"Normal" Lives

by Karen Lagrange

Our daughter, Alison, is a wonderful and beautiful child who gives us a great deal of joy. Alison is ten (10) years old and has multiple disabilities caused by having had infantile spasms, a rare seizure disorder, as a newborn.

Although doctors were very grim about Alison's prognosis, telling us she would not lead a normal life, she leads a life that is normal for her. Our family has made adjustments in many areas of our lives, but we all are living "normal" lives. Knowing this helped me to put our lives in perspective. I think this is the single most important realization I have had since Alison's birth.

Although professionals, such as doctors and therapists, teachers are important for Alison, I am also a professional. My profession is being Alison's mother, and I know her better than anyone. My thoughts and opinions matter, and need to be taken into account regarding anything relating to Alison.

Alison requires maximum assistance with feeding, bathing, dressing and is incontinent. Although non-verbal, she has learned to use some informal gestures to communicate some things to us (limitations in her fine motor skills prevent her from using sign language, and she is uninterested in using a communication device). She has cognitive disabilities that mean she needs more supervision than her younger brother, Dustin.

I'll be honest. At times, I do get overwhelmed with the amount of care she needs, but I realize this is a result of her disabilities, not her.

I still get teary eyed when thinking of when Alison learned to walk short distances when she was six (6) years old. We marvel at her every new accomplishment.

Alison receives special education through our public school system at our neighborhood school, two blocks from home -- the same school Dustin attends. She has made her First Communion and attends Sunday Mass on a regular basis. She loves to swim and swing. She loves to go for rides in the van and has amazed us with her ability to know her way around town. She loves to go to the roller skating rink and have me push her in her wheelchair while I skate. Like most girls, she loves going shopping. She enjoys being around other children. She is curious about her surroundings and enjoys going new places.

Music has seemed to play a big part in progress in her development. She "dances" by rocking back and forth. Her favorite performer is Alison Krauss, a bluegrass singer and fiddle player. We recently took Alison to one Krauss' concerts, and Alison got to meet her favorite singer. It was so much fun to see how elated Alison was during this concert --she "danced" so hard that her father, Danny, had to hold her wheelchair down!

Having disabilities has not kept Alison from activities that she enjoys or from being part of our community. Alison is loved by many in our community. She enjoys life to her fullest. There have been times when I have had to "fight" some injustices concerning Alison, but I have also had to do that for Dustin.

Dustin has been a wonderful, loving brother to Alison. Sure, sometimes he gets aggravated with Alison's inability to do certain things. There also are times when he is jealous of Alison, but he soon realizes that he can do things Alison doesn't get to do, and that jealously goes away quickly.

I realize that there are things that Alison may never do, and although I have learned not to expect her to do these things, I still hope that someday she will be able to.

It is my hope that she'll be able to speak someday, if only a few words. Many of my dreams involve Alison speaking. Recently I had a dream that Alison and I were shopping. Alison mumbled these few words at the sales clerk: "Is this outfit on sale?" I had to laugh and say, "She's her mother's daughter!"

Overall, the biggest challenges that I have faced is dealing with the bureaucracy of government assistance that helps us with Alison's extraordinary needs. It can be very frustrating at times, but I have learned to be vocal. I have learned to speak up about Alison's needs -- and the needs of other children with disabilities -- to our elected officials.

With Alison at my side, I have had the opportunity to tell Alison's story to our elected officials in Washington and in our state capital and through the media. I might not always get the desired result; but if I don't speak up and complain, how will they understand her needs?

When speaking up for children with disabilities, I often think of the first time I saw Alison. At that moment, my thought was that maybe she would be a cheerleader one day. Alison has indeed become a cheerleader, but not for a football team; she has become a cheerleader for children with disabilities!

I have received a great deal of satisfaction from being Alison's mother. She has taught me a lot, not only about the needs of children with disabilities, but also about myself. She has given me strength I never knew I had. She has given me a great sense of pride. I am very proud that she is my daughter and that I am her mother.

Alison, and other children with disabilities, should be viewed as children first. Although she has some unique needs, her basic needs are the same as any child -- having a family who loves her and nurtures her, being part of our community, receiving an education and having friends. She will always need a variety of supports and services, but none of us can live without assistance from others.

My dream for Alison is that she will reach her fullest potential. If she accomplishes that, she will have done far more with her life than most of the rest of us.

Note: This story was written in 1998.

From the book

You Will Dream New Dreams by Stanley D. Klein, Ph.D., and Kim Schive.

Purchase it from Amazon