Got Parent Support? My Advice to Parents Is Get Parent Support
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PSN Team 
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Parent Support
I just received my acceptance letter from Family Café where I will be presenting “20/20 Hindsight – Clearing the Air on Vision.” Many emotions came flooding back to me as we began our journey in 2007 into the world of visual impairment/blindness for Torrie, our younger daughter. For several years, we were clueless on everything! My husband and I attended several IEP meetings, all without knowledge of the IEP process, and more importantly, having no knowledge of the educational impact of the visual impairment on Torrie! I am sure our history is not exclusive to us….so I am sharing our journey.
ATorrie was enrolled in the Blind Babies program through the Division of Blind Services (DBS) and in 2007, our family attended a Blind Babies Camp, hosted by DBS and the FL. Lions. That was the first time we met other families from around the state who also had kiddos (under 3) who were blind or visually impaired. It was interesting that we all (10 of us) had the same experience with our pediatric ophthalmologists – we were told “legally blind” or “blind” but there were no resources given to any of us! Four young adults and their parents spoke to us, and all 4 affirmed their necessity for, and dependence on, Braille. Unfortunately, there was no guidance given at the camp on what the IDEA law stated regarding Braille. David and I had the “a-ha” moments that Torrie should learn print and Braille to read, but we had NO idea on how to proceed for Torrie to be a dual-medium reader!
So, after several IEP meetings, I reached out to one of the organizations for vision professionals, some who were blind or visually impaired themselves, on children learning print and Braille. I brought my findings to my IEP meeting. Needless to say, that meeting tanked – and FAST! As a parent, I was not being heard and my request for Braille was negated to the point that I should have stopped the meeting and left. That’s when I put my “big girl panties” on and searched for assistance with the IEP process and blindness. And so the phone calls began…
I found Central Florida Parent Center, the parent training center that covered 30 counties in FL. IEP Coach Anna Brynild was the first person to ask “What do you want for Torrie?” It threw me for a loop because no one had ever asked ME that question … and meant it!!! Kind of sad that it took almost 2 years to be heard! Anna and I studied the IDEA law, the Florida Statutes, and the St. Lucie County SP&P specific to blindness to be able to advocate for services specific to blindness.
Calls were also made to the many organizations of/for the blind and only ONE called me back! A mom who was a member of National Federation of the Blind- FL (NFB) and its parent division asked to meet for lunch. That mom also brought an adult who was blind since birth. Torrie was given a cane and we both received simple instructions in using the cane to keep Torrie safe! (We had seen that she was not safe when traveling/moving, including inside our home, and the cane was the tool that could provide safety and independence). I was invited to the chapter meeting for NFB. I also learned how we, as parents, could introduce Braille to Torrie in a fun way. In 2009, our world was opened for Torrie to Braille and orientation and mobility!
And the rest, as they say, is history; the doors were flung open! I joined NFB and the parents division, we attended the state and national conventions that year, we researched and scrutinized the language specific to IEPs and blindness, the laws and where to find those laws, the effects of the visual impairment on Torrie (not only in the educational setting), and how we as a family could support her with her visual impairment to become an independent adult.
My advice to parents is to join disability support groups to gain knowledge, support, and encouragement as your journey continues for your child. Tap into these families. They are your wealth of information!
http://beess.fcim.org/sppDistrictDocSearch.aspx
Doreen Franklin Doreen is a Special Ed Advocate and parent of 2 adopted daughters with diverse special needs. She assists parents with their understanding of legal policy, procedures, rights, & responsibilities under IDEA so parents can learn to collaboratively advocate for their child. She has been an Advocate & Coach since 2005. Doreen is also a private tutor and homeschooled her older daughter.
https://www.parentingspecialneeds.org/article/early-intervention-first-steps-in-the-right-direction/
https://www.parentingspecialneeds.org/article/developing-your-own-network/
https://www.parentingspecialneeds.org/article/iep-10-things-cover-meeting/
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This post originally appeared on our March/April 2019 Magazine
