On World Autism Awareness Day on April 2 in a previous year, my wife posted on Facebook, “Autism is a journey we never planned, but we sure do love our tour guide.” Her words hit the mark.
The basic concept of Autism Awareness Month is to increase understanding and acceptance through education.
Prior to becoming a parent to a special needs child, I knew little about Autism because I had no personal connection. What I know today is Autism is the challenge of my lifetime. There are days when Autism wins and it’s not even close. Nonetheless, I find comfort and peace in knowing the disability cannot choke the joy out of life. My Carson, 13, through his disabilities, is the most inspirational person I know. I am blessed to be his father.
Each April during Autism Awareness Month I like to share Carson’s story. Soon after Carson, who we adopted, was born in 2009, we knew something was different. When he was 3 years old, we learned through genetic testing he had a duplication of chromosome 7. It’s an abnormality with no cure that results in major developmental delays, anxiety disorders, social phobias, speech and language delays, ADHD, psychological impairments and cardiac and renal defects. A few years later, after we realized his therapies and care would not be covered by insurance, we were advised to have him tested for Autism. We received the official diagnosis 30 minutes after walking into the doctor’s office through waiting room observations.
It’s easier to explain our child as autistic, rather than having a duplication of chromosome 7. It doesn’t matter to me. I could care less about labels. I just want what is best for him. If having a diagnosis of Autism will allow him access to more services in life, then that’s fine.
What I do care about is the uncomfortable journey my family is charting. Our life is a roller coaster ride full of incredibly inspiring highs and horrifyingly disturbing lows. While the focus is on the positive, there’s no denying we have scars from the negatives.
I used to most worry about our older son, Beckett. His resentment toward his little brother was once palpable. Things have changed, as Beckett, 14, has matured. Without question his six months at boarding school changed him and his perspective on his little brother. Beckett thought he wanted a different life, but he realizes now home with his family is indeed where he wanted to be.
I have never doubted Beckett’s love for his brother. He will do anything for him, but he has vocalized how exhausting it is for him to always acquiesce to Carson in fear of a behavioral outburst. Instead of focusing on how he was once pushed down the steps by his brother during a tantrum, Beckett reflects on how far he has come.
Pam and I understand the resentment aspect. We know it’s difficult and want Beckett to communicate when he feels his needs are being overwhelmed by his brother. Beckett accepts his brother is different. He no longer decries the inconsistencies in our parenting of him compared to his brother. We expect more from Beckett. He complained about that for a long time as unfair. He seems to understand the realities of the situation better now.
The key to a happy life with our special needs son is patience. It’s challenging each day, but it helps to have an empathetic heart and a forgiving soul.
Because this month is about awareness through sharing, here’s a message I wanted to include here a Facebook post from a friend, Gina Watts, who has a son with Autism in Carson’s grade. I was able to coach Nate in our TOPSoccer program over the winter and have watched him grow up through elementary school. I loved her message.
Today is World Autism Day. As many of you know we live with autism everyday in our house. One of the things I wish people would understand about raising a child with is autism is that it can be really, really hard. Some days Nate can go from very happy to full meltdown, with self harm or harm to those around him, in a matter of seconds. Due to his inability to functionally communicate often times we aren’t sure what triggers him. Some my hardest moments as a special needs mom are seeing my child physically hurting himself.
I also wish people understood that kids with autism are all so different, sometimes when I tell someone we have a child with autism I hear things like “oh but they are so smart”, or “what’s the one thing he’s good at?” “does he have a good memory?”
Often I want to respond by saying the one thing he’s good at is putting holes in the wall because he was startled by our dog barking, or he’s really good at breaking things just because he likes to hear them break. His memory is amazing, he can recite lines from cartoons OVER and OVER again for hours.
Nate requires so much work behind the scenes that people just don’t see, one the hardest, is advocating for him so that he is getting an appropriate education. The paperwork alone for this is overwhelming. The fight is ongoing and I won’t ever stop fighting for him.
One of the best things I’ve learned since Nate was diagnosed, there are amazing people in the world and many of them are autism moms who fight everyday for their children. So, on World Autism Day, just let them know you see them and are there for them in those times when autism just breaks us down.
