The toughest part of writing this was to know where to start and when to finish. This collection of our memories is a result of our family’s journey with autism. I hope this glimpse into our lives helps other families and touches their lives in some positive way. We have not arrived at the final destination at this point. But it feels like we are always at it’s beginning…. We are not out of the woods yet. But we can see the light guiding us through the darkness.
It's hard to describe the feeling when your life all of a sudden takes a complete stop. Some force picks you up and suspends you over the black hole and you dingle and dangle helplessly until you are dropped on the "other side". The other side isn’t anything like what you have planned or hoped for but a totally unfamiliar dark side. There you walk aimlessly searching for light, hoping that another force will take you back and everything will be as it was before. After a while, you realize that "no-one is coming to get you out of this." You have to start searching for a light and a new path forward to take you on a journey without a destination. And finally, you realize that it's not the destination that's important. It's the journey itself. Every struggle and stumble is rewarding, making the journey worthwhile. At some point of your travel, you sit back and think about the plans you had before and how they never materialized, and you say to yourself how grateful you are that fate selected you to take on this rewarding journey.
When Kat was first diagnosed with autism, we thought our lives were shattered. We saw autism as a tragedy that took our child away from us. We thought that our other daughter would be scarred as well by growing up with a disabled person in our household. We knew nothing about autism when she was diagnosed and were told to take her home and keep her safe. We were told that nothing could be done about her disability and that she will probably stay this way for the rest of her life.
The neurologist that diagnosed her at that time did not know our determination. He did not know Kat, how hard she can work, how much she can endure. How could he know? Twenty years ago there was very little information available about autism. Very few services were available for children that were diagnosed. Most of the kids as they grew up were institutionalized, so school districts had very little experience dealing with autism.
We had to become experts in autism, we had to learn how to be an advocate for our daughter. But most important, we had to learn how to teach her everything. By participating in her learning process, we are able to continue to teach her now and will have to continue for many years from now. But as we teach her daily, we are constantly learning from her. She taught us how to enjoy the simple things in life. She redefined success for us. I am sure that we were as proud of her when she accomplished a simple task as other parents are when their children win a gold medal in the olympics.
Kat is a happy 23 year old right now. She attends a comunity college with her aide. However, she is not able to perform classwork required at this point because she has many problems with communication and understanding language. But she is learning new things every day and as long as she is learning, we will continue teaching her. Every day, she is becoming more aware and independent. She taught us that everything we knew about autism was wrong. When she was little, we saw a child withdrawn in her little impermiable glass bowl that wanted to be left alone. Now we see a beautiful young woman who loves life, craves being with others, wants to try everything, go everywhere, and see everything.
Danuta - Kat's Mom, December 1, 2006