Uncategorized

Where There Is Love

“I don’t buy cartoons for Valentine’s, you know that,” I said, standing in the kitchen. Hugo snatched up my hands in his and lifted them up as though he were going to kiss my fingers. Instead, he began running in place, giving my hands little squeezes to punctuate his points.

“No, but wait, wait, The Book of Life is both a love story and a musical. And…it’s really, really good, and you loved it too!” he said in the little-kid voice he uses when he wants something from me. “Please, please, please? Oh, and, uh, guess who’s never seen it? Go ahead, guess!”

“Oh, that poor girl,” I said knowing exactly whom he meant, “What has she seen? Anything?”

“Nope, nothing important. Not until me.”

Hugo, who might categorize such things with different criteria, is in his first serious relationship. Soon after he and his young lady became an item last fall, Hugo started steadily showing her all his favorite movies, many of them past Valentine’s gifts, including Across the Universe, Seven Brides for Seven Brothers, and last year’s mold-breaker (because it’s not a musical but, oh, so wonderful), About Time.

I took Hugo’s argument under serious consideration, as I have in the past, but perhaps more so this year. For next year, with any luck, Hugo will not be here; he will be off at college training his already lovely baritone to perform on professional stages. Yes, our Valentine’s tradition of giving the kids a DVD of a (usually classic Hollywood) musical will continue and, as has been the case with his older brother, Claude, I am sure Hugo will return home each year and view the latest love story. But it’s different when they are living mostly away at school and this one, Hugo, particularly needs to go to a college somewhere far enough away that he can’t pop over and do his laundry on the weekends. Or beg me to do it for him.

Time Turns

IMG_1955But it is not only Hugo who will transition this year. Max and I try to find ways to bind our two little children’s experiences with those of the big boys, which isn’t always easy given the nine-year gap between Jules, the third child and Leif, the fourth. That is why we decided, among other reasons, to send Leif to the Waldorf school when he was three (and had finally potty trained), the earliest the school accepts preschoolers. For two years, Leif and Jules have been schoolmates, sharing the same rituals and traditions, including making Valentines for all their classmates and teachers.

Jules was six months old when I first enrolled Claude and Hugo at the Waldorf school in January of 2001 and we began making the 70-mile round trip drive from our home in downtown Cleveland to the school, doing so for three school years before moving to Akron. Rather than drive 140 miles each day by going home and returning, I stayed in Akron most days, often volunteering at the school. With Jules in a baby backpack, I helped prepare and serve the once-a-week hot lunch. When he was older and could walk and follow instructions, toddler Jules was my assistant, passing out napkins and silverware to the “big kids” in the preschool/kindergarten class.

At our Waldorf school the students stay with the same teacher from grades one through eight. Now in the eighth grade, Jules and all his classmates have been together since kindergarten, the only exception being a child who joined them at the beginning of first grade. Next year, as we do not have a Waldorf high school, these kids will enroll in at least five different schools with only one child possibly joining Jules at Firestone High School. Rather than making his Valentines as he has always done, this year Jules bought a box of notecards. He wanted to write something to each of his classmates because Jules has recognized, somewhat suddenly with this sweet holiday, that a large part of his childhood, really his entire life thus far, is formally ending.

Knowing When Love Is Real

There I was, all last fall I telling Hugo, Research schools and apply now. I cajoled him, Just think of all the cool places you could go next year! I explained ad infinitum the benefits, If you start applying now we can have this all done by winter break! And I threatened punishment if he did not apply to some freaking colleges already, with absolutely no results. Then, in late November, his vocal coach told him to apply to the Eastman School of Music. For those of you who don’t know, like me until a few months ago, the Eastman School of Music is on the same level as music schools such as Oberlin, Indiana University, and Juilliard; it’s a “reach” school. Yet once some other, non-related, adult told Hugo to apply to this vaunted college, he was like, “Oh, sure, no problem, I’ll get right on that.” Thanksgiving weekend, while the rest of us were with Grandma and Grandpa in northern Michigan, Hugo stayed home and recorded a DVD with the help of his vocal instructor, filled out the application, wrote the essays and sent it all off to Eastman. A month later, we learned he had passed the pre-screening and was invited to audition. And somehow this also inspired Hugo to go ahead and apply to five more schools over the holiday break. Note to self: This boy always pulls important stuff out of his butt last minute. Your adrenal glands will thank you for not worrying next time he procrastinates.

