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It's an interesting thing, the cultural bias with which you greet the news that some disaster has befallen your newborn child. Some families are athletically inclined, sports enthusiasts, avid competitors. For these families physical rivalry is a metaphor for life itself. When struck with a birth defect which results in a child with a physical impairment, the reaction is of catastrophic proportions. The same family might view the birth of a mentally retarded child as a tragic accident, certainly, but a mere inconvenience to their lifestyle.
It was just the opposite for me. My lifestyle is less than physically demanding, so I hold little regard for physical prowess. Sports never interested me in the least. My greatest expectation for my children was to be able to connect in a very special way, with intimate communication on an intellectual plane. And when Moira, our first, was born with Down Syndrome – mental retardation! – it was like the end of the world. Had I the choice, I would have gladly opted for a physical impairment over a mental one.
As it happened, we got both.
To demonstrate how quickly things can degenrate, the first assessment we received of how Moira was doing was her Apgar number just moments after her birth – a perfect ten! Life was good! She was a little yellow, but jaundice isn't life threatening these days.
The following day the pediatrician had solemn news after a thorough check: he suspected "some chromosome damage", however despite her jaundice, her heart and lungs seems to be just fine. Tests were to be performed to assess the nature of the chromosome damage; these took ten days for the return of results. The implication of "some chromosome damage" had yet to weigh in.
Moira continued to undergo treatment for her jaundice, complicating her feeding schedule tremendously. Nina was released from the hospital, but Moira had to remain for a period of two weeks, during which Nina was obligated to travel 20 miles to the hospital every four hours to try to feed her – a chore which was proving to be difficult because Moira was increasingly unable to suckle.
After two days a cardiologist was brought in when the pediatrician sensed something awry with Moira's heart. Indeed, it turned out that Moira was among the 12% or so of Downs kids who realize some kind of congenital heart defect. In her case it was first that a passageway between the chambers which is supposed to close at birth failed to close. Subsequently we found that her mitral valve was severely misshapen, being fashioned as a corkscrew instead of a flap. These problems were manifested in several ways:
Once it struck us exactly what was meant by "some chromosome damage" my reaction was to find out everything there was to know about Down Syndrome. Everything! So I canvassed the public libraries and, to my astonishment, found nothing. Nothing! I stumbled upon the number of Greater Omaha Association for Retarded Citizens (GOARC – now known as the Ollie Webb Center), however, and soon was plugged into the Pilot Parents Program, a support group for parents of children with various disabilities.
What a lifesaver. I'm sure that had I not blundered into this group Nina and I would have muddled our way through Moira's early years okay on our own and survived it – we're pretty strong folks. But what a blessing not to have had to manage on our own. The first thing we realized was that we were not the first (nor the last) parents to have faced the devastating news that the child born to us was not the perfect child of our imaginations. It seems like such a simple revelation on the surface, but it's profound for a parent facing such a diagnosis. There comes an overwhelming sense of isolation and guilt which wells up, clouding the most basic of rational thoughts. It took meeting another family who had run the same gauntlet for us to appreciate that our reactions were neither extreme nor irrational.
It took only a few months for us to square ourselves away, hike up our dungarees and settle in for the work of raising Moira. After a little over a year we became active participants in the Pilot Parent Programs of both Iowa and Nebraska ourselves, trying to return to the program some of the benefits we had realized. We have remained staunch advocates of parental involvement and support for years since.
It seems like it was forever, but it was only about four years during which we had encounter after encounter with medical emergencies both minor and major with Moira. Throughout that time my attitude was fairly cavalier, though Nina was a wreck. I viewed the heart problems as nothing more than bad plumbing, and I was confident that they knew how to fix that. I was more bereft by the hopelessness of ever engaging her in a scintillating discussion of the mathematics of Bach's fugues. Meanwhile, Nina was perfectly at home with diminished intellectual capacity but she died a little more with each new medical procedure required by her heart.
In her fourth year Moira had what should be the final surgery to deal with her congenital heart defect, during which her mitral valve was replaced with a prosthesis. It had an immediate impact on her general health. Suddenly she lost all trace of the bluish cast she would get under exertion. She began to gain weight and stature (though she still remains quite small for her age). But most significantly for us, she began to shake off colds and minor bugs like other kids. No longer did a little sniffle make the back of our necks bristle with the expectation of yet another imminent hospitalization.
The only long term effects of her heart surgeries are that she will be required to take a blood thinning agent for the rest of her days, and she has a pacemaker which will require replacement every 10 years or so. Apart from these, she is completely out of danger, leaving us time to address the other aspect of her condition, her retardation.
