The Road Ahead…
My fears were finally confirmed. Autism was a word that would change our lives forever. This was big. Though part of me was relieved, the other part of me was terrified and sad. Sad he would always be referred to as autistic or special needs. Scared he might never drive, never play sports, never go to college, never get married, never have children of his own, never be able to live on his own….
Worry is in the minds of every parent, however, when you have a child with special or medical needs…. Well, lets just say worry follows you everywhere. So I asked myself what now? Why did I want to know the truth. Where do I go from here?
I started looking at what was directly in front of me. Not the future. But right now. What are we facing right now.
The therapy and assistance began. Calendars and schedules filled with speech, occupational, and behavioral therapy. Thank goodness, Zane’s younger brother was such a great pocket baby. We spent most of Quinn’s infant time in the car or waiting room of some therapist…
Our lives were not our own..autism is more than a child, it affects the family. We are autism. Everything we do is based on what Zane can do and when and where he has to be for therapy, schooling, etc.
What amazed me most was that every bit of knowledge or advice we sought after was like a mystery or treasure. Nothing was easy to figure out or find. What do we do? How do we find a therapist? Where do we go? What school accepts a child with an IEP (Individualized Education Program)? Which by the way, we fought hard to get in the first place! No one wanted to give Zane an IEP. It wasn’t until we had the ADOS test in our hands that they believed Zane had autism.
I didn’t know how much of a fighter I would have to become. Not my forte by the way. I would get better over the years, but I am a calm, fun natured, love everyone kind of person. But when it came to getting what I need for my children, the claws had to come out.
I didn’t realize the amount of patience I would need to not only get the help I need for zane and for being a parent in general, but for parenting a child on the spectrum. Wow. Seriously. Wow.
The relentless tantrums that last and last and last until you just don’t know if you can take it anymore. Tantrums over the fact that the left shoe was put on first before the right shoe. Or when a drop of water falls on a shirt that is not supposed to be there and therefore a whole outfit which has to be the same shirt and pants with no labels or wrinkles in it has to be changed for the tiny drop of water that is now a spot. Tantrums over the same kind of shoes I had to buy every time his feet grew. Tantrums over getting his hair trimmed and the cut pieces of hair that could potentially fall on his face. Tantrums over anything getting on his hands or feet.
The hours spent in the bath calming him down with warm running water… massaging his feet or scratching his back. (Which, by the way, I am doing right now as I type this) I am sitting here, with his foot in my hands now, thinking to myself. Would I change him? No. I only wish things were easier for him.
I actually had a point in time, where the seizures took over. Where zane started having seizures closer and closer together. And so much so, we were admitted to the hospital where time stood still. Zane was having seizures every 5 min then down to every 2 minutes. We were trying test after test and drug after drug to try to get answers and calm his brain. As different specialist brought their opinions, diagnosis, and options to us… one in particular is something no parent wants to hear. The doctor says “we feel the only option, is to open the skull and remove the half of the brain affected by the seizures.” As I am sitting there feeling like I am at the end of a dark tunnel and the doctor feels a world away…. The words continued to echo. Remove half of the brain.
Remove half of the brain…. I felt then like I was floating in the air looking down at all of us sitting in the room. Zane wrapped in blankets in my lap, me looking down at him with tears in my eyes, my husband in the chair next to me, looking at the doctor. The doctor standing above us with hands folded in front of him waiting patiently for our response.
I love his brain. I love his brain. I love his brain. I don’t want to change him. I love exactly who he is. Don’t take my sons brain.
Over and over I said this until finally I was back in my body and said it out loud. My husband and the doctor both looked at me. My husband took my hand and said not to worry that he wouldn’t let them do anything of the sort.
In that moment, I realized. No matter how hard the road we travel is, I would never change the path we are on. Zane brings so much to my life and teaches me so much. He has given me strength i didn’t know i had and love that i didn’t know was possible.
From that moment on, I fully accepted my responsibility as an autism parent. A tiger mom, an advocate, a leader, a follower, a beacon, a resource, a sponge for knowledge. A shoulder to lean on, a listener. A mom who understands. A friend.
Now you know. Well, kind of. Now you know what lit the fire within me. The fire that burns bright and took me into this chapter of life with all my cards on the table.