I’ve had some interesting discussions lately with some “excellent parents”. They are parents who don’t accept a no. Some do it in a peaceful way, others have a puritanical flavor and some outperform most of us by becoming leaders in medical research in the field of their children’s disorder. This article is one of three on the principles these parents practice to become successful advocates.
The first principle: knowledge and research
The way successful parents stand up for their personalities varies, but what they do and how they do it are similar and deserve some attention and documentation. When I hear parents begin to tell me about their battles to get the best for their children, I begin to ask, “If you had to summarize what I’ve learned about being an advocate for parents and had to boil it down to some principles or points, what would it be?” I’m getting some interesting comments and information.
One of the biggest is “study and read”. Successful advocates scan the Internet for any new research about their child’s illness or disability. They participate in online groups and forums. They also subscribe to journals and magazines if they are available.
One parent told me she was lucky to be able to stay home. Because of this, she has time to read, research online, attend conferences, and gain knowledge. She said, “A lot of parents don’t have the time to invest in learning about this the way I can, and so they don’t know their rights or the laws that affect their children at school. They aren’t aware of new developments to support their children’s illness or disability.”
I was directed by a parent of a child with cerebral palsy to a wonderful article written by Andrew Brereton who had a son with profound quadriplegic cerebral palsy. His son died 4 years ago of a series of strokes in the brainstem. He has a support site called “Snowdrop” for CP.
Thinking out of a sense of healing from grief and a desire to help find a cure for children with his son’s disorder, Andrew began going back to school and working on his degree in psychology. He went on to earn a master’s degree in cognitive neuropsychology. Get involved in research projects that help understand more of the inner workings of neural networks in the brain, and research into the development of communication skills. There was a section of his writing that I cannot summarize or describe in my own words. You need to read it yourself:
“Unfortunately, Daniel passed away four years ago last month. We miss him terribly and there will always be a huge hole in our lives. How do you get over the death of a child? Yet, the snowball of enthusiasm and interest, which he created in me,—the interest in helping to solve the problems so many children face, continues. Using all the knowledge, which my son has imparted to me, (although for all my developmental experience, I consult with him).” over the years and benefiting from it for the benefit of children and families like ours.”
I can’t handle that level of grief myself and hope I never have to, but I have the desire to help parents see the best for their children. My enthusiasm for my work as an Assistive Technology Specialist balances between being an advocate for the schools I serve and the parents I serve, but my first and foremost concern is what’s best for the child. Since I see so many teachers, parents, administrators, and professionals working with policies and protocols, I have plenty of examples to draw from. I know that the people I see the best service from are the ones who take the time to see the latest information about available equipment, treatments, and technology. Since things change so often, I encourage you to research, read, blog, and join the forums to hear what others have to say. There is a wealth of information waiting for you to discover. Find the next article in this series, which will be about the second principle: “Promoting Positive Relationships”
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