Today is Autism Awareness Day, something we are aware of every day, not just today. I don’t think I can express my rollercoaster of feelings regarding autism better than I did back in December on Facebook. So, in honor of Autism Awareness Day, I will share that post again while promising Emma I will also always do absolutely everything I can to make sure she continues to thrive. Emma is so smart and determined and the most important job I will ever have is to make sure she can be / do everything she wants to in life.
Autism – One year ago today (now 1 year and 4 months ago) was when we received the official diagnosis, one that I had already known in my heart for several months prior.
I still remember the months before we received the diagnosis .. staying up every night reading everything I could about autism. I knew that not talking or talking late could indicate autism but had no idea about all of the other components. At first I thought well THAT is scary but never for one second thought Emma could actually have autism. Then the more I read, I knew there was no way Emma could NOT have autism. There were many people that told me to stay off the Internet and stop worrying. I had to continue to do research though because the biggest thing I took away from everything I read was that the earlier you get children help, the better. There was no way I could sit back and ignore what was right in front of my face. One person asked me does Emma laugh or smile? .. if so, it is not autism – oh, if only it were that simple!!
Over the last year I have felt every emotion imaginable when it comes to autism – worried, upset, devastated, fear, consumed with learning everything I could about autism, trying to find direction to get Emma lined up with all the therapy she needed, acceptance, and determination to make it my priority to make sure Emma has everything she needs to thrive. And thrive she has. One of the most common things people notice about Emma is how smart she is. She may not be able to talk yet, but she understands EVERYTHING.
When Emma was first diagnosed she had essentially no expressive language at all and very, very little receptive language. She wouldn’t let us hold her hands, she never once waved to us, didn’t play with toys – just threw them on the floor, never pointed to anything, etc.
Emma now knows her colors, over 40 different signs in sign language, understands pretty much everything we say to her, can do any puzzle you put in front of her, can recognize just about any animal you can think of, loves books, will now wave hi / bye to Pat and I every day, will come up to us and just hug us.
I am not going to lie, autism sucks. I have heard many parents of autistic kids say they wouldn’t want a cure to autism because it is part of what makes their child unique. While I am no longer as terrified of autism as I once was, you best believe if there was a cure, I would be the first one in line for Emma. No parent wants to see their child faced with any extra challenges. There are so many unknowns with autism – so many autistic kids never speak, the rate of epilepsy is extremely high, etc. To even do something as simple as make an appointment can be a challenge when Emma is in therapy 6 days / a week for most of the day. However autism has also taught us to appreciate every single milestone that Emma makes – even little things that I think many parents may take for granted.
A few days after Emma was diagnosed, I remember being in a coworker’s office and she had asked how Emma was. I broke down and started crying and told her that Emma had autism. Her response was so?, so what? She said Emma is still the same beautiful girl that everyone loves and autism doesn’t change that. She was absolutely right. Emma is an extremely beautiful, brave, sassy, fun, smart, happy, lovable, and strong willed girl, who also happens to be autistic.
What an amazing, beautiful, from-the-heart post. Thank you for sharing! Emma sounds amazing, and I know that it’s because she has such an incredible, loving mom such as yourself. You’re a rockstar!
Thank you so much!