Each of us has a story – a trial, a triumph, a struggle that defines us. Every once in a while there are moments in time that seem to shift the continuum and start a new chapter in our life. The reason why I get up each morning and collapse exhausted at the end of the day. I hope you find inspiration, strength, or just an understanding in My Story:
Our journey began a few years ago when my daughter, Kyah, was diagnosed on the autism spectrum. When you have a diagnosis of any kind, whether it’s a medical issue or a disability like Autism, as a parent or family member you go into survival mode. You cope and do what you need to do for yourself or your family member to improve the quality of life and try to make things better for that person. While “survival mode” doesn’t always allow you to feel, sometimes the reality of the diagnosis hits you like a ton of bricks. You realize that while you are coping and dealing and trying to make those improvements in life, you don’t necessarily take time to think about how hard the journey has been… Because if you did, you might just fall apart; you might not make it through the day.
And then there is a level of acceptance that comes. You accept that this diagnosis is a part of your life forever. It’s now a part of your family’s story.
My way of coping with Kyah’s diagnosis was to dive in head first. Initially, my intentions were totally and completely selfish. I wanted to “fix” her, make her life the best that it could be. That meant educating myself about Autism, how it would affect her at school and at home and what we could do to improve her quality of life and her education. The more I learned, the more I started getting involved with local disability organizations and found myself helping other parents who were embarking on that same journey that I had already traveled. I joined my local Parent Advisory Council (PAC), and as time marched on, I realized there were so many flaws in the special education system. To compound the issue, there were so many kids whose parents didn’t have the time or the resources to understand where changes were needed and where improvements could be made. I am now Vice President of the PAC and serving on several committees in my district. I also joined Missouri’s Parent and Training Information Center (PTI) as a Parent Mentor and started volunteering, helping other families prepare for their child’s education who were in similar situations. Now I am employed with the PTI and work daily to give hope to hundreds of families per year. I have also started Project Hope, a charitable calendar to benefit Missouri Families for Effective Autism Treatment (MO-FEAT), with the goal of showcasing the beauty and diversity of the autism community… inspiring all of us to hope!
At one point during my own journey, I realized that I had been helping so many other families, I had failed to see the creativity in my daughter that probably would not be there without her diagnosis. I realized that having a disability isn’t always a measure of what she can’t do, but perhaps is more accurately a measure of her unique abilities.
I have recently started teaching my daughter to shoot my ancient Nikon D50… photography is not only my passion, but it has also become an invaluable connection for me and my daughter. I have never attended any of the many workshops out there because typically they are not in the budget… but I want to learn to work smarter (not harder!), so I can continue to inspire my daughter’s creativity with a camera while making time for the autism community which has provided me with the single most important journey of my lifetime.
