“I feel… the way she is acting,” the young woman with the long dark curls said while pushing the round rimmed glasses further up on her nose.
“Yeh, me too!” I laughed, not noticing anything particularly different about her.
We were in a bowling alley of all places. Hope, never having been to a place where heavy balls are thrown down a long wooden lane, causing pins to spectacularly crash and fall, was bent over holding her feet. Every once in a while, she would look up at me, grit her teeth, and shriek, but for the most part, she simply held on tightly to her feet.
“Does she have Autism?” was the next question, which I found to be odd, since it is obvious that both Hope and Charlie have Down syndrome.
“No, just some pretty significant sensory issues…..and Down syndrome, of course. The loud music mixed with all the action is causing her to feel overwhelmed right now, but she’ll manage it. I just have to sit near her and support her,” I answered, pleased with myself for being so succinct.
Without missing a beat, she replied, rather matter-of-factly: “I have Autism. That’s why I asked.”
What? How could I….the mother of three special needs children….miss the signs? Is it possible, I wondered, that I don’t know everything there is to know about the special needs community? (insert a roll of the eyes, because I totally deserve it)
“Really?” I asked, showing a sincere amount of surprise, “I would’ve never guessed that.” It was true…she masked her disability remarkably well.
“I’ve just learned to deal with it.” Her voice, a bit nasally, became, at once, charming to me.
I then asked, in a nonchalant way: “What do you mean?”….while the “real me” wanted to drill her with all sorts of questions. My mind was a buzz.
“I feel like her,” she said, leaning over me and pointing to Hope, who was still holding tightly to her feet, “but I just hold my feelings inside now.”
That really peeked my interest. I wanted to know HOW she learned to hold her feelings inside, however the irony of the situation was impossible to gloss over since my nine year old was still gripping her feet as tightly as I’m gripping my wrinkle cream every night (hey, I’m 46 now….what’s a girl to do?) I looked at Hope and then over at my new friend. It was hard to believe the twenty-something year old next to me, who seemed quite composed, felt as miserable as Hope was acting.
“Tell me how you feel.”
“I already did. I feel like her.” Ask a stupid question, right? OK, I had to think quick and change the way I worded the question.
“Well, how does she feel? I don’t have Autsim, so I’m not sure how she feels….and I’m her mom, so I want to know.”
Dropping her chin toward her chest, her brown eyes glared at me over the top of those humongous spectacles…shouting out to me that I SHOULD know how they both feel….probably wondering whether it was worth her time and effort to try to explain it to me.
“I mean, do you feel overwhelmed by all this noise?” I asked, prodding her along.
“Yes, of course. It feels like it’s all beating in my head. And it hurts.”
“And all these people jumping around, that bothers you?”
“Yes, I wish they would all sit down and be quiet,” she said, looking over toward a group of people who were way too excited about the competition, “and I wish the noise would just stop.”
Then she shook her head and added: “Geesh, and people say I’m impatient.”
I’m guessing she was referring to the people jumping around….but it is possible she was referring to me.
“How do you keep yourself from acting like her?” I asked, tilting my head toward Hope.
“I wish I could act like her, but I’m too old for that now.”
Obviously that is what she had been told….probably over and over and over and over again….and it had stuck.
I threw the next question out to her, hoping against hope for an answer I could hang onto for my daughter’s sake: “So how do you deal with it?”
“I hum a pretty song in my head….or I play my DS.”
“Are you humming a pretty song in your head right now?
She then delivered a look of exasperation that said our conversation was quickly coming to an end.
“Am I asking a lot of questions?”
“Do you wish I’d give you a break?”
So we sat there together. Not talking. Until it was time for me to leave. I said “good-bye”….and she sort of nodded at me.
My takeaway has been huge. It’s true, she did tell me what I already knew about Hope. When a kid grips her feet and shrieks when confronted with bright lights, loud sounds, and a frenzied situation….well, it’s pretty obvious she is feeling overwhelmed. However, what was news to me is that Hopey may just have to learn to cope with her feelings….to mask them….just as my new friend had learned to do. And as a momma, I want those negative feelings to go away. I want to fix them. Can you relate?
More than anything, though, I saw into the heart of my baby girl who does not have words to speak to me. Through my new friend, I heard my daughter’s feelings. That her head actually “hurts” from too much external stimuli.
Just at the point when I thought I knew all compassion….
When I was certain I had bumped into the final wall of patience….
And when I knew my love could grow no deeper…..
I found more!
Today, Hopey had one of her meltdowns. And I remembered. So instead of trying to talk her through it or hold her through it, I placed my mouth against the temple of her head and hummed a pretty song. And it worked.
Thank you, new friend!