Thursday, May 29, 2008


As I've aged and experienced some major unexpected events in my life, I've adjusted my expectations to the point that my children see me as somewhat of a cynic. I've lost the feeling that I remember of lying awake on Christmas Eve wondering what to expect, of hoping that this birthday or anniversary will be the best one ever, of praying for a pony until I actually got one. I remember imagining my perfect children, certain that I'd be the best mother ever. I probably wasn't.

I don't see it so much as cynacism but as realism. I've discovered lately that even if I think I've followed an old familiar recipe exactly, it might not turn out exactly the same as before. Maybe the phone rang and I added the salt twice, or maybe I just let my thoughts wander and left something out. Whatever happened, it happened. I guess that's one reason I hesitated to try new things. What if I'm disappointed. What if I really can't do it.

I have a few friends with children with disabilities who were not diagnosed until they were toddlers. Our friend Steffen appeared to be a perfectly ordinary kid until he had some sort of psychotic break when he was in his late teens. The football hero that was exactly Walker's age was killed in a car crash when he was in college. We just never know.

The one thing in my life I'm absolutely sure I'm not disappointed in is Walker. Frankly, my expectations for him were probably too low. The books I read when he was born were not encouraging. The Early Intervention Specialists that took us under their wings kept emphasizing that there was no outcome guaranteed. We were part of an experiment to see whether we might make a difference. And what a difference it turned out to be.

I saw many of those parents of Walker's Early Intervention Class at the Special Olympics Prom last week. Most of their kids are productive citizens. We are all proud of them for different things, but we are all proud. I never expected that.

I hope I'll curb my fears enough to know that life will give me better things than I ever expected, and that somehow I'll make it through the bad ones. I'm eternally grateful for the surprise of finding the joy in having Walker.


Sunday, May 25, 2008

Night on the Town II

Do you ever feel like there's somebody out there making things fall into place? Last night was one of those times for me.

I had bought tickets to the Special Olympics Prom simply to be supportive, one of those things we have done for Walker's sake through the years without much enthusiasm. I detest formal affairs, and only attend when I absolutely can't find a way to avoid them.

Yesterday morning my back pain had escalated to the point that I ended up not going to a funeral that I really felt called to attend. I simply could not get dressed. Later that afternoon, in absolute desperation, I finally got on a back stretching machine that a friend has insisted I borrow to aleviate some of my aches and pains.

The ugly black machine had been cluttering up my living room for a week or so. Frankly, I mostly believe in "real" medicine, the kind my insurance pays for done by people in white, or sometimes pastel, medical outfits. But I was desperate to ease an impossible pain down my thigh and just hoped that maybe doing that might get me on my feet for the prom. It certainly couldn't be any worse than the awful knee injections I've been getting for the past month.

It wasn't a pretty sight getting me hooked up to the thing. I'm incredibly short overall, particularly short legged. My ever-helpful husband, who I am absolutely sure is ready to go back to Viet Nam rather than deal with my complaints by now, gave me one of his typically wordy instruction lectures. Then he made all the parts fit me, completely overlooking the fact that my height and weight didn't exactly match on their chart, even if I fudged a few pounds on the weight. He very gently helped me overcome my terror of heights and pretty serious anxiety that I might slide off on my head and be paralyzed forever. (The shorter you are, the higher off the ground the thing makes you feel, I think.) I finally relaxed enough to stay on it for a few minutes, definitely with very low expectations, even as my anxiety decreased. When I got off, I realized that I was walking with considerable more ease. My left knee was still sore, but it was a familiar soreness. My back had relaxed, and the knife stabbing my thigh had been removed, at least temporarily.

Over the course of the afternoon, I tried the machine another time or two, increasing my time to five minutes, and finally figuring out a way to get on and off it alone. (Those of you who know me can probably understand how much I didn't want to be dependent on my spouse indefinitely.)

We went to the Prom, saw lots of old friends we hadn't seen with any regularity over the past fifteen years or so. It was a class reunion of an alma mater we never would have chosen.

Walker looked so handsome in his tuxedo, and the planners had made a conscious effort to allow the Special Olympics athletes enter on a red carpet to much fanfare, flashbulb popping, and video coverage. The handlers, politely told us that I would be escorted by a gentleman assigned the task of escorting mothers, with my husband following. Walker felt like a movie star. He greeted old friends and glad handed like a polititian and gave his signature salute to the cameras. An old girlfriend in a pretty pink dress asked him to dance, although he soon deserted her to play air guitar and other appropriate instruments in front of the Dee Jay for the remainder of the night.

Bill's machine made a difference in my life yesterday. His insistence that it would work fell on deaf ears, but my affection for this Brit who married one of my best friends a few years ago convinced me to try it just to be polite. Somebody or something made my back fall into place and allowed me enjoy a night out.

I hope I will be more open to things I don't really believe in in the future. I hope I'll always have good friends who care about me enough to convince me to try something that seems ridiculous or frightens me.



