I sat for what seemed like hours staring at the small stack of papers the doctor had given me. My tears had already stained many of the pages. I stared at the word Autistic, it stood out among the rest. I ran my finger along the printed word. Autism, Sensory Integration Dysfunction . . . the tears rained down.
We’d waited so long for a diagnosis, so long for someone to listen and understand. The tears I shed were not in sadness or despair, I was happy, near euphoric quite honestly, I was excited about what this long-awaited diagnosis meant for my son.
He will be 26 this year, I knew the moment our eyes first met there was something special about him. I realize all mothers could make that claim, but somehow I knew something was different. As time passed, it became more and more apparent there was more to my feeling than just a feeling. He was not meeting the milestones he should have been meeting. He was so different from other babies his age.
Twenty-plus years ago the Autistic Spectrum didn’t seem to exist. The word Autism kept coming to me, but the doctors dismissed the notion. When he was two, he was enrolled in a special needs preschool through early intervention. He was diagnosed as learning disabled with Sensory Integration Dysfunction. Later they added Pervasive Developmental Disorder – Not Otherwise Specified. He began speech and occupational therapy and I saw change and growth, but there was still something there, right beneath the surface.
He began speaking shortly before he was five years old, before that it was mostly echolalia sprinkled with random words and phrases he was learning. When he began grade school his services stopped. They said he did not have a qualifying condition to merit the services such as continued speech and occupational therapy he so badly needed. PDD-NOS was not specific enough.
He was listed as learning disabled and placed in a mainstream classroom with modified work. I watched my son slip away and I began to fight. All the while, teaching him and working with him as I always had, but I fought the school, I fought the district and finally, in the fourth grade he was placed in a special education class and he began to learn.
It wasn’t enough though. They didn’t understand him. They forced him to make eye contact he was unable to make. They forced him to suffer through an ever-changing and unpredictable schedule and punished him when he would retreat into his own little world. I once again brought up Autism. He can talk they said, he doesn’t have Autism. He is smart they said, he can’t possibly be Autistic.
My younger son was having many of the same difficulties and was beginning speech therapy. The school psychologist suggested I had Munchausen’s by proxy and urged me to seek help. I was furious. I made an appointment with yet another doctor and within a week my prayers were answered. By God’s grace we walked into the office of a young doctor who had recently attended a seminar about Autism.
He knew there was a spectrum, he new about Aspergers, he knew how to diagnose my son and he knew what we needed. In my heart I knew he was autistic, now someone else finally understood. I broke down in his office. I tried to hold it back but the flood of emotions I’d so long waited to release could not be contained. I praised the Lord right there in that office and have been praising him in thanks every day since.
With this new and proper diagnosis my son was placed in the perfect classroom setting, he was given back the therapies he needed and deserved. He began to grow and learn once again. There would be more battles with the district through the years, but I was relentless in my quest to see he had everything he needed to thrive.
I eventually fought to remove the Aspergers diagnosis in favor of Autism, technically, he fit the diagnostic criteria regarding speech development for Autism, it proved to be a magical word and the educational and therapeutic doors which had remained closed until that point, suddenly opened.
He is a wise and wonderful young man, intelligent and witty. He most definitely walks to the beat of his own drummer and he is perfect, just as I always knew he was.
The day my son was diagnosed with autism was one of the happiest days of my life. Two of my four children have autistic spectrum disorders, I have been blessed beyond measure, it is an honor to be their mother . . .
Crystal R. Cook