Fear is a part of my life every day as a parent of a child on the autism spectrum.
Sometimes my fears are completely rational. And sometimes they are totally insane. At times a specific incident or behavior awakens the fear inside of me. Other times the fear sneaks in out of nowhere.
My fear is unpredictable. Often unrelenting.
The fears fill my head as I navigate through the hectic schedule of the day. And, they are present at night as I drift off to sleep. Fear is a part of every day. All day. The fear is never ending. Fear is one true thing I can count on along this journey.
The truth is, everything about my son’s autism spectrum disorder terrifies me.
The fear started long before the diagnosis. I was afraid of the answers that I did not have. But, I was afraid of the questions too. Admitting out loud that there were things about my son that I did not understand. Things that I knew were not typical. I feared the parenting journey in front of me. Sometimes I feared the journey itself; but mostly I feared that I would not be enough to make the journey. To survive the journey. And that kind of fear is powerful in all the worst ways.
Each fear led to more fear. And with every fear I grew more and more uncertain of the journey. Of my strength. Of myself.
After diagnosis my fears only increased. Fear occupied every available space in my brain. I feared things in the present: word counts and milestones and same age peer interactions. And I feared things far in the future: college and prom and marriage. I needed to bring all of the fear to the surface. I thought that if I could own up to every fear then somehow I could get ahead of fear altogether.
I was wrong.
As my son gets older it is increasingly difficult to quiet my fears for the future. As toddlers the lines that distinguish one child from another child are blurry. Children develop at different rates and acquire skills sporadically. And when they are learning to crawl and walk and talk it is easy to explain away the differences that you may see from one child to the next.
But as children get older the lines distinguishing children grow more distinct. And with every day that passes the differences between my son and other children are clear. Clear to me. Clear to my son. Clear to other children.
And, as the awareness to the differences set in all around us my fear ignites. I fear for the obstacles he will encounter. I fear the things people will say to him. The way people will treat him. I fear the way he will be perceived. And, the way he will perceive himself.
My fear takes flight. It get very big. Very quickly.
And then in an instant something catches my attention. I overhear an exchange between my sons. I see my son wiggle in the face of his younger brother. I see my youngest son uncertain how to react. And in some moments I see him choose to be unkind in response. Because sometimes being unkind is a quick and easy way to react. Sometimes being unkind feels good in the moment. Sometimes being unkind helps you feel like you are taking back the power.
I understand all of the reasons why my youngest old son is unkind from time to time. But that understanding does not help my fear. Because if my own son struggles to show kindness to his brother, then how can I expect the world to show him kindness?
It is a real fear. A fear that I have every single day. About the world. About the people in the world. About their capacity to understand my son. Their ability to look beyond the autism. To look beyond the symptoms and the tendencies. To see the amazing little boy so filled with joy and love and compassion.
And when I see my youngest son be unkind it reminds me of the important job I have ahead of me. The important job all parents and grandparents and teachers and neighbors have ahead of them.
The job is simple: teach kindness without boundaries and exceptions and limitations. Pure and simple kindness.
Explain that the easiest thing to say may not always be the nicest thing to say. Teach the importance of thinking first and speaking second. Because sometimes quick reactions make us feel good in the moment, and make us feel bad down the road. Teach that you will never regret the time that you were kind and compassionate to someone in need. That character is more important than popularity. That a moral compass is a possession more valuable than any money can buy. That compassion and kindness and acceptance are contagious. Teach them to spread it everywhere they go.
I will never let go of my fears for my son and the obstacles that he will surely face. Those fears are now a part of the fabric of my life. But what I can do is infuse each fear with hope.
Hope for a world filled with kindness. Hope for a world free form bullying. Hope for a natural acceptance of difference; rather than a hyper focus on difference.
Fear is powerful; that I know for certain. But from somewhere deep inside of me I believe that hope is stronger and more powerful than fear will ever be.
So hope with. Fear with me. Teach kindness with me.
2 thoughts on “My Biggest Fears About My Son’s Autism”
Yes! I cannot even express how you summed this up so well! The fear is so real…the hurdles are so real and they’re ever changing. You just spoke to my mom heart on all of the levels.
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I also have many fears too. But I try not to share them. As my husband is the one constantly worrying with fears and how our son will be or do in the future. I try to be the one who is strong and positive. But in reality I often have the same fears. From small things, will he ever be potty trained (he is 4 1/2) to how he will be when he is older. I just try to think and celebrate the small things. Like today in food therapy he actually ate food! Love to you and your family.