Firsts

Standard

I was thrilled the day my baby daughter, Jillian, climbed onto our slightly-raised fireplace hearth for the first time. Enormous brown eyes shining, she smiled brilliantly at my exclamation of surprise and praise. I knew right then, with the absolute certainty only new mothers possess, that she was extraordinary and would take this world by storm.

She’d been born prematurely, along with her twin brother, Richie, at 28 weeks. That’s three whole months early. At birth, our babies were more fetus than baby, and their fragility was emphasized to us at every interaction with the NICU staff. No, you can’t touch her yet. Today’s tests showed bleeding in her brain. Don’t talk or rock while you’re holding him or his heart will stop.

One harrowing year later, I stood in my own living room with an intact and grateful heart, watching joy itself climb onto my hearth.

With help from weekly physical therapy sessions, Jillian had caught up to the standard developmental milestones. Richie, however, continued to lag behind and was labeled as “developmentally delayed.” At age one, when most babies have already taken their first steps, he was not yet able to sit up.

Still unable to walk after his second birthday, Richie developed a wonderfully unique way of rolling and twisting to get himself around the house. He’d turn corners by doing something of a swimmer’s kick, pushing off the wall in the direction he wanted to go. To fend off my own worry about his future, I’d joke that if I could just sew him outfits made of Swiffer cleaning cloths, I’d never have to sweep the floor.

When Richie was 2 1/2, a new physical therapist named Jenna came to our house for their first session together. Within minutes, Richie took his first steps, with Jenna right behind him. Yes, he was leaning on her a little, but those steps were all his.

That was the first of many firsts for Richie, but it was the last one of those “standard developmental milestones” we cared about. Richie was clearly….Richie. He would be neither measured nor contained by any standard anything. The usual yardstick was no longer our yardstick.

At age four, he was formally diagnosed with Autism. Our first action, while waiting for therapies to begin, was to remove gluten and dairy from his diet. Although not scientifically proven, the anecdotal evidence was staggering and we wanted to give him every possible advantage. A week later, we rejoiced when he said his sister’s name for the first time: Jillin. And even Jillin, only four years old herself, felt the magnitude of the moment and locked eyes with us in triumph.

At six, another big first. I recorded it this way on Facebook:
“[I’m] still feeling a little giddy over the fact that last night, Richie spontaneously answered a question with “I don’t know” for the first time EVER! We’ve been working on this for at least a year; he used to just completely ignore any question he didn’t know the answer to. Last night he said it like it’s been in his repertoire for years. Yippee!”

A few months later, my husband and I were making eyes at each other during a long car ride because the kids were in the back seat fighting. With each other! We let them continue for quite some time so we could just savor it.

Another first for Richie – forgery – came in second grade. I never thought I’d laugh out loud at having my identity stolen:

forgery

And then there’s the profanity. One Sunday when he was ten, we were walking out of church carrying big bouquets of flowers to deliver to homebound members. As we were exiting the sanctuary, it dawned on me that it was also the first Sunday of the month, which meant that we should have been in the booth recording the service. But I’d forgotten completely, and now it was too late. As usual, what was on my mind came right out of my mouth, and both kids realized our mistake. I’m sure Jillian said something comforting like, “It’s okay, Mom.” Richie looked right at me, right there in church,  and said, “‘Oh, shit!’ Right, Mom?”

So many feelings! Hopeful, that no one else heard him. Guilty, that I was most likely the one who had “taught” him this word. And absolutely thrilled, since he’d been making eye contact with me when he said it.

We talked about different types of words, and that curse words are offensive to some people, so he really shouldn’t use them. Richie took this lesson to heart. A few days later, we were playing in the house when he stepped on one of our dog’s well-chewed Nylabones (think stepping on Legos in your bare feet). He sucked in his breath, started hopping around on one foot, and his eyes got really big. Wanting to give him some appropriate words, I said, “Oh, NUTS!” He gritted his teeth and repeated “NUTS!” quite loudly, and then added an aside in a quieter voice: “but not ‘oh, shit,’ right, Mom?”

The Hug

September 29, 2016, was the most profound first of Richie’s life so far. He’d had a long day: school, homework, a little Xbox, more homework, dinner, some exercise, more homework. It was time to be in bed, but he still had one last assignment to complete. Because he was so tired, a worksheet his classmates had probably spent five minutes finishing had now dragged on for over thirty. He’s diligent about his homework, but he was stressed, he knew he was behind schedule, and the little noises he makes when distressed began to escape him.

Then he looked over at me and asked, “Mom, because I am getting really upset, can I have a hug?”

I froze. Simultaneously, my stomach dropped and my heart swelled. This was a first I hadn’t seen coming, or even knew would ever come. Never before had my son asked for a hug. Never before had he given any indication that a hug could be a source of comfort for him. Yes, I had asked him for a million hugs. Some he’d given willingly; other times, he’d turned to the side and offered just one arm, or done a 180-degree turn and only allowed me to hug him from behind. But this never stopped me from asking. I couldn’t let it.

For one thing, I love his hugs. For another, hugs are just one more item on a never-ending list of things that are hard for Richie, but that it would be good for him to learn to tolerate: eye contact, loud noises, crying babies, radio static, disappointments, changes in our plans.

So my husband and I – along with lots of therapists and teachers – and of course Jillin – have been pushing Richie out of his comfort zone for years. Sometimes I’m confident that despite Richie’s protests, I’m doing the right thing. Sometimes I want to take it back, take the discomfort away, and let him do whatever he wants. Lucky for me – and Richie – I have a smart, strong husband who stays the course when I cannot.

And so now here he was, at age 12, asking me for comfort, reassurance, and support. And asking for it in the form of a hug: something he’d struggled with all his life. Something that had slowly, with repetition, turtle steps, and do-overs, become meaningful and valuable to him.

The hug Richie gave me – and that I gratefully gave back – was longer than I expected. It was tender. It had to be adjusted and rebalanced several times as we both relaxed into it.

And then it was over, and he got back to work.

I sat in stunned, grateful silence, memorizing everything. Yes, that hug was for Richie. But it was also for me. I closed my eyes and thought of all the moms who long to hug their kids but don’t get to, for any of a multitude of reasons. I thought of all the Autistic people – kids and adults – who long for comfort, but are too overwhelmed by their own sensitivities to be able to ask for or accept it.

Keep trying, friends. Keep pushing. Never give up.

 

 

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8 thoughts on “Firsts

  1. nancy campbell

    Read this early this morning and still have a lump in my throat and a few tears in my eyes. My dream is that you will publish this (and the other posts) in a book so that others and especially other parents of these beautiful children can share your memories and thoughts. You and your family are so special and I am so proud of you all! You are so talented and have such love in your heart along with a great sense of humor. You are loved! Aunt Nancy

    ________________________________

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  2. Reading this was what I needed today. Frustration and a hectic schedule have been shading my interactions with the kids, especially Jossy.
    Tears. Deep breath.
    Thank you for this Amy.
    And I’m so happy you got another first and got to enjoy that hug 💕

    Like

  3. Marla

    Beautiful story of Richie’s many accomplishments and how your entire family always supports and guides him. That was a well earned — and deserved — hug for the BOTH of you!

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  4. Our dear Richie and family! Grandma is still learning, I settle for a handshake if he is not up to a hug. Taking the easy way out is not the way to teach. Such admiration and love for this family. Few years ago have seen sister calm R. when he was upset over something. He is so loved and gives his all to learning. One of my favorites, when he knows he is being teased in good humor, responds with, “I am not falling for that one!”. Gram

    Like

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