Friday, May 16, 2014
Questions You Don't Think You Should Ask: How Did You Know Something was Wrong...Part 2
These have been difficult blogs to write. It is hard to relive those moments of wandering and uncertainty. It is necessary. I was always glad for people that had the heart to help Isaac but there was a distance. They came in and saw bits and pieces of our lives but they never understood the gamut of our reality. There can be no understanding without honest sharing. That is why I give these blogs...this history...to you.
I was heavily pregnant with Isaac's sister when the doctor first suggested there may be difficulties with Isaac's development. Right information- wrong timing. I have shared in a previous blog how the pediatrician again broached the subject of Isaac's development just hours after I had given birth to his sister. Again, his timing was less than ideal.
Honestly, we knew something was wrong and we sensed the immensity of the problem. There was something not quite right that was hanging over my toddler like a consuming dark shadow. I did not have the power to confront the shadow just then. To have pursued diagnosis at that time would have been to have named the monster and to have released it from Pandora's box and given it power to consume those happy first months of my daughter's life. My husband and I sensed this. We waited. I do not regret that decision.
When his sister was six months old, we pursued diagnosis for Isaac. A friend had called. She was a very close friend who had earned the right of honest conversation. I knew she loved my family. I knew she loved Isaac. She said she had read something about Asperger's Syndrome and it made her think of Isaac. She asked if she could send me a link. I read the information she sent. It did not seem quite right. There was a link on the page to autism. I followed the link. I read the information. My Mama Gut Instinct alerted. I knew. The monster's name was Autism. Sam came home for lunch. I revealed the name. I looked into my sweet husband's eyes as I told him about the characteristics of autism. His Daddy Gut ignited and he knew we had named the monster correctly.
That was it. Autism was the shadow's name and he was now fully unleashed upon our lives. We went to offices. Professionals came to see Isaac at our home. Therapies and early intervention rammed through our door and ripped our lives apart. Our peaceful quiet weeks were now peppered with a barrage of TLAs (Three Letter Acronyms). We spent hours back and forth on the road to pursue Occupational Therapy (fine motor skills), Physical Therapy (gross motor skills), Speech Therapy (for receptive and expressive language) and intensive assessments (psychological, developmental, genetic, educational, etc.).
Sam and I bore up as best we could. He took the financial arena and I became an expert in the education of children with autism. Our home was littered with papers as Sam filled out form after form. For my part, I wore a path down the hallway and to the door as I welcomed therapists of all kinds through our threshold. Daily, we kept the house tidy (not an easy feat with two small children) as we expected visits from early interventionists and behavioral therapists. Together, we were all sucked into this black hole of the shadow of Autism that had overtaken our son and was now intent on consuming us all.
We were exhausted mentally, physically and emotionally. We were collapsing under the strain when we decided to change our strategy. We had been fighting a shadow. We had been trying to rid our son of autism by beating against the wind. Everything we had been doing was important, but we could not withstand it much longer. We redefined the game. All the facts pointed to the reality that autism was pervasive. It was a part of who our son was and we would not eradicate it. Even at a young age, it was obvious that Isaac was severely affected. We made a controversial decision but one that was right for us. We would continue to do everything in our power to address Isaac's needs, but we would see Isaac's needs for what they were - a piece of the family's needs as a whole. We would pursue every therapy that we could afford, but we would not work such long hours that we would miss our children's childhood. We would take respite, and nurture our souls during time spent away from the hysteria of this new world of special needs. We would love our child. We would hold him to a high standard. We would do all that we could, but we would not give up the core of our family to do that.
That decision changed how we lived. We were no longer bound to try every new and expensive therapy. We forgave each other and Isaac with more ease. We were no longer concerned with how to kill the beast of autism. We wanted to contain it and tame it. We wanted to learn how autism affected our son and how best to communicate and interact with him.
The journey was and still is difficult. Isaac has had more hours of therapy than is imaginable. He has progressed but he still has autism. He is significantly affected. We have dealt with more than I care to disclose here but we are still standing together as a family. We still love each other. We are still here. That is to us the most important thing.