Wednesday, April 30, 2008


My first experience with discrimination on a personal level occurred when I noticed two little girls of elementary school age making faces at Walker, who was seated next to me in the front seat, from the rear seat of their station wagon. I was sorely tempted to stop their mom, who was happily oblivious to the ugliness, and let her know what the children were doing. But the traffic was bad and I really don’t like to make a fuss and Walker just seemed a bit annoyed, perhaps baffled, so I let it pass.

I grew up in the Deep South, Montgomery, Alabama, in the midst of the civil rights movement. The only exposure I ever had to people of another race or culture prior to my eighteenth birthday was through our housekeeper and yard man and one family who had adopted two Asian children.

This was the era of separate everything. We had “whites only” drinking fountains and lunch counters. The only time I ever sat in the back of the bus was on a once in a lifetime trip with our housekeeper to visit her family across town.

I wish I could say that our family was different, that we were on the cutting edge of the move toward equality, but I’m afraid that that is far from the truth. My daddy was The President of the Alabama Public Service Commission, and he was the one defending the right of the Great—actually not so great—State of Alabama to keep the rules about drinking fountains in the train and bus stations just the same as they had always been, marked “Colored” and “White”. Daddy even ran for governor, promising in a national magazine to preserve segregation by deputizing all white males over twenty one years of age.

I didn’t grow up knowing that this was the wrong side of the fence for me to live on. We didn’t read books in school that taught us differently. Even in college, there was little discussion about what it really meant to respect the rights of all when we discussed The Constitution. We always got bogged down in history class when we came to the Civil War.

When Walker came along, part of my fears…okay, a lot of my fears… involved what other people would say and think about my little "Downsie". Would my friends include him in their children’s birthday parties? Where would he ever find a friend? Would he even be accepted in the public school programs he belonged in? (At that time all kids with Down Syndrome were considered to be only “trainable” not “educable”.) I didn’t know that he would learn to read and write, but I certainly knew that I wanted him to be afforded the opportunity. We found out the answers to all these questions.

Walker was included in most, but not all, of the birthday parties of friend’s children near his age. He did find a number of friends in the neighborhood and at Madonna Day School. He had his own fabulous birthday parties. We decided to put him in a private school after his preschool achievements showed that he definitely had the capacity to learn to read and write. At age five, he was still right on target for his age. Today, he can read anything he chooses. He is like his mom, in that he is a visual learner. He taught himself to set his TV to show closed captions, and he reads most of them as he watches TV.

Today, he knows he is different. High School took him down a notch or two from being the “prince” of his former school. The cutest cheerleader turned him down in no uncertain terms, and even yelled at him after he phoned her a few times.

At the grocery where he works, though, he is a prince again. He makes more tips than anyone, and is the favorite of the cashiers. I think this is because he’s so precise as he bags, even if he isn’t the fastest sacker. Perhaps the checkers welcome Walker's slower pace. He knows all the rules about heaviest things belonging on the bottom, and to always pack the bags light if the customer is frail. He prefers to pack in plastic, rather than paper, because it’s easier. The bags he packs never fall over in the car either.

I've been reading a lot of books about other cultures in the past few years. I think my interest was stoked by 9/11, and there seem to be a lot of books with cultural and religious differences as a theme lately. I had no idea that the other monotheistic religions were so closely related to my own Christianity. I had no idea of the awful things that we've done to each other in the name of religion, even my own religion, practically from the dawn of the universe, until I was a full blown adult.

In Social Work School we talked about Oppression. Dr. Marsha Egan made me look at my own prejudices and realize that I can't just practice non-discrimination myself. I have to work toward making it the norm.

May we all learn to respect those who seem to be different and to recognize that those folks have a lot of the same hopes and desires that we do. We are all much more alike than different. I hope I've learned to embrace differences, not to fear them, because of Walker. that's one on the main reasons I would never choose for him to have been born different from the wonderful person he is.


Monday, April 28, 2008

How Do I Look?

As I sit here typing, a short, middle aged, somewhat overweight, not very stylish girl presently in sweats, I'm thinking about getting some clothes together for an upcoming weekend trip with friends. I'll sort through and find some kind of cuter things that are more or less like the things my friends will be wearing. I am definitely wardrobe challenged, and Walker sometimes has a better sense of what's appropriate than I do.

When Walker was about twelve or so he announced that he didn’t want to have Down Syndrome anymore. Now it’s possible that the deaths of two of his classmates who both were beautiful girls with Down Syndrome made him associate having Down Syndrome and dying, but it seemed to be more than that.

