Effective Strategies for Advocating in the Special Education System

I am grateful for everything the Walkers and Navee’s team has shared with this podcast. Before publishing the final episode of this series with civil rights lawyers Vickie Brett and Amanda Selogie, I want to share a blog Brooke wrote for listeners and viewers. In it, she shares her insights as a parent and how things have changed since we began recording the series back in May. Listen to the five episodes on Apple Podcasts, Spotify, YouTube, or anywhere you get your podcasts.

Learning to navigate the special education system has been one of the most challenging journeys of our lives.  That statement speaks volumes considering my husband has a Masters of Engineering, I have my Doctorate of Pharmacy and we have successfully completed an international adoption by pushing our way through the legal system of India.

Two years ago, I attended my very first IEP meeting.  At that time, I did not even know that IEP stood for individualized education plan.  I certainly didn’t understand that it was a team approach to developing a plan for the successful education of my daughter.  I showed up without my husband, empty handed with a smile on my face and the naïve assumption that this was merely a formality for my daughter to attend the public school system.  I listened to a group of administrators and educators discuss what they thought would be the most successful plan for Navee.  They asked me a few questions about my daughter’s history as well as her current development.  I signed a paper and left that meeting feeling ecstatic that everyone had my daughter’s best interest at heart.

Twenty eight months and twelve IEP meetings later, things looks a lot different.  With my husband by my side, an advocate on zoom, a voice recorder and a backpack full of notebooks of data, law and curriculum, I am finally learning that I am an integral part of this meeting.   Honestly, it is hard for me to imagine how the majority of parents are able to get their children access to FAPE (free appropriate public education) without hours of research and perseverance against a system that is not set up for their success.  I am not in education; therefore, I sincerely can not offer a remedy on how to fix this problem.  I just know that it is broken, and intelligent children such as my daughter are being left behind to sink in an ocean where they were never taught to swim.   

My daughter is profoundly Deaf and language deprived.  We adopted her from India at the age of 4 & ½ years old.  This means that she went without a primary language for almost five years.  I have learned that language deprivation is the single most difficult hurdle that Navee must overcome to be successful with literacy, reading and her education in general.  The most frightening part to me is that I learned this on my own.  No one sat me down during any of my twelve IEP meetings and discussed this with me.  No one really even acknowledged it until I requested it be written into her IEP.  It was my understanding that the LEA (local education agency) is to identify, locate and evaluate children with special education needs.  I find it disheartening that after two years, I am the one left to identify these missing pieces to the puzzle.

After identifying Navee’s most detrimental factor to her successful education, I dove into mountains of research on this specific topic.  I came across Dr. Kristin Di Perri, a professor in Boston who has dedicated her life’s work to the education of language deprived, profoundly Deaf children, exactly like my daughter.  I was able to schedule a meeting with her to help me understand the best approach for Navee.  She sent me close to eight hours of training videos to watch.  This training was the most educational and enlightening material that I have studied since our adoption.  Immediately after watching these, I began to communicate differently with my daughter.  My approach of teaching her new things at home has changed.  My understanding of her world is more profound.  I wish that everyone involved in the education of deaf, language deprived children were required to go through this training.  I feel confident that the success of our children would tremendously increase if her techniques were implemented in the classroom. 

Navee’s Kindergarten teacher, Mrs. Onofre, once said during an IEP meeting, “I feel like I am trying to reinvent the wheel.”  Mrs. Onofre is a phenomenal teacher and what makes her even more incredible is that she immediately recognized that something was missing from Navee’s education.  This has been continually disregarded.  I do not feel like anyone had malicious intent for my daughter.  I believe this is a result of the education system as a whole.  I am not in education; therefore, I do not know the root of the problem.  Is it underfunding?  Is it a lack of research?  Is it a lack of resources?  I do not know the answer, but I do know that our children are suffering as a result.  It feels like the education system has become more about all the boxes being checked from an administrative side and less about the success of our children’s future. 

The best advice I can give to anyone walking through the special education system is this:

1.      Educate yourself.  You need to know the state and federal law requirements, grants available, as well as research and data available for your child’s specific needs.

2.      Document everything.  Keep a notebook of every single correspondence you have involving your child’s education.

3.      Be realistic and polite.  The administrators and educators are human.  The ones that I have dealt with are not intentionally malicious.  They have a side that we can not see or understand.  And I just think it is always a good idea to be kind to others.  

4.      Ask for data and research.  One of the most difficult disagreements we had for our daughter was the approach to her literacy.  The school system was suggesting one approach.  We were suggesting a totally different approach.  At the end of the day, we all want my daughter to succeed.  I asked them for research to support their ideas.  They couldn’t provide any.  I was able to provide many sources, including student work samples, for my suggestions.  At the end of the day, we were able to come up with a solution that was best for my daughter based on research and data.

5.      Never give up.  You will want to do this often.  You will get frustrated.  You will question if it is worth it.   It is.  Your child is worth it.