Friday, May 23, 2008

Through a Different Lens

I have been having increasing difficulty seeing lately, and was really frustrated when just reading a book became more of a chore than I was ready to tackle. I, in all my fearfulness, thought that my vision must be declining much more rapidly than I expected due to my diabetes. When I finally admitted this difficulty to myself, and to my husband, Walker looked at me carefully and commented that he thought my glasses were just on crooked.

Today, I stopped by the optometrist office, and in just a few minutes they had me back to normal. My vision was skewed because my glasses had somehow gotten twisted out of shape.
I can go back to one of my favorite pastimes.

I wonder how often I look at others through skewed glasses and don't really get a clear picture of who they are.

I hope I will remember to look for a simple solution and clear up my perceptions from time to time.



Today is a beautiful day in the neighborhood. The musical portion of Walker's speech therapy echoes through the otherwise quiet house. I'm about to meet with an old friend for lunch. The youngest grandson will be here to spend the night, so I'll soon be innundated with Barney songs and tiny toys all over the floor and get to cuddle a little one and sing to him.
The garden is thriving with all the rain we've had, even if that same rain deals my aching knees fits.

Yesterday was an odd day for this time of year. When I dropped Walker off at work, it was pouring rain and I had to caution him about avoiding the parking lot during thunderstorms, but by late afternoon it was beautiful and sunny.

I love that the storms are followed by a burst of energy activated by the natural nitrogen dispersed in the raindrops, and usually the plant growth is more vigorous and brilliant because of it. It's also a bit easier to pull the weeds.

Our own growth and development is that way too. The most difficult stages of life are generally followed by renewed energy and enthusiasm. Sometimes we discover which things in life need to be removed and which need fertilizing and cultivating.

I hope I'll remember to appreciate the storms and be comforted by the better times just around the corner.

Blessings, Janie

Wednesday, May 21, 2008

Night on the Town

Walker's dad took him to be fitted for a tuxedo last night. He has been invited to attend a celebration of the volunteer efforts of John and Lilly Kingsley who have been the backbone of the Special Olympics program in Memphis for many, many years. Their son, John, is a magnificent athlete, having won numerous medals at an international level. They had dreamed of having a big dress up affair for their participants for a long time, and an equally devoted bunch of volunteers have organized an elegant dinner and dance at a fancy hotel.

I think Walker will enjoy the event, and we've bought tickets too so we can participate in honoring the Kingsleys.

The Kingsleys are truly special people. Their whole family has participated as coaches and chaperones through the years. Lilly is legally blind, and John has fought cancer for quite some time, but they have always been there, every Wednesday night for practice, and at every event.

Walker no longer competes in Special Olympics, partly due to time constraints with his job, and partly because he was never very enthusiastic about group sports. Other than competing in swimming, he spent most of his evenings with Special Olympics roller skating alone in the church gym where they met. He never talked much about it, but that's what we'd find him doing when we picked him up.

When his swim coach retired, Walker did too, saying that he was too tired after work. I suspect that the hours interfered with his TV watching too, but just let that slide.

I would probably step in if I noticed him gaining weight, but his figure is one that the other guys in my family envy, so I count on him getting his exercise lifting grocery bags all day. Seems to work.

I hope I'll always recognize those who have made a difference in my children's lives, and as a result in my life. I hope there will always be people like The Kingsleys that care enough to make things happen. I hope Walker asks someone to dance and enjoys being all dressed up and we enjoy seeing him happy, even if it entails putting on a tux and dress shoes.

Blessings, Janie

Monday, May 19, 2008

When I Grow Up

This seems to be one of those days when I just don't want to do what I'm supposed to. I didn't want to eat a healthy breakfast, but I did because I'm all out of sinful treats. I didn't want to wash my hair and get ready for a luncheon. I really, really, don't want to go get the third of a series of extremely painful shots in my knees. I don't want to worry about what to feed my family for dinner, but I know I've slacked off too much lately, and I need to plan something decent. The one thing I did want to do was go to a jewelry sale, but it interfered with that decent dinner, and I'm really not in a buying mood anyway, so I gave myself permission to cancel that.

Sometimes I feel like Walker is more of an adult than I am. It has taken us years to get him there, but he follows through with the necessaries of grooming and chores like a robot that has been properly programmed. He doesn't like changes of plans much better than his dad does, but has learned that stuff happens and plans change. It helps if we make it clear to him that plans are negotiable or non-negotiable and give him choices where there's some wiggle room for his preferences.

In return for his developing into a reliable and responsible adult, we allow him to use his free time pretty much as he chooses. He watches a lot of TV but we don't monitor what he watches. My son-in-law, the most outrageous one of three, asked me if Walker realized that he could be drinking beer and watching porn if he wanted to. I've never informed Walker of those adult priviledges, and, thankfully, he has shown more interest in Hannah Montana and Diet Cokes. I suspect his friend, Steffen, indulges in some more adult pursuits, but never when he's with Walker.

Some days I wish I were more like Walker. I wish I were unaware of catastrophes all over the world and the potential crash of our economy. I wish I didn't worry about anything more than whether I remembered my name tag for work. I wish I were innocent again.