Not too much later, he commented that he didn’t like one of the children in his carpool because she had “Chinese Eyes”. I have no idea where he came up with that, because we had never really discussed the appearance of people with Down Syndrome. While I attempted to change his mind about how lovely Louisa was, I knew that he was echoing the sentiments that society at large feels about people who look different.

From a very early age, it seems that babies can discriminate faces. They seldom go through “stranger anxiety” with someone they have been exposed to frequently, and wriggle and squeal with delight when they see the grandparents after a few days or weeks absence. I’ve been told that children don’t learn to “see” race until about the age of five or six, and it has been my experience that that is about the same time children begin to notice that Walker looks somewhat different. Perhaps that’s about what his mental age was when he began to notice. I don’t know.

I never thought too much about Walker’s taste in friends until Steffen came into our lives. Steffen is mentally ill, not mentally retarded, and he went through a period of looking pretty unkempt. His long curly hair had become matted and he hadn’t had a haircut in months. One Saturday night when Steffen was staying over, I asked Walker whether they wanted to go to church the next day, and he retorted, “Not with that hair!”

This led to a discussion with Steffen about the hair issue. I finally asked outright whether it was a function of low funds or embarrassment over allowing a hair dresser to see the mess he was in that was the problem. He finally admitted that it was both. I asked him if it would be okay if I cut his hair, and he agreed. I began cutting, and it was going well, until we got to the front. It was important to Steffen to be able to look in the mirror and see himself with long hair. Later that day, I took Steffen to a nearby cut and blow place. I gave him $20 and told him he could keep the change if he would allow the stylist to cut the sides to match the rest of his haircut. When I got back to pick him up, he still had the long curls hanging down, and gave me back the change.

Eventually Steffen’s hair grew out, and he got it trimmed up to a moderate length, and appears much more neatly groomed. Do all of us have to nudge our people we care for to conform to societal norms in order to fit in? Maybe. Even my four year old grandson is very conscious of dressing like his classmates, and especially his older brother. His preferences are stated very clearly, and he and his mom have frequent clothing hassles.

I notice that when he comes for visits with us, Steffen dresses much more like Walker than when he’s going somewhere else, and Walker carefully chooses some of his “cooler” shirts when they’re going out. They are learning from each other, and don’t stand out in the crowd quite so much anymore. They are just two guys out for a movie and some shopping

We can all hope that people will like us for who we are, not how we look, but until that happens, I guess we have to try a bit harder.

Blessings, Janie

Sunday, April 27, 2008

How Old Are You

It's such a normal thing to ask someone's age, especially when they're obviously young enough to be proud to announce it to anyone who asks. Most children can tell you how old they are by their second birthday. Children with Down Syndrome tend to look a good bit younger than their age until they reach their thirties or forties. Most, though not absolutely all, are a bit short, and when they're little, their gross motor skills are generally delayed along with cognitive and language and social skills. Walker and his younger sister are twenty months apart, and until he was about seven and she about five, they looked like twins. I even dressed them in matching outfits when they were little.

The most useful things I learned in Early Intervention Classes was how to determine a child's developmental age based on some pretty basic criteria. The reason for this is that a little nudging toward the next task sometimes helps babies with Down Syndrome to advance a bit faster. Walker was lucky enough to have two older sisters and one younger, so we had a living child development laboratory. The toys for the next level were already in the playroom, he just decided when he was interested in them. He had a constant playmate who even shared his room. He learned to climb out of his crib to get into hers quickly after she moved in. The big girls taught him to walk by standing him up against a wall and tempting him with Cheerios and other treats. Everyone wanted to be the one that taught him their name first.

As Walker grew older, because he was small, he was often mistaken for a younger child. I sometimes wonder whether I dressed him like a younger child on purpose, so that his appearance was more congruent with his development. He was still wearing the little suits with shorts that buttoned at the waist when he was five years old and began Madonna Day School. Sister Mary Mark did not wait long before letting me know that he needed to have a uniform like the other children. Finding long navy pants and white shirts in a 2T was no easy feat, but I finally gave into the big boy look.

Just recently, my grandaughter asked me how old Walker is, and when I told her thirty-two (I got it right that time!) she began to ask me why he still lives at home and why he doesn't drive a car. It was a golden opportunity to explain Walker to her.

For management purposes, I still like to know how old Walker is. Not in years, but in his interests and needs. I don't run developmental screenings on him anymore. There are some pretty easy ways to get an idea of where he is.

