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.
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.
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:
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.
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Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.