I drove Hugo to Rochester the night before the audition in the midst of a severe snowstorm. With much of Interstate-90 down to one lane, I stayed behind semi-trucks when I could because, in the rapidly accumulating snow, they laid down a set of tire tracks I could follow. What should have been a four-hour drive took more than six even though we did not stop once until we arrived at our hotel. In the quiet disorder of the unplowed parking lot, the cars looked tumbled about as though tossed like fistfuls of dice. I stepped out of the driver’s seat of our car and when I pushed on my spine and twisted, it sounded like someone opening a tent’s heavy-gauge zipper.

“Look,” I told Hugo while we were still driving through Pennsylvania, “It’s a long shot, both getting into Eastman and getting the money we’d need. But here’s the thing, it’s your first audition, so you can tell the rest of the schools that you auditioned at Eastman and they’ll know that meant you made it through the pre-screening. And besides, it’s good practice auditioning at a place like that.”

The next morning, the drive to the audition was as dismal as the night before. Snow still fell heavily and we were running late. Two minutes after I pulled onto the freeway outer belt surrounding Rochester, a cop pulled me over. And gave me a ticket. The Eastman School of Music fully occupies one city block in downtown Rochester. I pulled up to the main entrance and Hugo jumped out of the car. The moment he walked into the auditorium, he told me later, the dean of the school began speaking. By the time I had parked the car, walked over and found Hugo, the dean was gone, replaced on stage by a jazz quartet. When they stopped playing, the applicants were separated from their parents.

When did we each first feel it? I can’t say. Maybe immediately. Certainly when we met for coffee an hour after he had left the auditorium with the other students. Eastman is the place for Hugo. Nowhere else have I ever seen this boy—the one who daily pounded on the window of his daycare while sobbing when I dropped him off, who was horribly misfit in his Waldorf class only to feel abandoned when he transferred to our city’s public middle school for the arts and who eagerly wants to be done with high school—completely in his element. And although he was giddy, he remained centered, if not surprisingly relaxed, when his ability to read music was tested and faculty members interviewed him. More excited than nervous, Hugo took me with him to warm up in a small soundproof room with a piano. I rubbed his neck and shoulders and listened to him go through the three pieces he’d prepared. Then we waited in the green room.

“Can I see him perform?” I asked a graduate student after Hugo had been led onstage.

“No, but you can hear him through the crack between those doors,” he told me, pointing to a set of doors that were an exit from the first row of the auditorium. I pressed my ear to the crack only to jump back when the woman who had introduced Hugo pushed the door open on her way back to the green room. And for a brief moment, seconds only, I saw Hugo onstage, smiling and singing as if there was nothing he would rather be doing, which, on any day, there isn’t. How did he do? If he does not get into Eastman, then it was not meant to be for there is nothing he could have done better at any moment that day.

And This Year’s Movie Is…

Each year before purchasing my Valentine movie for the boys, I check for a film I love so much I have (without their knowledge) never let them see the more famous remake. And while I have a few, this film stars one of my all-time favorite actresses, Irene Dunne. She of crackling wit with Cary Grant in the films The Awful Truth and My Favorite Wife, both of which are said to have been largely improvised. Not a comedy, however, the movie I have sought for years, with no luck, as it remained unavailable on video or DVD, is the epic musical, Show Boat.

