My Beautiful Alison

Written in 1998

Alison is a very 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  a rare seizure disorder as a newborn called infantile spasms.  

Although doctors were very grim about Alison’s prognosis and said she would not lead a normal life, she has lead a life that is normal “for her”.   Our family  has made adjustments in many areas of our lives, but we are all living “normal” lives.   Realizing this helped me to put our lives in perspective.    I think this is the single most important thing that has helped me since Alison’s birth.

Although professionals, such as doctors, therapists, teachers, etc., 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 are taken into account regarding anything relating to Alison.

At times, I do get overwhelmed with the amount of care that her disabilities cause, but realize this is a result of her disabilities, not her.   She requires maximum assistance with feeding, bathing, dressing and is incontinent.   Although non‑verbal, she has learned to use some informal gestures to communicate some with us (limitations in her fine motor skills prevent her from using sign language ‑‑ she is also uninterested in using a communication device).  She has mental disabilities (she is at about the toddler level)  which requires her to need more supervision than her nine (9) year old brother, Dustin, does.  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 every new accomplishment that Alison has.

Alison receives special education through our public school system at our neighborhood school, which is two (2) blocks from home.  Dustin also attends the same school.  Alison 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 skate while pushing her in herwheelchair.  Shopping is a big favorite of hers, like most girls.  She enjoys being around other children.  She is curious about her surroundings and going new places.

Music has seemed to play a big part in progress in her development.  Her cognitive awareness has increased since listening to Alison Krauss, a bluegrass singer and fiddle player.  She has also learned to “dance” by rocking back and forth.  We recently took Alison to one of her concerts, and Alison got to meet her favorite singer.  We had so much joy to see how elated Alison was during this concert.  Alison also “danced” so hard during the concert, 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 and admired 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 there have been times when  I have also had to do that for Dustin.  

Dustin has been a wonderful, loving brother to Alison.  There are times when Dustin gets aggravated with Alison’s inability to do certain things.  There are also times when he is jealous of Alison.  He soon realizes that there are things that he gets to do that 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.  This helps me to keep things in perspective.  No matter what, though, I love her for who she is.

The one thing that I hope she does one day is be able to speak, even if it is only a few words.  Many of my dreams at night involves 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 beauracy of government assistance that helps us with Alison’s extraordinary needs concerning her disabilities.  It can be very frustrating at times, but I have learned to be vocal about this.  I have learned to speak up about Alison’s (and other children with disabilities) needs to our elected officials and administration, even if I don’t get the desired result.  If I don’t speak up, how will they know what she needs and how can I complain if they don’t understand her needs?  As a result of my speaking up I, with Alison at my side, have had the opportunity to tell Alison’s story to our elected officials in Washington and in our state capital and through the media.  When speaking up for children with disabilities, I often think of when I first saw Alison and thinking of her perhaps being 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.  Alison has taught me a lot, not only about the needs of children with disabilities, but also about myself.  She has given me strength that I never knew I had.  She has given me a great sense of pride.  I am very proud to have her as my daughter and that I am her mother.

Alison, and other children with disabilities, should be viewed as a child first, as having

disabilities second.  Most importantly, she should never be pitied or felt sorry for because she has disabilities.  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 is interdependent, needing a variety of supports and services, something that she will always need, as do all of us.  None of us can live without assistance from others.

Looking forward, my expectation for Alison is for her to reach her fullest potential in life.  When she accomplishes that, she will have done far more with her life than any of us could have ever done.

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