Transitions

One day, many years ago, I was having a conversation with a woman who had an adult son with autism. Abigail was newly diagnosed and I was still trying to process this diagnosis. The woman had told me that major life transitions are hard for those with autism but also for their parents. She went on to say that when these kids go into kindergarten, middle school, high school, when other kids are having sleepovers and excelling at EOG tests, our kids are not. When their peers are going to prom, applying to colleges, and getting their driver's licenses, our kids are not. She said all of these transitions will remind us as parents that our kids are not going to be doing these things the way their typical peers are. It reminds us as parents how delayed our children's development really is and brings us back to the way we felt when our child was initially diagnosed. Our family is getting ready for major transitions. Abigail will be starting kindergarten in the fall. She will be leaving the familiar faces and routines of prekindergarten behind and starting anew in her autistic, self-contained kindergarten classroom. Not exactly what I had imagined for her when she was a baby. I think I imagined the day she starts kindergarten as her being excited to see her new school, where she would make lifelong friends and excel at academics. She would stand outside the school in her pretty new dress with her big girl bookbag on her back and I would take a thousand pictures of the day that she really became her own person. The reality of this day in August will be my husband and I holding her hands tight and not letting go, in fear that she will run away from us and not come back. We will walk her to her new classroom with new teachers. The children will all have autism, most nonverbal. Very few will be potty trained and friendships between these kids do not happen overnight. Friendships, if they happen, will take years. She will not come home from school with tons of stories about her days or telling us all about the friends she has made. We will continue to work on skills that most typical kids have mastered by their first birthday. She will make slow progress but for us that will be like a typical child making the honor roll. It is sad that we will not have the typical moments with Abigail that all other parents have. I would be lying if I said it didn't hurt or that I am not just a little jealous of those who have these moments. It will be hard in August but we will move on because being a parent of a child with severe autism does not give you the time to spend wishing things were different when they will always be different and you can't change that. Next week is the last week of pre-k. Friday afternoon, our life will be different. We will have a kindergardner on our hands. Maybe not the one we thought we would have but a girl who is more than ready for her own special kindergarten class come August.

Autism Awareness Month

April is Autism Awareness Month. April 2nd is National Autism Awareness Day. Every day of the year is Autism Awareness Day in my household. I am the quite frazzled, sleep-deprived mom of two daughters with autism. Every year as April approaches, I have this weird feeling take over my body. It is a feeling of sadness for the two girls who have autism in my family and for the countless other families who find themselves in the same situation I am in. I also feel hope and faith that this April will bring us more information on autism and make those who may not be that aware of the condition, more aware. I started April off with anxiety as I knew that the CDC would be soon releasing the new autism prevalance statistics. I knew deep down that the statistics would show that more and more kids are being diagnosed while still hoping this would not be so. The day the statistics were announced, I felt my heart sink. One in 88 kids are now diagnosed with autism. The year Abigail was born, the rates were one in 188. What has happened? Why is this not looked upon as an epidemic? Why are teachers and specialists being downsized at our schools and early intervention cut when the rates only continue to go up? I am not in a position to understand any of the above questions. I am just a simple mom of two wonderful, talented daughters who will need substantial help both in school and at home throughout their lives. I am a parent that wants the schools and administration to understand that a diagnosis of autism does not mean that you give up on the child. I am a woman whose heart bleeds for those who deal with this every day of their lives. Almost four years ago, my life took a differnt turn when my oldest was diagnosed with autism. I am not the carefree, trusting person I once was. I am a person who struggles every day seeing the struggles my children go through every day. I am a person who wants the best for my children, wants them to succeed but knows their successes seem minor compared to other parents typical children. I am a proud mom of these two girls. If given the choice all those years ago, I would not have wanted to have autistic children. Does anyone really? But these girls have changed my life, gave me a voice, and forever made me a much better person. Autism awareness month is almost over but I continue the fight all year long. I am saddened that this year there seems to be less and less media coverage of this condition and more and more families affected. I continue to hope that time will grant us more answers and awareness of autism. I made a pledge to myself many years ago that my life will be about fighting for better services and making the public more aware of my daughter's condition. I continue this pledge every day of my life and take on as many opportunities as I can to make the lives of all kids with autism substantially better. Join the fight for autism. Learn the facts. Get involved.