poster-show-boat-1936_01-1A success on Broadway, the Kern and Hammerstein musical boldly deals with issues of race, who can legally marry, and single-motherhood and is as timely today as when it was released in 1936. Reviving the role she played on Broadway, Helen Morgan, with her dusky voice, plays the “passing as white,” mixed-race star of the show boat. Morgan’s own life was no less tragic than that of her most memorable role and she died of cirrhosis five years after the film was released. But if that is not enough to invite anyone to watch this early film version of Show Boat, the chance to listen to actor Paul Robeson sing “Ol’ Man River” should be enough. Unfortunately, for a number of reasons, including Paul Robeson being blacklisted for his affiliation with communism, the original Show Boat was entirely unavailable from 1940 until 1983. I have only seen it twice myself at special showings in repertory theaters, the last time being many years ago. But with love comes faith and as I again looked up this film last week on Amazon, I hooted with delight to find it is now available on DVD. I ordered it immediately.

Not only to please Hugo, my next fledgling, I also ordered The Book of Life for even though this Guillermo del Toro production is a cartoon, like last year’s film, it is as much a movie about the love of family, friends, and place as it is about lovers.

Now, please, go find someone to hug. Or watch movies. Or both. Happy Valentine’s Day!

 

Advertisement
Lyra's Latests · Uncategorized

Comparing Lyra

Historically, I have not been a parent who has put much emphasis upon babyhood milestones. I was not concerned with the boys’ height and weigh percentiles. They held their heads up soon after birth, rolled over by three months, sat at around six months, crawled soon after mastering sitting, pulled up and cruised furniture by one year, walked at fifteen months. I never watched to see if they grabbed things by raking them into their hands or developed the pincer grip (thumb and forefinger). When I listened to them babble, I didn’t take note of what sounds they were making. Eventually, they all started talking—Hugo and Leif rather early (sentences at 18 months), Claude just before two years and Jules rather late (sentences at two and a half). The truth is, nothing about the way my four boys grew from infancy to babyhood to toddlers was remarkable.

All of that unremarkable development seems so luxurious now.

Getting Lyra Going

Lyra seems like any other baby. She sits up beautifully, reaches for toys, scooches 360 degrees in a seated position and backwards crawls. At nearly seventeen pounds, Lyra looks and behaves like any ten-month-old. But she is fifteen months old. Today, we have what we didn’t have a year ago, a span of time to see precisely what it means to have a developmentally delayed child. It is not that she can’t or won’t do certain things—she just acquires most skills at a slower pace.

We heard last summer at the NDSC’s convention that the purpose of therapies is not to hit milestones at the same time as most typical children—the purpose of therapies for children with Down syndrome is to teach them the best way to use their bodies. Because most babies with Ds have low muscle tone, or hypotonia, and laxity in their ligaments they often overcompensate with less than ideal habits, which can be hard to correct. For example, it is better to have a child with Ds slowly learn to walk with the proper foot strike on the ground than to have them walking earlier with pronated feet.

Lyra herself has a little compensatory trick she uses to go from sitting up to lying on her belly with minimal engagement of her core muscles: Sitting with her legs in front of her at 10 and 2 o’clock, she presses her face to the ground in between her legs and, finally, slides her legs out and back, like a swimmer’s arms doing the breast stroke. “Wow, is she flexible!” people have told me when they’ve seen her do this little gymnastic move. But this move does not train the muscles of her body to move the way she needs them to for later skills such as getting up to a seated position from her belly.

Imagine a tight spandex mini-skirt. Now imagine that a seam is sewn half way up the middle of the mini-skirt and you have Hip Helpers. Lyra wears them for an hour or so each day as she plays on her tumbling mat. With them on, Lyra cannot do the splits, and when she can’t do the splits, she engages inner thigh muscles, which is necessary for pulling up onto her hands and knees (the four-point position needed for crawling).

