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Learning the Skills,
Attacking the Obstacles
by Susie Ross
|I learned what the school could and could not do.
I learned excellent strategies to use at IEP meetings.
I learned my parental rights & responsibilities in the law.
It was a victory worth the fight!
My Daughter's Problems Were Complex
When my daughter Sarah was in kindergarten, I learned she had neurofibromatosis 1, ADHD, expressive language disorder, and central auditory processing disorder. She was also diagnosed with developmental delay, hearing loss in both ears, a speech impediment, and autism.
She began occupational and speech therapy three times a week, and had her first surgery (adenoidectomy and set of ear tubes). She also began having complex partial absence seizures at this time.
Her kindergarten standardized test scores were horrible.
The principal said she would never learn to read. The system tried to shove her into an inclusion classroom.
Learning My Rights
The school was writing off my child. They were doing as little as possible to educate her properly. I thought I was going to lose my mind trying to deal with them.
I called Wrightslaw, and spoke with Pete Wright.
Pete was kind and patient with me. He -
He explained why I needed accommodations versus modifications.
Using Tactics and Strategies
I learned what the school could and could not do.
I learned excellent strategies to use at IEP meetings.
When I implemented these strategies, they were a godsend, but angered people at IEP meetings.
As Pete taught me, I took a notepad with me to the IEP meetings and made two columns:
“What Mom Wants” and “What School Says.”
(Pre-Meeting Worksheet, Chapter 25: Preparing for Meetings: Taking Control in Wrightslaw: From Emotions to Advocacy, 2nd Edition)
I recorded the meetings using a Dictaphone.
(Tips for Recording Meetings, Chapter 26: Preparing for Meetings: Maintaining Control in Wrightslaw: From Emotions to Advocacy, 2nd Edition)
Doing My Research
I read all the information and resources Wrightslaw provided about accommodations and teaching methods.
I independently researched everything I could find on my child’s disabilities and disorders.
I learned my parental rights and responsibilities in the law.
Becoming an Advocate
While advocating for Sarah, I spoke about IEPs at a conference where her geneticist was speaking.
- I talked about standing up to the school when they want to toss your child into an inclusion (better known as "exclusion") classroom.
- I talked about how the school retaliated. The school wanted to force Sarah to miss recess in favor of speech therapy and other services.
- I talked about intimidation. The school brought an entire staff of professionals, including three psychologists to one meeting.
- I talked about educating yourself about your rights as a parent, and the right of your child to a Free Appropriate Public Education (FAPE).
After that speech, I became a parent advocate.
- I attended IEP meetings with other parents.
- I helped parents negotiate for appropriate accommodations and services.
- I became a voice for the child in a system skewed against those who were different.
At every opportunity, I pointed parents to wrightslaw.com. If it weren’t for you, Sarah would not have finished school.
Continuing the Struggle for Sarah
I am a Litigation Paralegal and returned to work as a Judicial Assistant/Administrative Law Clerk, handling cases dealing with public and private school systems. My passion at court was IDEA and the ADA.
I also continued to fight for Sarah's education.
She still required accommodations. I made sure she had them.
- a second set of books for home
- a study buddy
- private space for testing
- re-testing if stressed or experiencing a seizure
- a special machine for oral books
- a set of class handouts
- paper tests cut into pieces so she was not overwhelmed
By middle school, the system gave up fighting with me.
They tired of the IEP meetings I requested after every grading period when they tried to take away services, alleging Sarah was "doing fine."
A Victory Worth the Fight
I found a sticky note in Sarah's cumulative record folder that said, "Give this mom whatever she wants."
It was a victory many years in the making, and I could not have done it without Wrightslaw. You changed our lives.
From you I learned the importance of:
- using objective test results versus the subjective test results
- holding the school to follow the IEP
Sarah as Self-Advocate
I taught Sarah how to advocate on her own behalf when she reached high school.
To prepare for college, Sarah had a transitional IEP. She graduated high school on time, passed all the exit exams on the first try, and even qualified for the Louisiana TOPS program for college.
We provided her college with her last IEP as a guideline to what we expected. Thankfully, her college is wonderful about these things.
These days, her ASD is manageable. She is deaf in one ear. Most of the early accommodations are no longer necessary, but she will forever need some accommodations in terms of workload and managing stressors.
When she became an assistant manager at a store in the mall, she was responsible for opening and closing.
She asked the manager to write down all the steps necessary to open and close the store, and he did it for her. In her current job at Best Buy, she excels at teaching others about their mobile devices and gaming systems.
Today, Sarah is a great self-advocate!
I went on to co-found the Louisiana Chapter of the National Neurofibromatosis Foundation (n/k/a Children’s Tumor Foundation), and serve as Vice-President in Louisiana and sat on the Florida Board for a few years.
I would not have had the courage to do that, except that I knew I could help others if I shared the knowledge Wrightslaw gave me.
There are days when I want to go back to her kindergarten teacher and show her Sarah.
I want to say -
Remember the girl you said was mentally disabled and would never learn to read? You told me that if I loved her, I would place her into an inclusion classroom.
Sarah reads on grade level based on methods I researched when the standard methods failed. Sarah graduated high school. Sarah now has a 3.0 in college.
It’s a good thing I ignored you and your "experts."
In May 2017, Sarah will graduate with an AA in Psychology (3.3 GPA).
In August 2017, she will attend University of Central Florida to finish her degree before joining the Peace Corps for 2 years.
She wants to work with other children like her, helping them learn to excel despite their disabilities.