Changing Expectations: Lyra’s Latest

May 15, 2013June 28, 2013 whoopsiepiggle9 Comments

Lyra's feet, dirty from playing in the grass — Lyra’s feet, dirty from playing in the grass

“I recently read that all people with Down syndrome develop Alzheimer’s in their forties or fifties, is that true?” I asked the pediatric geneticist as she examined our two-day-old baby. A few months earlier, I had read a Newsweek cover story about the care of adult children with developmental disabilities. The sentence about Alzheimer’s had leapt out at me even though I had been told there was little reason to suspect the baby I was carrying had Down syndrome or any other medical concerns. When she was born, however, she had several Ds markers—upslanted eyes, a tongue that darted out of her mouth, and sandal toes (her big toes are far from her little toes, almost as though they were attached as an afterthought). Even before we went to the lab to have her blood drawn, we understood that the genetic testing would only to confirm what we already knew. We had known it in our hearts since I had commented, moments after her birth, that Lyra’s eyes looked “kinda Downsy.”

“You know,” said the geneticist, “it’s really hard to predict what you can expect, what with all the therapies they have developed, things have changed so much in the last twenty years for children with Down’s.” That sentence stuck in my head even while the first few weeks of Lyra’s life found us submerged by what having a child with Down syndrome can mean, including finding resources to help us learn what we could about our daughter’s condition and, of course, dealing with her cataracts and eye surgeries. All the while, the geneticist’s words whispered repeatedly in my mind, with all the therapies they have developed.

Entirely Different

The remarkable increase in life expectancy in recent decades was one of the first facts we learned about Down syndrome and it highlights the dramatic improvement in the research, care, and therefore, quality of life for a person born with Ds today. In 1985, shortly after Max and I graduated from high school, the life expectancy for a person born with Ds was just 25. Today it is 60 and that number is expected to continue increasing as modern medical research also continues to advance the understanding and amelioration of Ds. Not only are people with Ds living longer, they are living vastly different lives than they would have half a century ago. In fact, as the National Down Syndrome Congress has shown with their “More Alike Than Different” campaign, today most people with Ds can expect to lead rather, well, “typical” lives.

Why Are Things So Different?

Until the 1960s, most children born with Down syndrome were institutionalized. When I was growing up, it was rare to see someone with Ds. I never had a classmate with Ds nor do I recall any special classrooms for children with Ds in any of the schools I attended. And I am not aware of any families who had children with Ds, which doesn’t mean that they didn’t exist, but those that did were perhaps institutionalized and not discussed.

Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in1964, a study was conducted comparing infants with Ds who were institutionalized to a group that were home raised. The study continued until the children were eight years old and found that children with Ds who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.”

It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Ds. Children with Ds most often meet and regularly exceed the goals set before them. The myths on what people with Ds are like and capable of have been falling like scales from our eyes and today there is every reason to expect a baby born with Ds to have a full and productive life, including mainstream schooling, college, independent living, careers, even marriage and (what surprised me the most) driving automobiles. All of which indicates that as a society, we were operating on grossly false assumptions for many decades, tragically so for children born with Ds prior to the 1970s.

Not So Pretty

In the mid-1980s, my father and stepmother worked in a group home for adults with developmental disabilities, including some with Down syndrome. Across the nation, long-standing institutions that had housed people with developmental and physical disabilities were closing and group homes were opening to meet the need to care for many of these people. My parents worked in a freshly constructed ranch-style home, built to house eight residents. In the center of the ADA accessible house was a kitchen and living room, and on both sides of these common areas were four bedrooms, one for each resident.

I was eighteen in the spring of 1984 when I took a Greyhound bus from Tucson, where I was living with my grandma, to Northern Michigan. I had not visited my family since leaving two summers earlier. When my father picked me up at the bus station in Traverse City, the hour long ride to the house was awkwardly filled with fits and starts of conversation. We had not yet talked about why, after living with him and his family my junior year of high school, I had decided to return to Ohio and live with my mother for my senior year. And we never did. Instead, we talked about my half-sisters and other people we both knew. Eventually my dad began telling me about the job working at the group home and we both relaxed. My dad felt like he had finally found his career calling and with his eyes cast on the road ahead of us, he effortlessly described his work, the words pouring like water from a full pitcher.

