We always knew that Ami was different than other babies. Special, even. She could read whole Dr. Seuss books at 2-years-old but couldn’t string together a sentence of three words spontaneously. She loved lining up her blocks neatly, orderly, but couldn’t understand how to build a tower. She could count to 100, she could sing songs, she could identify 12 different colors, nine different shapes, but she couldn’t hold a conversation about what was her favorite thing to do at the park. She couldn’t even tell you her name, let alone answer to it.
Communication with her was non-existent, but we could look into her eyes and know that there was a whole imaginative, colorful world behind them. We could tell that her brain exploded with creativity and that she had a wicked sense of humor, to boot. But we just couldn’t touch it.
The same corny jokes made us laugh, probably for different reasons, and I knew her laughs were genuine because of her so-called lack of empathy.
But we never knew what to name it.
Sure, in retrospect, it’s always easy to pinpoint the exact time and place. To be able to identify the precise moment in which we knew—ah-ha! Ami has autism. And yeah, we did know that she was a little quirky, but we just thought it was Ami being Ami.
During check-ups with Doctors, they reassured us, “Oh, she’ll grow out of it,” or “Well, keep an eye on it, but it’s probably just a phase,” and through our naivete, we went along.
Just to be completely clear, I do not blame them. Not one iota of me faults them for not pushing us on getting her evaluated when we could see she wasn’t holding our gazes anymore. I never felt filled with contempt for the doctors when Ami didn’t reach her milestones. I wasn’t upset when she wasn’t “growing out of it.”
I even joked when I noticed her lining things up for the first time, probably when she was about a year old, “Oh! I wonder if Ami is autistic?” but laughed it off and said, “Even if she were, it wouldn’t change how much I love her!”
For a little while after Ami’s first birthday we made bets on when she would start talking. I had said 13 months, someone else said 14 months, and so on. And as each month came and went, we had forgotten that we even made bets at all. Ami was just not going to talk and we weren’t going to pressure her into doing something that she wasn’t ready to do.
All of our family members loved Ami. On A.J.’s side, she was the first grand-baby among all of his cousins. Ami was also the first grandchild of my parents. She was sweetly quiet and liked to watch people around her, even as all of our cousins swooned over her. When taking her to family gatherings, she would always opt to being in the corner by herself and that was fine. I just alluded it to her being shy and that our families were loud–which, they are, and that’s what makes me love them–and that she would just want to play by herself or go to someone she was comfortable or familiar with such as an Uncle or me and A.J.
It wasn’t until I was pregnant with our second daughter and I was home on bed rest due to complications that we started to understand she wasn’t going to grow out of this any time soon.
I will have to say here that A.J. was amazing at helping to break down this barrier. He made it a personal goal to chip away at the wall that prevented us from being able to connect with our daughter through speech. With Ami’s love for letters, words, and writing, he used one of the little magnetic boards to prompt her with questions, like: Do you want water? And then he started writing: “I want water.” And Ami read it. She then walked to her cup and gave it to A.J. Ami wanted water.
Thinking it was a fluke he did it again. Do you want to eat? He then wrote: “I want to eat.” She read it. Word-for-word. And she got up to the kitchen and sat down at her chair and waited patiently for a peanut butter sandwich.
It worked! And after enough practice, it was no longer necessary to write the words to get her to speak.
Asking Ami a question and then writing down an appropriate response worked for her and we could finally hear her voice. Her sweetly, shy voice that was once locked up inside of her had been unlocked. We were far from having conversations with her but she was finally able to say words that we understood and she was able to get a response that gave her something she wanted in return.
Eventually we ended up with using a notepad so that we could write down sentences upon sentences of familiar words that we used for everyday interactions. We started to write down questions so that she could prompt us and then we would respond such as: “Can I have an apple, please?” She would flip through the pages of the notebook and read sentences–sometimes in context, other times just for fun. “Can I have ice cream?” “Can I watch Sesame Street?” “I want an ice cube.”
We finally were breaking through the wall. We could see our daughter on the other side. We were able to be present to her needs.
And so the first time she came running into the room and asked, “Can I have french fries, please?” without needing a book to read, I couldn’t help myself but cry.
Tears of joy. Of pain. Of anxiety. Of happiness!
Everyday is such a struggle for her, and that with each tiny step forward it is a world of effort. Through the tireless, endless hours of patience I could see these little improvements, and was reassured that we were doing the right thing.
So when Ami’s 4th-year checkup comes and we take her into the doctor, he was very clearly concerned. We took Ami in on a Friday and her doctor tells us that if we don’t hear from him by Tuesday to call, but he called us that Saturday to let us know that he thinks our daughter has autism.
This is the first time any doctor has linked those two words together–Ami and autism–and it just hit me like a ton of bricks. Ami might have autism? How could that be? Was it something I did? Did I not give her the right vaccinations? Did I give her the vaccinations too early? Too late? Was it because of my diet during pregnancy? Was I a bad mother?
I was wracked with grief and disbelief for a week before I was able to snap out of it. My daughter needed me. She needed me to schedule appointments. She needed me to get her assessed.
Ami’s pediatrician provided a referral to the only children’s hospital in the area that could perform the evaluation. As with anything that is specialized and is the only place in a large metropolitan area, there was a wait list. A LONG wait list. The first appointment was more than three months away.
It was a long several months, with several meetings and reviews, but then the diagnosis day came. September 30th.
We shuffle up to the doctor’s office. She is already waiting for us in the lobby and greets us with a very warm smile. I assume she’s done this so many times before. Let the parents feel at ease so that the realization of what they will be having to discuss will smooth over easier.
The doctor sits us down and hands A.J. and I our own reports. Single-spaced, printed front and back, 10 pages altogether. She lets us read through before talking about it. This process feels kind of clinical. I read things such as “Ami is really cute” and wonder what that may have to do with the analysis. I read things about how Ami was “not compliant with [tests]” and laugh at things such as Ami loving to sing the “Twinkle Twinkle Little Star” song that was pre-programmed in one of the toys.
It was Ami written out on a sheet of paper and I couldn’t help but feel both anxious and overwhelmed. I knew that this wasn’t going to be the last time she was going to be written up in this manner and I was sad that for the rest of Ami’s life she was going to be labeled and prescribed, diagnosed and held under a microscope.
But what does this all mean? Well, to simply put it, it’s just a way to describe a certain set of Ami’s quirky behaviors. It’s not a terminal illness. It’s not a death sentence. There is no need to offer condolences. She’s not going anywhere. She’s here to stay.
Now begins our long, long, LONG journey of being able to get the exact help Ami needs. We have a piece of paper so that people will look at our daughter and help her. The most important thing there is for Ami is that we’re here. We’re present and we want to help her. We will never leave her side.
My daughter is autistic and that’s okay!
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Reposted with permission from Renee Ya’s Blog.