Today, for the start of Autism Awareness Month, I won’t be sharing our story.
Today, I’ll be turning the page over to some amazing friends of mine. They aren’t bloggers or activists in the autism community. They are moms.
Superhero Moms. Moms who wear their capes twenty-four hours a day, seven days a week. They are people I know in my real everyday “see you at the supermarket” life.
I asked them to share with me some words of wisdom. “Can you tell me in a few sentences how your child’s diagnosis has changed you as a parent? The good and/or the bad.”
Because if you want true awareness and understanding and acceptance for those of us living with autism, you have to listen to everyone. Truly listen.
J. (mom of two boys, one with autism) : for the worst…. it made me re-live those insecurities of high school and made me worry that my kid would be the one that other kids made fun of. But then it made me “grow up” and re-define “normal” and try to make sure that I think from HIS perspective not mine…getting him into the best environment for him and teaching myself how to verbally and non-verbally communicate the way that works best for him. I honestly struggle with my temper and my patience daily but my son and my friends that I have found through this experience are my rock that gives me strength everyday.
For the best…. I have a new found strength to share my story with other moms I meet in case it can help them help their kids. Autism isn’t easily defined like I used to think and there are so many families that may have that “feeling” that their kids need “something” but they just don’t know what or where to turn – I say trust your gut. All the skills that I have learned to help my autistic son are just as affective on my “typical” son and I think it has made me a better communicator.
A. (mom of two boys, one with autism) : To say that our son’s diagnosis was a bit of a shock to us would be an understatement. When his doctor started talking about looking into ABA, I thought she was talking about the American Bar Association at first, because that was all I had as a reference point. Life sure has changed in almost 3 years. I think I look at life with a completely different set of lenses now that I’ve started this journey with him. He has taught me to slow down, and not to rush from one thing to the next just to get through it. And, that I don’t have to go it alone – it’s okay to lean on others for help. I think I have a better relationship with my husband and family because of my son, and I know for a fact I have girlfriends I wouldn’t have otherwise! He has taught me that all accomplishments in life should be celebrated, regardless of size. He has taught me empathy – it takes all kinds to make the world go round, and everybody is put here for a reason. Everybody. And, he has taught me to be a better parent to my older son , and show him what it truly means to be empathetic, understanding, and patient.
T. (mom of one boy with autism) : I would like to say that Autism has made me stronger. Or more patient. Or able to appreciate the little things in life. The truth is, Autism has created a dark cloud over my family that follows us around day in and day out. No matter what, it is there as a constant reminder of our son’s autism, and the worry never goes away. The silver lining for me is that I have met an amazing group of friends who are always there to lend their support and brighten my day. But what breaks my heart every day is wondering where the sliver lining is for my son, who must live with autism the rest of his life. My hope is that someday he finds it.
J. (mom of a girl and a boy, daughter has autism) : An autism diagnosis to me was a period of many different feelings. In a somewhat abbreviated version I suppose it started with: Tears, and a sinking stomach. Questions of “why” and “how” ? Nights spent on the internet reading and researching. An eventual calming and acceptance of a new life challenge and remembering, things could be a lot worse. Then an overwhelming feeling of appreciation – for the help we found was available to help overcome these obstacles that lead to this diagnosis in the first place. Then over time, less focus on that ‘word’ and more focus on the childhood and memories we want to give them, and watch unfold before us and they grow into their own little person. To present day…..very little daily focus on that autism diagnosis 2 years ago… to just immersing ourselves in the day to day lives we have as a family, and trying to do the best we know how to raise our children the right way while trying to keep meeting and hopefully beating any more challenges that may lie ahead of us.
A. (mom of a girl and a boy, son has autism) When my son was first diagnosed in 2007 we were shocked, just by the reality of it. We knew something was different, but the reality of it knocked the wind out of us. My husband, out of a sense of protecting our son and our family, did not speak of it to anyone outside of the family. At work he kept his usual professional demeanor but inside he was concerned, worried about our son and what kind of life he would have, about our marriage because of the high divorce rate in parents of autistic children, and about our daughter, because of the focus our son would need. It was easier for me not to speak of it because I work from home, with a flexible job. For my husband, while this did not affect his everyday job, it affected his military standing.
When my husband was doing his outprocessing he told them he had an autistic son. His supervisors were shocked - he knew by their reaction and their words, that if had they known he would have been given a heads up that he forgot to do this or that, and would be given extra time. That lesson showed both my husband and I that we needed to be open about our son, and not try and protect him because it could hurt us as a family. Since then, we have been open and honest about our son, and his being different.
My husband is now in the Army Reserves, and during a recent ceremony our son had anxiety about being there with all the people and had frequent verbal outbursts before my daughter graciously took him out in the hall to look out the window at cars. For once, my husband and I were not embarrassed because everyone in that room knew about our son and his uniqueness. Having a son like ours has taught us about being open and honest about who we are as a family, and as individuals.
and finally, my friend Hope*. Remember Hope? She was the one who was there for me from the beginning. The one who guided me and listened to me and showed me the path to understanding and acceptance.
Hope* (mom of four, one son with autism) : As a parent, I am more understanding and patient than I have ever been. Not just of my own child, but of others around me. Before the diagnosis, I would ask myself, “what am I doing wrong here? Nothing is working.” After the diagnosis, I found the tools I needed to deal with my child, which in turn, made things much better for my whole family. I was doing a lot less yelling. Everyone benefited from that. I used to feel a lot of guilt around the amount of time and attention my child was getting from me. I have 3 other children. I finally decided to let that go. Yes, he needs a little more than the others at times, but I think they know that. We are all doing the best we can. As a family, we have never really known any different than the way things are now. Yes, we got a diagnosis, but things haven’t changed too much. We try to be supportive of each other as best we can. I find that my other children are a huge support for their brother. They understand him and often go with the flow with him. I don’t think I would change a thing about any of them or how our family is as a whole.
Awareness can and should happen every day. But today, we’ll be just a little more aware.
Our house will be lit up with blue lights. Today, my boys and I will be wearing blue.
We wear blue for the 1 in 110 children affected by autism.
We wear blue for the 1 in 88 military children living with autism.
We wear blue for the hundreds of children who will be diagnosed this month.
We wear blue for my friends’ children.
We wear blue for my son.
And that is our story.
“All of these lines across my face
Tell you the story of who I am
So many stories of where I’ve been
And how I got to where I am
But these stories don’t mean anything
When you’ve got no one to tell them to
It’s true…I was made for you…
You see the smile that’s on my mouth
It’s hiding the words that don’t come out
And all of my friends who think that I’m blessed
They don’t know my head is a mess
No, they don’t know who I really am
And they don’t know what I’ve been through like you do
And I was made for you…” – The Story by Brandi Carlile