By Contributing Writer, Julie McCoy
SPECIAL NEEDS FORUM
I would like to turn your attention to a story about my son, Nolan.
When he was about six months I noticed that he was not developing according to his age. I knew something was wrong but couldn’t put my finger on it. He started waking up in the middle of the night screaming in terror, he would sit in his highchair and his head would drop on the table top with a loud bang! I immediately took him to the pediatrician who rudely explained that there was nothing wrong with my son and that I was a nervous mother!! WHAT?? That of course couldn’t have been further from the truth!! I asked the pediatrician for a referral to a specialist; he refused!! I obtained Nolan’s medical records and on my own and called Henry Ford Hospital for an appointment with the neurologist. I walked out – never to return.
The doctor at Henry Ford Hospital sat with us talking and observing Nolan’s behavior. Within five minutes he had a diagnosis!! A seizure disorder known as Infantile Spasms and mental retardation. You could have knocked me over with a feather!! The doctor explained that Nolan would never talk, walk and require a diaper for the rest of his life!!! He would be a burden and complete care would be needed. It would be best to place him in an institution!! Through my tears of shock and grief I calmly explained I would never give my son up while there was breath in my body. This was the beginning of advocating for my son. I again gathered up medical records and went to Children’s Hospital in Detroit for a second opinion.
We saw a new neurologist who concurred with the diagnosis but felt there was some hope other than immediately placing him in an institution. He prescribed a variety of anti-convulsion medications over the course of several months, yet nothing was working. The doctor referred us to another doctor at Children’s Hospital that was a specialist in intractable seizure disorders. This doctor, a woman, had Nolan admitted to the hospital to administer mega doses of a particular drug. Once we were released I took him home to continue the treatment. This particular medication needed to be refrigerated and vigorously shook prior to administering. I did everything according to the doctor but to no avail, he continued with his drop seizures. I scheduled an appointment to confer with the doctor. I explained how the seizures had not subsided. To my horror, the doctor promptly accused me of not shaking the medication properly or that I was not really giving it to him!! I responded, shaking with rage yet very controlled, that perhaps the medication was not working and not the right medicine to prescribe. The doctor very unprofessionally said she was no longer going to deal with me and walked out of the room. The nurse and I looked at each other. I could tell she was taken off guard and embarrassed. I again demanded Nolan’s medical charts and records of all the tests and walked out, never to return.
That is when I met a family that was driving to St. Paul, Minnesota for treatment for their daughter for a seizure disorder. In the early 1990’s Michigan did not have a pediatric neurologist specializing in seizure disorders. So I packed up Nolan, all his records and made the trip to St. Paul, MN.
Nolan and I met with the doctors and he was admitted to a specialized pediatric epilepsy ward. Doctors and nurses were very kind and all decisions of treatment included my input. This is where I learned more about the brain than I ever dreamed. To give you the condensed version, we had tremendous success over the course of sixteen years. It was not easy! Nolan underwent seven brain surgeries with the final surgery involved removing the right hemisphere of his brain. The motor strip of the brain was left intact in order for him to remain ambulatory, or able to walk. The surgery left some deficits but Nolan is a walking miracle. For those of you that have met Nolan, you would never suspect that he underwent so much in his young life. With the consistent help of family, friends and school, I (we) have raised a very unique and wonderful young man. It truly does take a village to raise a child.
This experience taught me many valuable lessons and left me wondering, Why would the professional field, and people in general, be so unfeeling when parents are going through the worse nightmare of their life. No one wants a child with Special Needs to endure their affliction and a little understanding goes a long way when you are emotionally in pain. I, also, want parents of children, not just with special needs, to go with your instinct. Doctors are not gods, and parents know their child better than anyone else. You are the ones that must advocate for their care in every aspect of life. Once you give them those roots and care, you let them fly to test their own wings and become advocates for their own future children.
An Update on Soaring Dreams Inc.:
When you get knocked off your horse the best course of action is to get up and get back on.
This is how I feel about the progress of the Resale/Thrift Store for Soaring Dreams Inc. The building I inquired and wrote up a proposal for never came to fruition. Hence, I rented a storage unit and I can now park in my garage!
Good news, though, I have been approached by an established non-profit corporation that is interested in partnering with Soaring Dreams Inc. We have a meeting set up this week that will determine if we are compatible and our goals are similar. This is a ray of hope for us!!! There will be a follow up article with the results.
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Julie McCoy is the mother of an adult son with Intellectual and Developmental Disabilities. Now retired, she has worked in many different fields, and holds a Bachelor’s degree in Business with a minor in Human Resource Administration through Concordia University. She also worked as a substitute teacher, requesting Special Education classes. She is involved at the state level in an Advisory Implementation Group comprising 50 other individuals from within the state working on a mandate from the federal government called Home and Community Based Service Waiver or HCBS waiver. This waiver comprises of moving persons on Medicaid and are I/DD from specific segregated facilities to the greater community. Her goal is to establish a location that will not only serve the community, but will strengthen the abilities of, and bring recognition to, one of the most vulnerable populations in our country.