by Bernita Engleken
Twenty three years ago, on April 23, 1981, our sixth child was born six weeks
prematurely. We were told within the hour that Steven had Down Syndrome and that we should put him in an institution and go on with our lives. He was in an incubator for the next week. We had five teenagers who had anxiously awaited the birth of this new baby. I felt that I had failed everyone.
Telling the teenagers became the difficult job of my husband. As a new mother, just having gone through a traumatic delivery, I was in no shape to take on that task. It was my job to call the grandparents, my siblings and my husband’s siblings for support. The next afternoon, in marched all of the teenagers to give me lots of hugs and to meet their new brother. Our lives went into motion. Nurses were much more encouraging than the doctor who had delivered Steven had been.
Muscles are underdeveloped in children born prematurely, and there is also low muscle tone in children with Down Syndrome. I was determined that he would nurse, as all of the other five children had done. It took seven months before he developed the muscles to completely nurse and be able to maintain his weight. It was a very, very slow process. Each time I nursed him, it took forty five minutes to an hour. I had to then force feed him with a bottle that I would slowly put pressure on, carefully making sure he did not choke. Our wonderful pediatrician continually encouraged me by saying “Keep nursing him. You are helping him develop the muscles for speech later.”
I called everywhere, while I was in the hospital, trying to find a developmental pre-school for him to attend as soon as possible to begin working with muscles, expressions, understanding, learning to use his arms and legs, and developing the muscles to hold up his head. He began services at the age of six weeks. At first, it was an 86 mile round trip, 3 days a week. The next six years included hospitalizations, respiratory infections, ear infections, pneumonia and a whirlwind of events. Leaving the place where he had such caring teachers, respiratory therapists, occupational therapists, speech therapists and true friends was very emotional, but he was ready for the public schools. We moved to a larger city for better services, but nothing came easy. Advocacy training was something we began to learn from day one. We were also a part of a support group that we attended with other parents, and we attended Families Together weekends.
We did not accept what the school district offered, but instead insisted that an Individual Education Plan be developed to meet Steve’s needs. Elementary school was a learning experience for all, but teachers were excited and we worked well together. He succeeded wonderfully. Fear set in as we prepared an IEP to follow Steve to middle school. The principal made it very clear that Steve was not wanted there.
Despite many struggles, high school brought many ups and downs as well. We could never count on any consistency. Steve graduated in 2001 with straight A’s, which he had maintained all through his twelve years of school.
Steve now takes classes at the local Junior college and lives in an apartment with a neat roommate who is 27 years old, very caring, compassionate and has no disabilities. He also is enjoying his favorite pastimes– bowling, being a senior patrol leader in scouts, playing basketball weekly with a group of regular guys, working out at the YMCA, going to dances and doing group music therapy for fun. He keeps very busy!.