The 3 Words That Put My Daughter's Diagnosis in Perspective
We never knew where Zoey fell on the autism spectrum. We had a second opinion today with a different pediatric neurologist who has just as many diplomas and degrees on his wall as the first neurologist we saw in August.
Where does she sit on the spectrum? That has always been my question and no one could answer me… until today!
Zoey has classic severe nonverbal autism.
I was praised for getting her diagnosed so early and was told she is getting more than most 2-year-olds as far as therapy goes, with great therapists. I’m doing everything I can do! I’m doing it right!
Then why does it hurt so bad? I went in there and said, “Yes, I know she has autism.” I never doubted that. I wanted to know where she was… because she can’t tell me where she is… she screams out of frustration and tries so hard to communicate and help us to help her, but it’s painful! Painful for us to watch her scream out of frustration because she wants to eat or drink but the words don’t come out and she can’t point to what she wants, so she goes to the kitchen and screams.
Yeah, I wanted to hear something different today… I wanted to hear, “I think it’s an inner ear issue that could be contributing to her lack of speech.” The answer was no to that!
I watched as she turned the lights off and on in the exam room, and when we moved the chairs, I watched as she moved them right back so that she could keep doing it. I then watched as I said, “All done,” and she screamed at the top of her lungs and then threw herself and had a meltdown in the room.
I finished with the neurologist and we said goodbye while she listened to Michael Buble’s “Lost” on my phone to get her to calm down. We walked out with the neurologist saying, “She has great taste in music!”
She held my phone as I got her into her car seat. I gave her the “blankie” and not long after she was asleep.
I called my husband and told him about our visit and he said, “It changes nothing.” That is the same exact thing he said to me with her initial diagnosis in August. As I cried into the phone, he knew why I was crying. I don’t care about the autism; I wanted to hear something else, something that went like, “Yeah, let’s check her inner ear to see if there is an issue contributing to the lack of speech.”
Why did I want to hear that? Watching your child throw herself on the ground because she can’t tell you she’s hungry or thirsty, or that her ears hurt her or she needs something. She can’t point or ask… she screams! Watching her scratch and dig at her mouth out of frustration, because her mouth can’t say what is in her head, what she wants or needs. I wanted someone to say, “We can help her with her frustration!” It is excruciating and heartbreaking. You see, I can accept autism, but the frustration that autism brings is not fair! I wish things could be easier for her.
She slept in the back as I cried in the front because I can’t take away that frustration.
I cried and tears were all down my face. I waited in line at the McDonald’s drive-thru to get her chicken nuggets, which I knew she was just going to eat around the crunchy batter and throw the chicken on the floor. As I waited, I remembered my husband and what he said…
“It changes nothing.”
She’s our child.
She has classic autism.
We love her.
I still wish I could ease her frustration.
Follow this journey on the Facebook page Life With Zoey.
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