Monday, April 2, 2018

April 2, 2018 : Autism World Awareness Day

Today, April 2nd, is World Autism Awareness Day.
April is Autism Awareness Month.
I love someone with autism. Sammy. Our Super Sammy. Sammy was diagnosed with autism before his 3rd birthday (picture from around diagnosis time in 2014). At the time we wanted answers. It was not about a label or the diagnosis, but the path necessary to help guide us as parents to understand and better support our son. My goal for Sammy’s life has always been the same, autism, cancer, does not matter. My goal never changed. It is the same goal we have for Logan, even with his own life challenges too. To prepare our child for the world, to encourage him to be an independent, confident individual who knows he can strive for the stars. To know he is only limited by the barriers he puts in front of himself. He can achieve ANYTHING. It may be harder, he may struggle, and it may take lots of failing. But he is capable. And he CAN do and be anything.
Autism. I cried for hours when I first learned this was possible for my sweet 2 year old child. I mourned the life I thought I wanted for my son. Thought I wanted as a parent. While autism changed our lives, it was nothing we could not handle. And made our lives better, different, interesting. Having an answer, a diagnosis, helped us know how to best support our child. And that is all I wanted. How can I help my child THRIVE. For Sammy to THRIVE.
So we made a plan. We got support. We did therapy. I learned therapy really was for us. How to help engage him, how to help him learn. How to help him process the environment around us. How to handle change. How to conquer things that were tough. It was teaching us as parents. And him guiding the way. Our expectations never changed for Sammy. We want our children to be able to live in our world. So we expect them to understand our society and the way it works. We just got to help him manipulate society so it worked for him. Giving him tools to conquer the world.
Sammy started with over 40 hours of therapy a week. Majority being ABA therapy. In home therapy. Working on behaviors. Changing negative behaviors into positive ones. How to help him through the tough situations of his day, successfully. We continued speech therapy, which we started before age 2. We added Occupational Therapy as well. We had our team helping us adapt to Sammy daily.
We enrolled him into a traditional preschool. And school was amazing for him. Peer models were key to his success. But his peers also learned from him. They got to see the world through his eyes as well. They got to learn that not all children are the same. And some need more support throughout the day. They learned about visual communication. They learned everyone is different. Sammy just got to be a kid in an environment where he got to be normal. No labels. Just supports in place to help him learn, grow and be successful. The same that should be in place for every child no matter their ability level. We fought for that.
Autism was never what defined Sammy. But it is part of what made Sammy special. We never let autism be an excuse or a reason. We worked through issues like any family would with a child that is struggling. We made changes. We encouraged the right choices. And we helped to be his guide.
I look back over our 6 years with Sammy. He has taught me so much. I am a better mom because of Sammy. Autism was scary. Because we did not understand. It was a diagnosis full of fear, and misunderstanding. A label that terrified us, because it was an unknown, unfamiliar. But I did not know. And soon we did. Autism is beautiful. It is nothing to fear. Is it easy? No. But nothing in this life is easy. In our current situation. Autism prepared me. It made me be the advocate that Sammy needed and deserved.
When cancer entered his life, our life, on October 19, 2016 it was a moment that I will forever remember. But I was prepared to fight for my son. I immediately knew how to fight on his behalf. How to be his voice. How to be his advocate. For the last 18 months I have not stopped fighting. Requesting for better supports in everything. Things that I would have never even known where to begin, if I had not already spent 2 years fighting for him everyday, every hour, every minute. Never taking no for an answer, always asking for what can we do better. Never fearing to ask a question, no matter how crazy it may have been. Because my child matters. Autism taught me that.
Autism prepared me for the hard reality of his diagnosis, of his surgery. The unwanted side effects. We were back to square one. Sammy lost every ability after surgery, every outward ability. We did not know what the days, weeks, months, years ahead had instore for him. But in that moment he could not talk, eat, sit, squeeze our hand, wiggle a toe. He could breathe. His heart was beating. And he was here. But we had the tools to support him. We worked with him everyday to regain abilities.
When he gained control of his eyes, we used big papers with sad face for No, and happy face for Yes. And we started our visual communication all over again. We moved to pictures when he gained more control. And back to a picture communication board when he could control his pointing. We eventually moved to verbal communication, just like we did in speech therapy for the years prior. But we knew it. And we could do it. We had the tools. His autism gave us that. And this time it was not so overwhelming despite the circumstances of the situation.
Every day has been about embracing Sammy for who Sammy is in this life. He is special. Sammy has always been a light in this world. Anyone who has had the honor of knowing him is blessed. And those know why. There is a piece of him that stays with you. I do not say this as his mom. But as something that has been shared with me by countless people over these 6 years.
I am sad we will never get to see a future with Sammy in it. Because we know his life was going to be full of wonder. He was capable of anything. And I couldn't wait for him to keep teaching me. But instead we will get to see the wake that his life leaves behind. We hope his short life impacts our world. And creates a change. We hope to encourage families that follow behind us. Give them hope. Despite the ugly of this world. There is always hope. We know there is always hope. Even in the end. Especially in the end. There is hope.
And soon, sooner than our hearts desire. Sammy will be full of hope and he will be free. He will talk again. He will dance again. He will run again. He will laugh again. Free of pain. Free of struggle. Free of suffering. Free of the limitations of our world. Sammy will be FREE.
“Children with autism are colorful- they are often beautiful, and like the rainbow, they stand out” -Adele Devine

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