Sunday, September 15, 2013

Lessons from Special Needs Parents

This week I was surprised and pleased to receive a letter in the mail from an old friend and former colleague with whom I hadn’t been in contact for several years. Although he had been my teacher in seventh grade and later worked with me for many years, we lost touch after he retired from teaching and moved to another city to be near his children and grandchildren. Apparently, he decided to write to me after seeing the article about our family in the November 2012 issue of Woman’s Day magazine. [To read this article online, click here.] As the parent of a special needs adult himself, he shared that his son, who has cerebral palsy and is wheelchair bound, is currently living in a group home with three other men. He also told me that one of his son’s roommates is a young man with autism who is a Civil War buff and enjoys participating in Civil War reenactments. I think he wanted to prepare me for the eventual changes ahead when Alex will be away from home in supported living and to let me know that Alex will be all right, just as his son and his roommate with autism are all right.

His letter made me think back to when I first started teaching, a few years before I got married and a few more years before I had Alex. At the time, I was fortunate enough to work with him and with another parent of a special needs child; both of them were parenting teenagers with severe physical and mental challenges. My understanding is that his son was given too much oxygen shortly after birth that caused damage resulting in cerebral palsy. My other friend and colleague has a son who suffered a stroke during her pregnancy that left him with paralysis on one side and cognitive difficulties. Despite all their worries and responsibilities of caring for these children who were becoming adults, my friends didn’t complain or feel sorry for themselves. In fact, they have always been two of the most upbeat and optimistic people I know. As I got to know them better, I marveled at how well they coped with the challenges their children faced, and I wondered how they could ever be happy again once they knew their children had disabilities that would profoundly impact their lives and the lives of their families.

As someone who believes that God puts people into our lives for a reason, I have no doubt that God placed these two caring parents of special needs children in my life long before my child was diagnosed with autism. Knowing I would need role models and empathy, He placed them close at hand to provide me with the support I needed. Even though the original prognosis for their children was quite poor, with their parents’ love, devotion, faith, and hope, their children overcame obstacles doctors predicted they never could. Moreover, in trying to give their children many experiences in life, they took them out in the community to enjoy activities, such as concerts and sporting events. As I watched them with admiration, I was learning lessons I didn’t know I would need later in life when my own child was diagnosed with special needs.  Essentially, some of the most valuable things I’ve learned about raising Alex I’ve learned from two special needs parents and the examples they’ve set. Of course, both of them, who are quite humble about their roles as special needs parents, would say I would have figured out what I needed to know on my own, but I am thankful for what I was able to learn from them.

1. Create a “new normal.” My child may not play sports because of his disability, but he can go to sporting events and enjoy himself. My child may not play a musical instrument because of his fine motor issues, but he can learn to love music by listening to it. Instead of complaining about what he can’t do or how our family life is different from other families’ lives, we focus on what he can do and create our own traditions that have meaning for us. For instance, while going to the grocery store is a necessary chore for some families, for us it’s a fun outing because Alex enjoys it so much.

2. Have hope. Both of my friends chose not to believe all the limitations professionals placed upon their children. They focused on what their sons could do instead of what they couldn’t do. My friend whose son had a stroke prior to birth was told by doctors that he would never walk or talk. Not only can he walk and talk, he has a job and lives in an apartment by himself, and he has a wicked sense of humor that shows how sharp his mind really is. I give his parents, especially his mother, all the credit for how far he’s come. Seeing his progress gives me great hope for Alex’s future.

3. Have faith. Although both of my friends’ children have dealt with serious physical conditions, their parents trusted God at all times. Despite the horrendous financial strains on their family budgets because of medical bills, they had faith that the Lord would provide, and He did. They knew that God has always been in control, and their faith carried them through many difficulties, just as faith has carried us through with Alex.

4. Keep a sense of humor. One of the qualities that has always impressed me about my two friends is their ability to find humor in situations that others may not see. Frankly, our kids are funny, but not everyone sees how clever and amusing they really are. Often humor keeps us from crying in some circumstances, and laughter is always preferable to tears.

5.  Choose joy. While caring for a special needs child can be exhausting and frustrating, I’ve learned from my friends’ example to choose to be happy. Not only does this make each day easier, but that joy can be contagious and spread to those around us. Recently, a friend of mine commented that I was always upbeat, which made her feel that she could be upbeat, too. I took that as a tremendous compliment and felt pleased that she saw me as a joyous person.

In my previous two blog entries, I’ve written about parents of children with autism who apparently could not cope with the struggles and decided that death was preferable to life, leading to tragic outcomes. I only wish that they had been able to learn from the special needs parents who unknowingly acted as mentors to me. Perhaps with creativity, hope, faith, humor, and joy, they could have endured the struggles and enjoyed the rewards. I’m just thankful for my friends who shared their experiences as special needs parents so that I would be better prepared for being an autism mom. They truly are gifts from God.

“…For the joy of the Lord is my strength.” Nehemiah 8:10


K. C. Wells said...

I think it's wonderful that you have had so many special people support your family. And in turn, you have used your wisdom and strength to help others. ❤

Pam Byrne said...

Thanks, K.C., for your sweet note and for the support you have given me. I'm blessed to have friends who have helped during the tough times and celebrated during the good times.