April is Autism Awareness Month and today is World Autism Awareness Day. It is our first Autism Awareness Month since diagnosis and we are trying to do our part in raising awareness and most importantly acceptance. We are doing the Walk Now for Autism walk on the 20th, we wore blue today, I even made blue pancakes for a special treat for the kids.
Although it is our family's first journey through Autism Awareness Month, autism is not a new part of my life. As far back as I can remember it has affected my family as my younger brother is also autistic. He is on the more severe end of the spectrum so although I was familiar there was and is still so much for me to learn. I am slightly embarrassed to admit that I didn't even know it was a spectrum until about 3 years ago. I never knew there were other disorders that fell under the umbrella, all I knew was autism. I also was one who believed it was being over diagnosed even shortly after recieving a diagnosis for our daughter. It wasn't until I saw the hoops that must be gone through in order to get an evaluation and to be diagnosed that in my opinion make it very difficult to get a diagnosis for those who even need it. All the talk about over diagnosis is actually doing harm to the families who are seeking help and very important early intervention services. I am guilty of seeing someone with autism and thinking that it was a misdiagnosis because they didn't fit the stereotype that most people imagine when they picture what autism looks like. The truth is there is no "autism look", there are people with autism who make eye contact, socilize, and even get married and have children of their own. It embarrasses me to afmit that I was so ignorant but I feel I should share my stupidity because if a sibling of a person with autism thought these things, imagine what others who have never even encountered it must think!
Our daughter was diagnosed this previous November and it has truly been a blessing in my eyes. Prior to diagnoses we knew she had a speech delay and thought a lot of the behavioral problems were related to her lack of communication but as time went on things would get worse, and then so much better that we cancelled two evaluations before finally sucking it up and going. We had a lot of struggles in the parenting department because we were not sure if her behavior was her being "spoiled" or if there was something more. By the time we went for an evaluation we expected that she would be diagnosed most likely autism but we thought it could have been sensory processing disorder or another diagnosis all together. Still when the words came out of the doctor's mouth it hit me like a ton of bricks, I thought I was prepared but you are never truly prepared to hear something like that. I managed to hold back my tears until the car ride home and haven't cried again about it since. After it sunk in and we changed some of our parenting apporaches life became a lot easier and the meltdowns have reduced dramaticly. I read once that it is like being given a Ford manual for your Ferrari and that is so true. Once we let go of our expectations of how things should be or what other kids are doing we were able to relax and enjoy our daughter better because we learned to choose our battles and how to avoid certain situations. It has been a learning experience and there is still so much to learn. My outlook is that parenting is what you make of it and while it would be easy to be "poor me" it is more benifical to everyone to be accepting and to embrase her differences.
I talk about her diagnosis because I never want her to feel that it is something to be ashamed of or that it is something she should hide. It is a part of who she is and we think she is perfect. I talk about it because it helps me cope and stay positive. I talk about it because I want to make the world a better place to live in for my children. I talk about it because it is the only way things will change... I refuse to stick my head in the sand and wait for the world to change. I talk about it because so many other blogs and moms have helpped me and I hope that my experiences may help someone who feels alone as I do at times.
I have and I'm sure I will continue to recieve criticism for being so open about it. I've even been accused of bragging about it which comical to me because other than our parents and siblings we didn't say anything about it until Christmas. Even as I started to talk about it I recieved messages saying that they had no idea. I was scared to talk about it, but I am no longer afraid. If someone doesn't like what I have to say they don't have to listen. Advocating and working towards acceptance is important to me.
There is nothing wrong about talking about your child's special needs. I have seen so many other moms get attacked for it and it makes me mad. How is it any different than any other mom talking and posting about their children? It is a huge part of our life it affects every decision from where we go, what we do, and everything in between. There are times e
we have canceled plan just to avoid a meltdown. We don't always get to do the things we want... but the imoortant thing is that the kids are happy.
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