Saturday, April 26, 2008

What Wonderous Things

I'm still in a gardening mode. My favorite things are the ones that kind of take care of themselves once they're planted, with an occasional division to multiply the wealth. The period of bloom is usually much shorter for perennials, but the show is so magnificent , and there's the promise that it will come again next year, so it's hard to grieve the loss when they die back.

I'll be keeping grandchildren for the next few days. I'll show them the nice fat toad that I uncovered in the lower bed and probably have to provide a cup for a caterpillar overnight. Perhaps the robin's nest outside my bedroom window will provide a surprise hatching while they're here. I'll let them have unlimited chocolate milk and make pancakes for breakfast. We'll read storybooks, some of their mothers' favorites mostly. But then they'll go home, and I'll sweep the floor and put the caterpillar back in the yard, probably to dine on the bedding plants I've labored over, and then it will be very quiet.

Sometimes I think Walker came into my life because God knew that I wouldn't want to be really, truly alone for any length of time. I never really batted an eye when the girls married, even though one moved very far away. Seeing them move on meant that I had done my job well. And I'll have to admit, I enjoy having the house quiet so I can read or write or just watch the politicos on TV.

Walker and his dad and I are three mostly grown-ups sharing space. We each have our routine things to do to keep our little nest in order, and of the three of us, Walker is the most reliable in this department.

Wednesday sundown never arrives without Walker making sure the trash is collected, separated, and taken to the street. The dishwasher barely stops before he unloads it. He is so accustomed to putting the groceries away that I sometimes have to ask him where things go. He does his laundry every Thursday night after work, moving anything I might have had in the washer to a small dishpan, meaning that I often have to re-wash them. (We need to work on that one.) He makes his bed as soon as he gets up, and always remembers to clear his dishes and put them in the dishwasher.

That last one is sometimes a source of conflict between big Walker and me. I accuse him of leaving things for the dish fairy, and sometimes get a bit testy...okay bitchy...about it. Walker III does not like these conflicts. A few days ago, he came and put his hand on my shoulder and told me not to worry about it, that he would take care of getting dad to shape up. After the next meal, I noticed that he sat back down, watching his dad. When I questioned him, he told me he was making sure that Dad didn't leave his dishes in the sink for me.

Seeing Walker go about his business is satisfying in the same way my perennial garden is. He is well situated, but requires minimal care. May we always be this happy.



Friday, April 25, 2008

Plant Yourself Where You'll Bloom

Today is a much brighter day, and perfect for tackling some gardening chores. You will note that I said in my bio that I enjoyed the fruits of my garden, but I'm afraid I don't really enjoy the process of getting there. I'm good enough about buying the plants, not so much about getting them in the ground. And weeding...let's don't go there! There's always a lot to do in the Spring, and again at the end of Summer, but in between, it's mostly pure pleasure.

I've learned a lot from my gardening efforts, mostly that it's very difficult to force something to grow unless you accomodate its needs. Oh, sometimes something will surprise you and hang in there, maybe fairly successfully. To really thrive as a gardener, though, you have to pay attention to the way your plants came into the world, make sure you respect their needs, and notice when it's time for doing something different.

My biggest gardening epiphany came when we lived in Collierville. At our old house in town, we had mostly shade, and as long as I picked shade loving plants that liked acid soil, my yard generally did pretty well. Moving into a newly constructed house presented challenges, both in terms of energy and money. We couldn't really afford to pay someone to come in and give us an instant landscape, so I bought what I liked and put it in the ground. One area was particularly troublesome. Things that I had had success with in the past simply would not grow in that bed. My Torenia and Astilbe fried in the heat or rotted from too much water. Then one day I was dealing with some weeds in the limestone gravel in the driveway and noticed shoots of Torenia coming up. I moved them to the bed, but they quickly died off. They kept coming back in the drive though, and I eventually just learned to enjoy them there among the rocks and poor alkaline soil that they appeared to love.

I soon realized that I wasn't thriving in Collierville either. We lived there over seven years and I never made a friend. I'm sure this was partly a function of living on acreage that provided a buffer between neighbors, but it was so strange to me. We tried a church out there. We didn't really have any attachment to it, so began coming back to town for church, not very regularly, mostly when Walker was serving as an acolyte. I went back to graduate school, and made a lot of fun friends there, but it took a lot of commitment for anyone to visit us, a forty minute drive from all the things we knew and loved. My own children didn't just drop in, they had to plan ahead. I found myself handing my grandson off in the parking lot of Toys R Us halfway between on nights we were babysitting.

