Sunday, October 4, 2015

Yes, I Am an Autism Mom

Of my various roles in life, none is more important to me than being an autism mom.  More specifically, being Alex’s mom takes precedence over everything in my life. After more than twenty years of being an autism mom, imagine my surprise to discover this week that the term “autism mom” apparently offends some people.

In her Huffington Post essay published this week, “Why I Call Myself an ‘Autism Mom,’” Shawna Wingert  explains that she, too, recently discovered that the term “autism mom” strongly offends some people. Although I wasn’t sure whom she was referencing, once I read scathing comments in response to her essay, I found the critics—adults who say they have autism and some who simply criticize everything parents with autism do and say.

Truly, I admire that Shawna Wingert earnestly tries to understand the point of view of those who criticize her for calling herself an autism mom, and she beautifully defends using that title. She explains, “I never want anyone to assume that I somehow think my son’s autism is about me.” Perhaps because I’ve been an autism mom longer than she has, I don’t feel the need to be as cordial to those who want to criticize autism moms. In fact, I want to defend her and all the other autism moms from those who would dare question our intentions and motives.

As she also notes, the phrase “soccer mom” commonly exists in our society, and no one seems upset by that terminology. Moreover, university bookstores stock t-shirts and sweatshirts to sell to students’ parents emblazoned with the name of their college followed by “Mom” or “Dad.” For most parents, our lives become entwined with our children’s, as do our identities. Hence, we become soccer moms, dance moms, Valpo moms, etc. We are proud of our children and involved in their lives and activities, and we enthusiastically take on the titles that describe our children. Autism moms are no different. Instead of taking our kids to practices and games, we take them to speech, occupational, and behavioral therapies.

Like Shawna Wingert and many others, I am an autism mom and will continue to use that title unabashedly. However, autism is not who I am, nor is it who Alex is. Autism is simply what occupies our time, just as soccer does for soccer families.

However, those who bash the term “autism mom” (and made their presence known through harsh comments responding to her essay) accuse us to trying to claim autism as our own, something we “have” that really “belongs” to our kids. As Shawna Wingert asserts, “Autism is his, and his alone. I do, however, think that parenting a child with autism is mine.” Indeed, parenting a child with autism is something we own, something that binds autism parents to understand each other, allowing us to empathize because we share situations typical parents do not.

Furthermore, some of the nasty responses to this essay suggest that autism moms are self-centered and like those with Munchausen Syndrome By Proxy, as though we enjoy having children with a disability because we seek attention ourselves. Believe me, if I could erase autism from our life, I would do it in a heartbeat. Honestly, I hate how hard autism has made life for Alex, and we have focused our efforts on making his life better and easier in spite of the havoc autism has wreaked on his body and mind. By sharing our experiences in my blog, I sincerely want other autism parents to know that they are not alone, and I also want to increase autism awareness for those who don’t know firsthand what autism parents are dealing with on a daily basis. Furthermore, I always strive to show God’s grace in our lives; my intention is to glorify God, not myself.

As an autism mom, I am grateful God has given me the organization needed to keep track of the three dozen pills we administer to Alex every day and all his various appointments and paperwork. As an autism mom, I’m appreciative that I have the energy needed to help Alex with his daily living skills and that I am healthy and strong so that I can take care of him. As an autism mom, I am thankful for the wonderful team of specialists who help Ed and me develop Alex’s skills and make him the best he can be. As an autism mom, I am fortunate to have family and friends who have prayed for us, supporting us in the difficult times and celebrating with us in the good times. As an autism mom, I am blessed that God has always taken care of us, showing us the paths we should take and keeping Alex safe from danger. As an autism mom, I continue to pray for healing so that Alex and others like him no longer have to struggle with autism, and so that we no longer need the term “autism mom” because we will simply be grateful moms instead.

“I will comfort you there in Jerusalem as a mother comforts her child.” Isaiah 66:13


Rita Jones said...

No one has the right to call you an autistic mom. My younger son is also autistic but this does not mean that I am also autistic. I was in depression for about six months after knowing about autism. Now I am fine as this is not a disease. Now I am planning to send my son to a good autism school in New York where he can get his education and develop his skills.

Pam Byrne said...

I hope things work out well for you and your family, Rita!

Take care,