Two Great Kids
By Tom Morgan
Alana, now 18, is a freshman at the University of Washington. She was born with a tumor in her left arm, just below the elbow. When Alana was young, she had major surgery to remove the tumor along with chemotherapy and radiation treatment. Even with these treatments, we were unsure whether she would be able to keep her arm, and amputation looked likely when she was in grade school. The surgery and radiation greatly affected Alana’s left arm. She has very little range of motion in her arm and cannot fully open her hand. Due to atrophy, her left arm is much smaller than her right arm. The tumor has stopped growing; however, and the chance of Alana losing her arm grows less with each year.
Trevor, 16, is a very handsome, tall and slender teen-ager. He is greatly affected with autism and currently is in a self-contained classroom at Auburn High School. Trevor requires constant supervision, as he cannot completely care for himself and does not fully appreciate dangerous situations. His speech is limited and it is hard for people that do not know him to understand him. However, he does communicate through the use of sign and writing to communicate. Once Trevor knows how to spell a word, he will always spell it accurately!
Trevor enjoys his videos, working in the yard, traveling, and playing in a pool. He can look at any tree and tell you the type. He cannot ride a bicycle by himself, so we bought a tandem that we enjoy riding together. Trevor yells “fast” from the second seat when I’m not pedaling enough for him!
Being the father of two children with disabilities has been both difficult and rewarding. It seems that when they were younger, when one child’s issues seemed to be subsiding, problems would arise with the other. Maybe it is best that they “took turns” because it would have been too difficult to cope with both problems at the same time.
I often hear from fathers of children with disabilities that they have “accepted” their child’s disability. I don’t think that I ever truly will. I find myself going back and forth between the stages of grieving, denial, anger, bargaining, depression and acceptance. As time goes by, I spend more time in the “acceptance” stage, but at times will still go through some of the other stages.
I see friends and co-workers that have children Trevor’s age and wonder what it would be like if he did not have autism. They talk about their children and what they are doing, and it is hard for me to relate to and sometimes to really even understand. My reality is very different than theirs, and they cannot relate to what is happening in my life. Some people are polite and try to empathize, but they don’t truly understand. The Fathers Network has been the only place I know where I can talk openly, be understood, and be cared about without pity.
The other area of my life that has been greatly affected by raising two children with special needs is my relationship with my wife, Jan. Much of what we do is centered on meeting the needs of our children. I suppose that is true of all parents, but the needs of children with disabilities seems more intense and urgent.
Jan does the vast majority of the care for our children. She deals with the schools, the doctors and other specialists, and provides recreational opportunities for our son. Because of the tasks Jan performs, and the demands on me from work and home, we do not have as much time as we would like to spend with each other.
I hear about what other couples do together and at times am envious. We receive respite, but it is still difficult to get away, and then only for a few hours. Our idea of “getting away for the weekend” is to drive to the other side of the state with Trevor to make a doctor’s appointment.
The rewards with my children are, sometimes, huge as well. I think that fathers of “typically developing” children sometimes don’t always appreciate what their children accomplish.
Alana compensates extremely well for her limitations and most people will never notice that her left arm is different. She has grown into a very beautiful, intelligent, and caring young lady. She was in her high school show choir, held a summer job performing a song and dance routine at a local water park, and was first runner-up in the Miss Auburn Pageant. I had never been so proud and excited in all my life!
Although Trevor’s progress is sometimes slow, he often surprises us with what he knows and can do. Besides his spelling and knowledge of trees, he’s a whiz on the computer. He has a great memory and sense of direction, and knows geography and reads maps very well. As Trevor has already surpassed many levels that we first thought he’d never attain, I now try not to put limitations on what he can or will be able to do in the future. He has proven the “experts” and us wrong so many times.
Although at times demanding, Trevor is a great son. He likes to go places and do things with us, something rare in a sixteen-year-old boy. He has a sweet smile and an infectious laugh. I can truly enjoy his triumphs, and see small improvements that other fathers probably miss with their children.
I’ve heard the saying that being the father of a child with special needs is more of a marathon than a sprint - you have to pace yourself to best meet the needs of your child. That part is true, but unlike a marathon, there is no finish line. We will always be caring for Trevor, whether he lives in our home or not.
I’ve learned to reset my expectations, my goals, and my values—and I believe I’ve done this for the better. For this, I have my children to thank.
Tom Morgan, his wife, Jan, and son, Trevor, live in southeast King County. Their daughter, Alana, lives and goes to school at the University of Washington. Tom is an Air Traffic Supervisor for the Federal Aviation Administration and has been a member of the Fathers Network for over 14 years.