Blessings, Janie

Friday, May 16, 2008

Plan B...or C or D or Z

First, let me make it clear that my husband is a saint. More on that subject another time, but rest assured, he is one of the best people in the world.

He does, however, tend to make plans and have a difficult time when they don't work out like he planned...which is a lot of the time. Today was one of those days.

We had been discussing weekend plans, and needed to do some things at the house at the lake. The weather report looked positive and Walker was going out with his attendant, and I was feeling good. So when we went to bed last night, that plan was loosely in place.

We were being a bit lazy this morning and just about to get up when the phone rang. I had forgotten that I had agreed to keep one of the children while his mommy went to brother's end of year party. Okay, it was only going to be for a short time, we could get packed while he was here. Before that plan was put in motion, another grandchild wanted to come over while her parents ran some errands. In my mind, still not a problem. I still needed to get some plants in the ground before the weather becomes unbearably hot, so we could get that done while she was here. We did that and got a couple of necessary errands done.

Then someone left the gate open and the dog got out. We live near the intersection of two busy streets, so once we realized Charlie was gone, there was nothing to do but go look for him. We found him, across one of the streets, where he had stopped traffic in both directions. Some lovely young mom's and their kids had rescued him.

So now, it's four o'clock, we still aren't packed for the lake, and we're dirty and tired, and I'm feeling terrible that our day didn't work out like we planned. My husband is tidying up and putting away tools, and I'm thinking I'd really rather go to a movie than drive to the lake in Friday afternoon traffic.

That is a often a typical day at our house. This time, Walker III wasn't a part of the problem, but when you have an adult with a disability living with you, you never know.

I can't begin to calculate the number of times we have gotten a call from work that there was a problem (more on that another time too) or had to arrange rides for him when we had car maintenance or because he had an unexpected need for a doctor visit.

Shifting directions on a dime is an absolute necessity when you have a family, with or without a child with a problem. A fellow grandmother said to me recently that we're not unemployed, we're "on call". I'm truly grateful that we are able to be "on call".

The rewards are getting to watch "Barney" with a toddler and take our granddaughter out to lunch and learn all about the life cycle of worms and ladybugs from her while we dig in the dirt.

I hope we will always remember to shift to another path without complaining and appreciate the experiences along the way.

Blessings, Janie

Thursday, May 15, 2008

Lost and Found Part 2

I didn't want to detract from the story of Tueday night's search for a lost boy in my post yesterday, but am back to pointing the similarities in all child rearing, including that of Special Needs individuals.

Perhaps because I had so many children, (Okay, four might not be a lot by some people's standards, but it was a lot for me.) I was a somewhat lax parent at times. It was also a simpler time, before we all thought about the fact that an eight year old could be snatched from a ball pit at a pizza joint. We lived in a pleasant residential neighborhood, within walking distance of a drug store. From the time the older girls were seven or eight, they were allowed to walk up to the store from time to time, and by the time the oldest was eleven or so, Walker sometimes accompanied them.

I'm not sure how we determined when the older girls were ready for these little outings, but I suspect it came from a request to go to the store for some small want or desire that I had neglected to provide. Perhaps that's how they spent their allowance back then. I think my gut must have whistpered to me when a request was going to be okay. If you demonstrated a capacity to follow the guidelines of crossing streets carefully and with the light, and if you were brave enough to ask permission to go to the store, I generally gave it. My general rule for most things was to say yes unless there was an important reason for saying no. The increasingly dangerous city we live in has meant that all of us would be more cautious today than we were in the late '70s, I'm sure. My daughters don't let their children go to a public restroom alone, ever, I don't think.

The first time Walker disappeared was on his sixth birthday. There were lots of neighborhood kids lingering after the party, intrigued by the pony that we had provided for rides. Delivery of the pony was free, but you had to pay the guy to take it back. As we waited and I cleaned up a bit, I realized that Walker wasn't out front with the other children. Everyone thought someone else was watching him, and he was gone. We fanned out in the neighborhood, never thinking that he might have crossed the somewhat busy street in front of the house. Just as I was beginning to panic, a neighbor I had never seen before crossed the street with Walker in tow. He was wearing nothing but his new Superman Underoos, and was carring his Pink Panther and a five dollar bill he had gotten for his birthday.

I know Walker looked about half his age, and that neighbor must have thought I was the worst mother in the world. It wasn't the kind of neighborhood where you let your child run around in his underwear, even if it was a superhero motif. Walker had not run away, though, he had just gone to the drugstore to spend his birthday money. I suspect that he knew where he was going and how to get home, but the adventure frightened all of us.

A while after that, Walker wandered off into the construction of The Peabody Hotel while the rest of us waited for a table on Mother's Day. Again, each of us thought the other was watching out for him. This time he got on an elevator and got off on an unfinished floor. A friendly security guard was holding him, and he was returned to us in time for lunch.

Those two incidents should have been enough to turn me into a much more conscientous parent, and I did keep a tighter rein on Walker for quite some time, but I probably didn't fuss at him severely enough because I was so relieved to get him back.

