Basically you should wear the color blue tomorrow to show your support and awareness of those coping with this diagnosis and to shine a light on this issue.
Autism affects 110 children, 70 of those are boys and one is mine.
The symptoms of Autism are like snowflakes...no two children with it will be the same or act the same. While the challenges and struggles they face are similar, they are unique and special people coping with a difficult disorder. I use the term coping for a reason. They are all learning ways to cope with what this disorder does and how it affects them. They will cope for life. There is no known cause and no known cure. They are is no therapy or protocol that is given to you with the diagnosis. It is simply trying to figure what works for your child, your family and your situation. And it is a constant challenge to figure out what works as the child gets older and changes.
As a mom of child with Autism I have felt a million different emotions since he was diagnosed. Emotions that to some seem irrational or even useless. I have sat up countless nights and worried about a million different scenarios. I am scared to death of so much and trying my hardest not to show him.
Not one day goes by in our home where Autism doesn't affect us. It lives with us. It isn't something that will go away (even though some people would love to believe that it will). It isn't something you can ignore. It isn't something that gets easier with time. It is simply part of our life...a very big part in fact. So much of our life revolves around it and most people have no idea. Zach's schedule for one is constantly being tweaked. Therapy...speech, occupational, ABA. He is involved in swimming and other sports to help him connect with peers and work on his motor skills. We plan most of our family activities around the things that he will enjoy or handle well. It is never lost on us to think of his reactions and needs in situations.
Autism has become just a very basic part of my life. Funny how that happened. 3 years ago I was pregnant with Erin and scared to death about things I was seeing in Zachary. I had my concerns for sure, but I had no idea what life would like 3 years later.
We have made amazing progress...HE has made amazing progress. But we have a lot of work left to do.
People meet him and think he is a normal, but quirky 5 year old. Most people don't see his strange behaviors or obsessions on topics at first meeting. If they do, they usually think very little of it. But it is living with him daily and really getting to know him that you realize that they are more than quirks. There are simply things he can't control. Things he doesn't understand. He is learning so many things that most of us just take for granted and know innately. And he is getting bigger some things won't be as excusable. That is where I start to worry more.
Over the last few weeks I have started to realize that while we have made huge improvements over the past 3 years, there are is a lot ahead for all of us. As he gets older one of my biggest fears is about telling him. How do you tell your child they have Autism. I am less worried about telling Erin than I am to tell Zach. The time will come when he will want to know why he is different...his friends are already noticing things and soon they will notice more and ask him.
It terrifies me, but I know it will be me job to not show him that and let him know he is okay just as he is.
Ironically, he is. We love him and Erin equally. He for who he is and her for who she is. I can't sit here and lie. It is hard not to see Erin growing up and doing things that he just learned to do or doesn't even do. It is hard not to compare them. It is hard not to be sad when I see and hear her around the house and out at her school. But, it is also beautiful and amazing that I am lucky enough to see that with her. She is amazing...just as he is. I remind myself in moments that are challenging, that he can't help so much of the things that he does. That it is difficult for him too. And most of all, if he is happy, let him be happy. What is normal for me, isn't for him and I have to let that go. I have to!!!
That is the single hardest challenge for me as a mom of a child with Autism. I worry so much about the things in life that will affect him emotionally...will he have friends, a best friend, a girlfriend, a wife, children...will he want this? I need to step back and let him smile and be happy in whatever way that it happens.
Tomorrow I will blog some more on this topic...I simply can't let the day pass without acknowledging the magnitude of its weight on my life.
So tomorrow when you get up, wear blue in honor of Zachary and all the other children coping with Autism. Be aware of it and share that awareness. Ignorance is the hardest part of this for me...people have no idea what Autism is and therefor no idea how to deal with it. Being aware is simple...ask questions and look for answers. Be kind and compassionate. Look at a child like Zachary and know that is amazing and living with Autism all at once.
1 comment:
You are a great mom, Susan. I have a blue sweater laid out for this afternoon/evening. Miss you.
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