Parenthood: what is it like to have a child with autism?
The Centers for Disease Control and Prevention (CDC) estimates autism’s prevalence as 1 in 68 children in the United States. This includes 1 in 42 boys and 1 in 189 girls. And recently, articles like this one in Scientific American point to research that indicates that current diagnostic methods overlook girls, which could mean that autism is even more prevalent than these statistics would lead us to believe.
Still, for people living with autism, the diagnosis is so much more than a statistic. Autism affects so many families, changes and shapes their lives in all kinds of ways, both expected and unexpected. Today we’re talking to my dear friend, fellow momma and hero, Kary who opens up to us about what it’s like to have a child with Autism.
How did your journey with autism begin?
My journey really began in 2005, when Kannon was around 2 years old I started realizing something was “off” with him. He wasn’t performing like his peers and wasn’t starting to talk either. At that time Autism was still not in the forefront of news as it is today, so there were little to no resources or information out there about it. His own pediatrician at the time didn’t even bring it up even though I voiced my concern numerous times about his development.
His behavior was tough to manage and he seemed like a source of uncontrollable energy at all times. He was overwhelmingly difficult and at the time I just thought maybe somehow I wasn’t being a good mother, or maybe I wasn’t doing enough for him. It was very frustrating and heart breaking. I felt very lost without any direction from the “professionals” so I started calling every therapy center, children’s resource center I could.
I can’t remember how many places I made appointments at only to be turned away within minutes because they had no answers or help for me. This went on for months. Then finally I came across a center that uttered the word “Autism” to me. I had never heard of Autism, had no idea what it was, and no idea what to do about it. This was the beginning of my journey with Autism.
How did you feel when Kannon was first diagnosed?
Ironically Kannon wasn’t technically diagnosed until he was 6 years of age. This is because of the system that was put in place by the medical world. Without a diagnosis, kids can’t receive any help from the government for services, therefore receiving a diagnosis of Autism was like holding a golden ticket. It was damn near impossible to get.
When he was finally diagnosed, even though I had already been dealing with Autism for years, to see it on paper in black and white was the toughest day of my life. I remember receiving the report in the mail from the child psychologist and I was in my driveway. When I read it, it literally brought me to my knees. So there I was on the ground in my driveway shaking, crying and knowing what I already knew….but for some reason, when you see it on paper it’s earth shaking. I felt angry, sad, self pity, hopelessness and grief.
How has he overcome the challenges he has been faced with because of his autism?
The struggles I’ve seen Kannon face in dealing with his disorder have been the hardest part of being his mother. I’ve watched him struggle through years of therapy, doctors visits and assessments that have brought both of us to tears. He has fought so hard for the little things in daily life. Tying his shoes, saying hello, identifying colors, shapes, etc. All very simple, yet necessary to navigate our world.
He has fought so very hard with his own brain to make these simple things come to the surface. He still struggles with social interactions and verbal communication. This is something he always will have problems with. He will have to remain in some sort of therapy for the rest of his life, it is what has helped him get as far as he has today. It’s just how his autism works. Autism looks so different for every child, you truly can’t pigeon hole this disorder or the people living with it.
What special challenges have you faced as a parent of a child with autism? How have you overcome them?
The biggest challenge is being able to find the beauty in all of this. Autism can be very ugly in many ways, but it can also be beautiful. It has taught me a lot about the person I was meant to be and has shown me human compassion and understanding at a level I never would have reached without autism.
I’ve had to overcome the grief of living with autism and the “loss” of what Kannon could have been without this. I have had to find the gifts he has brought to this world and to me even though they may have been disguised as challenges…I had to make them into beautiful learning experiences. It has given me humility and patience. It has ultimately made me a better human than I could’ve imagined.
What is it like to raise a child with autism along with a child who is not on the spectrum at all?
The biggest challenge with this has been finding the balance between the two and how to be the best mother to both of them at the same time. They require such different skill sets from me and I have to navigate both of them with patience and structure. They need to be loved differently, disciplined differently and spoken to differently.
It does get tough at times finding ways to make Kalena feel as if she is as “important” as Kannon. I say this because Kannon has teams of people in our home working with him every week. Appointments, doctor visits, etc. Kalena feels left out or like she isn’t important enough for all this outside attention, which clearly is not the case. I make it a point to set aside days for just her and I to do things together without Kannon. “Girl time” as we call it. As she has gotten older I make it a point as well to address the “attention” Kannon gets as necessary for his disorder. That it is medically necessary and that we are trying to help him live the best life possible so we need to be patient.
How has having Kannon as her older brother impacted Kalena and influenced the young person she is becoming?
She worries about her future with him. She worries about who will care for him when I am gone. It’s really heartbreaking actually, so I try to assure her that he will be cared for and that she needs to live her own life and make her own family and that Kannon will always be her brother but not her responsibility. On the flip side, it has made her incredibly compassionate and patient. She is such a wonderful sister to him.
What advice would you give to someone whose child has been recently diagnosed with autism?
Do your research, push for services, don’t let anyone tell you no. There is help for kids, there are resources if you dig deep enough, and there is no reason any child living with autism shouldn’t get the help they need…along with the families. You will have to fight many fights, but don’t give up. Keep fighting the good fight.
What advice would you give someone who doesn’t have much experience at all with autism? How can we be inclusive and understanding when it comes to interacting with someone like Kannon?
Patience. Just realize your reality or perception of reality isn’t always truth. People live all kinds of lives that are different than yours and that doesn’t make it wrong. Be open minded and compassionate to others that seem different than you. A smile and hello goes a long way.
What are your three favorite things about Kannon?
His heart, his love and his fight.
What are your three favorite things about Kalena?
Her heart, her patience, and her smile.
Where would you direct someone if they would like to learn more or to make a donation?
Contact your doctor, child psychologist and health professionals for guidance. Online organizations such as Autism speaks, Autism Now, and Autism Source are good sources. My personal favorite charity is Surfers Healing. They are a non profit that takes kids out on the ocean to experience the thrill of surfing. What they do is amazing.
Thank you Kary! I’m so proud to call you my friend and so glad that Kannon has a mother like you.