Lyra first popped up onto her hands and knees by herself four weeks ago, after months of working toward that goal. Every day she does it a little more and a little more. Once she gets her core strong enough, she will crawl on her hands and knees and as far as we are concerned, she can crawl for a good long while before walking. With my older kids, I was eager for them to walk because it meant I no longer had to worry about them crawling on dirty floors. However, crawling promotes kinesthetic brain development, helping the left and right sides of the brain to interact with one another—a fundamental requirement of later learning. Luckily, winter has set in here in Ohio and Lyra’s spends most of her floor time in our mildly clean house or that of her (far cleaner) daycare provider’s house.

Other Babies

Recently, we were invited to brunch at the home of friends we go far too long without seeing. Like our Leif, their son will be four in a few months and their daughter, whom Max had not yet met and I had not seen in six months, is eight months old. A baby ready to meet the world with eyes the size of shooter marbles, she seemed both relaxed and eager and didn’t hesitate when I took her from her mother’s arms. The first thing I noticed was how taut her core muscles felt under my hands as I held her. And then she reminded me that other babies grab on with their hands, like little monkeys who won’t fall off if you let go.

Lyra has a snuggly softness to her, even though she sits up ramrod straight, because her muscles are just never as taut as those of most typical babies. Though her hands are not flaccid noodles (as evidenced by the bruises she gave me a few weeks ago when pinching the underside of my upper arm while nursing) she does not grip onto me like a little monkey.

The two boys at Lyra’s daycare who were born the same summer as Lyra are now both walking. I remember when they first began rocking themselves on their hands and knees in preparation for crawling as Lyra does now. It was many months ago. Still, when seated together on the floor, the three babies play together as any group of one-year-olds will. Which is to say mostly parallel play with occasional toy snatching.

Hypotonia Is Everything

Low muscle tone. It is why Lyra does not hit the typical milestones. However, her muscles can be trained and they will get stronger. “The first two years with a Down syndrome baby are a lot of work,” Lyra’s current physical therapist told me and she’s right. As her parents, it is our job to make the work of Lyra’s muscles strategic, so she strengthens the right muscles and learns the best techniques for mobility, grasping, speech and feeding.

Twice a month, Lyra sees a team of therapists at Akron Children’s Hospital. The occupational therapist helps Lyra with her fine motor skills, things such as stacking rings on a stick, placing toys into a container (Lyra mastered getting toys out of containers long ago) and using that oh-so important pincer grip. The speech therapist helps us strengthen and organize Lyra’s mouth, using various tools and techniques, but Lyra is most happy when her speech therapist sings with her. On her last visit, Lyra said “down” repeatedly as her therapist sang “The Itsy-Bitsy Spider” while Lyra followed along, watching the therapist’s face. Lyra held the therapist’s hands, pulling them down with the rain that washed the spider out.

And, of course, Lyra receives physical therapy. We were able to see the ACH physical therapist before there was availability in what they call the “Infant Block” of all three back-to-back therapies. Since she first sat up on June 27, Lyra has made tremendous progress and I credit this progress to what we have learned in physical therapy. We’ve had to repeatedly change our goals for Lyra as she keeps meeting all that we set for her.

Another physical therapist comes to our home about every two months. The State of Ohio funds outreach programs for what they term “medically handicapped children” and with Down syndrome, Lyra qualifies. The benefit of home visits is that county physical therapist looks at the home setting, and can make unique recommendations. For example, last time she was here, she showed me that the tumbling mat that Lyra plays on is perfect, when folded in half, for Lyra to kneel next to with her knees on the ground and her arms on the mat (a variation of the four-point position).

Last year, Lyra worked for many weeks on rolling first from her belly to her back and then the reverse. Today she flips herself over and up whenever she wants, including the middle of a diaper change when it is entirely unhelpful and I have to remind myself of the time spent working with Lyra on her first major mobility acquistion. Eventually Lyra will master all the skills of mobility. And she will talk, feed herself, hold her pencils in a perfect pincer grip as she does her schoolwork. Someday conjuring the time once spent helping Lyra acquire the mastery of her body will be as abstract as remembering the work it took to successfully consolidate two full households into one, also a two-year gambit.

