When Another Parent Misunderstood My Daughter on the Spectrum

We were at my daughter’s first kindergarten birthday party. It was at a bowling alley. She was super excited. She’s been to a ton of birthday parties, mind you. That in itself is not new. She is a veteran party-goer. She loves a good party. But this was the first birthday party she was invited to since she was officially a full-time, mainstreamed kindergartener. She hit the big leagues, so to say. My daughter was about to turn 6 herself in about a week and a half, so birthday parties in general were the topic of conversation on the way to the party. She was in her booster seat with her service dog laying right beneath her feet while she chatted away. My, how time has flown by, I thought in my head. Here she is, talking a million miles a minute, partly to me, partly to herself, partly to her service dog, and then sometimes she’d take a break to sing along with a verse or two of a Kidz Bop song on the radio. She never stopped once. But that’s my daughter. Go, go, go.

“Mama?”

“Yes,” I answered.

“You be there the whole time?”

“Yes.”

And so we began our list. She loves lists and she loves forecasting. She likes to know how the day will play out. Routine is very important to her. So much so that I write out a chart in the morning for her to check off. She likes to talk about the days of the week, where she’ll be each day. (She even likes to ask me how old I am, almost every. single. day. So I am happy to report, as of this writing, I am still 42.) So we reviewed the plan for the day. As we get closer, she makes the plan into shorter, briefer words: “Park the car, get the present, get the service dog, go inside, have cake, bowl, have a party, leave, go home, see my sister…” and it goes on. We review it a few times. If we deviate, we discuss. I let her know I am not sure when we’ll have cake. She is not liking that. I told her we will deal with that part as it comes.

My daughter’s challenges are not always apparent. So much so that many think (and say) “it looks like there’s nothing wrong with her” (whatever that looks like, I am not sure). However, she is indeed on the spectrum. Her being on the spectrum may be harder for other people to understand than it is for me, her own mother. It can also be hard for others to swallow when I let them know she has a mild brain malformation. Again — harder for others. I am 100 percent at peace with these “things.” She also has minor focal seizures — which we hope may go away some day — chronic lung and ear/sinus infections and a developmental delay. These are also things I am at peace with and accept. I love my daughter exactly as she is and as she continues to be. As she grows, she continues to amaze me. She is a wonder.

Later during the party, I watched and listened in amazement at her growth, as she can now communicate completely independently and use her words. I saw her put her fingers in her ears and she leaned up against the wall. The birthday girl’s big brother (he’s in second grade) went up to her to see if she was OK and then came up to me. “What’s wrong with her? Why is she being weird?” he asked me. But not in a mean way — he was really concerned. I answered him, “Well, we’re all a little different in our own way. Sometimes we all need a break and express it differently.” He thought about my answer most sincerely. I could see it in his face. He stared at me and then at her.

I walked over to my daughter with her dog and asked her to follow me. We went down a long corridor together. Someone who I am guessing may have worked there asked if we were OK and if we were “really going to sit there on the carpet like that?” And I said, “Yes. Really. We are.” And we did. We took a break with my daughter, her dog and I on the carpet in the middle of the corridor on the floor. We sat in silence. I said nothing. She petted her dog. Then she laid on him. I petted him, too. After about 10 minutes, she sat up. “OK,  I am ready now.” Again, I was so impressed with her ability to communicate and verbalize her needs to me. It’s amazing how far we’ve come. So I stopped her right there and hugged her. I hugged her hard. I told her I loved her. Just as she was. She told me she was thirsty. Even trade.

We went back to the “alley” where her lane was. Her best friend was waiting for her, and her best friend’s mom was there, too. My daughter overheard her friend’s mom say something, and my daughter repeated it like she sometimes likes to do. She then questioned what the mom said, confused after having taken it literally. The mom, irritated, corrected her. I softly intervened as I knew my daughter was in a “good place” after the break and I didn’t want her to lose that. So I tried to help. I explained to the mom, “She means no harm. She likes to repeat what people say sometimes, and sometimes she can take things literally, that’s all.” The mom shot me a look. “Well, isn’t this the age?” she said curtly, and she turned away annoyed.

My face turned red. I looked away and blinked back the tears. My attempt to talk to another mom was quickly shut down and misunderstood very fast. I wasn’t embarrassed at all by my daughter. Not one bit. That was not why my face was red or why there were tears. I think my reaction was shock at the realization of how little communication I have with other moms “out there.” It hit me cold in the face. She totally didn’t “get” me or us or any of it. I felt very misunderstood for my daughter.

Meanwhile, the older brother of the birthday girl came barreling over to me. “Hey! Hey! I have been looking for ya! Where’d you guys go? Was everything OK? Was she OK?” He was genuinely concerned. What a sweet kid, I thought. He continued, “I got a strike! She missed it! You missed it! I wanted to tell her! I can help her bowl… if she wants me to? Her dog can come with us? How can I help?”

And just like that, a second-grade boy, who was only there for his little sister’s birthday and who only asked one simple question about a girl and her dog, “got it.” Amazing.

I later found him and my daughter together with a bowling ball. He was attempting to teach her how to put her fingers in the three holes, which she wanted no part of. I took a picture of that moment. It was priceless, because he totally let her be her. It was awesome.

That boy reminded me of the mom I have been for close to six years. The mom who is proud. The mom who is 42 years old. Every day since my birthday. The mom who is on schedule (so far…) this week. And the mom who hopes to continue to watch her daughter be everything she hopes and dreams to be.

Thanks, kid.

Image via Contributor.

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