Tara: A Family’s EI Experiences and Wishes

smiling child

Grace*, mother of Tara*, a 1½-year-old child with Down syndrome provided me with a unique perspective considering she is a trained special educational professional who came to have a young child with a disability after several years of teaching. “Having a child with Down syndrome has really opened my eyes a lot,” Grace told me, “Even though I was a special education teacher teaching [young adults] with learning disabilities, I didn’t know a lot about Down syndrome. At first I was wary to even go talk to someone. [Children with Down syndrome] can do so much more than I thought and are people just like the rest of us.” Grace has been reading a lot about postsecondary education for those with Down syndrome. She finds this inspiring. “I would love to see Tara be able to go to some type of school so that she can get a job that she will enjoy,” she added.

Some of the most helpful things with Tara’s services include the developmental playgroup they attend together. Grace finds the routine and socialization to be really beneficial, though Tara is still young. And Tara, who is a social butterfly and smiles all the time, really enjoys it! Other helpful things that have been done include a parent-friendly therapy report, which is given to her at the end of each session at her home or via email. She points out that with so many therapists and things she needs to be working on with Tara, it’s helpful to be able to revisit this report throughout the week. Handouts are most helpful when they have pictures. However, she warns providers that families don’t always have time to read a bunch of handouts. Grace also wishes her therapists gave her more initial direction and “permission” to take part in Tara’s sessions. “It took me a while to figure out how much I should be involved. I wish they would have told me ‘Come down here and do this with me.’ I often didn’t want to be in their way, but I wanted to learn as well. I definitely wanted to help.”

Grace has found many ways to be an advocate for her daughter and others with disabilities. She and her family participate in a support group as well as advocacy events such as the annual Buddy Walk held by the Down Syndrome Network. She is also an advocate for Tara on a daily basis by taking Tara with her wherever she goes. This includes her older sibling’s activities and parent volunteering, community events such as library story hours, and activities at church. “This way the kids can get to know her now as Tara versus That Girl with Down Syndrome as they are growing up together.”

About this Family Story

“Family Relations: A Family Perspective” by Lisa Ellis. IDEC Newsletter, Volume 12, Issue 3. Used with permission.

*Names changed for confidentiality purposes.