Walk With Me-Seven
By Carol Englehaupt
By age three, Josh was still not sleeping through the night, but I was functioning better. He still cried when we left the house until we returned, and he’d added a new twist to the crying. He’d begun to object to hearing certain songs.
Silent Night? Cry. Star Spangled Banner? Cry. There were certain other songs that would set him off. I never knew which ones would do it until he’d erupt in loud yells. When Josh cried everybody in a six block radius could hear it. It took me several years before I figured out why these songs were triggers.
In order for me to get more than two hours of sleep, I started playing a radio in Josh’s room at night. My theory was that it would distract and entertain him so he wouldn’t call for me. I discovered one night that the radio station I had on would sign off at midnight with the Star Spangled Banner. And Silent Night, Holy Night triggered the cry because they contained the word, you got it, Night. Any song that made Josh think he had to go to bed, or to sleep, would start him crying.
Hush Little Baby, Jesus Loves Me, the list is long, and when I started up a Junior Choir in church, and eventually took over directing the adult choir, I had to be very careful of my song choices or practice accompanied by Josh’s loud crying became interesting.
At age three, Josh also became eligible for early intervention schooling. He would have to attend LaSalle County Easter Seals. I don’t remember how far but I’m thinking the trip was about 25 miles from home, making about a fifty mile a day round trip. Because the school system we were in was small, I volunteered to drive him. I was surprised to find out they would reimburse me mileage. I really appreciated that check.
I would drop my older son off at school; then drive Josh to Easter Seals with him crying all the way. He would arrive at Easter Seals screaming and they would wheel him right into time out. This went on for several weeks then a most wonderful thing happened.
His teacher at Easter Seals worked with him and suddenly Josh wasn’t crying so much anymore. The secret? Communication. Not us communicating with him, but him being given the tools to communicate back. He learned to nod his head for ‘yes’, and shake his head back and forth for ‘no’. And the crying whenever we left the house finally made sense to me.
At home, Josh was safe and comfortable. He knew us, we knew him. We understood what he wanted, and he could let us know what he wanted. But leaving the house threw him into the big, bad world where he couldn’t move by himself, couldn’t speak his needs or fears, couldn’t make strangers understand. He had no control, or power, over the environment outside our house. My heart aches when I think how frightened and helpless he must have felt.
Easter Seals provided more than a classroom. They had a physical therapist, a speech therapist, at that time they even had a psychologist. Suddenly I had people I could talk to, ask questions to. Easter Seals didn’t just help Josh, they helped our entire family. I’m very grateful for everyone who worked there. I can’t describe the feeling I would get when Josh and I entered the building. They welcomed and nurtured us and I honestly don’t know what I would have done without them.
During those early years of Easter Seals, I was still taking Josh for his three month check up with the developmental specialist. I would take Josh in, sit with him through the check up, answer whatever questions he asked, and cry all the way home. The doctor’s bedside manner was truly awful.
The neurologist wanted to see Josh every six months and he kept pushing me to get a brain scan. Both the developmental specialist and the neurologist wanted the scan. At every check up they would ask me to permit it.
But I’d gained confidence from Josh’s trip through Mayo Clinic. I remembered Dr. Groover’s term, academic curiosity, so one day when the neurologist once again asked to do the brain scan I asked him, “Will the scan change Josh’s diagnosis?” His answer was, “no”. Will the scan make any difference in the medication that Josh takes?” Again, the answer was “no”.
I asked him, “What purpose would the scan accomplish?” He looked at me like I’d grown two heads. “Well,” he floundered about, “you’d know. You’d know what part of the brain was damaged, and how much was damaged. Don’t you want to know that?”
I looked back at him, “No,” I told him. “If it doesn’t serve any useful purpose to Josh, then I don’t want it done. I don’t care what damage was done. I don’t want anybody to point at a scan and put limits on him.” That was the last time they pushed me to get the scan.
The developmental specialist was a different kettle of fish. He showed up at Easter Seals on a regular basis as he followed up on babies that were in the high risk ward at St. Francis. But he wouldn’t see Josh when he was at Easter Seals.
To me, Josh spent two weeks in the high risk ward, he should have qualified. But to the doctor, Josh wasn’t a preemie. He had been a big, two weeks late baby, and thus didn’t qualify for the program. I was even willing to pay the cost of the office visit just to save myself the drive to Peoria and the time lost doing so. It annoyed me that the man would be right there in the same building with Josh, and yet refuse to check him out.
When Josh was four I made one of my trips to Peoria to see this specialist. When the doctor walked into the room he had two people with him. He introduced them as medical students, and asked my permission to allow them stay through Josh’s check up. Of course, I said yes. I then watched this ‘specialist’ proceed to point out the primitive reflexes that still plague Josh to this day. And he used words such as awful, bad, not normal, and Josh started to cry.
The doctor got upset with Josh. He scolded Josh for inappropriate behavior for his age. I interrupted the doctor and reminded him of the comments he had been making. I told him that Josh understood every word he said. He was physically disabled, not mentally disabled.
The doctor basically told me, what did I know? I was just his mother. Then he asked me to step out of the room. Like a fool, I did. I stood outside in the hallway, and listened to him tell my son that I could not come back until he stopped throwing a tantrum.
It takes a lot to make me angry, but once I get there I don’t get over it. When I went back into the room, I dressed my son, left the room, stopped at the checkout desk, and told the receptionist that I would not be back. No way would I subject Josh, or myself, to that sort of behavior ever again. He may be the best specialist in the world, but if he can’t treat a patient like a person, then his knowledge is useless.
I was angry then. I’m angry now. If the man taught me anything, it was to respect my instincts. I’ve learned to stand up for myself, and my child. I’ve lost a little bit of my awe of education; because education doesn’t mean much if it’s not used wisely and appropriately.
I am not just a mother, as if that means nothing, and nobody has the right to demean or dismiss my experience. I was the one spending twenty four hours a day, seven days a week, year after year taking care of Josh. What I knew, and know, has value. Never again would I be intimidated by a degree.
Sad to say, I’ve heard that many doctors are like this one. They think their higher education makes them smarter than anyone else.
It doesn’t. They’re the same amount of smart — or stupid, or insensitive, or whatever — they were before the education. In this one’s case, it was an excuse to be a miserable old man who couldn’t get his pecker up and took it out on the whole world — especially on the helpless, like Josh was.
He wasn’t all that old but he lacked empathy. I don’t know if he couldn’t identify with his patient because it’s more hurtful to feel for them? or simply didn’t possess the ability to understand the other side of the table. Whatever, I learned some valuable lessons from him. But I harbor a great deal of animosity toward his attitude. I relate our experience for one reason. If anybody is going through this, I want them to know their opinion matters. No academic degree makes a person more knowledgeable than a parent. Parents, or caregivers, or whoever is the one taking care of the person, needs to trust their instincts. I learned to never say never. A lot of times we were told that what we needed or expected wasn’t available and we needed to be more realistic. I chose to let my son make the choices and he proved science wrong time after time.