The day after I arrived, my dad took me to the group home to meet the people he worked with. Many of the residents were in wheelchairs and most were overweight. When my father talked with the residents, introducing me to each of them, I could not understand what they were saying. I tried to be friendly, but the truth was, I couldn’t wait to leave. I didn’t see people, I saw drool and adult diapers.

“How do you work with those people every day?” I asked my dad when he got home, “Isn’t it depressing?” Which was a fair question. Depression was like a card my dad carried to excuse himself for his significant inactions, especially as they related to those of us who, from time to time, would reasonably wish to lean on him. People like his wives and children. Then again, I ask myself, who among us has not risen to his or her better self with strangers while our seamier aspects are saved only for those who know us best?

“You know, Hol,” he told me, “if you got a job there, after a week you would no longer notice the disabilities of the residents. They’d just be the people you worked with, just like anywhere else.”

“But they aren’t like the people anywhere else,” I said.

“Actually, they are. You would soon know them as Jim or Bob,” he said naming a few of the residents at the group home. “You’d know what they like and how they’re doing, just like you would with anyone in any job. And really, Hol, you’d no longer see their disabilities, you’d just see them as the people they are.”

Let me stop and say that I am not upset with the younger me who, the first time I was introduced to severely disabled adults, recoiled. At the same time, my chest physically aches to think that anyone would feel similarly about my daughter when she is grown. My ignorance was ugly, but I did not remain ignorant.

As with many things, education builds awareness, exposure builds understanding.

Loving People

My father worked at the group home until he moved to Arizona in the early 1990s, where he also worked with adults with developmental disabilities. Over the years, I came to feel I knew some of the people he worked with because of the stories he shared. Many had spent their entire lives in institutions, which was at the root of some of their more difficult behaviors. For instance, both my parents told me they worked to get the group home residents to eat their meals slowly and not scarf their food without swallowing. In the institutions, residents were fed in large cafeterias with little oversight and many had learned to eat as fast as possible in order to prevent anyone from stealing their food. Back then, eating at a table in the group home was often a resident’s first experience in family style dining with no threat of bullying.

My dad became particularly close to one of his clients in Michigan. A quadriplegic, Jim found work typing out address labels (this was before computers were ubiquitous). My father jerry-rigged a helmet by affixing the writing end of a pencil above the center edge of the helmet’s brim. With the helmet strapped firmly under his chin, Jim’s head bobbed over an electric typewriter as he used the pencil’s eraser to type out names and addresses on sheets of labels. Jim used the money he earned typing labels to buy gifts for his girlfriend. She lived in a different group home and Jim saw her on weekdays at the adult day care facility they both went to. Like Jim, his girlfriend was in a wheelchair. But on more than one occasion, the two of them somehow managed to get their shoes and socks off and were found sitting away from any activity, their bare feet entangled.

One evening when I was living in Boston, my dad called me from Arizona. In 1995, before cell phones found their way into everyone’s pockets, long distance calls were expensive and, thus, infrequent. Claude was a year old and I’d long gotten over my squeamishness of body fluids. Beyond diapers, I’d thought nothing of holding my baby as he repeatedly vomited on me a few days before his first birthday. Comforting my child trumped the sour smell of puke. Sure, he was a baby, my baby even. But nothing could have made me love him any less than I did including, as I discovered a few years later, a learning disability.

“My friend Jim died,” said my dad when he called. It was the closest I’ve come to hearing my dad cry. Maybe he was crying. I didn’t ask.

“Who’s Jim?” I asked instead and he reminded me of the resident in the Michigan group home. Once he’d moved to Arizona, my dad came home only a couple of times for important events like weddings. When he did, he always went over to the group home where he’d worked to visit Jim. My dad did not learn about Jim’s death until weeks after his funeral, but even if he had learned immediately, he would not have been to leave work and travel so far on short notice. Sitting in my kitchen in Boston, I listened to my father as he talked about his friend at length, a telephonic memorial service of two.