The two Walkers were happy in Collierville, though. Walker III was going to a large high school, making a few friends, and riding his bike to the store. He even had a girlfriend, Brandy, an adorable classmate with Down Syndrome. Big Walker was running his bird dogs in the field behind our house, and was only a short drive from places where he loved to hunt.

Finally, I realized that something was going to have to change. I simply couldn't bloom where I was planted, I had to plant myself where I would bloom. My guys transplanted well. We found a lot that accomodated the dog kennels and a small garden for our tomatoes and butter peas, and Big Walker eventually bought some hunting land. It's not as convenient as Collierville was for his interests, but he seems to manage. Walker III readily adjusted to the move. We sometimes met Brandy and her parents for a movie or Walker took her to an alumni dance at Madonna Learning Center. They even had one "real" date where they ate in a restaurant without parents. Eventually Brandy moved away and Walker got a job. He has never since had a real girlfriend, but announced recently that he is married to his job--a quote from a movie, I think.

Life is easier here in the city, and we are probably all more productive now that we don't waste so much time and fuel going back and forth. I have found real satisfaction in practicing my profession first at a local hospital close to our new home, later at our church.

My two older girls also had a "transplant" experience when they were in fifth and ninth grades. They had attended a very good school, but one that didn't offer many opportunities in the areas where they excelled. They vocalized their complaints and expressed their desire for a change, unlike Walker who generally seem to adjust to wherever he is placed, and rarely voices dissatisfaction. Although now that I think about it, he did express a desire to change jobs several years ago. Turns out he had had an unpleasant experience with his boss--who eventually got fired and Walker was happy again. Maybe his lack of complaining now is just because he's generally satisfied.

We sent Walker to a vocational training center about two hours from Memphis right after he graduated from high school. Since we had chosen to exercise our right to a free, public education for him until age twenty one, and I was busy with school, this seemed to be an appropriate next move--like going to college. He came home most weekends on the Trailways bus from Nashville. He had a calling card, but he didn't call often, and when we called him, he gave us very little information about his happiness. Eventually, his advisor called a meeting and we all decided that Walker wasn't benefitting from the program, which was actually not designed to accomodate those with the degree of cognitive deficit that most individuals with Down Syndrome, including Walker, exhibit. I was probably the one most distraught over this decision, but it turned out to be the right one.

I'm glad Walker experienced "going away" to school, because he really learned some really useful things there, even if he never became the fastest sorter of various sized nuts and bolts. He learned to more or less manage his money, to plan ahead and sign up if he wanted to go to Walmart, and to do his laundry himself. (The laundry thing was a hard lesson, because he didn't want to spend his money on feeding the machines, so he just quit changing clothes for a while. Molly discovered this on a visit and pointed it out to me and the staff.)

Soon, Walker began his current job in a local grocery store. He happily bags groceries, greeting friends and counting his tips when he gets in the car after work. He looks forward to his paydays, spending his money on DVDs and Polaroid film. He stays trim and fit by working hard. He is definitely thriving.

Deciding to make a change is hard. Yanking a living plant out of the ground and moving it sometimes seem heartless and doesn't always guarantee that it will get better. You might end up losing it anyway. But I think that's preferable to allowing it to languish unhappily taking up space where a more appropriate plant would thrive.

I hope that Walker will learn to tell us when he's ready for a new situation. I hope that I will always be open to new ideas, and be aware of the need for change in order to grow--for myself as well as my son.

Blessings, Janie

Thursday, April 24, 2008

Thinking Ahead...Way Ahead, I Hope

Warning: It's a rather dreary day outside and my back is aching, making me feel much older than my years, so the following diverges from my mostly cheery views of living in a family with a person with Special Needs.

I was reading a review of a book recommended by my good friends at Amazon, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Paperback) by Kathryn Lynard Soper, and one of the comments in that review by a sibling took my thoughts in a direction that I don't choose to explore very often.

What will happen to Walker once his dad and I are both gone? Oh, we've done all the planning necessary to assure to the best of our ability that he will be well cared for. (More on that another time.) He has two sisters who live in Memphis with their families, and one in California. They are all loving, responsible, successful adults, so he won't exactly be thrown out into the world alone. A couple of health scares last year necessitated a few discussions on this topic, but no one, especially Walker, wants to talk, or even think about the day when he won't be living here with his dad and me.

