American Action Fund for Blind Children and Adults
Future Reflections Special Issue: The Individualized Education Plan (IEP) PREPARATION AND PLANNING
by Terri and Aaron Rupp
From the Editor: IEPs come in many flavors, from bitter to sweet. In this article Terri and Aaron Rupp, parents from Nevada, relate their family's experiences at the "frozen yogurt counter."
I woke up in a cold sweat. I was shaking, and my heart still raced from my nightmare. Then I remembered what day it was. It was IEP day.
I had dreamed that we were attending our daughter's IEP meeting, and there was a new person on the team. The woman was cold, condescending, and completely unprofessional. She had caught us completely off-guard and taken control of the entire room. Whew! Thank goodness it had just been a dream.
As a blind parent, and now as the parent of a blind child, I have sat through my share of IEPs. Just as the name indicates, IEPs are Individualized Education Plans. I like to think of an IEP and its team as a trip to the frozen yogurt shop. There are many flavors, textures, and toppings to add before that final signature is penned to signify the comprehensive, and often creative, cooperation required to get to the finish line. In my role as the parent, I often find it hard to stay objective and keep calm when the mixture in the room is sour, bitter, or indigestible. From our daughter's first IEP in 2014 to her most recent one in 2017, the IEP, its goals and objectives, and the faces around the room have changed so many times you would never guess it has only been three years.
I look back at IEP 1 as the "Treading over Thin Ice" IEP. At the meeting the air was unsteady and frigid. Everyone's words and movements were carefully calculated so as not to crack the surface. There was no team. Phrases such as "You people," "That department," and "Those concerns" slid back and forth with no real direction. We walked out in a fog. Was this what we were facing? If so, we would not accept it. It was time to call on our Federation family, the resources and collective experience of the National Organization of Parents of Blind Children.
In the fall of 2014, our little girl entered pre-K. I cannot list the roadblocks we swerved around as we tried to build her bridge to Braille literacy. I only remember a blur of comments and objections. "Your child cannot use that non-school-issued cane; she might hurt other children."..."Yes, your child will need to learn Braille, but we won't consider introducing it until she reaches second grade." We did not stand by and let those low expectations fly. We reminded the school officials of the White Cane Law, and pointed out that our child could indeed take her cane anywhere she chose to go. Was a child who used a wheelchair forbidden to enter school unless the wheelchair was issued by a school official? Would it be okay to tell a print-reading child that she would not be taught print until second grade? Absolutely not! So it is not okay to say this about a child who will be a Braille reader.
After many, many meetings, we left pre-K feeling as though we were finally headed on the right track. Braille was introduced, integrated into the classroom, and Mrs. Cane went everywhere with our daughter. Our daughter was all set to enter kindergarten with a team willing to work with us...or so we thought.
To set the tone with our expectations, I emailed everyone on the education team the week before our daughter started kindergarten. To my dismay we learned that our daughter would be assigned a new TVI, as her last one had retired over the summer. The team was brought together for an informal meeting so we all could get on the same page. We walked in feeling hopeful and walked out utterly sick to our stomachs. Our daughter's orientation and mobility instructor was disrespectful toward us through the entire meeting. She discounted everything we said because we were not certified in O&M (even though Mom is a cane user). She cut us off with condescending words that triggered eye rolling, eyebrow raises, and smirks around the room since Mom is blind and would not be able to see the facial expressions. Later that day Dad wrote a Facebook post articulating his perspective on the meeting. He went into detail about the philosophy guiding our parenting compass, complete with cited references—and it went viral. Understanding our rights, our daughter's rights, and with an army of professionals and our Federation family behind us, we got that sourness removed.
Unfortunately, it took still more work before things became sweet. Somehow our daughter's case file was lost in a so-called glitch. Every week I asked her if someone came to teach her Braille, and every week she said no. By Week Six, Mom sent yet another email to get things stirring. With a creative school principal and new teachers onboard, our little girl ended out the year with a sweet taste for Braille.
My butterflies were again working on overdrive when we found out the week before first grade began that our daughter had been assigned yet another new TVI. But there was no need for those somersaults in my tummy after all. We have been graced with an incredible, amazing TVI who gets our daughter excited about Braille, creating contractions with candy and doing body Braille with singing and dancing. Each member of the education team has gone above and beyond to ensure that our daughter enjoys every last bite with a smile on her face.
If I could offer one piece of advice to a parent walking into his or her first IEP Frozen Yogurt shop, it would have to be, "You do not have to settle for the first scoop. You have the power and the right to change flavors and toppings. You can dump the entire cup and start from scratch if you are not satisfied. Sometimes you don't get to the sweet stuff at the bottom of the cup unless you've scooped through those bitter bites."