Tag: #diagnosis

What’s wrong with her?

Three times in one day I was asked, “What is her diagnosis?” I despise that question. And, I normally don’t handle it in the way I want.

Sometimes I say, “Well, she has high tone.”

Or “She is hypertonic.”

Or “We don’t label her.”

Or “Her dad and I have decided that when Teal can talk about it herself, she can tell people her diagnosis, but we don’t feel like it is our right.”

You know what I really want to say to these “oh, you don’t mind me asking, do you…” people…SHUT THE F-UP…WHY DOES IT MATTER? And, who are you to have the nerve to ask? And, yes, I do mind you asking. And, mind your own Goddamn business. And a slew of other things I don’t feel comfortable writing here.

God…I hate it. And, the biggest thing I struggle with is that I’m not ashamed of her diagnosis. I just don’t think random people need to know. I literally had a woman who had seen Teal maybe 3 times say, “If you don’t mind me asking, what is her diagnosis?” What? Really? When I told her that we don’t label her and all of the above statements…she got mad. I type this and laugh. SHE was the one who got mad. The nerve. Seriously, she stormed out of the market in a total huff all pissed that I wouldn’t tell her what was wrong with Teal.

Because, that’s what people really want to ask. They are desperately curious to know why she isn’t “normal.” What’s wrong? They are uncomfortable because they want to put her in a box and label her so they can feel better. So, they can take a deep breath and know it’s not contagious, it’s not catching. This is the truth. People don’t like to see something that is different from them.

Now, I know I am stereotyping. I know. Not every person feels this way…but as a mama lion…I will claw the eyes out of those people who do fall into that category. And, I’m shocked at how many more people fall into this category than I would ever expect. Sure, people say they want to know so they can treat her better or so they can better understand her. Bologna. They want to feed their own curiosity. And, it pisses me off.

I came home that day all in a fluster. I was desperate to find a way to answer that question without being a crazy mama lion while still standing up for my daughter and the respect we have for her. My husband, a friend, and I came up with this…

“How will the answer change how you interact with my daughter?”

I’ve tried it out in my mind and it still sounds bitchy. And we thought about…

“Why does it matter?”

I am still struggling months later. I still don’t know how to answer it. If you have an answer and are willing to share, please comment or send me an email at Jen@ForOurSpecialKids.com. I’d love to know how you handle this question.

And, please know…it’s not that we’re ashamed of her diagnosis…it just doesn’t matter. She is amazing, incredible, and so much more than a diagnosis!

XO

Jen

Hope

On my podcast, For Our Special Kids, at the end of each episode, I used to ask the question, “What is one word that you would use to describe a child with special needs?”

The word “hope” never came up. Looking back, I am actually shocked it didn’t but I’m also not shocked. Ha Because hope is absolutely NOT the word I would have used when I received Teal’s diagnosis. Sitting across from a calloused, been-in-the-industry-too-long, neurologist who had no bedside manner and should never have been delivering diagnoses to parents … I couldn’t have felt further from hope. Despair maybe. Confused, yes. Shocked, absolutely. And WITHOUT ANY hope, yes. Certainly not hope or hopeful.

But, that was over 5 years ago. So much can change in 5 years. Heck, so much can change in 5 months or 5 days. 5 minutes.

So, why would i use the word hope to describe a child with special needs? Aren’t they the farthest thing from hope? Don’t they struggle with everyday things like eating, dressing, walking, talking…almost everything? Most children with special needs, not all, struggle with something quite large each day. For my Teal, she’s struggling to express her needs and emotions with words. Oh, and eating too. And, selfcare. Ha…Teal struggles with lots. And, yet, I would absolutely use the word hope for my magical little girl.

Desmond Tutu once said, “Hope is being able to see that there is light despite all of the darkness.”

This is the hope for which I am referring and I imagine the others were as well. It is the light in the dark. A cool breeze drifting on a hot night. The rainbow appearing after the storm. The soft touch of your child’s hand. The caress of a lover after tears of sorrow.

It can be one brief moment in time that shifts all your perspectives. Hope is fleeting at times for us as parents and caregivers.

However, what if you look at your child with hope and you see hope within them? How does your perspective change? My daughter is the light in the darkness. She is the cool breeze, the rainbow, and the soft touch. She is the hope we need to see in this world.

Our children are the light. Our children are the hope. They are the ones who show us the way through the darkness. They are the ones taking our hand and guiding us on this journey. They are here to teach us to see a new perspective. They are here to help us evolve into better humans and to see our life on Earth with a new lens.  

We must begin to look through their eyes. And, when you do, you won’t see so much darkness in this world, in your life, in your days, in your moments…or in theirs. You will see the light.