What it means to be a parent of a child with autism
While scrolling through my Facebook feed a few weeks ago, I saw a post that said, “Some days I think I can’t be a good parent to my child with autism. The other days I know I can’t.”
The post made me laugh because, as a parent of a child with autism, I could relate. Many days I’ve had my own doubts about handling the problems that come with having a child with special needs.
My son was diagnosed with an autism spectrum disorder at 3 years old. My second son was just 8 months old at the time and I felt a wide variety of emotions — emotions I’m sure most parents feel when they are told their child has special needs.
I felt relieved to understand a little more clearly how my son felt and thought.
I felt scared, not knowing what my son would have to struggle through for his entire life.
I felt inadequate at my own abilities to parent a child with special needs.
I felt unsure of where to go or what to do to help him.
Above all, I felt an incredible amount of love for my son, who was still the same happy, loving and kind kid I’d always known.
My husband and I have some background in working with those with disabilities — we had been involved in the LDS Church’s special needs mutual program, my husband had worked with those with disabilities for nearly a decade, and we had often visited a local home for those with disabilities — but nothing fully prepares you for being a parent of a child with autism.
There are so many aspects to autism and, like all kids, no two kids on the spectrum are exactly the same. I’ve heard it said that if you know one kid with autism, you know one kid with autism.
Over the past few years, I’ve seen my son struggle with language delays, sensory disorders, anxiety and social disorders.
I saw other kids his age learn to speak and have conversations with their parents and peers, while my son stopped progressing in his speech and would only repeat the same few phrases over and over.
I’ve seen my son struggle with basic motor skills like holding a pencil or pedaling a tricycle.
I’ve seen my son struggle with eating foods with which he was unfamiliar as far as texture or taste.
I’ve seen my son struggle with even simple routine changes, and any unexpected changes to plans.
I’ve seen my son have meltdowns and complete shutdowns simply because somebody talked to him and expected him to say something back.
I’ve seen my family members struggle to get to know him when he won’t interact at all with them.
But with all of those struggles, I’ve had my share of joys that have come, not in spite of, but because of my son’s autism. Every moment he makes progress means so much more because of the work it took to get there.
There was the moment when, after a year and a half of weekly speech therapy, I had my first full conversation with him.
There was the day he first started going to his early intervention preschool program and loved it.
There was the first time he came home from school and was able to tell me something he did while there.
There was the night he said his first prayer without any help.
There was the first time, just last month, that he was able to go a full afternoon without a potty accident.
There was the day that he was able to say hi to a friend without being prompted.
There were the times that he was able to tell his grandparents, aunts, uncles and cousins that he loved them.
And there is the everyday event of him playing and talking with his best friend — his little brother.
Each of these events, though they may seem small, were monumental for us, mainly because they took a lot of help and work to get there.
His progress doesn’t come just from his hard work and our work as parents.
Our ability to involve him in early intervention programs, from preschools to different kinds of therapy, has made an immeasurable difference. I was amazed when I started looking into the programs that are available, just how many different options there are. I learned quickly just how much potential kids with autism have, especially when they get the help of speech therapists, occupational therapists, school teachers, pediatricians and many others.
I’ve also learned that I’m not alone. Being a parent of a child with autism means that you are part of a community — a community of other parents, family members and friends of those with autism. You have an instant bond with other parents, who can be a great resource for you as you go through struggles together and look to each other for support.
So, what can we do as community members to help?
There are always events like autism runs and fundraisers that help in autism research, but the biggest contribution, in my opinion, is to offer true understanding and support to individuals with autism and families of those with autism.
One day, while sitting in church, my son was having a particularly bad day and was obviously disrupting others around us.
The woman in front of us quietly turned around and handed him a package of fruit snacks, which grabbed his attention enough to calm him down. She never said another word, but knew that at that moment, my husband and I needed the extra help.
Offering understanding and support is more than just not judging. It means taking an active role in learning more about autism and the struggles that those with autism go through. It means stepping up and offering help when needed.
If you aren’t sure how to help, ask the person or, if it’s a child, ask his or her parents. If you want to know how your kids can better befriend those with autism, ask their parents. If you want to help them, get to know them.
Instead of walking past the parent struggling with their autistic child in a store, smile and give them a kind word of support. Help babysit other kids while a parent takes their child to therapy. When an adult with autism says hi, stop and have a conversation.
Those simple acts of kindness are the moments when I know, with the help of those around me, that I actually can be a good parent to my child with autism.