Fighting for Joseph (Part Three: Saved)

This is the last of three blog entries that will focus on my 9 year old son, Joseph, looking at our journey through his autism diagnosis and how God held our family in His hand as we fought for our son.

When I walked into the doctor's office with Joseph, I wasn't looking for reassurances. I was done with, "Everything is fine." Something was wrong and I wanted to know what it was and what we could do about it.

It's amazing how far we have come in diagnosing autism in the last six years. Now there are screenings and evaluations that take place right within well-baby checkups starting as early as fifteen months. Back then, there was just the hunch of parents and the hope that the doctor believed them.

Our doctor believed us. Walking in her office I felt like I had stumbled into the eye of the storm. I didn't have to convince her that there was something wrong. She didn't try to tell me a hundred reasons why my observations were ridiculous. It was such a change from what I had gone through with almost every person who cared about Joseph.

Smiling sweetly, she watched as I lifted him on the table. He was still clutching a bead toy from the waiting room floor because I had known better than to try to pry it from his fingers. "Hello, Joseph," the doctor said.

There was no response. Joseph continued to spin the beads along their wires as if neither of us were in the room.

The doctor tried several more times before turning to face me. "There is definitely a problem," she said.

How odd that her words made me want to shout with joy. It hadn't all been in my head, it wasn't me trying to make something out of nothing. And where there's a problem, there's a solution.

She set us up with Birth to Three services, which transitioned quickly to Early Childhood. Joseph had turned three shortly after the appointment, and as we waited for further testing from the doctor, I met with the special education teachers that had come to our home to evaluate him.

At some point in the weeks of testing, I had confided in a friend. Expecting the usual response, I was surprised when she nodded her head in agreement. "Have you ever thought it might be autism?" she asked.

Autism? Sure, I had considered it. But just as quickly I had discarded the possibility. Joseph did so much more than sit in a corner and rock mindlessly, and that was the face of autism to me by that point. Plus, autism was a lifelong disorder. Our doctor was going to find the people who would make Joseph better. It couldn't be that.

So when one of the teachers took a deep breath and told me that they had decided that Joseph fell under the educational category of autism, I bristled.

"Okay, then tell me this," I said, "Isn't it true that if a child with autism was given the ability to speak perfectly, that he would still have it?"

"Yes," they all responded.

"Then you tell me what it is about my son besides his speech delay that makes you think he has autism," I challenged.

It was to be the last sentence I would utter in the world of darkness I had been in for over a year. As papers flew around the table, they pulled out a list of criteria for the diagnosis. Speech was only one of five sections. Joseph qualified under every single one.

"Oh." That was all that I uttered for over a minute. The clouds were parting for me. Everything they had showed me: repetitive behaviors, social delays, obsessions and preoccupations, meltdowns, meaningless speech repetitions; they all fit together to form what my life had been for more than a year. Autism went from being a stereotype to a complete world that definitely included my son.

I cried all the way home from the meeting, but the tears were not from sadness. I was so relieved to have an answer, and so grateful for the team that showed me that there was a plan to help bring Joseph out of himself.

I won't tell you that there was never any grief, because there was. Sometimes there still is, even though my son today is nothing like he was back then. But for that night, I only felt incredibly grateful that God had brought me through the forest and back into the light of hope.

There have been many times in my life where I have felt God's arms carrying me, but that period was the longest. In the nights when I couldn't imagine waking to go through one more day, He was always there.

That day began a long series of testing, therapy, and appointments that would take much longer to write about than I have here. We began an intense regimen of Greenspan's Floor Time therapy that included 8 to 10 twenty minute sessions of encouraged social interaction a day. When we started, Joseph could only sustain seconds of contact. Today he will talk to you for hours.

God's hand was all over our journey. A pediatric neurologist chose Joseph for her long term case study, giving us coveted one on one time with her as she trained me to enter Joseph's world. We had the opportunity to bring a team of therapists into our home thirty hours a week for three years. An amazing lady stepped forward when she heard that we couldn't attend church because Joseph's needs were too immense for the Sunday school program, and she personally watched him every Sunday for many years. An entire Special Needs Sunday School program was then developed to help other families in similar situations, where a team of people faithfully donate their time so that my family and others can worship together. Joseph was blessed in school by two teachers who not only worked with him intensely, but also loved him personally. In a world where people sometimes struggle to see God's influence, we watched as one of those teachers chose to move with him from Kindergarten to First grade, and then a year later, to Third.

Probably the biggest lesson I learned came when Joseph was seven. We were sitting in the parking lot of the school that Kahlan attended, waiting for her to be done with her day. At that point Joseph was getting better with talking with us, but it still came in short bursts and in his own timing.

Out of the blue, Joseph asked me why Jesus died and what it meant to be a Christian. The words that formed that question were a miracle in themselves! As I answered his questions, he asked more. For a full twenty minutes we talked as I explained the answers to questions like, "What happens when we die," "What happens to animals when they die?" "Will I see you there, Mommy, if you die first?" He also asked if there would be a time when the people who had died and gone to heaven would return to earth.

My little boy who still struggled with communicating his basic needs was asking complex questions that most typically developing children his age hadn't yet wrestled with.

He gave his life to Christ that day in the van. As he prayed, I apologized to God. Even with everything He had done for us, I had decided that Joseph becoming a Christian was too big for my little boy. How could he ever understand?

Somehow in thinking that Joseph's ability was small, I forgot how big God is.

Today, as Joseph turns nine years old, all I have is gratitude. My son has been blessed with a vocabulary that now tests above grade level. He can read well, devouring Garfield books in hours. His faith continues to grow, and his sense of humor keeps all of us laughing. Most amazing of all, he can explain to me what autism feels like. He has told me all about the "movies" that make him sometimes struggle to respond to us.

He asked me one day if I have autism. When I told him that I didn't, he looked sad. "You mean you can't see movies in your head?" he asked with disappointment in his voice. "I'm so sorry for you, Mom."

Sometimes I forget the intensity of the pain and bleakness of those first couple years. Never have I forgotten that God carried us through them.

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Thank you so much for reading through Joseph's story. For those of you who are interested and haven't already seen the videos, please feel free to watch a fifteen minute video that I prepared back in 2004 to thank Joseph's Early Childhood teachers. The movie contains text, pictures, and video that documents Joseph's regression and our journey through autism. It works best in Internet Explorer, and can be found here: Fighting for Joseph Movie

A five minute update movie was made in 2006 to show his further progress. There is a short "interview" with him at the end. :) Joseph's Update Movie