Keeping Calm

All of this intervention, of course, is only helpful if we incorporate it into as much of Lyra’s daily routine as reasonably makes sense. Most of the time I feel like we do a passable job, with some weeks better than others. Oh, sure, we bought a $150 speech kit at the NDSC convention last summer and other than taking out the honey bear cup (which facilitates drinking from a straw) the kit sat unopened and the two-hour video unwatched. For over four months. Recently, I took the kit along to Lyra’s speech therapy session. The speech therapist was delighted to explore the kit with us and showed me which items we should be using and how to use them. And then she asked if she could borrow the video. “Oh, please do!” I told her, thinking somebody should watch it (guilt bomb that it had become) and then maybe I could crib her viewing notes.

And that is how it is, we do what we can, we see steady progress and we let go of the milestones. Or, as I wrote in Fully Human and Needing a Civil Rights Movement, we remind ourselves:

The goal of early interventions is not to speed up the achievement of developmental milestones; the goal is to learn the skills correctly, which is much easier to do than it is to unlearn incorrect patterns that a child has developed as compensatory techniques.

Great, got it. Check. And then we visit the doctors.

“Can she go from belly to sitting on her own yet?” No.

“Does she forward crawl on her hands and knees?” No.

“How about on her belly? Forward belly crawling?” No.

“Can she pick things up with a pincer grasp?” Maybe. Sometimes? I don’t know.

“Does she sing with you?” No. But she loves music!

“Is she cruising furniture?” Definitely not.

“Is she making p/b sounds?” I don’t know!

I know these questions, asked at well-baby pediatric visits and at the Down Syndrome Clinic, help assess Lyra’s skills in order to set goals, but as I answer the litanies, I shrink inside. We have to have goals, I understand. But the line between working towards goals and attempting to speed up the achievement of milestones can seem porous. Even Lyra’s pediatrician, Dr. M, who has a daughter with Ds, will highlight other children with Ds who have hit milestones at early ages, Someone did this, this and this and their child was walking by eighteen months. Well, what if Lyra isn’t? Is she a diminished child? Am I a derelict mother?

Age and Experience

Were Lyra my first child, maybe we would do everything for her that we now do and feel confident in our efforts. More likely, however, I think I’d be a basket case, never feeling like I was adequately working with my daughter and that her entire life’s happiness depended upon my ability to maximize early interventions. Questions about milestones from strangers and even friends might make me feel antagonized.

But Lyra is not my first child. I am older and have raised four reasonably well-adjusted boys. When I was a young mom, I learned something from my homeschooling friends that has served me well: Focus on outcomes. For example, in annual testing, Waldorf educated students don’t score at the same level as public school students, they generally score lower. But by the eighth grade, they generally score higher. Furthermore, Waldorf graduates often approach learning differently than their publicly schooled peers, having come up through a system that teaches the whole child, meaning not only their heads, but also their hearts and bodies, how to learn. The Waldorf pedagogy, which does not aim for testing outcomes grade by grade, seeks and often succeeds in cultivating an inquisitiveness that the students carry on to their subsequent endeavors.

This intense period of training Lyra and her body, strengthening her muscles, developing the correct skills will someday result in it all coming together. She will walk, talk, use utensils and much, much more. Whether this happens at 18 months, 24 months, 36 months, or even longer is not what is relevant. What is relevant is that she will, at her own pace, fully acquire all these skills and more. I know this because raising my boys trained me to trust my parenting instincts.

The Recurring Message

Funny thing, timing. As I worked to finish this essay, another mother of a child with Down syndrome shared this academic article from Britain, which compares responsive teaching to early intervention for children with Down syndrome. Looking at several studies conducted since the 1980s, researchers have found that babies with Down syndrome whose engaged mothers responded to the child’s initiated communication and activities scored higher on developmental testing than did the children whose engaged mothers generally tried to teach their babies something new (the poor babes with unengaged mothers, or ignorers, fared as badly as one would expect). Or put more simply, when the child directs the communication and activity, development is greater than when mom directs the communication and activity. Stop talk, talk, talking and start listen, listen, listening. Instead of “And now today we will learn this or that, little person,” observe your child’s interests and work from there.

