NORMAL is just a setting on the dryer
By Lucy Berry
We all know what it's like to be told by a Dr. that your child will be not be normal but we're not sure exactly what's wrong with him/her. That's the way it was almost 19 years ago when Troy was born. He was 7 ½ weeks premature and had 2 cardiac arrests within the first 24-36 hours of life. Tests were run and we were given the worst case scenario, Troy would never walk, talk, see or amount to anything but a vegetable. We were even told by the Dr. to put him in an institution and try again since we were young. Troy spent 5 ½ weeks in the NICU at Children's Mercy and during that time my husband, Dave and I spent countless hours deciding what to do. We already had a 6 year old son at home and our thoughts went from how can we raise a child who has so many needs to how dare they tell us to put our son away and give up hope. We chose to bring Troy home with all his needs and do our best, with our families and faith to help us. While we were in the hospital we were given a referral to First Steps, which was a pilot program at that time to help families of children with special needs.
We came home with an apnea monitor to let us know when Troy would stop breathing, which would happen often. I got an extended maternity leave to be able to spend three weeks at home with Troy before I had to return to work. The first hurdle of returning to work was finding a day care for Troy. Not easy to do with a child who was on an apnea monitor. We ended up finding a person, who was willing to try it, but it only lasted 2 weeks and then we were back to square one. My husband worked nights so we decided that he would take care of Troy while I went to work. This got to be more than he could handle as he wasn't getting enough sleep and my job was giving me too many ultimatums about extra hours and since I couldn't fulfill their wishes I was fired.
Troy had what seemed like millions of Dr and therapy appointments as we were trying to find out what was wrong with Troy since he was alert but not doing all the things that babies do. We could be found in neonatal, pulmonary, developmental, PT, OT, Speech, ophthalmology, neurology and surgery clinics plus the pediatrician's office. Finally at 6 months of age we were told by his neurologist that Troy had spastic quadriplegic cerebral palsy. When I asked how did this happen, the Dr. replied, "He didn't know." Which I found out later was a common response for children with CP.
Troy spent a lot of time in the hospital with eye surgeries as he was born with crossed eyes which are a family trait. He also had to have hernia repair for bilateral inguinal and umbilical hernias. Because of Troy's time in NICU on the vent his lungs were compromised so he had many admits for pneumonia.
As time went along Troy's head continued to grow faster than his body so the neurologist sent us to a neurosurgeon. He studied Troy and then asked us to taken him for a CT scan. It showed that Troy was a low pressure hydrocephalic and didn't need a shunt but the more the neurosurgeon followed Troy the more he questioned the need for a shunt and at 18 months Troy had a shunt placed. We had many revisions until it worked the way the neurosurgeon wanted it to. Once the shunt was placed Troy started showing more skills and the Dr was impressed. During this time Troy had been on a waiting list for Sunshine Center thanks to the help of our First Steps case manager. After Troy's shunt was placed his name came up on the waiting list and he was able to go to Sunshine Center.
The timing was perfect as he was able to get the much needed therapies right on the spot and not have to travel to Children's Mercy three times a week. Not did Troy benefit from this but so did my husband and I as we had other parent's to share with and not feel so lonely. It was also during this time that we were introduced to Easter Seals and their Lekotek Toy Lending program, this was a program that would help you find toys that your child could use for development or adapted with switches so your child could use them. You would borrow the toys for a month and be able to try them out in your own home. It was wonderful but one more appointment thank goodness we could do some of these in the evening.
Troy continued to thrive and improve at Sunshine Center and we had also gained another case manager this time with the KC Regional Center. When he turned 3 the State of Missouri decided that children from 3-5 years of age should be moved to the Department of Education and not the Department of Mental Health. So we made the transition but not without a lot of concerns and road blocks. The school district wasn't able to provide the therapies that Troy needed because according to them they weren't educationally necessary. So the battles began...and eventually after countless meetings with the Superintendent, Director of Special Education and school staff we were able to come to an agreement. Troy would get 2 of his 3 therapies at school another obstacle to overcome was the fact that Troy is incontinent and needed to be able to be changed.
The grade school years came next with many struggles and biases to be overcome. There were teachers that didn't want "that kid" in their classrooms, especially in the music class which is one of Troy's passions. Troy had a personal para help him in his mainstreamed classes with his belongings, getting his backpack off of his wheelchair, putting books away, little things to help make his day easier. The bathrooms had to be remodeled to allow changing tables for Troy and a Hoyer lift. Troy's sister was born at the beginning of his Kindergarten year. More challenges came with Troy being frustrated that he couldn't ambulate the way his sister or brother could.
When Troy was 8 he was able to join the sports program through UCP. This was so excellent because he was able to be involved in sports with his peers who were facing the same challenges as he was. It was great for the family as well because we were able to meet other families in the same situation as we were.
We made it to the middle school years..5th & 6th are in one building and 7th & 8th in another building...the 5th & 6th grade center was interesting because there were 8 times the students to have to navigate around and special classes including band. Troy was in the percussion section so this meant band concerts. He also joined the honor choir and was in a school play. The staff was wonderful and open to having Troy in the building. However the next building was a different story, they expected the students to be more mature and ready to advance to high school. Needless to say we had some issues with the staff and they had issues with Troy. It was discovered that he wasn't able to keep up with the regular classes and needed to slow down to special ed for core classes and take regular ed for the rest of his classes. Troy again took band, was involved in honor choir and the school musical. Even the counselors didn't know how to handle Troy and his needs so we added to our list of docs at CMH a behavior psychologist. Troy also developed a curvature in his spine so we started seeing the orthopedic doc and fortunately for Troy the curvature didn't require surgery.
High school comes next in our lives with even more activities, school ball games, marching band and competitions, choirs and concerts, and school musicals. It also meant having to show yet another set of teachers and administrators that Troy was a unique person and not just another stupid kid in a wheelchair. We had struggles along the way but the years went by fast. A major struggle was Troy's sophomore year when the school nurse told Troy that he had been nominated for National Honor Society. When Troy went to the advisor to get the nomination papers and was told that it was a mistake that his name wasn't meant to be on the list. Troy came home all upset and so I made a call to the school to find out what was wrong. I was told that because he was a special ed student he didn't qualify. So I researched the national by-laws and found nothing to that effect and called back. I was then told that it was a chapter by-law so I asked to see them and that wording was no where to be found. So Troy became the first special ed student to be inducted into National Honor Society.
Our biggest transition came on May 17, 2007 when Troy graduated high school. Yes it came with struggles and triumphs but it also came with joy and love. Troy's next phase of life will be going to Blue River Community College by using the Access program. He is still involved with the UCP sports program and participates in boccia, wheelchair soccer, bowling, and track and field events. He's taken 2nd place in the Mid America Games Boccia tournament.
Life doesn't always come at you with perfection or normalcy so we make the best of what we are given with what we have. Remember that NORMAL is just a setting on the dryer.
