Ain’t Nobody Got Time for Drama when You’re an Autism Mama
When I received a private message today from a sweet autism mama, my heart sank. She was leaving her support group because of drama between her and some moms in the group who had been her best friends.
I knew this decision didn’t come lightly.
I knew her eyes were bloodshot from nights wasted worrying about the right thing to do, wondering how this situation got so far out of control, and feeling betrayed by the very people who were her lifelines for so many years in early autism.
Her words brought back feelings from years ago when I experienced a similar situation within my autism allies.
When my daughter, Lizzie, was diagnosed shortly after her second birthday, I urgently sought a support group. The clock was ticking.
I needed immediate knowledge to capitalize on every minute of early intervention I had left, and I frantically searched to find other moms who would guide me.
In many groups I visited, the negativity was suffocating. The moms seemed defeated and bitter. This made no sense to me since I was filled with hope and desperate for information on how to help my daughter communicate.
Finally, I walked into a room of the most diverse, dynamic, intelligent group of moms I had ever met. I felt smarter just being in their presence.
Each mom had been highly successful in her pre-mom life and had immersed herself in extensive research she was willing to share with the group.
These were women with so many different backgrounds joining together for one single purpose: to help the little people we loved the most. I had found my tribe.
We met once a month, traded notes, sampled gluten-free-dairy-free dishes, and talked each other off the ledge. The most beautiful part of the group was we had no explaining to do.
Every mom heard the same words, “Your child has autism,” and every mom was struggling to find a new normal in the midst of a life we hadn’t planned on or asked for.
We met for playdates, and even though none of our kids played together, it made us feel slightly more typical. We started an online chat group that quickly grew to numbers in the thousands.
Watching each other’s kids develop, some advanced more quickly than others, and this brought about complicated feelings that no mom should be forced to face.
We were outwardly happy for our friends’ kids’ progress, but secretly wondered what we might be doing wrong because our children weren’t achieving goals as fast.
Then the arguing began. Strong opinions about treatments were spoken, statements and intentions were misunderstood, accusations were made, sides were taken, and we were going around and around so many times that no one even remembered where it began.
Ties were severed and support dissolved.
I remember feeling attacked and deeply hurt. The very people that I had opened my heart and soul to had turned on me. The women who were the only ones who “got me,” no longer did.
Hearing my friend go through the same thing so many years later, forced me to evaluate why this is so prevalent in our autism circles.
What would cause moms so deeply involved in each other’s lives, moms who had become family, to turn on each other?
Having been in the trenches for years, reasons are now obvious:
We take things personally because we have been burned.
From the moment of diagnosis, we feel like outcasts in our community. An unkind word from a neighbor keeps us from taking our kids outside.
A judgment from a friend stops us from inviting people into our homes. A family member questions our parenting methods and shares hurtful advice. We have unknowingly become defensive.
Yes, we take things personally, but for good reason. It’s only a matter of time before these reactions seep into our autism-mama relationships too.
We are so used to fighting that sometimes we don’t know how to turn it off.
We fight for a diagnosis. Sometimes being told multiple times by multiple doctors that we are over-worrisome moms, and what we see in our children is not real.
We fight for services. Often being turned down time and time again, creatively using every tool at our disposal until we finally prove our children’s challenges in a way that fits in their system.
We fight for acceptance. Each time our children are misunderstood, we push harder to show the world their abilities and worth. It becomes maddening, causing our reactions to go from 0 to 10 in a matter of seconds.
We are stressed out and sleep-deprived.
This is the understatement of the year. We are emotionally, financially, and physically drained beyond what we thought was humanly possible.
Unfortunately, anybody who isn’t living our life will never truly understand what we go through. Any ability to remain calm and rational disappeared a few year’s sleepless nights ago.
Maybe if we force ourselves to look in the mirror and acknowledge how autism has changed us, we can keep from becoming bitter old women, sitting in circles suffocating new autism moms with our negativity.
Maybe instead, we channel all that hurt and determination into helping those one step behind us in this grueling process. If we have been on this journey even one day, we have information another mom needs to help her child.
Eventually, I chose to forgive those who I felt betrayed me. I am sure I was just as insensitive in the words I used as they were.
I even offered a truce invitation, which wasn’t accepted, but that’s not what matters. A burden was lifted off my shoulders I did not need to carry.
We have enough daily autism weighing us down. Putting the negativity behind me strengthened the relationships worth keeping, opened up positive energy to give to others, and most importantly, enabled me to refocus on helping my daughter become the best version of herself.
We need each other to survive. Every person in our community is stronger the more we work together.
Together we can raise awareness, turn awareness into acceptance and create a safe place in this world for our children. Any drama distracts from our purpose, and, “ain’t nobody got time for that.”
Written by, Julie Hornok
Julie Hornok is an award-winning author, inspirational speaker, and advocate for autism. She started the non-profit, United in Autism, to bring hope to autism moms through pampering events. Her first book, United in Autism: Finding Strength Inside the Spectrum (foreword by Temple Grandin) is available at UnitedinAutism.com or Amazo
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