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36. The Instant Gratification of Information

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With the access to the World Wide Web and all the information that comes with it one worldwidewebwould think that parents would be able to find what they need.  It is interesting to note the contrast coming from the perspective of little or no access to information, or to other parents, when I began advocating compared to today with an endless listing of resources. When I typed the word “disability” in a Google search, I received seven hundred fifty seven million results.

I find in talking with parents that regardless of the ease of access to all of the information the same dilemma persists in that there is such a flood of information they become overwhelmed trying to sort through it all to find what is applicable to them.  So the conclusion is not the information but how to and when to use it once accessed.  This is why other parents are the best resource in advocating for your child or others.  They have that practical application and experience to guide you down the road to success.  As in any discipline there can be found experts.  There are experts on teaching, experts on a particular disability and experts on the many medical treatments and breakthroughs.  But nothing I have found can come close to the combined knowledge of parents who live the life and walk the talk daily.  I have always been an information sharing kind of guy.  Creating parent networks has been an interest of mine for many years.  (The Unplanned Journey)  I began with my own community then expanded to state and national connections.  With Facebook we now are now global!

The Parent Alliance is perhaps the single best resource and network ever created.  (Parent Center Network)   To be able to access nationally all of the different experiences of so many different Parent Centers is such a blessing.  This searchable network gives you access to parents across the nation from a wide variety of cultures, socioeconomic backgrounds, and geographical locations.  All you have to do is start matching as many like factors as you can to find the best match for your own circumstances.

InfoNever take any one source as gospel.  We all are not gullible enough to believe everything you read on the internet is true.  This holds true for all sources and information should be verified by multiple for accuracy.  Having access to the right information at the right time can be the difference in your ability to access a needed service or not.

Recently longstanding clearinghouse sources for parent information Family Village and NICHY have pulled websites because of lack of funding.  Two of the best list keepers of all will no longer be there when you need to find information.  I see this as a continuing trend given today’s economy.  This reinforces my belief that parents should be able to access any and all information they need directly from the school their child attends.  This is where parents often find out their child has a disability and how the disability will affect their child as they grow.  I understand this requires collaboration between parents and schools and sometimes reestablishing trust that has been lost on both sides.  I know I purchased so many books on law and deafness that set on shelves at home until I passed them on to another parent.  Creating sustainable resources site based and encouraging parents to share materials by placing them in schools is an excellent cost neutral way to provide the information to others both parent and professional.

Disability is a natural part of life and will always remain.  There is no preparation for becoming part of the disability community so consequently there will always be a need for current and accurate information.  Creating sustainable information and networks in your own community is the best option to assure that there is access, and support, available for parents as the need arises.  It will remain the role and responsibility of parents to help the multitude of other parents that will just be entering into the cycle by offering information and support when needed.  It is parents that have the practical experience and parents that really understand and relate.  As well-meaning as anyone else may be unless you have this experience firsthand you really are not capable of comprehending what it all means.

Despite the ease of access to all the information it will still come back to having another Momanddaughterparent who has gone through the experience teaching other parents when they have the need for that information. Working collaboratively with schools to create sustainable site based parent professional information and training is the answer. It is a win, win situation for all involved.  I created a model in my community that does just that.  (Sharing The Commitment – Collier County)

I have been affiliated with Parent Training and Information Centers (PTI) for 21 years now and know from that experience how critical it is to achieving the right information at the time you need it.  I can also attest to the difference being an informed parent makes when collaborating with bureaucracies. With the information and support from other parents to model successful advocacy, an opportunity for true community partnerships focused on child focused outcomes can be created. (Encouraging the Involvement of Parents of Children with Disabilities)



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