Walker has a deep understanding of the grieving that follows the loss of a loved one, and he knows it is difficult. He was only about twelve when the first of his friends died of lukemia. Before he was thirty, there had been three more. He has lost grandparents, but they lived out of town, so it didn't seem that unusual that he didn't see them often. He has a simple faith that he will be rejoined with all those who have gone before him when he gets to heaven, and he has never thought deeply about "sin", so he really doesn't have any idea that some people think that everyone doesn't go to heaven. His certainty of heaven is so concrete that he was positive that he saw my daddy peeking out at him from a cloud.

But Walker's loneliness will be difficult. Losing a parent is difficult, adjusting to a totally new life could be unbearable.

I wonder whether anyone will notice if he slips away and weeps. Will someone check to see if he is sleeping peacefully or gaining or losing weight? Who will check to see if his athlete's foot has returned or notice the slight symptoms that something else is wrong physically? Walker doesn't like to be bothered with going to the doctor or dentist, so someone is going to have to be aware of scheduling things and deciding whether an unscheduled appointment is needed. Who will decide when he needs new shoes or underwear?

All his sisters have assured me that they will certainly take care of him, but everyone is so busy with their own families that I hate to think of them having even more responsibilites.

I never, ever thought that Walker would all be living with us as an adult. I can remember stating with absolute certainty in the required group therapy sessions of Infant Stimulation Class that I fully expected Walker to live on his own or in an appropriate facility as an adult. In all my wisdom, I was certain that no household was big enough to house three adults. Well, circumstances change, things work out, and here we are all living together, happily for the most part.

Sometimes I wonder whether it would be better to get Walker settled into a nearby residential facility before it is suddenly necessary. There's a fabulous one, The Baddour Center in Senatobia, Mississippi. But then I think of how successful he is at his job, and how it seems a shame to confine him to a facility, no matter how idyllic, when he's happy and productive in the larger community. I've thought about a group home, but he craves his time alone, and I'm afraid that living with others would be extremely stressful. Then there's always the issue of physical or sexual abuse in those situations.

Walker really doesn't require a lot of caregiving. He fixes his own breakfast, buys his lunch at work, and our main contact with him is driving him to and from work and at dinner for a short time every night. He might watch a bit of a sit com or reality show with us, but enjoys most being in his room, free to sort his Polaroid pictures or watch one of his vast collection of movies or watch Hannah Montana. He comes down just before bedtime everynight to take the one medication he needs, an antihistamine. We're usually in bed by then. I gave up monitoring his bedtime soon after he started his job. As long as he is up and ready for work on time, he can stay up or go to bed as he prefers, just as most adults do. His work schedule, 11:00 am to 6:00 p.m., accomodates his night owl preferences.

Right now, the plan in place is for Walker to move into a smaller home of his own with trusted caregivers after we're gone. That could change at the discretion of his sisters, or based on his own preferences. Our experiences with the services offered by the state have varied widely, so the family will probably have to take an active part in monitoring his care.

I hope Walker will always have people in his life who love him and are aware of his emotional and physical needs. I trust that he will.

Please share your thoughts on all this complicated process by clicking "comments" below.

Blessings, Janie

Wednesday, April 23, 2008


I meant to add this picture to my last post, but still being inept with the mechanics of this whole blog thing, it seems easier just to add it separately. It was made last year on Walker's birthday. The whole family and Steffen went to our cabin on Moon Lake for the weekend.

One of Walker's favorite pastimes up until that date was stopping by the casinos on his way home. I usually gave each of the guys a few dollars and let them play around until time for dinner. When we met up again, Walker was in a really foul mood. He has been to the casinos a few times since his 21st birthday, but he had always ended up in the black. So much so, that anytime he runs short of money, he asks when we're going back. Not this time, though. Apparently Steffen had advised him to stop as soon as he hit any kind of a jackpot, something he usually did. That night, he never got to that point. Like many of us, he kept feeding the machines until he ran out of money. He says he's never going back, which is fine with us. Some lessons are harder to learn than others. This was a tough one, and it was on his birthday to boot!
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One is Silver and the Other Gold

In the excitement of starting this blog, I sent a link to everyone I know, hoping that they would help in getting the word out to anyone they know who might find it interesting or helpful. This process led to some affirming e-mails and even a long-distance phone the morning! (For those of you who grew up before the days of unlimited free calling, this was a big event.)

Florence called, because in my haste to get the information out, I had made a typo in the web address, and she couldn't open it. She's the kind of friend that would go to the trouble to call me and find out how to access what's going on in my life. As I walked her through the process and we opened the page together, with the correct address this time.

I realized that friendship is something that I treasure above most anything except family, and that this is one area where Walker doesn't follow the expected patterns. Or does he?

