I had an email and follow-up call recently asking me if I would moderate a national online discussion on "Family Advocacy and Family-School Partnerships." I am honored to be asked and have agreed to moderate, but at the same time I am humbled when I think of all the resources out there and experts in the field. I just have been working from practical observations and common sense as I have seen what has worked and what has failed for parents as advocates. I see the angry ones, the lost ones, the frustrated ones and the collaborative ones, the veterans and the newbies.
I am thankful that I believe I have an extra dose of compassion in that I understand somewhat what it means to be thrust overnight into a world of being an advocate with no experience because your newborn was born with a severe impairment or even multiple disabilities. A parent can send a child to football practice one day or, in my part of the country, out to ride a horse after school, and end up with a head injury - next thing you know - you are looking at rehab and assistive technology.
I was reading a discussion thread from a parent on a site the other day and they shared that they believed if they would have waited for the school to initiate something for their son, he would still be floundering and behind. The fact that they as parents, saw themselves as the only advocates, and that they were initiating the discussion and pulling in outside advice and professional expertise into the picture - added up to a better response from the principal and the school towards developing a plan of action.
I know in my own world, I have many needs surrounding me throughout our region. I am trying to keep up with all of them but I find that the parents and schools that are most vocal, most on top of the situation in getting requests, reports and ideas to me, etc. are the ones that get the most service. It's not that I don't care about all of the situations around me . All of them get met to a certain degree, but the ones I enjoy the most are the ones where everyone is positive, pro-active and ready to do whatever it takes.
In all these cases, it always points back to someone that was a powerful advocate for that child. Sometimes the advocate isn't necessarily the parent. Sometimes it is the principal - I have some right now that are the biggest advocates you could want for a student. Sometimes it is the teacher - I have seen parents who literally frustrate and try and block any positive progress - even to the point of denying equipment and services offered by the school - even though they agree to and have their child on an IEP. Yep, try and figure that one out! If it weren't for a teacher that continues to push for the best for these children in these cases, a child would not be getting anything.
I see advocacy as having many faces and many styles. It is great to see AT company reps that genuinely want the best for a student even if it isn't their company product getting purchased. I had an AAC rep tell me a story recently about a request for help. This rep actually wrote a request for funding letter out for a parent that asked even though they were getting another device from another company - that's advocacy!
Don't ever underestimate where it can come from.
All the best to you!
Lon
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