by Amy Barto, M.Ed.
A few months ago, I had the opportunity to interview an amazing young lady with learning disabilities. Chloe just finished her ninth-grade year at a high school in SE Michigan. She had an IEP from 2nd grade to middle school and is currently supported for her dyslexia and sensory processing disorder through a 504 plan. Self-advocacy is a huge key to success for individuals with learning disabilities and is often talked about but not fully supported or taught. It can also take a lot of courage for a student to speak up to an adult, particularly an adult she does not know well. I spoke with Chloe to celebrate her accomplishment and bravery as well as to see what tips she had to share with others.
A Little About Chloe
Chloe’s mom shared that “around the age of 4 we could tell she was a math genius”. In Kindergarten, the teacher recognized this and identified that a goal would be to keep Chloe challenged. In 1st grade, Chloe was recommended for a STEM/enrichment school. She had to apply and be tested. She needed a 70% or higher to be accepted and Chloe scored a 60%. It became clear at that point that her abilities were not always coming out, especially on a test.
In 2nd grade, Chloe started getting teacher feedback like “Are you sure that’s your best work?” and “Why are you not getting good grades?”. Chloe started to shift from a happy child who loved school to one who was school resistant and lacked self-esteem. She was diagnosed with dyslexia and then tested and found eligible for an IEP. In 3rd grade, she was moved to an inclusion class, connected well with her teacher, and started to find success again.
In 4th grade, Chloe started to speak out about getting help, including advocating for a friend. She recognized that he needed help and wasn’t getting any. She frequently spoke to her mom about this because “I get help. He needs help.” They connected with the student’s mom and worked to get him help too.
In 5th grade, Chloe started having more sensory challenges. What worked well for her was permission for the teacher to use deep pressure like hugs when needed. As the year went on, the hugs “graduated” to fist bumps. True scaffolding for self-regulation!
For Chloe’s mom, she knew supporting Chloe was key, but she also knew that she was learning as they went. “I absolutely loved school, so I didn’t understand when she said she didn’t want to go”. She did look at private schools for Chloe, but financially they were not an option. She was not sure what to do for Chloe for grade school but knew that support would be key for Chloe. When Chloe got to middle school, she knew Chloe needed to communicate even more for herself. Chloe had many teachers which made self-advocacy a bit more complicated. She always pushed Chloe to email or talk to her teachers at the start of term to let them know what accommodations worked for her and why or if she had questions. Mom did email teachers in the background as a little backup. Middle school was a bit bumpy, but Chloe became well-prepared for high school.
I first became aware of Chloe and her advocacy skills in January, at the start of her second semester of 9th grade when her mom shared this post in a Facebook group this winter (shared with Chloe’s permission):
Chloe had sent a similar message to all of her teachers at the start of 9th grade and this one was to a new teacher, a mid-year replacement. She had not even really met this teacher yet and she shared with me that she really needed to build herself up to send it. What strength!
When asked what helps her the most, she immediately identified “listening to music!”. Music “helps me focus more. It locks out what’s going on and I can focus on what I need to do”. What kind of music? “It depends on my mood”. Based on Chloe’s challenges with becoming overwhelmed with filtering out auditory stimulations in classroom settings, etc… using music to create a focal point for her brain made complete sense.
Here is a little more of what Chloe and her mom, Karen, had to share with us:
Q: Why is it important to advocate for yourself and how does it help?
Chloe: It’s hard, but important. I practiced in middle school, so this was better, but it took me four days to build up the courage to send that message to my new teacher.
Each time it’s a little easier but it depends on how close I am to the teacher. Like, my math teacher is amazing. My art teacher too. I can just text her. My science and math and teachers are changing this semester, so we’ll see how that goes.
There are pressures on schools and teachers. They have to teach. Teachers don’t truly understand kids that have a disability or however you label it . . . kids who are dyslexic are beating themselves up before you even ask, ‘why are you not….?’.
Q: What are some tips you have for teachers?
Chloe: Give us time.
Don’t overwhelm us because once we’re overwhelmed it’s downhill from there. When you see we’re frustrated, give us the chance to change it up (get a drink of water, etc…).
Don’t call us out when we’re fidgeting.
Q: Mom, what are some tips you have for other parents?
Karen: It’s hard for me as a mom because I can’t always relate to kids who struggle . . . . the panic attacks . . . the verbal meltdowns. My son also had an IEP and often made himself sick prepping for IEP meetings. I knew with Chloe we needed to start as early as possible to help her be more comfortable advocating for herself.
The best tip is to put your requests in writing.
In 3rd, 4th and 5th grades, Chloe was in inclusion classes. I worked with both classes when I could and emailed the teacher with requests instead of trying to talk to them at Open House. I would also have individual meetings for goals with Chloe and the teacher.
Chloe just completed her 9th-grade year with great grades. She struggles with taking notes while listening, initiating written assignments (prepping the language centers in her brain), and reading or speaking in front of people. She struggles with being overwhelmed with auditory and tactile stimulation. She also excels with math concepts, science, and art. In fact, the dress in her picture (above) is one she crocheted herself. She also, as evident above, understands her own needs and is a strong self-advocate. Chloe is a great example of being strong with dyslexia and sensory processing disorder and we know she has a bright future ahead of her! #DyslexiaStrong
Additional resources related to self-advocacy or parenting children with LD:
- Learning to Self Advocate – an LDA Podcast with Toby Baker
- Advocacy: The Beauty of Being LD
- Parenting Children with Learning Disabilities, ADHD, and Related Disorders
- Support and Resources for Parents from LDA America
Amy Barto is a learning disability specialist, an LDA of Michigan Board Member, and our current webmaster and social media coordinator. She has worked with individuals with learning disabilities and their parents for over twenty years and is Mom to two fabulous daughters who live with dyslexia, ADHD, and/or anxiety.