Walker has one "best" friend. His name is Steffen and he and Walker rode the school bus together for several years. They were always the last kids dropped off every afternoon, and Steffen was attentive and kind to Walker. The first time I met him, he and his mom came by our house with a Christmas gift for Walker, the first one he had ever gotten from anyone other than the "Secret Santa" things at school or family and godparents remembering his birthday and Christmas.

When Steffen turned sixteen, he got a driver's license, and began to stop at our house for a visit sometimes. Eventually, I hired him on occasion to drive Walker to something I couldn't handle for one reason or another. Then one day, I realized that we hadn't seen or heard from Steffen for quite some time.

By this time, Walker had graduated from high school, and Steffen had kind of outgrown him. So I assumed it would be just like it had always been with the kids in our neighborhoods, when they outgrew Walker, we just kind of never saw them again. I realized the sadness of this when I put Walker in a high school Sunday School class, mainly because there was no real place he belonged. The adult classes were entirely too cerebral for him. The kids he had know all his life at church and in the neighborhood were nice enough, but eventually they graduated and he was left alone to make new friends with the next batch of ninth graders.

Eventually, I ran into Steffen's mom in the parking lot at the grocery store. When I asked about him, she seemed uncomfortable, but finally told me that Steffen had been admitted to a mental health facility. I didn't know at the time that a seemingly normal, bright youngster could become mentally ill and be diagnosed in his teens.

Months after that episode, we returned from a vacation to find a large number of messages from "an inmate at the county jail", which had we answered, we would have been charged a substantial fee. After puzzling over this for a day or so, it finally dawned on me that it could be Steffen. I called his mom, who eventually explained the circumstances, and was so angry with him that she wouldn't make his bail "if it was only two dollars, not two thousand". I was stunned, to say the very least. The Shelby County Jail is a terrible place. I had feared for my safety the one time I had entered the building adjoining it to contest a parking ticket. This was no place for a skinny adolescent from a nice neighborhood.

I eventually screwed up my courage, and made Steffen a visit. He had been charged with some sort of assualt against his mom, and to my knowledge, it entailed simply slamming the door in her face. I don't have any idea how bad things must have gotten for his mom to handle this by calling the police, but that's what she did. At the time, the mental health facilities that would have normally admitted Steffen and given his mom some respite from their conflictual relationship were overcrowded, and weren't accepting new admissions. He had been stuck at the jail for several weeks just awaiting a hearing. Somehow, I made the connections that were necessary to testify at that hearing, and Steffen was sent to a mental health facility for a thirty day evaluation. In the meantime, I worked on finding a suitable place for him to live upon realease, either from the facility or from jail.

When he called to let me know that he was about to be moved back to jail awaiting a second hearing, it was a holiday weekend. The thought of Steffen being placed in the jail again, even for a few days, was unbearable. So, I had my first, and only experience with a bail bondsman. Steffen was released to a facility that helped him manage his medications and learn some independent living skills. Through it all, Walker remaind his friend and champion.

Steffen eventually moved to an apartment, and manages well independently. He uses a computer to research movies and other entertainment opportunities for Walker and him to attend. We only see him only a couple of times a month, but given the choice of who to go out with, Walker always chooses Steffen.

This leads me back to the whole driving thing. Neither Walker nor Steffen drive. They can't do the things that young adults do, because they are dependent on their parents to pick up and deliver them, just like kids in junior high. Steffen has made a few friends in some of his mental health groups, and I think he has somewhat of a social life and includes Walker a bit occasionally, but mostly Walker has to make sure we're willing to provide the transportation.

I hope that someday Walker will someday have the freedom to pursue friendships freely, invite a friend out for a movie or dinner, and not have to seek our permission. Now that would be a blessing.

Friendship to all, Janie

Tuesday, April 22, 2008

Let's Try Something New

As I drove Walker to work this morning, I noticed him watching the traffic in a manner very much like my own, looking for an opening on the first of two busy streets. Up until recently, I actually thought the idea of him learning to drive was way out of the question.

He used to ride his bike to work, which is only about a mile from our house, but there are those two busy streets to cross, and worst of all, a railroad track. One of his fellow employees was killed crossing that track a little over a year ago, and his boss expressed grave concern about Walker riding to work. Since Walker is kind of a "fair weather" biker, meaning that if it was too hot or too cold or too windy or too anything, he would turn around and come back home for a ride, he didn't offer much resistance when we offered to drive him regularly.

This whole experience brought to mind something that happened when Walker was about nineteen.