Those Therapies They Have Developed

One of the common issues that nearly all children with Down syndrome face is hypotonia, or low muscle tone. It can cause them to have trouble eating, speaking, learning to sit up, crawl, walk and run. (For more on the challenges facing babies with Ds, consider clicking the link for this well-written post from the blog, “Noah’s Dad.”

As expected, Lyra does have hypotonia, but I believe it is only mild to moderate. She does not spring with wirey muscles like my boys did when they were infants and babies, but neither was Lyra ever a “limp noodle” as so many babies with Ds are described. When she was four months old, I began taking Lyra to both speech and physical therapy at an office recommended by our pediatrician, Dr. M.

Physical Therapy or Breaking It Down to Pull It Together

When my dyslexic sons, Claude and Jules, learned to read, we had to break down the cognitive understanding of sounds and symbols. With Jules, I had to spend months making up silly rhymes and alliterative phrases so that he could hear the similar sounds. Once letters and their sounds were memorized, all combinations had to be taught. And because the English language is comprised as much of exceptions as it is rules, countless “sight words,” or words that don’t follow the rules, had to be memorized too.

So it is teaching Lyra to move her body through space—something I took entirely for granted with my four previous children. The first thing Lyra’s physical therapist, Heather, showed me was to pull Lyra up into a seated position by her wrists. Lifting Lyra slowly, her neck muscles engage and get a work out. By the time she was five months old, she was not only holding her head on her own but she keeping it upright as we bounced her on an exercise ball. Yes, the exercise ball is a big part of her PT, which for now has the overarching goal of getting Lyra to sit up and crawl. Lyra gets a better abdominal and arm work out each day than I do (though my muffin top and bat wings tell me I need to correct that).

Little things feel like milestones. Things like Lyra jumping in her bouncy seat, her head held erect as she springs her body up and down, or rolling on the floor from her back to her tummy and over again onto her back, or purposefully reaching her hands and arms towards a toy she wants, or sitting upright in the middle of our laps where we can catch her when she lists. Lately, Lyra’s been bearing weight on her hands and arms when she is on her tummy, a sure sign that crawling is coming. We want Lyra to crawl, and crawl for a long time, not only so she can move herself to where she wants to go, but also because of the well-documented, kinesthetic brain development that crawling enhances.

Speech Therapy or Everything to Do with the Mouth, Including Eating

For two months, Lyra’s speech therapist helped us try to teach Lyra to take a bottle. When she was nearly six months old, we all gave up. This is the first of what I suspect will be a lifetime of wondering whether something about Lyra is simply her personality or her Down syndrome. With the bottle, I believe it is personality. She breast feeds like a champ, which requires more muscle strength than bottle feeding. However, the time spent with the speech therapist was not invaluable as we learned many mouth exercises that we continue to practice. These exercises, mostly mouth massage—both inside and out—have helped Lyra “organize” her mouth. As a result, her tongue thrusting has greatly reduced and she has had no trouble learning to eat solid foods from a spoon.

Later this month, we will revisit the speech therapist to evaluate Lyra’s speech. But at nine months old she has long blown raspberries, babbles what sounds like the cadences of a distance conversation and then, as if providing commentary on the speech of those around her, will say, “Blah, blah, blah.” These are all very good signs for speech development.

My Head and My Heart

When I hold my baby girl, I do not see her Down syndrome, I see my daughter. We all adore her and love to make her laugh, but she is mostly like any other baby. Jules delights in walking his fingers up Lyra’s sides to her armpits to get her to belly laugh. Leif holds Lyra’s hand and jumps with her as she hops up and down in her bouncy seat. All too often when they are playing on the floor, Lyra manages to grab a fistful of Leif’s long hair and pull it with all her might, causing her brother to scream in pain. The big boys send Max and me on dates, willingly keeping both of their younger siblings, caring for them with a naturalness that belies experience.

But here is a true confession that makes me cringe: I am still a work in progress. I know in my head that when she is older I will see and love Lyra as I do now. Maybe she will be as accomplished and “mainstreamed” as the adults with Ds in the “More Alike Than Different” video. But maybe she won’t.