Iowa happens to be among the more progressive states, mandating educational services for children with disabilities from the date of diagnosis, not just the arbitrary age of 5 or so. Studies have demonstrated that this early intervention in the development of the child reaps many rewards compared to waiting until school age. Of course, at the time I thought it preposterous to place a weeks-old baby "in school". "What on earth do you teach a four month old baby?" I thought.
Well the answer is, nothing. And everything. It isn't the baby who is in school, it's the parents, who are being taught signs to look for and techniques to enhance the child's development through their normal interaction and play. For example, Moira is quite loose-jointed, as are many Downs kids. At the development stage where she began to go back and forth between sitting up and laying down she took the laziest route she could find which, for her, was dropping her torso forward onto the floor between her outstretched legs, then simply swinging her legs all the way around her hips until they were now stretched out behind her. It was the darnedest thing to watch! But though it got her where she wanted to be, it was at the expense of developing the muscle tone which would be necessary to support her later when she began to crawl and walk. So Nina and I were shown how to discourage this practice and get her to drop to her side, supporting herself with her arm, and roll over like most kids do on their own.
During the first year, in spite of several medical episodes, it was possible to maintain a running tabulation of how Moira's development fared against The Norm. With development of newborns being reckoned in weeks, it actually sounded promising when we were told that this aspect of her development is about 1.2 weeks behind The Norm; that one is about 2.6 weeks behind. It was something which I found I could easily grasp to get a real world gauge of just how retarded she was; heck, it didn't sound bad at all. As the weeks went by, she remained behind The Norm, but her progress generally kept apace, that is, she didn't drop much further behind as she went along.
By the age of 16 months Moira had finally gained enough weight (all of about 16 pounds) to undergo her first major heart surgery. She was in the ICU in four-point restraints for the better part of four weeks, and the toll it took on her development was staggering. This was my epiphany; it suddenly became so painful to maintain the comparison between Moira's development and The Norm that I stopped asking, stopped reading the progress reports generated by her teacher, stopped even considering whether she was doing well or not. I began to accept whatever progress was made, small or large, at its face value and outside of any other context.
I began to accept Moira, unconditionally, as the little girl she was, and not as someone who was just "this much" behind the little girl I wanted.
From that day on my relationship with Moira has been wonderful. She's a delight in every respect, with her own personality, her own quirks, habits, and foibles. Some of them drive me crazy, others have me rolling on the floor laughing. Not much different from the others in our household. Through her teenage years, she was very much like any other teenager I've known. She could be moody, she could be silly. At times she didn't want to have anything to do with her parents, telling us to "go away, please!". At other times she was all cuddles. She loved to sit in her room and listen to her CD collection for hours at a time, shutting out those annoying parents of hers. Sound familiar?
My greatest, and I think, my only regret is that communication is so difficult. Her receptive language skills are quite good (but then we've never "spoken down" to her or her sister), but her expressive language is extremely difficult to understand, sometimes taking me several minutes of cajoling and repeating to recognize a simple phrase.
Through the years we've had a number of significant events we've shared with, or as a result of Moira. For example, we've become quite knowledgable about grief and the grieving process, particularly as it applies to families of children with disabilities.
When a family member dies, there is a period during which one has a profound sense of loss and one mourns that loss. But eventually, with interment or cremation there is closure. The events surrounding the loss are sealed away and can be neatly "shelved". This is not the case for the family of a child with a severe disability. The events surrounding their loss are recurrent, even compounded, on a daily basis. Exactly the same type of grief is found, however – that profound sense of loss and mourning over the child that should have been – yet closure is impossible as long as the child remains alive.
This fact can cause otherwise well adjusted families to suddenly and inexplicably become subject to chaotic mood swings, and experience all of the anguish of unbridled grief at the slightest provocation.
I returned home from work one evening when Moira was about 5 to find Nina on the couch, sobbing. She had been there for hours, crying uncontrollably because she had received a packet from the neighborhood school inviting Moira in for "kindergarten roundup". That her oldest daughter would not and could not attend simply crushed Nina.
At the other end of the spectrum we've long championed "normalization" – the placement of individuals with disabilities in an unremarkable setting, allowing them to blend in with the rest of us as seamlessly as possible. To that end, Moira was enrolled in Campfire, which made her quite proud. It's something lots of girls do and there's no reason to single out Moira and say she ought not to be in Campfire. During the United Way Campaign of 1990, United Way of Omaha was seeking representative people to use as "poster persons" who have been recipients of their largess. Now, the Ollie Webb Center is funded largely by United Way, and it supplies many different kinds of services to mentally retarded Omahans, including Moira, so she might have been justifiably chosen as a beneficiary of United Way through that agency. But significantly, she became the 1990 United Way "poster person" for the Campfire organization, which had us all busting our buttons – especially Moira.
