Take It To The Limit

Pervasive Parenting

By Kodey Toney

Take It To The Limit

I attended the State of Oklahoma Governor’s Conference on Developmental Disabilities last week, and as always found inspiration. I want to share some of, what I feel, were the highlights of the two-day event.

The key-note speaker for the first day was Tina Campanella, CEO of Quality Trust, a company that works with individuals with disabilities in the Washington D.C. area. She talked about how people with disabilities have a difficult time making decisions, especial as they get older. This is mostly because we don’t allow them to throughout their lives, so when they set out on their own they have a hard time understanding what they are supposed to do.

“Do we let them make their own decisions,” asked Campanella. “We often don’t ask the students what they want. Life experiences help create decision makers.”

She also explained that too often professionals that work with people with disabilities, don’t look past an IQ score. We as a society can’t see past that number. We feel that they can’t learn more than the IQ score says they can. The same could be said for someone with a physical disability. We can’t see past the wheel chair, crutch, or off-set gait. This is the wrong attitude. Everyone has unlimited potential. The only things we can’t do in our lives are the things we stop ourselves from doing. At times we are hurting our children by telling them that there are things that they can’t do because of their diagnosis. We should be encouraging.

“Why do we limit our vision for children with disabilities,” asked Campanella.

She finished by saying, “Ultimately advocacy is about people, the kids. It’s not about me. It’s not about you. It’s not about the parents. It’s not about the schools. It’s about PEOPLE.” 

I went to a breakout session where the presenters were talking about what we can do as advocates to help those with disabilities help themselves, and have a good life. We as parents often concentrate on finding services to help our children. This is fine. They need the therapies, doctors, and sometimes medicines. However, we focus too much on this aspect and forget about the unpaid supports like family, friends, and outside assistance that is not based through state and federal funding.

Professionals are trained to study and solve problems. They are a big help, but the family members are the experts on the person with the disability. They spend the most time with them. There has to be a balance between the two.

The person teaching the skills has to be effective in their teaching style. “Teaching inconsequential skills well is really no better than teaching essential skills poorly,” said Rene Daman from the Oklahoma Autism Network. If you’re teaching something, but they are not understanding then what is the point of teaching. In the same frame of mind, if we’re teaching them something they don’t need then we’re also wasting our time.

We stress ourselves out too often trying to solve all the problems at once. I have a saying when I’m stressed, “One crisis at a time.” We have to focus on what we need today. Start with the number-one stressor, and then move on as you eliminate it.

These are only a few points from the two days, but I felt it was pretty good advice.