Soon after Walker began high school he made his first real friend. Prentiss was a fine young man who was also in resource classes. He had grown up in South America, and had known a child with Down Syndrome in his neighborhood. Prentiss seemed to need a friend as much as Walker did at first. His learning disabilities and awkward gait made it hard for him to fit in too. He loved to come to our house because there was usually a trip to get pizza sometimes Walker had videos that Prentiss’s mother might have found a bit too racy. In nice weather, Big Walker would take the boys fishing in a nearby pond.

I didn’t worry much about Walker when he was with Prentiss because Prentiss seemed so much more mature and responsible. Prentiss and Walker discovered that Rich’s store where they went to buy bait was only a short bike ride from our house, and they often rode there for cokes and candy. This was one of the perks of living in a rural area where everything seemed safe.

Since Walker’s teacher had encouraged him to use real money in order to improve his math skills, I welcomed the opportunity for him to use the supply of coins he kept in the little metal box by his bed. The source of this money was questionable. Sometimes it came from his grandparents or from small jobs he did for his Dad, but I also discovered that he pocketed any change left over from his lunch money, hoarding quarters so that he would always have money for the drink machines at school or at the little store.

One Saturday, about noon, I was puttering around in the kitchen when the phone rang. It was Walker. This was before we all carried cell phones, or had caller ID, but we did have a second line that he sometimes used to communicate with us rather than coming downstairs. He stammered around a bit, sounding unusually flustered. I finally determined that he wasn't at home at all. He was in Mississippi. I asked him, rather sternly, to put an adult on the phone.

This time Walker had slipped out of his room and down the back stairs and out the garage, and headed to Rich’s store without permission. This excursion had turned into a much longer odyssey when he found the little store closed. Determined to buy a soft drink, he had ridden on and on in hopes of finding another store. When he arrived at a busy intersection, he watched the cars and trucks whiz by him and decided that it was much too dangerous for him to cross and reversed his course. Unfortunately, he failed to notice a slight fork in the road, and took the fork that led him several miles into Mississippi.

When I drove up to the neat trailer home and knocked on the door., a pleasant woman assured me that it had been no trouble, and I loaded Walker and his bike into the back of the station wagon. As we drove toward home, I lectured all the way. Walker’s privileges were suspended for a week and when he was allowed to ride his bike again it was with the understanding that he would ask permission before going off. He has stuck to his promise, at least about his bicycle.

Is Walker ready for driving a car? He certainly didn't jump at my offer to sign him up for Driver's Education, even after I assured him that they wouldn't actually let him drive on a busy street until he had driven many miles with an instructor. I've given him something to think about, though.

The bigger question is whether I'm ready for him to drive a car. I finally believe that he's ready to begin what may be a several year process. His temper is firmly under control, and his sense of direction is usually better than mine. He is certainly capable of passing the written exam, but this is a busy, dangerous city.

Now that I've thrown the idea out, I know that the time will come when he signals me in some way that he's ready. It may be sooner...or later...just like all things with Walker.

I hope I have the patience for the process and faith that he can cope with things that come his way, whatever they may be.

Blessings, Janie

Monday, April 21, 2008

Correcting Mistakes

I got a call from Sarah, our youngest daughter, today saying that she had visited my blog. Of course, her young eyes, being much more oriented to detail than mine, immediately caught one of what I'm sure will become many, mistakes in my posting. It seems that I have once again gotten a bit confused about Walker III's birthdate. He is about to turn thirty three in August, not 34 as I had indicated in my profile.

When Walker was just a little fellow and was learning all the things that pre-schoolers learn, one item on my list of things to teach him was his birthdate. One afternoon, after a particularly lengthy round of car pools for the girls during which I drilled him incessantly, he finally mastered it. When I picked Molly up after a choir rehearsal or soccer practice, I boasted to her that Walker had finally learned his birthday and asked him to show Molly what he had learned. "August Twenty-fifth" he piped. As I gave Molly a "see, I told you so look", she retorted that that was pretty impressive, but that his birthday was actually August Twenty-seventh. It took several more years to re-teach Walker the correct date. It wasn't nearly so difficult to correct the date on my blog.

May all my mistakes be easily corrected.
Blessings, Janie

Sunday, April 20, 2008

Surprises Abound

Today was a typical Sunday with our family. My husband, (also named Walker, so for clarity I'll sometimes refer to our son as Walker III) and I got up early because we had a yard man coming. We each muddled around and got something for breakfast, and I settled in with the newspaper while he dealt with the Spring clean up chores. Walker III came down some time later, and when I noticed that he had on his church clothes, I knew that once again, we'd failed to communicate.