Walker's adventures continued, probably because I didn't realize that although he still looked like a little kid, he was beginning to feel confident out in the world. I wasn't observant enough of his increasing maturity, which also meant increasing his bravado about striking off on his own.

The most terrifying disappearance happened at The Cotton Bowl in Dallas, Texas, where Sarah was attending college. Walker had been accompanying us to football games for years. Sarah was a cheerleader in high school, and while we watched the game, and the cheerleaders, Walker and other younger children generally ran around under the bleachers or on a nearby soccer field. It was a safe enough environment to allow him some freedom, and we did.

When we arrived at the Southern Methodist University football game, Walker immediately asked permission to sit down closer to the band, alone, but within sight of us and all our friends. After a bit, he asked permission to go to the restroom, which was just behind our seats. Again, it seemed like a safe bet to let him go alone. He was about eighteen or nineteen, the somewhat sparse crowd was mostly parents. But after a reasonable length of time, I sensed that Walker should have returned, and sent his dad to check on him, assuming that he had gotten distracted by a souvenir stand or gone in search of a coke machine. When my husband returned with the news that Walker was no where to be found, my heart lurched.

This was before the days of everyone carrying cell phones. Walker knew how to call home, but not how to use a public phone booth, and he had no idea how to call Sarah who lived in a dorm, and probably had no phone listed. Again, our friends fanned out, and I stayed put, in hopes that he would return to our seats. And, he did, just as the word had gone out to security that he was missing. He had gone to the Texas State Fair through a gate where his Cotton Bowl ticket provided free admission. He came back when he ran out of money. What was probably only about thirty minutes had passed, but when your heart is pounding because you've lost your child, it seems like ten times that amount of time.

The last time Walker disappeared was just after he started his job at the supermarket. I was running a few minutes late picking him up. This time, I knew he knew better, or at least I thought he did, and I really feared for his safety. I had my grandson in tow, in full clown make-up from a Halloween party. With him on my hip, I searched the Target store nearby, and began cruising the neighborhood. The realization that Walker could be anywhere terrified me. He was, and still is, small for his age. It wouldn't take a low life bully very long to beat him to a pulp. Maybe I had allowed him out into the community too much before he was truly "grown up". After a sickening search, I returned home to see whether he might have left a message on our machine. He hadn't. A friend called and when I told her what had happened, she immediately came to my house to wait and watch my grandchild while I continued my search. As I re-traced my route to the store, there was Walker, headed home. Somehow I had failed to see him initially. This time, I totally lost it. I laid all the guilt I had within me on his young shoulders. My tears and anger accomplished one of the final steps in teaching him responsibility. Getting him a cell phone was what I hope was the final step.

I believe I've done the right thing allowing my children freedom to grow. I hope I'll be brave enough to trust that all of them, including Walker, will send a signal when they are ready for more.

Blessings, Janie

Wednesday, May 14, 2008

Lost and Found

The phone call came just at dusk. My friend's twelve year old grandson was missing. He was upset over his grades and left a note saying he just couldn't take it anymore, and he left. When I heard the news, he had been missing over three hours. She asked for prayer, so I went to my handy dandy message machine and blitzed all of our mutual acquaintances with a request to pray for the safe return of this beautiful, and vulnerable, little boy.

I was dazed by the news, and more or less in a fog as I wandered around picking up napkins and glasses from a meeting that had just ended. Another friend called, and insisted that we had to do something. She was coming to get me and we would help look. Ever the cynic, I went, but had little faith that our efforts would produce much. It was getting darker, and as we rode down Poplar Avenue toward the area where the child was last seen, it was evident that if he wanted to hide, there would be little hope of finding him. There were just too many places to disappear in the maze of businesses and churches. We scanned the sidewalk constantly, peered into the windows of nearly empty fast food joints, and drove and drove and drove.

Soon we linked up with the grandmother in the parking lot of a large office campus where he had last been seen. This looked even more hopeless. There were woody areas, vast parking garages, and a million places for a kid to disappear. We spread out again, armed with flyers with the angelic looking boy's picture. Just seeing it made me feel ill. The few clues they had gotten made me feel even more ill. He had been in a Walgreen's about two hours earlier. He had given a homeless man ten dollars. He had a kind heart. The only hopeful sign was that it appeared that he had changed directions and seemed to be heading back home. But it was still a long, dangerous route.

A few minutes later, the call came. The child had spotted his family at a nearby bus kiosk handing out posters and walked up to them. He sheepishly admitted that he had gotten scared as darkness fell, and had been sitting in a Burger King, trying to figure out what to do. His grandmother called me later to confirm that he had indeed given a homeless man ten dollars. He had a good heart.

Many, maybe most of us, have experienced that gutteral fear of having a child or grandchild missing, at least for a brief period. We have seen the television coverage of missing kids. I wonder what we might do to give our kids the confidence that nothing, absolutely nothing, they can do is worse than just disappearing.

I hope our little runaway will have some long and productive talks with his parents and professionals as needed. I hope we'll all realize how vulnerable our children are to our criticism and serve it sparingly. I hope that coping with disappointment and criticism in a positive manner becomes part of what every kid learns before he becomes brave enough to run away because of it.

