“David also loves going to SOFT conferences with us every summer!”
David Roozeboom, Partial Trisomy 3, Oskaloosa, IA, 6/16/1984
I had a normal pregnancy with David and we had no idea what lay ahead of us. David was born approximately 3 weeks early due to my high blood pressure. The doctor started my labor early due to preeclampsia. After many long hours of unprogressive labor, David was born by c-section. He had very low APGAR scores of 1 and 2. David was taken from the OR before I heard him cry. While I was still in the OR the doctor told me that David had a bilateral cleft lip that could be corrected with surgery. We stayed in the hospital for 7 days, which wasn’t too abnormal 26 years ago. While we were in the hospital a local family who had a child who had had a corrected cleft lip surgery came to visit us. They brought before and after pictures of their son’s surgery. At this time we still were unaware that David had any other problems other than a club foot. When David was 7 days old, he was referred to the University of Iowa Hospital and Clinics inIowa Cityto follow up on his club foot. While we were in the orthopedic clinic, we kept being referred to various clinics because the doctors kept finding abnormalities. The otrho clinic found that he did not have a club foot. They felt it was just the position he was in while in utero and would eventually fix itself with some stretches. We went to the cardiac clinic where they diagnosed ASD, were seen in ENT to look at his bilateral cleft and cleft palate, and finally genetics. Genetics suspected a chromosomal abnormality and did some testing. They diagnosed David as having partial trisomy 13. The doctors gave us a very rim prognosis that most children who have partial T13 never make it to their first birthday and many die before they are 6 months old. He had to stay in the NICU so that they could put him on medication for the hole in his heart. After a year on medication, the hole closed on its own and he didn’t have to have heart surgery. We had support from our family and friends, but everyone was in shock over the diagnosis we received. I worked in the business office at our local hospital and the doctors allowed me to go to the doctor’s lounge and research what I could find about trisomy 13. However, the internet was not in existence, at least not in our area, so information that I found was very limited and not encouraging. Many years later when better chromosome testing was available, David’s diagnosis was changed from partial trisomy 13 to partial trisomy 3 when the test found that the extra material attached to chromosome 13 was actually material from chromosome 3.
Due to David’s low APGAR scores, he was considered at high risk for developmental delays and was referred to the Child Health Specialty Clinic about 25 miles from our home. The Nurse Practitioner was very knowledgeable and referred us immediately to our local Area Education Agency (AEA), which served children ages birth to 5. They sent a early education teacher to our home to work with David when he was 6 months old. She came 1 hour a week to help him work on meeting his developmental milestones. The AEA also provided an OT and PT who came to the home 1 hour a week. The OT worked on his feeding issues and PT worked on his motor skills. When David turned 3, he graduated from in-home workers to attending the AEA preschool 4 mornings a week. The big bus came to our home and transported him to/from the preschool. The school district we were in had no appropriate school programming to meet David’s needs, nor were they interested in developing a program. So their solution was to bus him to/from a school district 25 miles west of us where they had already established a program. David began attending this school when he was 4 years and 9 months old. The teacher in the classroom was so good with the kids and worked very hard to set up an appropriate program and document progress. This classroom was self contained except for music, art, and physical education, where he was integrated with his peers. This program closed for out of county students when David was 17 and our district still had no appropriate programming for him. So they bussed him to another district 25 miles south of us. This was a much larger district and the teacher taught more as than a job than because he loved what he was doing. David graduated from high school when he was 21 years old in 2005.
One thing we always struggled with throughout David’s lifetime was finding appropriate child care for David. While I would have loved to stay at home, this was not really an option for us. We found a child care provider who worked out of her home and cared for several children. She was very good with David and her family came to love him. However, when she had to go to work to help support her own family, we had to find somewhere else for David to go. I was lucky to have an employer who would allow me to flex some of my time during the school year to be able to stay home with David during days out of school, snow days (which we have a lot of in Iowa!), etc. However, the summer was another story. We weren’t getting any younger and needed to plan where David could go when we were no longer around the care for him. Our parents were older and already unable to be responsible for his care. His sister, Megan was still a child herself and while she loves him dearly, it would be unfair for us to assume that she would take David and care for him the rest of his life. There was an ICF/ID (Intermediate Care Facility for Intellectual Disabilities) called Diamond Place that was just across town and when David turned 18 we decided that we needed to put his name on the waiting list. These lists are usually quite long sometimes 10-12 years. Well after 6 months, there was on opening for David. One of the individuals living at Diamond Place was moving in about 6 months. We really weren’t ready for David to move out of home yet and were about to turn it down. However, they were willing to ease David in to the home by providing adult day care for David during the summer while I worked and he would be able to continue attending school even while living at Diamond Place. This worked out well for everyone. The staff got to know David and David got to know the routine there. It also allowed us, as parents, to adjust slowly to allowing others to take care of David and teaching them what he liked and didn’t like. However, the day we officially moved David out of our home and into his own home was one of the most difficult days of our lives. David adjusted well to living independently there. He goes to adult day programming with other individuals who live at his home Monday through Thursday mornings and he shreds paper at my office one day a week. David loves routine and seems to know when it is Sunday and we pick him up to go shopping and then he comes to our house for the day. However, he doesn’t seem to mind when we also go get him on the spur of the moment and go do something out of his routine. He loves going with us, but is always happy to be back in his own room at Diamond Place. David also loves going to SOFT conferences with us every summer! He seems to know that he is with his “family”.
David is a very friendly guy. He loves music! Any kind of music and anything that is musical. He has a wide variety of musical toys and he also likes vibrations. So any toy that is musical and vibrates is a plus. David is nonverbal. Communication has always been one of David’s goals that we could never accomplish. We tried many, many different communication devices, but didn’t really succeed with anything. However, he will let you know if he needs one of his musical toys wound up…he’ll throw it in your lap, or at you, or will grab your hand and take it to his toy!
David is able to walk independently. However he was 10 before he took his first step alone. He prefers to be up and walking instead of being in his wheelchair. However, he fell and broke his hip in 2008, which has healed nicely, and he lost his vision in 2009 due to detached retinas in both eyes. He now needs someone beside him to guide him while walking and he can’t walk very long distances at a time.