I recently saw a lovely child with Ds, who was perhaps nine-years-old, happily engaging other people, especially little children. But when she spoke, I could not understand her and in that moment, and I felt the scabs peel off of my heart to reveal how attached I am to speech. I had to take Lyra to a corner of the room and nurse her while I quietly wept. I looked down on her dainty round head and, wondering if she’d ever speak clearly, I felt smacked by what is not alike, but different, about my child with Down syndrome.

A few moments later, a young mother whose son is only weeks older than Lyra came and sat by me. She has a soft voice with a southern accent I cannot place, but which calmly drew me out of my sorrow. She told me her child could not keep food down because of reflux and he was chronically ill because, as they had recently discovered in a swallow study, he aspirates his liquids. A first time mom, this woman’s dedication to her child is both fierce and gentle. Knowing how overwhelmed I was with my firstborn, who had no physical challenges whatsoever, this woman’s tender acceptance of her child and his mighty challenges guided me back to my center and I stopped leaning into my fears of the unknowable future.

We are a very verbal and literary family and we all enjoy talking, reading and writing. Two of us have made careers out of it and Claude may well too. My head tells me that Lyra will communicate effectively because she already does. She is not shy and her desire to interact with other people will propel her abilities to speak and/or sign (just as my own extroverted nature helped me learn French when I was a student in France). As her life unfolds, my heart will catch up with my head and I will continue to see my daughter as the person she is, not the extra chromosome she has.

What gets me into trouble is forgetting to stay in the moment.

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The Spring of Chaos

May 2, 2013September 15, 2013 whoopsiepiggle3 Comments

After what felt like a winter without end, spring has finally arrived.

I typically expect November and early December to be the busiest time of the year. For the most part, I don’t think of the holidays as something to survive, but when they are over, January seems indulgently quiet. A lady farmer, who lives across the street from the Waldorf school, once told me that January is the one month she relaxes. With the crops harvested and slaughtering season completed, it is too early to sugar the maples or prepare next season’s crops. Sure, there are animals and machinery that need tending, but mostly life is as quiet as snow falling on a windless day.

Then spring hits and there is no rest for the weary, be they farmers or mothers and I don’t know why, but it surprises me every year. Last spring, we had an unusually warm March, and found ourselves in our gardens seemingly moments after ski season had ended at the local slopes. It was our first spring in the new house and we abruptly discovered that the yard and gardens had been cursorily tended for a couple of years. Translation: an abundance of weeds of all varieties—milky, woody, low to the ground and high to the sky—appeared as if by magic after the first warm days that March. Pregnant with Lyra, I was not much help in the garden. I trimmed dead branches off of the hydrangeas but otherwise mostly pointed out the weeds to Max because bending over made my heartburn rise. At the end of our driveway, Earth N Wood landscaping company dropped mountains of mulch large enough to be seen on Google maps. Seriously. For the rest of the spring and summer, Max pulled weeds, moved plants, mulched beds and ripped up English ivy, which grows with the destructive rapidity of the title character of The Blob, the 1958 Sci-fi movie classic (extending the metaphor: Max=Steve McQueen).

Possessed by Possessions

The long summer turned into a warm autumn and I thought I’d never get Max back into the house. But as I mentioned in What We Keep, finally in December, we resumed tackling the ongoing project of merging the possessions of two households into one. For this reason, I was not entirely unhappy to see winter linger with hopes of extending our focus on building shelves, emptying boxes and taking things to Goodwill and Habitat for Humanity’s ReStore. Larger items, or things we haven’t decided whether to keep or part with, have been hauled to the back garage for re-evaluation in the summer when we work on de-cluttering the garage. I imagine some day our spare time will not be primarily pre-occupied with managing our possessions as it has been for the past two years. But I cannot predict when that day will arrive. And I ask myself if a deadline is in order.

