Thursday, February 14, 2008

Being a Successful Parent Advocate Series; Principle One: Knowledge & Research

For those of you that have been following this blog and listened to the first podcast, you know that I spent yesterday at a career showcase for middle school students. I said I would be recording the kids as they told me about their experience with other kids who have disabilities, what they know about assistive technology and their reactions. It was a fun day and I have some great sound clips and pictures to share. I am working on the editing for that podcast and hope to have it up next week. I have applied to itunes to have my podcast there where folks can subscribe as well as get it direct here. I will let you know when it is up on itunes for subscription. You will be able to get the podcasts there and put them on your ipod. If you don't know how to do it, I will give you directions when the time comes.

A Series on Being A Successful Parent Advocate:
I have had some interesting discussions lately with some "super parents". They are parents that don't take no for answer. Some do it in a peaceful way, some with a little more of a militant flavor and some exceeding the average by becoming medical research leaders in the area of their child's disorder.
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 worthy of some attention and documentation. When I hear parents begin to tell me of their battles to get what is best for their child, I am beginning to ask, "If you had to summarize what you have learned about being a parent advocate and had to boil it down to a few principles or points, what would they be?" I am getting some interesting comments and information.
One of the big ones is "study and read". Successful advocates scan the Internet for any new research on the illness or disability their child has. They get involved in groups and forums online. They also subscribe to journals and magazines if they are available.

One parent told me that she is fortunate that she can stay at home. Because of that, she has the time to read-up, research online, attend conferences and be knowledgeable. "A lot of parents don't have the time to invest in learning about this the way I can'" she said, "and so they don't know their rights or the laws that effect their children at school. They aren't knowledgeable about the new developments in support for their childs illness or disability. "
I was directed by a parent of a CP child to an amazing article written by Andrew Brereton who had a son with profound quadriplegic cerebral palsy. His son passed away 4 years ago from a series of brainstem strokes.
I think out of a sense of recovery from grief and a desire to help find treatment for children that have his son's disorder, Andrew began to go back to school and work on his degree in psychology. He went on to gain his Masters in cognitive neuropsychology. he has been involved in research projects that assist in understanding more of the inner workings of the neuro networks in the brain, and research in the development of communication skills.

There was a passage of his writing that I cannot summarize or put into my own words. You need to read them for yourself:

"Sadly, Daniel passed away four years ago last month. We miss him terribly and there will always be a massive 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, - interest in helping to solve the problems many children face, rolls on. Using all of the knowledge, which my son passed to me,(despite all my qualifications and research experience, he remains my most astute tutor), I am in the process of setting up a child development consultancy called 'Snowdrop.' It is in its infancy, but it aims to take all the knowledge and experience amassed over the years and to utilise it for the benefit of
children and families like ourselves."

You can find his website, Snowdrop, Here. I am also placing the link on my "Important Sites" list.
I cannot relate to this level of grief myself and hope I never have to, but I have the desire to help parents see the best for their children. That is why I do what I do at my job everyday and why I write this blog. My area is education and asistive technology - not as much the therapy aspect of it, but I am so glad to find resources like the one above that I can pass one to you. I am asking some of the parents I am working with to share with me as I develop some of our own resources to give you assistance in parent advocacy. I will be sharing more advocacy principles in this series, that are common traits of a successful advocate. I hope you will check back to read as I continue, and refer parents that you know to this too.
I am working on a free access assistive technology group forum/wiki I hope to have up in the next month or so. My hope is to have a central place that can be a "consumer report for AT" forum where you can add a review of a piece of technology and be part of a collaborative effort to be a resource on equipment for parents that have no idea what's out there and what it is all about. It will be organized by areas/categories of assistive technology so people can find a vendor and a piece of equipment easily. It will be hyperlinked to the vendor site for research and indexed also.
I am excited about the things that are happening here and if you see value, please show your support by passing the word on to others.
If you have any input on what you feel is an important principle of advocacy, you can email me at:

All the best to you!

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