Blessings, Janie

Monday, May 12, 2008

Lesson Learned

Some comments about having a disabled child really, really make me crazy. Particularly those that indicate that God knew that we could handle it so he sent us a special child. Believe me, most of the time I don't feel like I am the kind of parent that any wise God might send any kids at all to. In spite of the fact that all I ever wanted to be in life was a mother, I didn't have a clue. Fortunately I learned how to put good resources in place.

I think that one of the earliest coping skills I learned, was how to get Walker into the best programs available. This was no less than I did for my other children, I just didn't really have friends to provide resources or recommendations for Walker. I was a new member of a club no one wants to be invited to join.

The first few years, we kind of muddled through. We were on the cusp of Early Intervention and were visited by a Physical Therapist and a Nurse Practitioner who were working on their doctorates at the time when Walker was about a month old. Dr. Barbara Connelly and Dr. Faye Russell eventually became lifetime friends. Their words of wisdom guided us through the first months. Even the parent groups, which I had a healthy skepticism about, were helpful.

I never did do some of the more bizarre therapies at home, such as fingerpainting with chocolate pudding or tickling with feathers, but I did learn to expect Walker to grow and develop in a predictable, if slow moving, order. I had more faith in the Physical Therapy exercises because I could see more documentable progress. At one point, I bluntly asked Faye for some indication that all this stimulation would pay off in the long run in a smarter child. She answered me just as bluntly in her Arkansas drawl, that she'd never seen a really smart child emerge from neglect, and that her years of experience supported her theory that we could make a difference.

Choosing a pre-school and elementary school were more difficult. We were fortunate to have Walker placed in The Harwood Center, coincidentally named for a cousin of my future son-in-law, and an excellent program. They had these great two-way windows and pretty much an open door policy so I watched Walker with rapt interest frequently. When it was time for potty training, they sent me instructions, and Miss Jenny Gates spent several days in the restroom with Walker and one or two others. Then they were trained, more or less. I've often thought that there should be a similar program for typical children. Maybe there is now.

Then came the day I had been waiting for since soon after Walker was born. He had an interview with Sister Mary Mark at Madonna Day school one beautiful Spring day. This was an important interview, and I dressed him in his Sunday best. Since he was the size of a typical two year old, although he was almost five, he really looked like an old fashioned doll in his little button on shorts and lace shirt.

The admissions process did not go well. I knew from observing Walker that he knew his colors and shapes and could count to ten. He knew his address and phone number. But Sister didn't use the usual developmental tests. Instead, she sat him on her desk, which was cluttered with lots of enticing office necessities. Walker was so distracted by his access to these goodies that he paid almost no attention to the questions Sister asked. He could have redeemed himself simply by counting to ten, but he absolutely refused. After about fifteen minutes, Sister told me he was just too young. I went home heartbroken, and really annoyed that I would have the hassle of driving him almost an hour each way to Harwood for another year.

By June, I was even more frustrated. Walker had accomplished all the usual things taught at Harwood, and I really didn't want to do the drive anymore. By then Sarah was a toddler, and she invariably got carsick about halfway to Harwood. Life was difficult. So...I called Sister again and this time I begged her to see him again.

Our second visit was a little different. I had prompted Walker to be on his best behavior with the promise of ice cream after the interview. Sister Mary Mark asked me to leave him with Sister Judy for about an hour. Sister Judy got on the floor with him, and put him through his paces. When I returned, she told me that he had done beautifully and would be accepted for Summer school on a trial basis. He immediately piped up to inform me that he did NOT count. Sister Judy passed him anyway, because he had done the much more complicated task of handing him a certain number of blocks repeatedly.

And so our days at Madonna began. It was a school that made serious demands of both students and parents, and I knew that they would push Walker to his full potential, whatever that might be.

One afternoon as the summer session was about to end, Sister Judy came out to my car with Walker in tow. She informed me that Walker had been naughty. He had called her a pig. It was all I could do to stifle a laugh, but this was no laughing matter to Sister Judy it was serious. For the rest of the session, my husband and I coached Walker to mind his manners, and he was admitted.

The next few years flew by. Walker progressed, moving up a "group" every year. Finally when he was about ten, he was promoted to the Junior High, and Sister Judy was to be his teacher again. Once again I began prompting him to be respectful to Sister. He finally assured me that he wouldn't call her ANY animals.

I have trouble controlling my tongue and expressions too. I like to remember that if Walker can do it, I can too.

I hope I will show love and respect to all just as he does.

Blessings, Janie

Sunday, May 11, 2008

Happy Mother's Day

It was a little chaotic this morning with two grandchildren overnighting. Unlike most days when we each kind of fend for ourselves for breakfast, I managed pancakes and bacon, and Walker joined us for breakfast. For a number of reasons, my churchgoing habits have changed, and I often don't go. Walker is given the option of going with his dad or not. Today he chose to stay home and "take care" of me.

