My Story

We moved from Mexico to the USA in 1990, when my wife was 6 months pregnant. I was working in a fruit-packing house at that time. It was that night, October 31, when I received a phone call that my wife was at the hospital. Then I experienced different feelings and thoughts, asking myself if something was wrong. We learned early position, so I went to the hospital right away and I found my wife doing some exercises to correct the baby’s position.

My wife was attached to a fetal monitor to observe if everything was O.K. When we were alone, suddenly I realized that the baby’s heart rate was coming flat. Quickly I called for the doctor and she gave instructions to the medical team to have everything ready for a cesarean. The baby had the umbilical cord around his neck.

Being with my wife at the delivering moment was something very special, a unique experience. Joel Jr. was born on a Halloween night!

The News
When my wife was transferred to the recovery room, one of the doctors told me I needed to talk to him. I imagined that something was not O.K. I was worried, but I didn’t see the doctor again that night.

The next morning, my wife was breastfeeding the baby when one of the doctors came to our room and told us that my baby was born with Mongolism (Down syndrome). Due to the language barrier, it was difficult for me to understand. My wife was all tears because of the way we learned the news. The words the doctor used were offensive words in our country. Again I was experiencing different feelings. I was confused, frustrated and, in some ways, alone. I learned that my family needed lots of support. To be in a different country, it was difficult to adapt and also expecting that our life would need to change with the needs of this special baby.

Getting Services
I must say that we received basic support. For my family to hear that we had options and local social services and schools with special providers available, it was a relief!

My experience when Joel was taken for his medical evaluation was sad for me. At that time, the social workers had little expectations about what we already knew about this condition. They did not ask me what I already knew about Down syndrome. They assumed that I knew little or nothing. I felt they were talking “down” to me. I felt little respect for what I knew.

Changes
We learned that having a child with special needs required different life routines. The challenges we had we saw as opportunities to learn and share with other families who experienced similar situations. We are learning every day to take advantage of community services available.

Currently, Joel Jr. is at middle school. Last month he was recognized as the student of the month. He has been participating in 4-H Horse Club. He also attends soccer games designed for children with special needs. As a family, we are involved with the Community Connections Team. They are represented by different local agencies such as: doctors, therapists, social workers, teachers, school psychologist, instructional assistants and other persons involved in the life of our son.

Joel Pelayo, Sr. has been working for Head Start/Early Head Start in the Mid- Columbia Region of Oregon for 7 years. His story can be heard in Spanish at http://www.specialquest.org/pelayo.html. He shares his story so that others can support, understand, and feel empathy with families who have experiences similar to those of his family. Joel participated as a SpecialQuest team member in the Hilton/Early Head Start Training Program whose mission is to support EHS and Migrant and Seasonal Head Start staff and family members to develop skills and strategies for accessing and using services, resources, and technology to include infants and toddlers with significant disabilities and their families in EHS/MSHS programs.