Julianna's first day of special-day preschool after the school districts confirmed she had developmental delays. A year later, it would be a diagnosis of autism.
It was the year 2005. I was a young mom, living in on-campus student housing, and my husband was about to graduate. The day started like any other. I was home with my little redhead of 17 months. Because she was my first child, I had all my time to give her, so I would read her books, teach her colors and shapes, and do my best to help her learn. I had no other children of my own to compare her to, but there were plenty of toddlers in the apartment complex. To me, she seemed fine, happy, and content, except for one big thing: she wasn't walking yet, and I planned to bring this up at her 18-month checkup. I didn't feel the need to be concerned--after all, in my "What to Expect" book, it said children should be walking at the latest by 18 months old, so she still had time, I thought, and we practiced taking steps every day. But I still had some doubts. Why did she seem scared to walk, I wondered? And why did she like to shake her head, and stare at ceiling fans, and flap her arms, and put everything in her mouth? These questions I could not answer, but didn't think they meant a diagnosis.
I got a knock at the door. Not uncommon in this close-knit community. It was my new neighbor who lived below me. We hadn't talked very much yet, but I would see her at church, and say hello. Her face showed concern and worry, and she simply said, "I feel like I need to tell you something."
I invited her in to sit down on my thrift-store couch. She seemed a little hesitant to speak, and I wondered why. Though I can't remember her exact words, I think it went something like this:
"I've noticed some of the behaviors your daughter displays at church. [pause...] I think she has autism."
Autism. What was autism? In the year 2005, it wasn't talked about as much, but flipping through channels, I had overheard things about it, and from what I remembered, autism did not mean something good. My voice began to shake, panic began to settle inside my chest, and I asked, holding back tears, "Why do you think that?"
She continued, "Well, I've noticed that she likes to shake her head a lot, and flap her arms. Those are symptoms of autism. I work at an early intervention preschool with children who have autism."
So those little behaviors that I would try to get her to stop doing, that she sometimes seemed obsessed with doing, actually did indicate something. But autism? Now images and past knowledge was creeping into my brain, causing even more panic. Wait, children with autism couldn't talk! They needed help with life skills, and help in school, help socializing! This wasn't my daughter! She knew her colors and shapes, and could sing songs with me!
I replied, "But she can talk! I thought children with autism couldn't even speak. And she seems to play okay with other kids."
She told me some kids with autism are able to speak, but that there are certain red flags to look for, and Julianna had some of them.
This is when I couldn't hold back the tears. The next thought to enter my mind was, "Did I cause this? What did I do wrong? Did I ignore her too much as an infant? I was busy with college classes. Maybe it's my fault."
So I asked her, the tears spilling out now, "Was it something I did wrong as a mother?"
She began patting my back gently, and said, "No, it's nothing you did. This is not your fault."
And for the next few minutes, I wept on that couch, my neighbor still sitting next to me, while my precious daughter was on the floor playing. I just cried, for I don't know how long. She let me cry, as I was overcome with emotions of fear, worry, and despair. After I regained some composure, she gave me a hug, a long hug, and she said goodbye. I wonder if she cried, too.
I closed the door, and again looked at my little girl. Autism? This can't be true. Just 15 minutes ago, I felt like things were okay. I ran to her, held her on my lap, and cried again, for probably an hour. I cried thinking about what her future might be like, if she'd ever learn to read or be able to go to a normal school, if she'd ever have friends or get married, if she'd love me like other children could.
Just hearing one word, autism, completely changed my life. I didn't want to believe it. I began researching everything I could find online to prove otherwise. I wanted proof that she didn't have it, so I wouldn't have to worry anymore. So I'd find a website that listed autistic traits, and do the checklist, and be relieved because she didn't fit the criteria. I did this for days, trying to put this thought out of my mind. And I somehow convinced myself that she didn't have autism, for another year and a half, until I couldn't deny it any longer.
What my neighbor did was probably the bravest thing she could have done. Telling a parent that his or her child has autism has to be one of the hardest things to do. I'm sure she agonized over whether to do it, but in the end, she knew that because of her background and education, she had a duty to inform me. In that moment, I was upset, even angry, but looking back, I'm so glad she told me, because we moved away just two months later. She helped me to see my daughter in a new light, though it took a while for me to accept it.
Some might think that telling this to a parent is not appropriate. But I think she saved my daughter, and for that, I will be forever grateful.
My sister had the conversation with me. Must have been so hard for her so brave! And I.m pleased she did with early intervention he.s come leaps and bounds
ReplyDeleteSo glad to hear this! It must have been brave for sure! Happy you had a good experience!
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