My Child is More Than a Diagnosis
Autism.
Borderline Intellectual Functioning.
Anxiety.
Complex Medical Profile.
Severe Speech Delay.
Risk for ADHD.
As I sit and read my five year old daughter’s recent neuropsych evaluation, I can’t help but feel helpless when I repeat these words in a continuous loop in my head.
My daughter was diagnosed with autism at the age of 2 (rare for a girl) and we have moved the moon and stars to give her what she needs to be successful and most importantly, happy. And she is.
She’s come so far.
The first diagnosis was hard. Seeing these words on paper and knowing the mountain your child needs to climb is daunting. It seems so negative and impersonal. They don’t know the child holistically.
Yes, on paper they include her strengths recorded from conversations with parents and from their brief observations. But in the end, it really all comes down to testing. Testing is something that my girl struggles with.
With this knowledge, I realize that these words don’t accurately portray the strengths and beauty of the whole child I see in front of me every day.
Here’s is what is NOT included in this report:
Her inspiring creativity and pretend play. On any given day at our house, it can be Christmas day, her stuffed animal’s birthday party, or she’s a doctor with a patient. And if she can’t find one of her props? No problem – she can turn anything into a prop with her vivid imagination.
Her motivation. This girl works SO hard. She essentially works the equivalent of a full time job with the hours she spends in therapy. She is begging me to learn to read. The schools say she doesn’t need to learn this skill yet, but I have taught her to advocate for herself. We will make it happen.
Her resilience. She falls down, and gets right back up again. Most new tasks or skills she learns are broken down and repeated over and over. Learning is hard for her, but I often hear her say to herself, “I can do hard things. I want to try.” She knows that it’s okay to get it wrong, but to keep trying.
Her dreams. Every day she reminds me of her dream of being a scientist and creating medicine to help people. Every day she dresses up with her white coat and mixes her pretend potions to create medicine.
Her intense empathy for loved ones. When I cry, she cries, and is right there with me. When her brother is sad, she sits with him until he is better feeling all the emotions right there with him.
Her ability to plan and organize. You can often find her planning a birthday party for her stuffed animals, complete with a full menu, invitations and outfits.
Her infectious smile that lights up a room and our world every day.
Her ability to see the joy in life’s simple things; feeling the breeze on her face, running in the leaves and rolling in the mud.
So, yes, on paper I know what we need to work on and will use it to advocate for what she needs to be successful. But, I also know that this is not a holistic view of my child.
She is not simply a medical diagnosis on a piece of paper. There is more to this amazing kid.
So, I will take a deep breath, gather my village, and take it one day at a time. And, most importantly, advocate like a mother.
Written by, An anonymous mother
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