To explain the feelings of having a child with a disability, I must start at Jeff’s birth. He was born full term with no obvious deformities or challenges. The actual birth process took a long time, as he was born posterior with his back to my back and had an unusually large head. He took a long time to be able to hold his head up and did not roll over, coo, or make the usual baby sounds. (Names and locations in this story have been either changed or concealed.)
I think I knew from an early age that there was something different about Jeff. His doctor assured me that it was my imagination and that he was fine. That, of course, is what I wanted to hear, so we moved on. A few childcare providers expressed concern. Jeff and I took a class together when Jeff was two. The teacher suggested that we should have Jeff tested, as he was not developing like other children.
At that point, I was pregnant with my daughter, Sarah. I switched pediatricians. I needed someone who would listen to me, which my other doctor clearly wasn’t. The new pediatrician referred us to The Children’s Clinic for an evaluation. Jeff was labeled “Developmentally Delayed.” I was crushed. Crying spells and guilt, as well as fear, consumed me. The specialists were not able to identify the cause of Jeff’s disability. I was concerned about my unborn child. Would I soon be raising two children with disabilities? Did I do something wrong when I was pregnant with Jeff to cause this? Genetic testing did not provide any solution. I reviewed the birth records with my doctor, and not surprisingly, nothing was identified there.
Meanwhile, Jeff was the same little boy after the tests as he was before. He was sweet, loving, and healthy. We discovered a seizure concern, so we added neurology to the list of growing professionals in his life. I started taking him to a speech therapist twice a week. Sarah was developing normally. Whatever this was did not affect her, but therapy became part of our lives. We made quarterly visits to the neurologist, and speech therapy two days a week.
I had no idea what I was doing. I was in a mechanical mode. I functioned by trying to be a good mother. I was scared and tired all the time. I kept comparing Jeff with other children, trying to justify my actions and his development. I read everything I could get my hands on, trying to explain why he was developing the way he was. I kept hoping that I wasn’t the cause. Dave, my husband, had his work and was able to escape the house and my worries. He was lucky, but he also blamed himself as the cause of Jeff’s disability. It was a very trying time. We did our best to support each other and give our children what they needed.
My first introduction to inclusive classrooms and the benefits of allowing children to be children and not just therapy subjects happened during Jeff’s preschool years. Inclusion means being part of something and not isolated from an activity or group. For Jeff it meant learning how to be part of a group. For me, it meant Jeff’s opportunity to be part of the world at large.
What does it mean to be fully included in life, in school? Does inclusion only apply some of the time, or only to some population groups? I asked myself these questions many times as I was raising my son. Was being in a special education self-contained classroom really in his best interest? Was special education a placement or a set of individualized services? I decided that special education was a set of individualized services.
I went to conferences and talked to other parents. Was it important that Jeff be like other kids? Would he ever be like other kids academically? How was I going to convince the district and myself of the benefits of being around typical children?
Jeff was a child first. The things he needed were the same as any other child. He needed friends. He needed success and accomplishments. He needed to feel important and safe.
When writing down my memories of raising my children, especially my son Jeff, I remember what it felt like to see the reactions of others to Jeff. I remember being in the grocery store with him when he was about four or five. He was sitting in the cart, talking away. I was thinking about groceries when a woman came up to me and asked me what was wrong with him. I was speechless. Who asks that question of a parent? I think I said something like, “He has a speech problem.” Later, I thought about what I should have said. “Nothing is wrong with him. What is wrong with you?” It hurt me. It hurts when people do not see what is special about our children. No one asked me those questions about my daughter.
When I think about it, the law that said public schools had to educate children with special needs was only passed in 1976. Jeff was soon to be a pioneer in his own way. When he was in his regular first grade class, he started sitting on his carpet square. He participated in class activities and started verbally communicating. He also started really liking school. He would run out the door and get on the bus without complaint. At the end of the school year, there was a first-grade picnic for kids and parents. The teacher told me, “I watched your son blossom in my classroom.” I was elated. I will never forget that feeling of satisfaction and success.
When Jeff spent time in a regular classroom, he loved it and the teachers were so accepting of him. He had an instructional assistant that would follow Jeff through his elementary school days. The little bit of time Jeff spent in regular classrooms as opposed to the self-contained special ed classrooms showed how beneficial the regular classrooms were for Jeff. He excelled further than anyone thought he could.
Adulthood, getting one’s own living space, making decisions for and having a job in the world are difficult accomplishments for any young person. I didn’t expect my son Jeff to be any different. Getting to that point proved to be a challenge. He needed to go to the community college where the “transition” program was housed for our school district. There was a bus that went from our house to the light rail where everyone was meeting. The district wanted to pick Jeff up at our house in a school bus, and bus him to a central meeting place where he would meet the teacher and other students, instead of letting him take a public bus. I had to talk the teacher (and myself) into driving Jeff close to the bus stop and watch Jeff cross a street and get on the bus. I must admit, I walked there too. The teacher and I kept our distance so Jeff could feel independent at this task.
Letting our young adults make mistakes and letting them learn from those mistakes are difficult tasks for any parent. It is even more difficult when one’s young adult has a disability. Jeff became very independent at riding public transportation and was soon able to take many routes with much confidence. He admitted he once fell asleep on the train, finding himself well past his stop, and having to get off the train and get back on track. He figured it out by himself!
My husband and I worked very hard to include Jeff in his community. We tried to organize as well as participate in activities such as: Boy Scouts, traveling, grocery shopping, and public transportation. Jeff participates in Special Olympics (a sports-oriented group for people with developmental disabilities) and Trips Inc. (a travel organization for adults with intellectual disabilities). Although most of Jeff’s friends are other adults with intellectual disabilities, he does go to restaurants by himself, movies with friends, and is in a bowling league. Jeff lives and works successfully in his community.
ABOUT THE AUTHOR:
Evelyn Lowry’s favorite job is being a mom of two, now grown children. She has a degree in Elementary Education and taught preschool for a year. When that didn’t seem to meet her career goals, she went back to school and became an x-ray technician. She did that, part time, while her children were small. As Jeff grew, she spent more time advocating for him at school, going to workshops, trainings, and helping other parents through the IEP process. She worked briefly organizing trainings for families and professionals on team building. She was hired to work as a family consultant in Oregon’s Title V project, and also worked briefly with FACT (a family run training program) on their Parent to Parent Project. She is now retired, reading, writing, playing music and enjoying friends and family.
Read the article here.