There have been many other landmarks along the way, both large and small. Like the time Nina stood her ground and politely told a photographer who didn't know any better that, thank you, she did not want the scar on her sternum from Moira's heart surgeries airbrushed out; it was a badge of honor for which we all paid dearly.
Like the time Moira had come home from school and, looking for a quick snack, decided to make herself some toast. She had been using the toaster by herself for quite some time, but this was the first time she found the butter dish empty. She managed to locate the new pound of butter in the fridge, but found it too hard to cut with a knife. When we happened into the kitchen some time later we found that she had discovered where the wire cheese slicer was kept and had ingeniously adapted it to her use. As Nina is fond of saying: "she's merely retarded, not stupid!"
Is there one? Most assuredly. Though while Moira was growing up we weren't equipped to think much about it. Her status was too volatile to make accurate predictions. And the support systems within the community for persons with disabilities of all types have been evolving at such a rapid pace it was difficult to forsee what adult life might be like for Moira. So we long ago learned to rely on the immediate, and not beat ourselves up for neglecting a long term plan.
But of course, the day eventually arrives when, poof!, your kid is suddenly an adult. The transition for us took place over about a 60 day period early in 2002 while Moira was finishing up her last year within the educational system. She had moved from a classroom setting at her local high school to an off-campus transition program housed in the community's vocational development center more than a year before. Two of her friends from the center were sharing an apartment, and needed a third to help share expenses. It was suggested that Moira would be a perfect match. Less than two months later, Moira had moved out into the world, and Nina and I were left with a host of mixed emotions and a considerably emptier house.
Rather than a "group home" setting, Iowa's arrangement makes it possible for persons with disabilities to have all the resources, including any necessary caretaking staff, normally found in a "group home", but without being restricted to one of a few (sometimes cloistered) locations. Residents are able to choose any living arrangements their resources allow, and many choose to pool their resources. This is exactly what these girls have done. They share a three bedroom apartment in the community, with a commanding view of the metropolitan skyline and all the amenities one could want. Moira's living expenses are covered entirely by federal Supplimental Security Income dollars, while support staff is made available through state funding. Any money she or the other girls may make working in the community will offset those funds.
We've spent Moira's entire lifetime in the same house. She couldn't know the meaning of the word "move". We weren't sure how she'd adapt to moving in with her friends, but we did know from experience that Moira doesn't like change! So we began by talking to her enthusiastically about being with her friends – all the time. We tried to get her to picture her independence. At times we encountered resistance, even hostility, such as when we attempted to get her to choose some furniture for her new room. So we weren't certain the message was getting through.
The day of the move arrived, though, and we got her settled into her new digs. We were relieved to discover that when it came time to take our leave, she was neither upset nor confused. In fact, she was downright blasé, merely dismissing us with a wave from her perch on the couch, where she was already engrossed in a movie on TV. Hmmmmmm... not quite the reaction we'd expected. Nonetheless, it was important that she seemed comfortable with our walking out without her.
All doubts about whether she really comprehended that our home was no longer her home were dispelled the following school day. Nina had called the bus company to alert them that they should pick up and drop off Moira at her new address. The morning driver got the word. The afternoon driver missed it. The driver pulled up at our house and was most upset to discover that Moira refused to get off the bus. I can picture the impasse – Moira can be doggedly determined when she knows she's right! Of course, she was unable to communicate that this wasn't her house any more, so the poor driver read her growing frustration as hostility. The frustration escalated on both sides to the point that the driver was about ready to involve the police. Fortunately, a call to the dispatch center cleared up the confusion, and Moira was returned safely to her new home.
Only later did we discover that the reason for such a smooth transition on Moira's part was that most of her friends at the vocational development center had, themselves, moved into their own living situations. Moira had been hearing from them for weeks about how great it was to be on one's own, so she was looking forward to the move with eager anticipation. Who knew?!
Moving out was great for her. As would be expected, it was another in a long series of emotional assaults for Nina and me, but this time in a good way. She's genuinely thrilled to be called, and always has a boatload of news to tell us about things she's done or places she's been. She enjoys the occasional visit to our house, but is delighted to be back home again once she returns to her apartment. It's pretty much how any of us feel; why should it be any different for Moira?
And just as before, there are still far too many unknowns and too many opportunities for radical change in the next few years, both in Moira's capabilities and in the winds of social reform, for me to speculate with any accuracy what happens next. We want to see her take her place in the community, and to that end we exert what influence we are able toward encouraging the vocational development center to expand its programs in the direction of community involvement, rather than walling off and isolating its participants. It's improving, but there's much yet to be done.