parents to shield their child from the challenges. Our decision to drive him to school removed that obstacle for him and, in my view, was the best gift we could have given him. There was no redeeming value in keeping it in his way.
AS typically comes with an almost obsessive focus on special interests and a lack of social understanding. I have learned over the years to connect with Cam on his special interest, which is music. To connect with him, I need to truly spend time on his level. Kids with AS tend to excel in these special-interest areas and they provide great opportunities for a dad to build the confidence of his or her child. Children with AS may not be sports stars or easily find social success; however, they can find success in their endeavors and get the satisfaction of being “awesome” at something.
In parenting our son, the experience has been different compared to our other kids; it has also been the same in many ways. All kids have obstacles and need a team or teams of support around them. When dealing with AS, it just means that picking the team requires special concern and considerations. Do the people in Cam's family support group (our extended family) understand his needs? Can we educate them? Do his church and social support groups (friends) accept him? Can we help them to understand his needs without being intrusive? How can we help Cam's school team to support him when we are not there? As parents we have found creative ways to provide him the supports he needs. That seems to me to have made a significant difference.
It took me a while to figure this out and adjust my expectations of Cam's “awesomeness” to match what he was truly trying to be “awesome” at. I finally realized that he did not want to be a basketball player, but he was very proud of being a musician and member of the school band.
For me, being a dad to Cameron has been both challenging and intensely satisfying. Removing the obstacles that were holding him back from his success has provided the sweetest victories. Watching him succeed has been even better because in the back of my mind I know what he has overcome.
Reprinted with the permission of the Autism Society.
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