Trust your gut, persevere & learn to advocate: our story

In the early months, when you know your child is struggling to learn but you don't know why, you can feel very alone. I know I did. Here is what I learned on our journey to getting support for my son.

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The picture I chose for this post is one that was taken days before I wrote this. To me, it symbolizes how far we've come in understanding that my son, Dalton's, learning challenges extended beyond his deafblindness. It was taken high up on a ropes course in Montana. My deafblind child (with little sense of balance) challenged me to do the course with him - it was his idea! Given the challenges he has overcome, how could I say no - although I was scared. Together, like we have been on so much of the journey, we persevered and completed the course. I'm so proud to say he crUSHed it. The whole experience took me back to a time when we were struggling and didn't know what lay ahead - but, much like the ropes course, we persevered and learned to trust ourselves. Here's our story.

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Many of you know, I am a huge proponent of collaboration in IEP meetings. I feel strongly that working together will result in better student outcomes. I have, for the most part, over my 21 years of IEP meeting experience thankfully had mostly positive experiences. Today I reflect on one of those difficult times, a time when my youngest son Dalton was struggling in school and I felt very alone in figuring out what was going on with him so we could help him. I believed in my gut that his learning challenges were brought on by more than his deafblindness - there were other factors at play. To give some context about my feelings at that time, I am sharing what I wrote as a preface to my dissertation - the why I do what I do. The reason for this story is to explain the complexities in getting IEP teams to look beyond deafblindness in order to accurately diagnose additional disabilities such as learning disabilities, ADHD, and anxiety. 

Here’s the vignette from my dissertation:
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oday, we are having a special Individualized Education Program meeting for my 10-year-old son. At home, I have seen him struggle this year, and I do not know why. I am upset because I do not have all the answers. Are his struggles because he is missing some of the information at school due to his deafblindness? Is it that he needs extra support in academics or perhaps that we are missing that he has other needs that are not related to deafblindness? I have been up all night trying to figure out how to get the IEP team to understand what is going on. The morning of the IEP meeting, I decided to bring my son to the meeting so that he can share how he is feeling. On the car ride, I explain to him that I am here to support him but that I need him to be honest with his team about what is going on in the classroom and at home.

I walk into the district office. I had hoped to have this meeting at our house so that it would be on “our turf,” but it wouldn’t work with schedules. I feel less comfortable in this environment because it feels impersonal. We continue into the stark conference room where the entire team is already seated. Have they had a pre-meeting without us? I feel the inequality of power. 

The reason for this meeting is that I have asked the IEP team for a tutor. I know that what I am asking for is a stretch. His case manager informs me that he does not qualify for a tutor because he is making sufficient academic progress. Although I am not surprised by her response, I am hurt. Even though he has a supportive IEP team, they are not advocating for him. It's up to me now. My stomach is upset. I feel anxious. My son is watching my next move. I take a deep breath to calm myself. I am careful with my next words and actions.

I make a choice to advocate for my son by clearly and calmly explaining his need for a Teacher of the Deaf (TOD). The case manager addresses the rest of the team and asks their opinion. Everyone is silent. I look over at our district audiologist with a pleading look. He bravely tells the case manager that he agrees with me and that there is research to support what I am saying. 

The case manager looks at my son, and says to him, "Don't worry. I do not yet have the knowledge to help you. I need to get some more information and background so that I can make things better for you. I promise I will do everything to help you. I am sorry that you have been struggling and that we do not currently have what you need." 

The next day the case manager called to thank me for advocating for my son's needs and for helping her to better understand how to help him. She also acknowledged his bravery at being there to advocate for his needs.​

This vignette was from a time when Dalton was having a hard time keeping up in school. Homework each night was a full out meltdown and I was desperate for answers. In the above narrative I shared that I ultimately got approval to add Teacher of the Deaf services to his IEP. But, fast forward a few years, I should have trusted my initial gut instinct because just adding a Teacher of the Deaf was not enough.

As I said, I really thought that Dalton’s challenges were something more than deafblindness. But, when I talked with the IEP team, they steadfastly wouldn’t assess him for learning disabilities, anxiety, and ADHD. We ended up pursuing private evaluations to get those additional diagnoses. 

The evaluation process is fraught with emotions and if you, as parents, feel like no one is listening to youir gut instincts about your children, it can cause conflict. I was very upset in that meeting. No one, except me, was making any suggestions for how to help my son. Fast forward 3 years and he now has the support he needs, largely because I learned to trust my gut and keep advocating. He’s now doing really well with the additional support, now that we know that he has additional support needs in reading and executive functioning. 

Nilam Agrawal, one of Lane of Inquiry’s board members, shared in her January blog, Silver Linings, about similar struggles to get an accurate diagnosis for her daughter. Nilam wrote “Throughout her [daughter’s] education, no one had an explanation for why she was not able to learn to read, we were only offered assumptions that maybe it’s because of her hearing, or maybe it’s because of her vision, or maybe a combination of both.” After much advocacy from Nilam, her daughter has made major strides in reading this year and her daughter has gained confidence. “The biggest lesson for her was that her struggle with reading was not only because of her vision. In the past she did not know that she was experiencing a reading challenge, secondary to her vision. But she knew it now.”

Marnee Loftin, a retired school psychologist from the Texas School for the Blind and Visually Impaired has written many blogs about assessing students who have visual impairments for learning disabilities, ADHD, and anxiety. We have reposted (with permission) one of her past articles and added links to the other articles in our resources section that are published on the Paths to Literacy website. 

To any of you out there whose child is struggling, know that there are many of us who have tread this path before you. My advice is to trust your gut - you know your child - be your child's strongest advocate. Don't assume that professionals know best and don't give up. Be like my son with Usher syndrome and rise to the challenge of that ropes course of life.