The girl sitting next to me in a parent class leaned over and whispered, “Do you think we are doing too much and looking to fix our kids?” This was a big conversation to have right as class was starting, and to be frank, it is one that I have had with many other autism parents.
As a nurse, I have spent many great years helping to fix people. I have rushed people into surgery after a car accident or a fall to have their bones put back together. I have taken care of people after surgery where they had tumors removed in the most horrendous places. Looking back though, I am not positive that we ever really fixed anyone, nor that it is possible. Although the patients I took care of could eventually walk again, and even go back to work, they still had scars that were visible. But more than that, they also had experiences that shaped their lives.
While we know of nothing being physically broken with autism spectrum disorder (ASD), there are definitely some hurdles (aka learning experiences) to tackle. Some parents have been labeled as they try to fix their children—or make those hurdles go away. If I had looked at a patient in the emergency room and ignored the break in a leg because I didn’t want the person to have one, this would not have fixed the leg. Despite our highest hopes for our children and dreams of perfection, ignoring areas they need help with will not make them go away either.
Once ready to acknowledge the hurdle, the next step is to take a look at it. The hurdle will most likely remain until the child grows or some other positive energy affects it. While we cannot affect or speed up the growing process, we can have an effect on the environment or experiences placed in front of our child. Sometimes, after examining this hurdle, we may find that it is painful. We may look or even run away. Even though we are acknowledging the break or hurdle, if we don’t want to look at it, this is fighting reality and will not make it go away.
Once we are wiser, we can come back to take a second look. That darn hurdle we ignored and wished away will still be there. We can then, perhaps, decide there is something we can do. We can start to work with the hurdle. For example, instead of wishing away hand flapping or wishing your child could talk, look at what these behaviors mean instead. Hand flapping can be a form of regulation. Instead of fearing the hand flapping, look at and feel the environment you are in and consider what your child might be reacting to. Ask yourself if you can influence a positive change in the environment that might help your child. As for communication, spoken words are not the only way to communicate, and your child may be communicating with you already. Indulge in any communication you receive and recognize what communication you are receiving, thereby giving your child support to open up more.
While this process is loosely defined for all parents, I would offer that it appears more defined in autism (having experience raising a neurotypical child and a child with autism). The goal of any parent is to help his/her child live the fullest life possible, so why does this suddenly change to fixing when the child has autism? I don’t look to rid my child of his autistic behaviors. I look to help him be able to clothe and feed himself. I look to be able to help him learn about the world around him and make friends. The thought process of fixing versus raising might just depend on your attitude and how you decide to go about it.
A final word on raising a child with autism: As mentioned, patients I helped fix in my nursing experience often left with life experiences that changed them for the future. I would be lying if I did not tell you that they also changed me as well. I learned perseverance from a Lou Gehrig’s patient who ran a marathon with the disease. I learned humility from a multiple sclerosis patient who could not feed himself and was hesitant to ask for help. Raising a child with autism has been an experience from out of this world. I have learned patience and presence in all things. I have learned about making life with what is in front of me instead of wasting it on wishes. I have learned that instead of my child needing the fixing, it is me.
Gina Baker is mom to the sweetest boy with autism and coaches other parents at www.spectrumlane.com. She is a nurse, life coach, natural play therapist, and an avid chocolate eater.
This article was featured in Issue 67 – Preparing for Adulthood With Autism