Before the weather turned warmer, however, our weekends no longer found us like ants busily working in a nest while the frigid winds blew outside. Since Claude came home for his spring break in March, all of us have been pulled back to life outside of our home. Annual spring benefits for our favorite non-profits started popping up like dandelions in the lawn and last week alone, three were on our calendar (we made it to just one). Track season began at the Waldorf school and, as all parents who’ve been there know, any sport that employs the word “meet” as opposed to “game” is a sport that will relieve you of an entire day every weekend of the season. Tax season took away at least two of our weekends. And through it all, Lyra has at least one appointment a week with her doctors or therapists or county caseworkers or the Down syndrome clinic. In order to manage our schedules, emails go unanswered, calls unreturned and spontaneous get-togethers can’t happen. I start each day by looking at the Google calendar. And when I forget to, as I did this past Monday, I unexpectedly found the Summit County DD case worker and physical therapist on my doorstep at nine in the morning. Thank heavens I was dressed.

Far from Perfect

For me at least, it’s been hard to find my balance these past two months. I think of a quote I recently saw: Make sure to meditate at least fifteen minutes a day unless you are busy. In which case, meditate an hour a day. I smiled when I read this knowing, however ironic, that it is true. During these hectic days, meditation is like a staff planted firmly in the earth, a pole that does not stop the chaos, but rather allows me to stand still and observe the chaos without getting swept away by it. I am reminded of the wizard Gandalf who powerfully pounds his staff on the ground with one swift movement as he forcefully tells the demonic balrog, “You shall not pass!” Gandalf does not appear to kill the balrog, but he does prevent it from consuming his friends, insuring that they continue on their journey.

In one of my earliest posts, I described the mom-blogs that intimidate me with stories and pictures of serene adults with sweet children in clean (handmade) clothes making butter with the milk from the goats they keep in their yards while their kitchens look as organized as Martha Stewart’s but more artsy, an aesthetic cross of Waldorf schools-Garnet Hill catalogs-Merchant Ivory films.

Those moms probably don’t forget to go to the monthly meetings of their Down syndrome support group. Certainly not two months in a row. Nor do they forget to patch their daughter’s lazy eye (I won’t say how many times) and I imagine they do an hour of physical therapy three times a day so that their child with Ds meets all the “typical” baby benchmarks, like sitting up at six months. Those moms don’t ask with panicky voices at 5:30 p.m., “What are we going to feed everyone for dinner?” because they have organic and delicious meal plans extending weeks in advance. And while their kids may occasionally pull outfits out of a basket of clean laundry waiting to be folded, I doubt they ever dig into the dirty laundry to seek the least muddy pair of pants to wear to school that day.

True Confession: I sometimes think about what my life would be like if I only had one child. Or two. Or three. Or four. I consider what I would be doing with my days if my only child were away at college. Or if I had just one at home and the other at school, and down the list I go. I don’t think of it often, nor do I dwell on it when I do. This in no way means I ever wish to be without any of my children in this life and pray that they all die after I do, because to lose any of them is something I do not ever want to imagine, let alone experience. No, when I think of life with fewer children it is in the way Robert Frost describes life in “The Road Not Taken.” Frost acknowledges that our choices form our lives and wonders how different choices would have forged a different life. Possibly, I wonder, even molding the person so differently as to make him or her someone else entirely. In the film Sliding Doors, Gwyneth Paltrow’s character has two different lives based upon whether she misses or catches her train to work one morning. What I do know is that last year, before I had Lyra and I was working at the Waldorf school, I was not writing with any regularity. For a number of reasons, she keeps me at home and I make it a priority to write every week as much as I can.

As Good As It Gets

Last night we sat on our veranda and looked down at Jules and his friend Liam. They had set up a tent on the lawn and were standing next to it looking at the stars with one of our telescopes. Still in his Old Carolina Barbeque uniform, Hugo was relaxing as Hugo often does—by playing the guitar. The babies were asleep when Claude, who the day before had returned to Ann Arbor to take his last final, pulled up in the Matrix. I called out to him as he walked into the backyard, surrounded by the boys and dogs, and told him to grab a beer and join us on the veranda. After he’d joined us, I asked Claude how he feels now that he’s completed first year of college. “I feel a lot less anxious about things and, you know what? I am really glad I’m at Michigan, it’s a great school.”