Again, this dovetails the Waldorf pedagogy, which was thoroughly developed to meet children where they are with educational instruction. From the outside, a Waldorf education may look like not enough is being done soon enough to give a child the skills necessary to succeed. But as a bee cannot access the pollen of a closed bud, forcing open the blossom of a child’s mind is surely not a healthy path. Responsive communication, meeting children where they are, encourages engagement and, therefore, greater communication. Not surprisingly, this same article highlighting the greater level of success in responsive communication over a top-down early intervention approach in the developmentally disabled population points out that the same results were found in similar studies of typical children.

Our interventions with Lyra, and our the therapists who guide us, apply this approach. When Lyra babbles, we babble the same sounds back to her (she loves this), teaching her words as they naturally arise, such as “more?” and “please” when feeding her. We play with the toys she’s interested in and use them to encourage her movement. We fill small cups with her favorite snacks, which requires her to reach in and pick them up with her fingers rather than raking them up off of her highchair tray. And we do all of this occasionally, some days more than others.

What We See

Lyra pivoting in her high chair and leaning over the side with her attention riveted on Leif, seated next to her in his toddler chair, as he chatters away at the dinner table.

Lyra raising up her arms when we come close, letting us know she wants held.

Lyra taking her pajamas, diaper or whatever clothing she finds on the floor and moving them over her body as though she is trying to dress herself.

Lyra consistently and appropriately using the American Sign Language signs for “please,”  “more,” and “hi.”

Lyra enthralled with every moment of back-to-back Kindermusik classes (hers and Leif’s).

Lyra at the window on the Polar Express waving and saying hi for ten minutes to all the people dressed as elves at the “North Pole” (a.k.a. Peninsula, Ohio).

We see a bright little girl who calls us dada and mama and who is engaged with her brothers, her daycare provider, playmates and anyone else she happens to meet. Regularly, I watch Lyra observing other people in a manner that I can only describe as keen. She takes things in. Will we notice cognitive delays when she is older? Probably. If so, we will support the development of her cognitive skills just as we have her physical development. Our goal is not to get her, or any of our children, a Mensa IQ. Our goal is to raise happy, engaged and productive humans who find value in the lives they lead and who approach the world with curiosity and compassion.

Author Richard Ford once said, “I’ve chosen a life smaller than my ‘talents’ because a smaller life made me happier.” This is not to advocate mediocrity per se, but a higher level of being that takes into account multiple aspects of existence beyond external assessments of accomplishment.

We can only know ourselves through our interactions with others. The proverbial wise man on the mountain may have to confront his hunger, the elements, and certainly boredom. But he will not truly know himself until he is among other people, comparing himself to them and observing his own responses. We compare Lyra to other children from time to time, it’s inevitable. And it helps, me at least, keep a perspective on Lyra’s journey.

Other people compare Lyra too, giving us an added layer of interaction with the rest of humanity. We know this because no matter everywhere we go, people go out of their way to tell us how beautiful she is. They come out from behind counters at shops and gas stations, waitresses who are not tending our table make their way over in restaurants, strangers stop me on the street. This may sound harsh, but I really don’t think Lyra is beautiful, at least not in the conventional sense. Her eyes are small and prominent in her face are the characteristic features of Ds. Each time these unsolicited compliments are paid to Lyra’s beauty (always the adjective beautiful, none other, though if they talk a long while they inevitably also call her adorable), I want to ask if in so saying do they mean I see she has Down syndrome? And are giving some type of encouragement? I don’t know because I’ve never asked. I suppose their intention, regardless of the inspiration, is kindness.

I hope they will feel the same way when Lyra is an adult.