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Diagnosis- A Difference Not A Disability

Many of us fear having a diagnosis. We have lived through the stigma and possibly the pain of a label. So why would I want my child to have a neurological assessment, where they could end up with what might be perceived as a negative label or disability. The thought then comes to mind, “My child is not disabled, they are whole and complete”. I want to affirm you, if this is your thought. I celebrate you for seeing your child for who they truly are. For a diagnosis is a mere snapshot of one part of their being.

Everything in the statements above rang true to me when I was contemplating having my child assessed. Honestly for a few years I refused to have my child assessed, even though I knew something was not right. I told myself the teachers said it will all work out and how is a label going to help. The summer my child was entering third grade, I started taking a deeper dive into what was really going on around my child’s learning. I took my child to an Ophthalmologist who strongly advocated for vision therapy. She told us, yes vision therapy could help but I feel your child is dyslexic and you need to have an assessment to see what areas in particular are creating issues. We then spoke to a friend, who was a principle at a school for dyslexic students; he told us the same thing. I still had my feet in the mud. I did not want a label put on my child. No way was someone going to tell my child they were disabled.

A month later we started with a new Ortho Gillingham tutor, one that you follow her rules or you find a different tutor. She told me I cannot work with your child until I see what their dyslexia looks like through the assessment results. Even though it was becoming clear that I needed to do this, I was still so apprehensive. How could I do this to my child? The process of just taking the assessment alone seemed to be jaunting for a child, especially one who is in elementary and has only known struggle. All of this had come from a deep seeded pain in me, for I had the label of learning disabled growing up and it did a number on me. I always told myself I was stupid no matter how smart I was or how well I did. The truth was I learned different and internalized my learning process as stupid. In those days no one had empowering vocabulary like neurodiversity or even learning differences. Adults did not sit down with you and explain to you what learning differently meant or even the strengths that go along with it. Disabled carried such a negative connotation and you were left to decide on your own what it meant to the outer world. As child we tend to go to the scariest or most negative meaning.

Before making the decision to have an assessment I had not contemplated how this process could all be approached in a more positive light with a child. Nor did I see the doors that could be opened up by knowing exactly what is going on with their neurodiversity. My child already knew they learned differently from the kids around them. They knew they were struggling and these feelings were starting to be internalized that they were not as smart as other, (farthest thing from the truth).

With a diagnosis my child could understand why they felt different. It would allow them to understand how they learned and to begin their own journey with dyslexia. To start realizing that dyslexia is not all of them. Dyslexia does not define who someone can be but it gives them the clues on how they need to be supported and learn.

Do not get me wrong, we all mourned when we got the results that this was dyslexia. Honestly we were already grieving the struggles my child was facing and this just opened the flood gates and let us have that moment of sadness. I was also determined that my child would not be told that they had a learning disability but that they had learning difference. I made it very clear for those people who worked with my child that I wanted the word differences used and not disability. Yes, at times the word disability is needed to get services but it does not need to be part of your child’s vocabulary. Our family loves the terms, neurotypical and neurodiverse. We are all about diversity in our family, so we would much rather be diverse than typical. That is something to celebrate and I hope you will celebrate that in your child too.

To sum things up making the decision to have an assessment can be overwhelming, downright scary and the last thing you want your child to have to do. However, having a clear picture of what their learning style looks like is the key to getting the right support, tutors, accommodations, specialists, etc. Remember this is one small snapshot of who that complete incredible being is. This part just needs a little extra nurturing, understanding and support. From here your child and you can start to include this part of them in their life journey. It will have its ups and down and as village we can support one another to make it through the low points and celebrate the victories.

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