This time it was my fault that I hadn't told him that our plans didn't include church today. He took the news cheerfully enough, and when I offered to take him to Sunday School, he declined, saying that it was okay, since he hadn't actually gotten a shower the night before. In this instance, as in many instances, you have to know the language of Walker. "Okay" really meant he didn't want to go, and that I was off the hook.

After fixing his breakfast, currently his preferred meal is sausage and biscuits, which he cooks in the microwave, Walker disappeared back upstairs. I went to the grocery, the one where he works, and did a mammoth shopping, since I hadn't been in a while. His co-workers who knew I was his mom, greeted me cheerily. Walker had given me a list of the indispensibles for the week which included diet cokes, both with and without caffiene, and in six packs of bottles and twelve packs of cans.

Now, I don't really understand exactly all the details of Walker's beverage choices, but they are always sugar free/diet. He made this decision about eight years ago after needing some extensive dental work, which he referred to as the "Nightmare on Dental Street". The dentist convinced him that the diet drinks were preferable to the sugary ones he loved. She and I both knew that the chances of convincing him to switch to water were slim and none as he spends seven hours a day in a grocery store and generally buys whatever he wants. Eventually, his boss banned all drinks but water from the checkout lines, and that cut back on the number of sodas Walker consumes a day, but has definitely not eliminated them. The switch to caffiene free occurs at dark in Winter, seven in the evening in the other months, my rule, but self-enforced by Walker to prevent sleep problems.

When I got home, Walker immediately came down to help me unload and put away the groceries, pleased with many of my choices, curious about other unfamiliar ones. He made his lunch, and disappeared back upstairs. We'll see him again at dinner unless I call on him for some kind of help, then he'll disappear till morning.

All of the above is simply evidence of Walker's ever increasing self-modulation and independence. This progress has probably been the most surprising thing to me about him. I had been told when he was young that he would probably function in the ten to twelve year old range, and in my mind, he would simply be stuck there forever. Surprise, Surprise, Surprise as my fellow Alabamian Gomer Pyle used to say.

I am a social worker by profession and completed an internship in developmental disabilities as part of my training. My supervisor was the director of a clinic which screened at-risk children. An understanding normal growth and development was essential to this screening process. I know that there are those who contend that test scores are just numbers, and that developmental charts don't apply to every child, and that there's no such thing as "normal". My life with Walker has taught me to value these tools to determine his needs and my expectations. My hands on experience in the clinic with a variety of children bolstered my observations of my own children, including Walker. I came to realize that his development followed a very predictable pattern, similar to his siblings, but on a different time table. As I have explained to my daughters through the years, retarded comes from the same root as tardy, and Walker just runs late--sometimes a little, sometimes a lot.

As Walker, his dad, and I have all aged, we have constantly readjusted our life patterns to accomodate our individual and family developmental stages. It's an interesting journey.

Blessings to all, Janie

My Casual Observations Begin

After pondering what to "do" with my incessant need to share my opinions, which I really prefer to call observations, since that sounds a little less judgmental, I'm finally getting started. Since my subject matter will vary daily, perhaps even hour to hour, it's really going to be difficult to restrain myself and not bore you all to death.

Many, although certainly not all, of my posts will be related to living with our son who has Down Syndrome. Walker is thirty two and lives with his dad and me in Memphis, Tennessee. Our life is at a very good place right now, since he has a good job, takes his responsibilities both at work and around the house very seriously, and we are getting decent services from the agency serving him. That has not always been so.

Part of what I want to share with you is the endless cycles of good times and bad times involved in having a child with special needs. Sometimes the cycles are long and good ones, other times they have been long and unpleasant ones. The important thing has been that none of them have lasted forever. From my perspective of over 30 years of parenting not only a special needs individual, but three daughters with their own needs, which have been equally as special, I have concluded that living with Walker has neither been better nor worse, just different.

Not too many years ago, I read a book written by , Gene Stallings well-known coach at The University of Alabama about his experience with his son, Johnny, who also has Down Syndrome. (Another Season: A Father's Story by Gene Stallings with Sally Cook) Coach Stallings stated in that book that he wouldn't choose for Johnny to be any different, even if he could. Well, I've wrestled long and hard with that question. Would I choose for Walker to be the idealized child I had expected if someone could wave a magic wand and make it so? I know now that I wouldn't give up our life experiences with Walker for someone else's life, no matter how perfect.

I hope you'll see why I feel this way as I share some of my stories with you.

Thanks for reading my first blog! Hope you'll come back often. Blessings, Janie