Lately I have had some interesting discussions with some “super parents”. They are parents who do not take no for an answer. Some do it peacefully, some with a little more of a militant flavor, and some surpassing most of us in becoming leaders of medical research in the area of ​​your child’s disorder. This article is one of the three principles these parents practice to become successful advocates.

Principle one: knowledge and research

The way successful parents advocate is as different as their personalities, but what they do and how they do it is similar and deserves some attention and documentation. When I hear parents begin to tell me about their battles to get the best for their children, I start to ask, “If you were to summarize what you have learned about being a parenting advocate and you had to summarize it in a few principles or points, What would they be? “I get some interesting feedback and information.

One of the most important is “study and read.” Successful advocates search the Internet for new research on your child’s illness or disability. They get involved in groups and online forums. They also subscribe to newspapers and magazines if available.

A father told me that he is lucky to be able to stay home. So you have time to read, research online, attend conferences, and stay informed. “Many parents do not have the time to invest in learning about this in the way that I can,” he said, “and so they do not know their rights or the laws that affect their children in school. Developments in support of the disease or your child’s disability. “

A parent of a child with CP directed me to an amazing article written by Andrew Brereton who had a son with profound tetraplegic cerebral palsy. Her son passed away 4 years ago from a series of strokes. He has a support site called “snowdrop” for CP.

I believe that out of a sense of recovery from the pain and a desire to help find treatment for children with his son’s disorder, Andrew began going back to school and working on his undergraduate degree in psychology. He went on to earn his master’s degree in cognitive neuropsychology. He has been involved in research projects that help to further understand the inner workings of neural networks in the brain and in research on the development of communication skills. There was a passage from his writings that I cannot summarize or put in my own words. You have to read them for 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? However, the snowball of enthusiasm and interest, which he created in me, – the interest in helping to solve the problems that many children face, continues. Using all the knowledge that my son passed on to me (despite all my qualifications and research experience, he is still my most astute tutor), I am in the The process of establishing a child development consultancy called ‘Snowdrop’. It is in its infancy, but its goal is to take all the knowledge and experience accumulated over the years and use it for the benefit of children and families like us. “

I cannot relate to this level of pain myself and hope I never have to, but I have a desire to help parents see the best for their children. My enthusiasm in my work as an assistive technology specialist is balanced between being an advocate for the schools I serve and the parents I serve, but my first and foremost concern is what is best for the child. Since I see many teachers and parents, administrators and specialists working with policies and protocols, I have many examples to draw from. I know that the people I see the best service from are the ones who take the time to stay up-to-date with the latest information on available equipment, therapies, and technology. Since things change so much, I encourage you to search, read, blog, and join forums to hear what others are saying. There is a wealth of information waiting for you to discover. Look for the next article in this series, which will focus on Principle Two: “Building Positive Relationships.”

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