Changing Perceptions of Down syndrome through the LEND program

Do you ever wish your child’s doctor, therapist, or other medical professional could spend time with your family to get a more authentic perspective of Down syndrome? Well, you can!

The 15 minutes or hour a week that medical professionals spend with our children in a clinical setting is often dominated by the pathology of Down syndrome. The focus is often on what’s wrong with the child, instead of the child’s strengths and inherent right to access and be included in society.

We volunteered to have these type of professionals shadow us in our home, as well as out in the community. The Leadership Education in Neuro-developmental and related Disabilities (LEND) through Cincinnati Children’s Hospital assigned us to a clinical psychologist and disability self-advocate. You can read about our experience when they visited our home below. This week they came with us to a community event.

Related: Our Family LENDs Perspective to Medical Professionals in Our Home

Our trainees are clinical psychologist, Kaitlyn Eichinger, and self-advocate, Rachel Rice. I love that they have a trainee with a disability participate. Rachel is one of the first self-advocates to be included in the LEND program. It’s a great way for her to continue advocating for herself, and learn how other families advocate for themselves.

Part of the Family Mentor Program requires trainees to think systemically, and communicate the complexity of community
participation by children with developmental disabilities and their families. To give Kaitlyn and Rachel an idea of how we operate in our community, I invited them to our Recreation Center’s Thanksgiving craft day.

I’ll be honest, Troy is a wild card outside of the house. I didn’t have any anxiety with inviting these strangers into our home. That’s because I’m very structured, and Troy knows exactly what to expect. On the other hand, I can’t control what happens outside of our home. Troy does great with routine outings like therapy, library visits, and swim lessons. Every where else can be tricky.

Of course, I only got pictures of him behaving well, and actually doing the craft at our local Recreation Center’s “Gobble Fest.” That’s because I was too busy chasing after him to take pictures of him misbehaving. What you don’t see is Troy running for the door every chance he gets, or rolling on the floor (literally). Troy loathes crafts, but he’s actually improved greatly in the past year. At least now he’ll sit for 2-5 minutes and paint.

Related: A Day in the Life of My Son with Down Syndrome

Clinical psychologist, Kaitlyn Eichinger, says it’s important to see Troy in environments that he’s comfortable and uncomfortable in. “As a provider, we only see what happens in the appointment. It is important for us to understand that the parent is the expert. Families are the ones who are with the child everyday living their life. We can make all the recommendations in the world but if its not going to work with the family, we are not actually helping the child or family.  I need to ensure that I understand the family perspective in order to best be able to serve the family and child,” Eichinger explains.

I felt bad that I didn’t get to talk to either Rachel or Kaitlyn very much this time around. Taking three kids out on town doesn’t make for easy conversation. Next time we plan to meet at one of Troy’s scheduled outings, so they can see him in a more controlled setting. Still, I think this experience gave them a glimpse into some of the challenges we face in new situations. All important learning experiences!

There’s LEND Programs in all 50 states. If you’re interested in becoming a Family Mentor click here.

What do you wish your child’s doctor, clinical psychologist, therapist, or other medical professional new about your child? Do you think inviting them into your home might change their perspective? In what way? Share your thoughts below!