April is World Autism Month. To learn more, click HERE.
Michaela has been a paralegal at Koenig|Dunne for over 3 years. Michaela is a divorced mom to Grace (16) and Sophia (14). This is her story as told to me.
I knew the minute she was born she was special. My Sophia with her dark hair and those large expressive eyes I could get lost in for a lifetime. Before she was born I wondered how I could love her as much I loved her older sister, Grace. Grace had captured my whole entire heart for the two years before Sophia came. But then Sophia arrived. My heart expanded the way mother’s hearts do and she filled it up.
It was a few years before “special” took on a new meaning for my Sophia. At two years old she was diagnosed with autism. I knew nothing about autism. I was scared. I felt lost and overwhelmed with worry.
After her diagnosis, I withdrew from the world as a wife, employee, and mother. I was obsessed about finding help for my daughter. Unfortunately, my research findings were insignificant, and therapies available to children in Nebraska with autism 12 years ago were scarce. Insurance mandates had not made their way to the State of Nebraska so any treatment found was incredibly expensive. We ended up placing Sophia in an autism treatment clinic at UNMC’s Munroe Meyer Institute that cost $300 per day (out of pocket).
I was 27. We were living paycheck to paycheck. The emotional and financial stressors introduced to our already crumbling marriage made divorce inevitable. I was a disengaged spouse, focusing solely on what I could do to help my daughter, no matter the cost.
Sophia was considered “low functioning” at the time of our divorce. She was considered non-verbal (she would only say “hi” at two years old) and communicated with hand gestures and a couple of signs. There was no way I was going to divide the time with my girls between their Dad and me.
I alone had done all the research.
I alone had found the treatment options.
I alone managed all of Sophia’s doctor’s appointments, therapist, insurance claims, bills, and education meetings.
It would be over my dead body that I would relinquish any of these parenting responsibilities to her father who I had pushed out of any part of the Sophia’s care. When the time came to develop our Parenting Plan, co-parenting a special needs child seemed impossible to me.
How will we ensure consistency in two households?
How will I know Sophia is taking her medication when she’s at her Dad’s house? Will he even give it to her? What about Sophia’s recommended treatments from therapists? What if we are not consistent in treatments in separate households?
What if we have a disagreement about education or medical care for medical care for Sophia? Who will make the decision to avoid disruption in care?
How, financially, are we going to continue medical treatment for our child? We’re broke.
Who is going to manage all the insurance paperwork?
Who is going to manage the multiple-time-per-week doctor’s appointments?
Who is taking off work to ensure Sophia goes to those appointments?
How am I going to manage all of Sophia’s care, continue working, AND be a mother to my oldest daughter without failing at it all?
Divorce involving children is hard. It tests you at every emotional place – even if the divorce is your choice. Divorce involving a special needs child elevates the challenges to an entirely new level – many of which I never realized until the final papers had been signed and I was on my own as a single parent for the first time.
What I discovered in the years after was that more than anything I needed to process my guilt around feeling relieved to be divorced. I was exhausted from being on edge caring for a special needs child 24 hours a day. Secretly, I was looking forward to “break” when Sophia went to her Dad’s house for parenting time. Despite the fact that I wanted to control everything, I so desperately needed a break to care for myself. I felt like a failure as a mother for looking forward to the breaks. What mom wants to be without their children for a couple days?
What I learned is that I am a better mom now because of that self-care. I am a better mom for learning how to be flexible. I am a better mom for letting Sophia’s dad in to support. I am a better mom for learning how to better communicate with her dad over the years because our daughter demanded consistency.
In the twelve years since our divorce, my former spouse and I have never litigated a modification action. We’ve both remained flexible, giving and taking when our child needs it. I have had to set aside my pride and ego more times than I care to admit. But now? My once non-verbal child at age 14 won’t stop talking or asking questions and all of the sacrifices were well worth it.