While I was scanning the paper as the little ones finished their pancakes, a short blurb about Mother's Day was shown on one of the morning news programs. It featured an old lullaby, the one Dumbo's mother sings to him in the Disney classic, and some charming pictures of a mother and her small child. Walker and I were both transfixed by the sweetness. I looked up and noticed that he was a little teary. When I questioned him about it, he said he was just remembering that it was my mother's Mother's Day too. Perhaps the scenes reminded him of a group of pictures of my mother holding me as a newborn that hang just outside my bedroom door.

Walker comes by his sentimentality naturally, every one in our family tears up at tender moments from time to time. I was touched that he chose to share that with me. It's odd how a sad moment can turn into a positive one when shared. For Walker to empathize with my not having a mother to honor on this day showed that his capacity for understanding the feelings of others continues to grow. He is still maturing long past what we ever expected. That was a nice Mother's Day gift, even more special than the card he had presented.

I hope that all of us will remember that our mothers are special on this day. I know Walker and I do.

Blessings, Janie

Friday, May 9, 2008

All the World's a Stage

I grew up feeling pretty shy and insecure. After watching my grandchildren some who are more like me, some less, I’m convinced that we come into the world wired that way. Two of my daughters have had stage careers, one as a ballet dancer and the other as an actress. I hid behind the curtain at every dance recital of my life.

I look at pictures of me at four, and that slight mistrust of the world on my face is echoed in the face of the grandchild I think is most like me. He’s a tough guy when he’s in a comfortable situation, but it took him forever to get up his courage to walk to the center of the room in Kindermusik to claim the instrument he craved. He didn’t want to ride the elephant at the circus, and chose a seat on the ground floor with me, preferring to watch his cousins take part in the pre-show fun with his Da.

By the time I was grown and had two daughters, I was pretty good at polishing my perfect image, and that of my family, at least in public. We were always clean and beautifully dressed when we went out, even if we were running around in dirty night clothes until noon at home. I really thought that being perfect was my ticket to success that if I was perfect enough, I would get more courage. I would get an A+ in life if I just worked hard enough at it.

Then Walker arrived in all his imperfection. He was a pretty little baby, and people commented that he looked like there wasn’t anything wrong with him at all. As I studied this strange little creature, I began to notice the good things about him. As we began parenting classes, he measured up well when I compared him to the other little ones in the class. I began to brag about him openly to my friends; I began to act as if I were proud of him. And, guess what…before I knew it, I was.

Then one day, I found myself an overwhelmed mother of four children, one with special needs, and I found polishing my perfection entirely too much trouble. And, guess what else…I think people liked me better the less perfect I became. My friends might not have understood all that was involved with bringing up a child who was different, but they certainly didn't exclude me because of it. The love and support of those friends gave me a confidence I had never achieved while I was busy being perfect.
I think that my apparent courage in my handling of having a baby with Down Syndrome might have given my friends the freedom to share the cracks in their own plaster from time to time.

I recently attended a one woman play written and acted by my young friend, Rebecca Fisher. She titled her play "The Magnificence of the Disaster" and believe me, her early life was not just a disaster, but a true catastrophe of huge proportions. What Rebecca did with her story was to turn it into the most wonderful growth experience imaginable. Her play is honest and humorous and tragic, all in exactly the right proportions. (For more about Rebecca's play go to There are also clips on You Tube. It's amazing!)

I hope I’ll always realize that people do the best they can with what they have. I hope I’ll always realize that perfection is an illusion and sometimes not worth chasing. I hope I'll remember that disasters aren't always disasters, sometimes they are magnificent.

Blessings, Janie

Thursday, May 8, 2008

Change Change Change rerun

Today I changed my normal routine. Not much, mind you, but I did something different. I still did a couple of stretches before rising, I walked to the bathroom and then down the hall toward the kitchen, and then I noticed the rain. Instead of going outside to get my paper, I decided I could do without the warmed over news and read the comics online. I can't do without something to read, so I turned to the New York Times, which I get on my computer every day, but don't always read.

In the process of one click leading to another, I ran across a really interesting article about change. Since I consider myself resistant to change, and it held the promise of small changes having an effect on my overall intelligence, I kept reading. Perhaps you'd enjoy it too.

Walker loves for things to be exactly the same every single day, and we have set his life to suit his preferences, for the most part. It's nice to have the luxury of doing that. I enjoy waking up with the sun, but he likes to stay up late. I can go to sleep early, usually before Leno finishes the monologue, sometimes much before. He can't. In the beginning of his job, it was a real chore getting him up for work.

I soon realized that I had spent twenty five years getting children out of bed and off to school, and I was ready to live on my own preferred schedule, which usually includes reading my paper in my bathrobe, checking my e-mail, and having a nibble. I decided that I didn't want to spend the next twenty five years fighting Walker every morning so he could keep a job. Once he was somewhat established, I talked to his boss about having a regular schedule that would meet the store's needs as well as our family's. Now, nearly ten years later, our mornings work like clockwork.

