As I reread over Cheryl’s words, my heart breaks again. God has given her a strength unknown to many, to most. Let’s continue John’s story. (If you missed Part 1 yesterday, click here.)
Within three months I was starting to worry. The autistic like trance I had seen John slip into would be repeated over and over, out of the blue with no warning. It would last only a few minutes and then the happy go lucky toddler would come back to play. I said nothing to anyone, until the morning his preschool director called. She asked me to come in and sit outside the classroom door and watch what John was doing. I told her I knew, he was going into some kind of spell and loosing contact. We talked as I watched John hide under a table and rock and cry for a few minutes.
“That’s autism.” I said slowly
“Can’t be, I mean he was not born autistic.” She said
“I know, but that’s what that is, something has caused it.” I said.
“Well I never heard of that, but it’s getting worse and more frequent here, and he is loosing his speech.” She said staring into the room and not looking at me.
“I know, I just don’t know what to make of it.” I said back, also staring straight into the room and not looking at her.
As the fall days grew colder and the holidays were near, John got sick. A round of antibiotics helped him recover from illness, but he seemed to be even more distant and lost as each day passed. He had gone from saying “Mommy, Thomas the TANK!” to a slight “Thomas” as we crossed the rail road tracks near out home. I tired to put my time into planning for Christmas and keeping life as normal as possible for my family while my heart was screaming out that something had gone wrong with my little boy and I needed answers.
I will forever believe that God gave us Christmas day 1994 as a gift from him, a day to remember, a day I would record and save the last words John would ever say. That morning John woke up like any happy two year old and circled the Christmas tree looking at the gifts Santa left during the night. With great enthusiasm John went after race cars and books, he tore into gifts and chided his brother with the ever important boundary line of “THAT’S MMMMMIIIINNNEEE!” We were for a few hours, a normal family. At one point I even remarked to my husband that whatever had been an issue with John over the last few months was gone, and we sure had our boy back. Forty eight hours later, and he was gone for good.
John had a slight seizure while sitting in his Father lap the day after Christmas. So slight had I not been watching, I would have missed it. John was running a low grade fever and when we made a trip to the doctor that day the seizure was dismissed as febrile, don’t worry lots of kids have them. But John was not just sick, he was glassy eyed and made a buzzing sound non-stop. I tired hard to get him to speak but when he did, it sounded like garbled letter sounds. Nothing was recognizable. John got over a viral infection, but John, the boy we knew, was missing.
January is always cold and grey and this year of 1995 was no exception. My heart grew heavy as John no longer spoke or did he seem to be connected with us most of the time. Everyone around me dismissed my worries or made light of the situation, everyone but his preschool teacher and director and my best friend Kim. They knew and I knew, the boy John had been in September when school started was not the boy he was now. To make matters worse Johns diarrhea came back with a vengeance. Nothing I did helped him. I started making phone calls in search of medical and education help for John. I wanted some answers as to what had happened and I wanted a plan to get him back.
If you’ve experienced something similar, I’d love for this to be a safe place for you to leave your comments.