My son Jacob cannot speak. I am his voice. I am his biggest advocate and will fight as hard as I can to get him what he needs.
My ongoing challenge is convincing people that Jacob understands what goes on around him and reminding people that there is a person inside his physically challenged twelve year old body. And recently, one of Jacob’s sisters decided she was going to make sure people know that kids like Jake deserve better treatment.
At ten months old, Jacob was diagnosed with Pelizaeus-Merzbacher Disease (PMD), a degenerative neurological disease that impairs his ability to sit, speak and eat. The first few years of Jacob’s life were filled with tests and heartbreaking results. We were told that he would never walk, swallow or live to be a teenager. I would enter each doctor’s office with a knot in my stomach, prepared for the inevitable crushing news about something my son would not be able to do.
As the years went on, I grew accustomed to listening to the various prognoses with one ear.
Although I do not have a recognized medical degree, I have earned a PhD in Jacob. I understood that his disease is rare and most medical professionals have not encountered a PMD patient in all their years of practice. I knew their gloomy reports were not accurate, but what did I have to do for them to listen to me?
When Jacob was one year old, he had electrodes placed all over his tiny head, wires transmitting his brain waves to a computer. I held my terrified baby on my lap, carefully supporting his wobbly head, while he screamed as images and lights were flashed on the screen inches from our faces. The test was conducted to measure how efficiently he processed visual information.
Several weeks later I sat fidgeting on a hard chair in the sparsely furnished office that doubled as an examination room while I waited for the doctor to explain Jacob’s visual acuity. As the pediatrician opened Jake’s beige file, filled with three inches of medical reports, her eyes filled with tears and her voice lost the confident, professional tone. She gently explained that “the tests reveal that Jacob cannot see.” I was stunned and did not know how to respond. I knew he saw me because he smiled when I positioned myself in front of his often-expressionless face. I was told that my curly haired son was blind. The test was wrong, but who would listen to me?
As Jacob grew, he struggled.
His various test results were inconsistent with what I believed he knew. If he really was blind, why would he scream in fear every time a giraffe appeared on television during the Baby Einstein video? If he didn’t understand anything, why would he start to squirm in fearful anticipation shortly before the scary giraffe portion of the movie?
When my little guy was sixteen months old and a mere twelve pounds, I enrolled him in a program at a school for children with special needs. The twice weekly Infant Intervention program consisted of physio, occupational, speech and music therapy. These mornings were filled with activities tailored to challenging Jacob’s abilities, helping him develop new skills and assessing his needs. Everyone in the room knew to avoid bringing a yellow toy close to Jake because that colour elicited ear-piercing screams from him that would only subside when the item was removed from his line of sight. And according to the doctors, Jacob was blind.
As the years passed, it was easy for a professional to administer a test and tell me that Jacob does not comprehend, that his ongoing screaming during the exam was evidence of an uncooperative, uncommunicative child. But those who spent time with Jacob knew that his infectious high pitched giggle when he heard the punch line of a joke was a constant reminder that my son understands what is happening around him.
He does not like to be treated as if he does not know what is going on.
When a teacher administered a standard assessment suitable for toddlers to six year old Jacob, he became annoyed that she was ignoring his true abilities. He purposely gave false answers, as if to say, “Of course I know that the object in your hand is a pencil but since you insist on asking me such a ridiculous question, I will tell you that it is a truck.” That is why he started laughing after each incorrect response.
As Jacob grew, so did his comprehension. He laughed at the punch-line of funny (and some not-so-funny) jokes, his yes and no responses became more consistent and he learned how to use a specially adapted communication device to actively participate in his world.
One of my daughter’s pet peeves is hearing people talking to her big brother as if he were a small child.
Jamie’s fists clench and her cheeks redden with the sheer effort of holding her tongue as she listens to well-intentioned people talk in the loud, slow and simple language often reserved for toddlers and aging grandparents.
Our family is far from typical. Sierra and Jamie have said that it’s not easy having a sibling with special needs. Our family does not travel together, we rarely go to a restaurant as a table of five and we’ve only been to one movie with Jacob. But they will acknowledge that they love their brother and enjoy playing with him, reading to him and including him in their play dates with their friends.
Last week, as Jamie, Felix (Jacob’s Skilled Companion dog) and I were leaving the hospital after visiting Jacob, we noticed a girl in a wheelchair. This little girl, who was around Jamie’s age, was steering her wheelchair in circles and was waving her right arm in the air excitedly. Realizing her exuberance was because she spotted Felix, we walked over to the girl and her mother. After asking her if she wanted to play with Felix, Jamie helped her touch Felix’s head and assisted her in giving our dog a little snack.
As we walked away, Jamie said she hated the way people were staring at the girl as she was flailing her arms. She wondered why they don’t realize that she is just like any other kid. The more we talked about it, the stronger her conviction became about wanting to let kids know that just because someone looks different, it doesn’t mean they are any less of a person. They have the same thoughts and feelings as someone who is able-bodied. She vowed to do something significant to raise awareness about the similarities between kids with disabilities and “typically-developing” kids.
Look out world, Jamie is a very determined ten year old on a mission!
This post was originally published on hermagazine.ca