Except when they don't. Perhaps there was a Happy Days marathon that kept Walker up past midnight or maybe I have an appointment or a grandchild to pick up. Accomodating the unexpected has been a struggle, but we are finally there, I think. I prepare Walker for the known changes well in advance, and he has learned that he has to operate at a different speed if he oversleeps.

For a very long time, Walker only wanted to go to movies he had seen before. I'm not sure how he saw them in the first place, perhaps on my lap with the family, but he really resisted new movies. Ultimately, we dragged him along resisting, but he generally enjoyed the experience and got a new "movie he had seen before" into his repertoire. He expanded this to tolerating movies with actors he knew, then directors he recognized in the credits, and sometimes even the production company

We are encouraging Walker to try new things when he goes out with his attendant, Theresa, on Fridays. His speech therapist changes his exercises from time to time. I offer new things for dinner once in a while. Lately, he has changed what he orders for lunch from day to day. (For the first five years he worked, I think he ate two pieces of fried chicken from the deli at the store every single day!) After his "nightmare on dental street", his daily routine includes diligent flossing and brushing with no nagging from me. He is growing up and discovering that change isn't always horrible.

I hope I can learn from what I read this morning and introduce myself to more changes. It's particularly hard for me as I age. I know what I like, and I like what I know, just like Walker. I'm most likely missing out on a lot, though. I think I'll order something different for lunch today.

Blessings, Janie

Wednesday, May 7, 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.

One of the most useful things I learned in Early Intervention Classes was how to determine a child's developmental age based on some pretty basic screening tests. The purpose of this constant assessment is that a little nudging toward the next task sometimes helps babies with Down Syndrome to advance a bit faster. I found that it also helped in understanding what was going on with my other children.

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 soon 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.

Just recently, my grandaughter asked me how old Walker is. I gave his real age, then explained that he is really more like a teenager. When she asked 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. His development has followed the almost identical path of that of my other children and grandchildren, only in slow motion.

Walker’s interests in movies and television can give me a peek into where he is developmentally. Although, like many of us, he occasionally goes back to watch a childhood favorite, right now he is generally choosing the kinds of things that pre-teens or perhaps young teens enjoy at the moment. He loves “Hannah Montana” and he was totally impressed when his brother in law’s band, Rooney, opened for The Jonas Brothers on tour. He spends most of every pay check on a new CD or DVD. He is a “collector” of Disney Classics. Like most of the rest of his family, he enjoys musicals a great deal, particularly “High School Musical”. He loves silly comedies with Chevy Chase or Eddie Murphy. He no longer seems to think bathroom humor is the funniest thing ever. He stuck around to watch a more adult sit com with us recently. He actually enjoys the ritual of our church services and has developed his own faith successfully. All of these clues give me an idea of where he is and what he might need next.

So, how old is Walker? Well, it appears that his interests and abilities are like those of a young teenager. He has mostly gotten past the adolescent angst and settled into the reality that he is where he is, and for now there’s not much he can do about it. Thank goodness, he is coasting along pleasantly. There were times when that wasn't so true.
I consider it a sign of maturity that Walker has a kind of serenity about his life, at times more than the average person.

I personally have some difficulty with the inevitable changes that life brings. I struggle with some changes even when I look forward to them. I really struggle with the ones I anticipate being less pleasant. Change can be painful, and guess what, in my experience it never ends.

I wonder if and when Walker will embark on a more turbulent time of life, that time that adults face when they must separate from their parents and draw boundaries around their rights to make their own decisions. I’m already seeing evidence that he wants to decide a lot of things for himself. He accepts guidance from his speech therapist and personal attendant and his dad better than he accepts it from me.

I hope that Walker will achieve whatever level of independence makes him happy. I consider it my job to make the process easier, but I'm not kidding myself, it might be hard...really hard. It has always been that way in families, the best I can tell.

I hope that I continue to observe the changing needs of my family and friends and respect those changes. I hope I will accept the reality of whatever stage of life may confront me as gracefully as possible.

Blessings, Janie

Tuesday, May 6, 2008

What You Really Need

Sitting around visiting with some of our favorite people last weekend created a sense of contentment in me that I rarely experience. The food was great, the accomodations comfy, and the time to reconnect absolutely priceless. I wasn't really in the mood to write much when I returned, because I had spent a satisfying amount of time sharing stories and experiences with people I love. I realized that that one intangible experience is what I treasure most about my life right now.

My husband had a business for a number of years, and every time it would kind of get caught up financially, he would hire a new person or invest in something he really needed. I kept thinking that someday it would get to a point where it was running smoothly and could coast without added infusions of cash, and that we would enjoy the benefits of owning a business. That never happened, but eventually the business was sold for a nice profit, and we focused on other things we really needed. For me it is plants for my garden, some sit-arounds for the house, or an occasional splurge on something for one of the grandchildren. For my husband it is hunting equipment and supplies for his hobby farm. We both enjoy travel and eating out.

Walker III only really needs a few things in his life. Diet cokes, bottles and cans, with and without caffeine; flashlights and batteries, in case the power goes out; and Polaroid film.

