As I sat down to write this, I didn’t realize what I was going to re-discover. As I stared at the computer to figure out what to share about my unique experience of parenting a child with special needs I was struggling with how to begin. In the eight years of my experience, there are countless times that I can recall people telling me that I should write a book; I certainly was not short on material, but it just was not coming together! I wanted it to be different, fresh, enlightening, and humorous. In the midst of my aspirations, it dawned on me that I had documented moments of my unique journey. These moments were filed in a folder in the memory of my computer. I had to look a little since the main folder was overflowing with many other folders with titles like Med Lists, Schedules, Research, Lab Results; to name only a few. Then I found it, I quickly opened it to rediscover the feelings in the words that I once had typed. The emotions came back to me and I was surprised by what I read. I decided to share one of the entries here:
The Toy Analogy
“We all have bad days we don’t think will ever end. At the end of that day we get the chance to rest and wake up to a new day that may be better. If not, we are challenged with the thought of how to make it more bearable. Caring for a child with special needs has its own challenges and it all comes down to looking at things differently. Please allow me to share the toy analogy: It’s almost like having a toy that doesn’t work. Most people would toss a broken toy in the garbage after checking the batteries a few times and simply give up. Some people would play with it even though it didn’t make the noises or light up and simply compromise. While others would take it apart with detail, study it and try to figure out how to rewire it to make it work in its own unique way.”
This last approach brings a smile to my face as I open the file folder on my computer entitled, “Research”. The journey of any parent who has just learned that his/her child has special needs begins with research! We still have the Excel file that has many columns and rows filled in as we would look at symptoms and try to align them with a diagnosis. After all, if we could get a diagnosis we would be able to have a road map as to what the future would hold, right? Besides, “giving up” and “compromise” were not in our vocabulary when it came to our daughter. In that moment of reading back through my experiences it was clear that the cloudiness that I found myself in at that time opened up to a beautiful bright sky later on, as long as we were willing to work at putting the pieces together to make it work.
Shelly is the mother of Kayla, a vibrant little girl who made a lasting impression on everyone in her life. At birth, Kayla was diagnosed with hypotonia. At 4 months of age she was diagnosed with Failure to Thrive and, at 6 months, Cerebral Palsy. Kayla began receiving physical, occupational and speech therapy soon after. At age 1 she started having seizures that were never 100% controlled.
Shelly and her family worked hard with medical professionals to teach Kayla to communicate. She had play dates, went to school and was involved in the Girl Scouts. Kayla’s quality of life and inclusion was always Shelly’s main focus.
Kayla passed away in 2012, but her beautiful memory lives on in the hearts of all who’ve known her or heard her story. In honor of Kayla, Shelly is now working to build an all inclusive playground in Franklin, WI that will encourage kids of all abilities to play together. Learn more at: www.kaylaskrew.org