Today, I was reminded of something that I wrote 20 years ago back in 1995. I want to share it again with parents of kids with disabilities and with professionals who work with families. I found this quote from me on someone else’s website, I am glad that someone was kind enough to preserve it:
Sometimes it is more important to be a parent than a paraprofessional. Parents are expected to be physical therapists, nurses, behavior modifiers, communication therapists and so on. Sometimes paid professionals tell us, “you don’t need us; you know how to do all this stuff.” Sometimes we have to tell them, “I’m sorry but we’re too busy being parents to do all these other jobs.”
The unique role of parents must be recognized, respected, and cultivated. Parents need to be parents first, and being good parents is the most important job in the world… -Dick Sobsey
Here is the point that I was trying to make… Back in the 1970s and 1980s with the increasing emphasis on transdisciplinary collaborative services for children with disabilities, there was an increasing emphasis on involving parents in their children’s educational and therapeutic programs and their healthcare. In many cases, parents were also asked to help with research programs by collecting data or raising funds to support research efforts. For the most part, this was a very good thing. It helped make educational and therapeutic programs more effective, it improved children’s healthcare, and it helped research efforts move forward …BUT there are a couple of cautions that have to be considered.
The teacher, the doctor, the nurse, the speech therapist, the physical therapist, the occupational therapist, the psychologist, and all the others involved with a child’s team all should and hopefully do support each others’ effort, but each one has her or his primary responsibility to be good at their own job. Helping with others is never a good reason to do a poor job in one’s own primary area of responsibility. Unfortunately, a lot of professionals in all these other roles forgot that being a MOM or a DAD is another essential role in its own right. They haven’t always recognized that that being a good parent to a child or adult with severe and multiple disabilities can be fulltime job (and often much more demanding than a fulltime job). They haven’t always understood, that sometimes the right thing to do as a parent is not always the same as the right thing to do as a teacher, therapist. or other team member. They have sometimes made the error of judging parents by the way they follow through as a kind of paraprofessional or program helper.
Perhaps more seriously, parents sometimes fall into the trap of judging themselves this way and feeling guilty if they can’t keep up with doing all the stuff that they need to do to support professional efforts. Sometimes when a professional asks them to do one more thing, they don’t feel comfortable saying, “I am totally exhausted and can’t keep up with the things that I already need to do, I just don’t know if I can do one more thing.”
I am not saying that parents should not ever do anything helpful to support their child’s program. I am not saying that professionals should never ask parents if they can help.
My message to professionals is simply this: (1) Recognize that being a parent is an important role in its own right. (2) Exercise caution in asking parents to take on other roles, and respect it when they say no or simply find they are unable to follow through.
My message to parents is this: (1) Of course, you should help with your child’s program and all the other things when you can. (2) Know that your primary responsibility is be a good mom or dad. (3) Don’t feel guilty when you cannot take on all the other requests. (4) Let the other team member’s know when you are already overloaded so that they don’t think you just don’t care.
Parents must be parents first.