What I was really asking was, “But what does it mean to have a child with Down syndrome?”
Lyra was less than 36 hours old when we met with the geneticist to determine if, as it appeared, Lyra had Down syndrome.
In the years since Lyra’s birth, I have learned many in the national Down syndrome community view geneticists as “often not our friends.” Nothing could have been further from the truth with the geneticist we met at Akron Children’s Hospital.
“Yes, she has the adorable facial features common in Down syndrome,” were the doctor’s first words after she’d placed Lyra on the exam table.
When my first child, Claude, was born, I read babies require somewhere between 5,000 and 7,000 diaper changes before they are fully potty trained. With the 18-year spread of my five children, I’m a seasoned diaper changer.
For months after Claude’s birth, a diaper-service truck would come to our house once a week, pick up a bag of dirty diapers from our porch and leave a bag of clean ones. All cloth.
Later I bought my own diapers, washed them myself and hung them outside to dry. One of the most satisfying things I’ve observed is the sun bleaching of cloth diapers. No matter how many detergent commercials refer to “sun clean” or “sun fresh,” it means little until you experience the real thing.
I continued this with my second and third sons, though with Jules I gave up on fancy Velcro diaper wraps (they inevitably leaked) and went old-school, pinning his cloth diapers and popping him into a pair of rubber pants (now made of plastic, but still called rubber pants).
I didn’t use cloth 100 percent of the time. Day care providers require disposable diapers, and disposables are easier when traveling. But beyond being better for the environment, I had read that wearing cloth diapers aids potty training.
Like the ads say, babies always feel dry in modern single-use diapers. Newborns void without any recognition of the event. But if they feel the wetness, babies begin to connect the acts of voiding with the physical sensations that occur just prior. Eventually, they know they have to go and make it to the potty.
Sounds so easy.
There are at least two methods of potty training. Some parents pick an age, commonly 2, and switch from diapers to underpants. My first day care provider, Edna Young, followed whatever type of potty training the parents of her charges chose, but she despised this first method.
“It’s just the adults who are trained to take the child to the bathroom,” she said. And also, “Parents who start too soon end up potty training much longer. Start when they are ready, and it happens very quickly, with little frustration for both the parents and the child.”
Edna taught me much.
My big boys potty-trained with few accidents by the time they were 3½. In preparation, potty seats appeared several months before needed.
When they were ready to try the potty seats, I had my boys pick out candy rewards. Gummy peach rings for number one and big chocolates for number two.
Each time we ran out, I replaced them with smaller candies until it was jelly beans and M&Ms. And then, I would only give them the reward when they asked for it. Eventually they’d stop asking.
This worked great with the first three children. Success was predictable, albeit with occasional accidents, and not an emotional ordeal that would scar the psyches of my boys. I believed I was a potty-training Supermom.
Then I had Leif. Whip-smart, I figured he’d be even easier to train than his brothers. Once again, I let a son pick out candy rewards not long after his third birthday. I stored them in glass jars on a shelf out of his reach in the bathroom — visual incentives.
Leif would ask for the candy, I’d remind him what he needed to do first and he’d give me the toddler equivalent of “meh.” Good hygiene need not accompany intelligence, or so I learned. Leif decided it was easier to let the rest of us change his diapers than be bothered toileting.
By his fourth birthday, we’d made little progress.
I complained to a much younger friend, who gave me this tip: Stop telling Leif he’ll get the candy rewards for using the potty. In fact, stop potty training altogether. Instead, whenever anyone else goes to the bathroom, make a big deal out of it.
Starting the next day, Max and my teen sons yelled out whenever they went to the bathroom and I showered candy upon them with excessive enthusiasm. In less than a week, Leif wanted in on the action.
Try, try again
That brings us to Lyra, my only baby who never wore cloth diapers. The first months of her life were spent visiting myriad health care professionals and preparing for eye surgeries at 6 and 7 weeks postpartum. We took every easy option available when so many important decisions were required of us.
When things settled down a few months later, we realized Lyra was regularly constipated. And while she’s not my first baby to suffer constipation, this was different.
People with Down syndrome, with few exceptions, have low muscle tone. Low muscle tone will delay when babies sit up, crawl, walk, run, hold a spoon or pencil. Low muscle tone in the mouth, and not poor cognitive functioning, is why many people with DS must work hard to speak crisply.
Human intestines, both small and large, have smooth muscles, and are also affected by low muscle tone.
Shortly before Lyra’s first birthday, we learned about Fruit-Eze. A jam-like blend of prunes, dates, raisins and prune juice, Fruit-Eze is a natural alternative to laxatives. Two tablespoons mixed into her breakfast each morning got Lyra going for about three years.
When she was 3, Lyra stayed dry every night for six months. But then she soaked her diaper every night for another six months. Too big for the Fruit-Eze to do its job without giving her more than she’d eat, Lyra was so constipated, her bowels were compressing her bladder.
A specialist told us to give Lyra Miralax, a product widely used by people with DS. At the same time, we learned it is not a true laxative, but works by pulling more fluid into the intestines. Determining the correct dosage took months.
Today, Lyra congratulates herself every time she uses the toilet. She also gives an enthusiastic, “Good job, Mama!” whenever she’s with me in the bathroom. (Do all young children follow their moms to the bathroom, or is it just mine?)
So, yes, potty training has taken longer with Lyra, but not for any of the reasons I might have imagined in the first days of her life.
Like so many things, people with Down syndrome just need more time to reach the same milestones as their typical peers.
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.
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.
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.
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.