Our lives at Whoopsie Piggle, the name of our home as much as this blog, continues to shape us just as we shape it. Our budding naturalist, Jules, has been eager to transform our yard and gardens to attract a variety of birds using native plant species. Max is his willing cohort in this venture and last fall they found a beautiful serviceberry bush on sale at a local nursery and Jules contributed $30 of his own money towards its purchase. It is now blooming and we are all eager to replace more non-native species with serviceberry bushes, spicebushes and red buds. But it is primarily Jules and Max who plot out and execute their now mutual dream of having a sustainable garden filled with native species, mirroring their own relationship in which stepson and stepfather are no longer foreign to one another but belong to each other as families can.

I enjoy being able to help in the garden this year with Lyra often nearby on a blanket. Leif, who turned three in February, already loves the yard where his dad built him a big sandbox last year. We had been trying to decide where to put a swing set that a friend has offered to us for the price of taking it out of her yard when then Hurricane Sandy took out two trees in the backyard. Using his new chain saw, Max is clearing the way to make our park-like yard even more kid friendly. With Claude home and helping, it won’t be long before we have our own playground.

Abiding Chaos

With Claude home, the large house is more full, but not entirely. We keep one bedroom as our guest bedroom. The plan is that one day it will be Lyra’s bedroom. With lavender walls and white trim it is a cozy room that is filled with afternoon sunshine and has its own bathroom where mid-century black and mauve glass tiles line the lower half of the walls. One friend in particular regularly comes over for dinner and stays late knowing she can sleep over in the guest suite. Early on, she stayed with us for a few months when she was between apartments.

Today we are awaiting the return of our friend, Nancy Wolf. Several years ago, Nancy left Akron to move to California where she followed some of her dreams. Now she is returning because her grandchildren are here, one of whom was born last December. While she resettles in our little city, Nancy and her two Labrador Retrievers will be staying with us. Will it make things a little more chaotic? Perhaps. But Nancy has stayed with us many times over the years when she’s journeyed back to Ohio. My kids love her. Just as important, I think, is to shake up the status quo and expose my children to other adults with whom they have different conversations than they do with us and also different from the conversations they have with adults who don’t live with us. There are as many ways to live life as there are people living it. Many of my choices in life may not be those my children are interested in for themselves. I’d be surprised if they were.

Nancy reads Whoopsie Piggle and often makes comments. After she read “What We Keep” she quickly sent me an email politely asking if we could hold off on shedding any more furniture until she returned. Truly able to let go of possessions, Nancy got rid of almost everything she owned when she left California last month, just as she had when she moved out there seven years ago.

The past nine months have not been without struggle as we learn to manage a family of five children with an eighteen year spread. Now we are upping that ante for a time while our friend and her dogs stay with us. But when she leaves, she’ll clear out most of the furniture and extra housewares stored in our back garage.

If we’re lucky, that is.

It Could Be Worse

All of this reminds me of a joke. There was a woman who lived in a small house in a shtetl. The woman was happy with her life until her widowed mother-in-law moved in with her and her husband. The mother-in-law had endless notions on how the woman could keep the house cleaner, make the meals tastier, teach the children better, and so on. Frustrated, the woman went to her rabbi and told him how her mother-in-law was making her life miserable. “Go home and move the cow into the house,” he told her and she did.

A week later, the woman went back to the rabbi, more frustrated than ever. Her mother-in-law was still unabashed in her running commentaries and now the cow was making it impossible to get around the small house. “Go home and bring your chickens into the house,” he told her and she did.

A week later, she again returned to the rabbi, at her wits end. “Go home and bring the goose into the house,” he told her and she did.

Days later, she came tearfully to the rabbi, telling him she couldn’t take it any longer, life at her home made her despair and she didn’t know if she could face another day. “Go home and move all the animals out of your house,” he told her and she did.

When the rabbi stopped by the woman’s house the following week, he asked her how she was doing. “I have never been happier,” she told the rabbi, “ever since you had me move the animals out of the house, my life has been so easy!” The woman made no mention of her mother-in-law who was sitting in the corner audibly complaining about anything she could.