April is Autism Awareness Month. We are in day 8 of the month and I have received autism related materials in the mail everyday. I am lucky to receive anything about autism once a month normally. My email has been bombarded by invites to events in our area about autism, clips people have found on TV about autism, and emails pleading with me to give to autism related charities.
The television stations seem to think that we only need to be educated about autism one month a year. The occasional segment on daytime TV or the nightly news is enough for the stations to produce.
There are campaigns to raise awareness like lighting our buildings blue, dressing in blue, or letter writing to our politicians. Of course, I choose to participate in these campaigns. But in the back of my mind, I wonder, "Is this doing anything?" "Will this make any difference at all?"
I tend to think that any awareness is good awareness. I feel the more people know about this devastating, horrible condition the better. But I have to admit, the stories on TV, the emails, and the mailed materials can be so depressing when you have a child with autism.
The general public sees these stories or reads up on autism and they maybe think how lucky they are. How lucky to have "normal" children. How lucky that they do not have to live everyday with someone with autism. They hug their children a little tighter or maybe feel a little more compassion for those of us with autistic children.
We parents, the ones who haven't forgotten about autism since the day our children were diagnosed, are happy to have a month devoted to autism but this month does bring up alot of our bad memories of the past and our fears for our futures.
Our past memories are full of the pain from seeing our children lose skills while their peers thrive. Our memories are full of the sadness and despair that we felt at diagnosis. These memories include the anger at the autism and the hatred towards those who choose not to take the time to understand the condition. We remember how deeply devastated we were during this time and wonder how we made it through this period of our life.
Autism awareness reminds us of our fears. When we see a video clip on autism, we relate to the parents, we see our child with autism in the children in the videos. It shows us how severe autism can be. The statistics about autism scare us. The unknowns about autism scare us even more. It reminds us that when we look at our child with autism, we don't see the child we thought we would see. We see our fears for that child. We see a human being that will always need substantial support from us for the rest of our lives. Then what? We wonder what will happen to this child when we are no longer around. We wonder what her life is going to be like as a child, as a teenager, as an adult?
I am very proud that there is attention being drawn to my daughter's disability. I hope the attention leads to progress in the diagnosis and treatment of autism. Whether I am heartbroken over her diagnosis or content with the knowledge that this is what we are facing (I go back and forth on this many times throughout each day), I will always be an advocate for her and the millions of other children and adults who do not have a voice to be heard.
For the past two years, I have fought for your health, your therapies, your education. For the past two years, I have tried to learn as much as I possibly could about your condition. For the past two years, I have not had one day where I did not think and worry about your condition. For the past two years, I have been your mommy, your caretaker, your advocate. For the past two years, you have been my daughter. We have been through a lot in these two years since diagnosis. We have both grown so much. Autism will not take our relationship from us. Abigail, you are my daughter. I am your mother...forever.
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