The Polaroid film has been a constant struggle with us, because to us, it looks like he just wastes it taking pictures of coke cans or his TV screen. He owns a nice camera with a docking station, and for half the cost of the Polaroid, he can produce an almost instant result, and a much nicer quality picture. He uses the digital occasionally, and has produced some almost post card quality scenics of the Mississippi River and the bridge at Memphis, but the Polaroid is an obsession.

For a while, I decided to just let it go, since it was his pay check to spend, and Walker seems to have so few desires otherwise. Then one week he and his attendant came home with a large quantity of Polaroid, and he was out of money. He couldn’t afford to go to a movie or feed the Coke machine at church, which he does with an almost religious fervor. I was distraught that the attendant had let him spend such a large amount on Polaroid and that Walker used it up in one afternoon. All he had to show for it was more out of focus pictures of nothing, at least to my eyes, to add to his collection.

When he asked me for more money, I lectured him ad infinitum about budgeting, the virtue of the Kodak, on and on. Walker listened in a sulky silence, then he just went back upstairs without saying much at all. About an hour later, he came back down and cleared his throat to begin what was for him and me a major developmental event. He reasoned with me. He told me that his love for his Polaroid pictures was like my love for him and his sisters. He had me. We came to an agreement that he could buy one ten pack of Polaroid per week, and he has honored that agreement for a couple of years now, and he has plenty of money for other things he wants. He decides what he really needs just like the rest of us.

Of course, most of what I think I need is really what I want. Thank goodness all of us actually have more than we need.

I hope that we'll think about what we really need, and identify and treasure the things that matter. Maybe we'll even realize that some of our excess baggage might make our journey lighter, and that someone else might find our discards to be just what they need.


Thursday, May 1, 2008

Perfection Two

I'm going to be out of town for a few days, so no new posts. I'm pretty amazed at the number of readers. I appreciate your sharing my Blog with those you know who might find it interesting.

My trip will be one with most of the people in my life who know my imperfections and love me anyway. They are the ones who brought casseroles when all my babies were born, who have understood when I don't always reciprocate their lovely invitations, and who stood by with tears in their eyes when Walker sang a rousing, and extremely off-key, version of Amazing Grace at our Millenium celebration together. They don't notice the weeds in my garden, they notice the flowers.

May God bless me with friends like these throughout my life, and may I be as good a friend to them as they have been to me.



I don't know whether it's a function of genetics of upbringing or training, but I, and other members of my family, seem to be able to spot what's wrong much more easily than most people. I call it my inborn critic. Mostly, I don't mean for my impressions to convey negativity, just reality...what is, is.

The day Walker was born, I rode by the private school for boys where I fully intended for him attend, hoping that in a few years I would be like the mom's I saw loading their kindergarteners into the door for the first day of school. Later that night, when I was told immediately after he was born that it was indeed a boy, I felt absolutely euphoric.

I don't know why our society finds it so important to have a son, but in most families, it's of some importance. Having had two beautiful daughters, I was sort of beyond just hoping for a healthy baby. I wanted a boy this time.

Before he left the hospital that night, my husband knew that this little boy was not the one we had hoped for. I was saved from that knowledge for a few more hours.

When I was informed the next morning that Walker was almost certainly to be diagnosed with Down Syndrome, they had to connect that information to the one thing I already knew about birth defects--Mongoloid. Like some other parents, my sole information on this subject came from Dale Evans Rogers book,"Angel Unawares". I had read it as an adolescent, and cried when their beautiful, and well loved little girl died. The somewhat idealized experience of living with a child with Down Syndrome had never entered my consciousness at that point. I don't even recall ever seeing a child with Down Syndrome on the street or in the neighborhood. I do recall one young man who was "different" and a bit scarey who we kind of avoided on visits to my grandmother's, but that was it.

My main question for the doctor was about how long my baby would live. I think my greatest shock came when he informed me that Walker could live a very long life. He gave me a small amount of information about what his limitations would be, and it sounded even more horrible than I had first imagined.

At this point, I withdrew from everyone and everything. I hid under the covers and sobbed until drugs gave me a little peace. Every time I regained consciousness, that incessant sobbing returned. I refused to nurse, or even see my baby. I just wanted this nightmare to go away, and soon. Sometime during that second night, which was so different from the first, someone, probably my husband, perhaps a nurse, perhaps God, reminded me that you don't have to be perfect to need love.

Now, I had spent most of my thirty something years presenting my best impression of perfection. My mother started me down that path at age two when she permed my hair so I'd look more like Shirley Temple, everyone's ideal little girl in 1946. I had been driven to get E's on all my work at school, then later to bring home a higher GPA, then eventually to make a home and family that appeared, at least on the surface, to be perfection.

This event totally destroyed that image, and it was absolutely the best thing that ever happened to me. As I learned to accept Walker's limitations, I found that I had more patience with those of my two older daughters. Just as I understood that there were things he simply could not do, I began to forgive myself for the things I couldn't least most of the time.

May I always understand and give the benefit of the doubt to those who can't seem to do what seems to be right. May I at least look for a reason that explains why they don't.