There was a voicemail left by someone I knew 25+ years ago. Not necessarily a friend of mine, but a friend of my cousin. There were six of us, including my twin sister who made up our little girls club from middle school through our early 20’s.
We tried our hands at real-life and subsequently went our separate ways. I kept in touch with everyone except the person behind the voicemail, who I will refer to as Mary.
It’s not that Mary was a bad person or wasn’t likable. Mary’s lifestyle was wild and a bit much for me and I chose to maintain the distance I had created over the years.
My sister told me she bumped into Mary and not only gave her my home phone number but my cell phone number as well. Mind you, I have already told my evil twin I had no intention of rekindling yesteryear or fostering a new relationship with Mary. I’m having that evil twin of mine exorcised!
Mary left a message saying she wanted to talk with me about a surgical procedure she was having because she was afraid. As I listened to the message, I couldn’t imagine why she called me because we haven’t talked in god knows how long and surely she knows how long it’s been as well.
Mary’s message included this: “I didn’t know you had a son with autism. My youngest son has autism too, so I guess we’re dealing with the same kind of stuff”. There was a momentary pause, followed by a deep sigh and she said in a low, sad tone: “I’m sorry”.
Mary has three children-her youngest son has autism. I have three children-my youngest son has autism.
Who else to call other than my sister. I asked her why she told Mary so much about me. She then said to her evil twin: “Mary is who she is. Her life is different now. I told her about you because You Know what it’s like to have a kid with autism. I don’t and you need to call her!”. Uh, excuse me, but I thought I asked to speak to my sister, not my mother? And what the heck about this surgical procedure!?
I hear Mary’s voice in my head: “I’m sorry”. Not knowing what to expect, I take a deep sigh hoping not to be sorry I’m making this call. Instead of Mary, I spoke to her youngest son. He is a tender, vulnerable 16 year old filled with lamb-like gentleness and you can just hear it in his kind voice. Because he speaks well, I’m guessing he is on the high-functioning end of the autism spectrum. He said: “Mom went to the store, what’s your name?” I told him my name and he said I could speak to his big brother. I asked if he would tell his mom I called. He responded: “I don’t think I will remember your name, can you call mom back?”. Yes, of course I can.
Retrospection kicked in. I thought about Mary being a single parent. I thought about what could have been with our friendship. I wondered if I had made a mistake all these years. I gave it more thought and concluded afterall, I will not apologize for decisions I’ve made about my relationship with Mary. I could not have made her life comfy for me or visa-versa. I reminded myself, not all relationships are meaningful even if there is a common denominator.
When I spoke to Mary, I did not say I’m sorry about her son with autism and I did not apologize for mine. Autism does not render our children pathetic and worthy of nothing more than grief-stricken sentiment.
“I’m sorry” is a barrier. “I’m sorry” implies there is no hope. “I’m sorry” cements grief that parents go through from time to time…get it out, it’s okay to cry about it if you need to–but don’t get stuck there.“I’m sorry” obstructs vision & hinders promise of discovering new ability. “I’m sorry” makes autism stagnate…implies no milestones can be achieved. “I’m sorry” implies there is no joy or love in living with autism. And quite frankly, “I’m sorry” just pisses me off. Enlighten me if I don’t know autism has somehow become a death sentence. “I’m sorry” is not consolation for autism. Again, enlighten me.
I’m not delusional either. Where the pendulum swings heaviest on the autism spectrum is where the burdens and challenges are more or less lumbering. But geez, must we always be perpetually sorry about it! There really is humor in autism sometime for those who aren’t oh-my-god-afraid to be tickled by it. Stop being sorry about everything autism! Be a part of the solution!
It is because of my son’s autism I have learned true patience. I have learned what true happiness is. I know genuine joy. I know autism can be progressive. My son’s autism has taught me what it means to love unconditionally. I finally know. And I am not sorry about it.
Mary and I won’t play catch-up, but we are moving forward in a new relationship both of us are comfortable with. Oh, by the way, her surgery went well. (but that’s a girl-stuff post).
I liked and appreciate this response to my post from ProfessorHoney in Florida:
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professorhoney Said:
I don’t subscribe to the same belief that sorry has all those connotations. In fact, Mary just may mean I am sorry that you have to deal with the difficulties of Autism and that is it. It could be just that simple. In fact I am sorry, I’m sorry that the world is so selfish and my unsuspecting child has to endure such assholes. I am sorry that I have to worry about leaving this world and my child is left without me to protect him. We all don’t come from families that will pick up where we leave off and care, nurture, and attempt to supply the kind of support I will or even make the effort.
Mary just may be sorry, or sad or disappointed or tired or worried and/or a worried sick tired mother like most of us, but whatever she is, saying she should not be sorry and get over it isn’t easy for everyone. Remember, if you haven’t walked a mile in Mary’s shoes . . . need I say more. “Autism” for us all comes in many degrees and for some, they may be sorry, but it doesn’t mean their hopeless.
Filed under: autism, disability, family, mental health, relationships, special education, special needs, Uncategorized | Tagged: autism, disabilities, family, relationships, special needs | 4 Comments »
Love, autism 
I am so sick of parents and caregivers handling autism everyday being reprimanded and patronized by people who are completely out of touch!
Tom, whoever you are, your comments clearly indicate that you are truly, genuinely disconnected from anybody’s reality other than your own. I am not one who will typically denounce a post, but you don’t have a clue about dealing with autism. (or people of color…that was a shallow, mindless, assinine comment).
No, Jason was not wrong to respond the way he did. He was quite polite! Parents who have children with autism tend to feel obligated to explain behaviors that make other people uncomfortable. There isn’t anyone in this world more uncomfortable than the caregivers who are living every single day with the challenges of autism. We don’t have to tell anybody anything short of “take a long walk off a short pier” when our children are being insulted.
No, our children do not deserve to be insulted anymore than your child or anybody else’s children. I agree, when a person decides to go to a public F-A-M-I-L-Y facility of any sort, children are going to be there. Duh! Don’t want to be bothered with kids? Then don’t go to a kid-friendly establishment. If grandma wanted a quiet meal, then she should have went to a quiet restaurant. Here is something else. Whether anybody likes it or not, AUTISM IS A VERY NORMAL PART OF EVERYDAY LIFE. It is not atypical anymore. It is not abnormal anymore. It is everyday. It is real. It is prevalent. It will not go away and we won’t apologize to anybody else for it.
Why don’t you…next time…take a moment to wear a puzzle piece. Why don’t you become a part of the solution instead of a very real part of a stereo-typical problem in society about mental illnesses and autism. Try volunteering. That’ll be a test of true character and willingness to help make other people comfy with autism. Dare to step away from the privilege of your own incubated experience.
No Tom, you don’t offend people with your brashness…you don’t get brownie points for thinking in your mind that being brash merits applause. It’s your narrow-minded stupidity that’s amazing.
It’s too bad she wasn’t more compassionate. Considering she has one foot on the grave and the other on a banana peel, she’ll be looking for the very grace she couldn’t find in her own heart to lend to a child.