What's Life Supposed to Be About Anyway?

By Joe D. Martone, mkd

“Down Right Active” the local Tidewater Down Syndrome Association monthly newsletter I’ve read faithfully for a dozen years came this week. Trashing the junk mail, sorting the bills and magazines, I put the 10 page bulletin in my weekend reading pile. After our usual Friday night routine of pizza order-delivery, dinner, TV, my nap, and more TV; I started reading the weeks mail between commercials and channel surfing. ‘Request from the Internet -- Dear Friends, Parents essays wanted ...’ it said in TDSA on page 5. Guidelines were: Tell a story about your journey, share wisdom, lessons, advice and encouragement. I had never before voluntarily written an “essay.” But I knew before finishing the memo that I would submit an article on my twenty-one year old Down Syndrome son Damon.

Normally a procrastinator, I was surprised to find myself starting up the computer at midnight that same evening. I really hoped my effort might comfort perhaps just one family somewhere. I was even more puzzled at “tearing up” while still in my first paragraph looking up a synonym for the word “essay.” After all, I’m a guy. I was blinking tears away. Wow! Where were these emotions coming from? This must be pretty important stuff. Deep-down the journey of self discovery was compelling me to put something in writing about my son Damon and me. I wondered why.


A PARENT’S HEARTACHE
Damon’s birth went fine. He was a wonderful baby. We hadn’t suspected any problem what-so-ever. My wife Sue called me from the pediatrician’s office at Damon’s thirty day “well baby” check. She wanted me to speak with the doctor. I said, “OK ... Honey, what’s up?” Silence....

The doctor explained Damon was not sick but might suffer from “Down Syndrome” (DS). I wasn’t sure I heard the physician correctly and didn’t know what he was talking about anyway. “OK ... what’s DS? Could you spell that,” I asked? After a few minutes when he tactfully mentioned the politically incorrect word’ “mongoloid”, I knew ... exactly.

I didn’t know it then, but looking back; the hardest time period for me was just after “learning” about Damon’s DS. Is ignorance bliss? Taking Damon for a blood/chromosome test “to know for certain” was painful for Sue and me. Waiting the several days thereafter for the results was very distressing for us both. Upon learning the fact, you grieve for the loss of a “normal child.” So, for similarly troubled parents who may read this, perhaps the “hard part” is already over for you. I hope so.

What were my first thoughts upon learning we had a severely handicapped son? What is the right thing to do? My trademark is honesty and integrity but I have never shared this with anyone before now. Some thoughts were dark, including a paper about “human euthanasia” I wrote back in high school. I’ve been taught to consider all the possibilities of situations. I was ashamed of some of the possible options that came to my mind.

I also remembered a junior college psych class “field trip” in the late 60’s to Pinecrest, the Washington State Mental Institution. Our professor briefed the group prior to the tour. The trip wasn’t mandatory. We would see the “milder” areas as an introduction visiting children and young adults, then progress to more “severe” areas. He answered some student questions. “No. We won’t visit the criminally insane dangerous area. You’ll be surprised at how ‘happy’ many of these people are ... You need to keep in mind, he said, this is their normal everyday life ... the only home some of them have known. No one you’ll see is in pain despite the ticks and quirks you may notice or what you perceive of their appearance. Some patients are going to be very friendly and want to touch you or hug you. It’s OK. Also, you’re not going to ‘catch’ anything from them. These people are not ‘contagious.’”

We saw the Pinecrest children first. Our instructor was right about the friendly, touchy, huggie part. A “warm up” you might say. Later ... unpleasant sights, sounds, and odors of young and older people, many in diapers, wasting away. I said at the time to another student, “Out of sight, out of mind,” and was embarrassed that a staff member over-heard. She looked directly at me and replied, “You’re right. But we do the best we can for them.” At the next class session her comment was discussed briefly. Our professor noted it wasn’t so much a defensive statement she made, but more a call for our understanding and help. That’s why we were there. The staff was coping with available resources ... limited resources. I thought “As a society; we have a long way to go.” I believe we have made good headway since that visit some thirty years ago.

The Immediate Question:
What should we do with or about Damon? “Are you going to keep him?” some people asked. Not, “What should we do for Damon?” Friends, relatives, professionals, and strangers were questioning, advising, and consoling. All were trying (mostly awkwardly) to do their best to help us. Some other people, including some relatives, will have a problem dealing with “your problem” too. Someone will say something that upsets you. Chances are good that in a short time you will often come to realize “that is their problem.” People, especially during the early months after discovering your challenge, frequently don’t know how to react or help, and just mess up their good intentions. Just get past that “short time.” I have come to feel sorry for a few of them. Curiously, dealing with a Down child is often far easier than dealing with some of the adults in their circle.

Advice: Just get on with it ... positively. One day at a time. Avoid the “doubting Thomas’s” and “nay- sayers.” In truth, we need and should appreciate all the help and support other people offer. You can never tell who or how someone might help you. Take Ted for example.


Ted - “What can Damon do?”
I knew a guy named Ted years ago. He was a motorcycle devotee who car pooled his big “macho” van to the building construction site we worked together. Ted irritated me. He had never met Damon but knew I had a handicapped boy and asked one day. “What’s he like. I mean ... What can he do.” I replied. “He’s a great kid. He does most everything ... just allot slower.” Thinking a while, I explained in terms Ted might relate to. “Imagine car-pooling with a small two cylinder engine in your van.” Ted remarked sounding concerned. “Gosh ... It must be tough.” Later he said. “So ... you like metaphors huh?” It turned out that Ted worked construction jobs’ days and attended college nights. I was doing the same thing. Ted wanted to teach and coach.

Over our next few weeks, with brief comments almost daily, Ted built a pretty elaborate “Damon -- two cylinder vehicle” metaphor. It had a sort of “Little Engine that Could” quality. “Traveling cross country. Trying to compete in a six and eight cylinder world. Slow. A little horn with a “beep” no one could hear. Defective crossed head lights. Engine trouble. More maintenance than others. Barely making it going up hill. Staying out of the ‘fast lane.’ Never passing. Always passed bye.” -- You get the picture. Ted’s manner? I began to think he was trying to ridicule me but I said nothing. Maybe he thought I was talking down to him when I threw out that first two cylinder metaphor. Or possibly I was being over sensitive about Damon. You become more aware of such likely possibilities when you have a handicapped kid.

“Damon will take the road ‘less traveled by’” Ted said one frosty morning. “But He’ll get there... Ya know...?” I thought, “Here we go ... again!” Ted continued in an unusually upbeat tone. “When I was younger I toured one summer vacation with some biker friends. We stuck together in a biker caravan. They all had two wheels ... two cylinders. Except my big chase van of course. It helped carry their load ... food, camp gear, and stuff. We traveled together... took it slow ... on the bumpy back roads, which were allot more interesting. Up over the mountains. Through rain and shine. It was tough some times, but... it was beautiful. We had a great time!” I looked at him and shook my head but as usual said nothing in reply.

I didn’t fully understand until a little later that day when Ted referred to me as “Van.” He said, “Hey ‘Van’ it would make ‘all the difference’ if you helped me carry this.” He knew it wasn’t my job to help him so I didn’t. I said nothing in reply. He let me think about it for a minute or two, then made eye contact and studied my face to see if I had “got it.” That topped all Ted’s previous weeks efforts combined. Moreover, I had finally grasped Ted’s good natured intent. Ted understood Damon and me much better than I had imagined him capable. We acknowledged one another ... smiling. I tipped my hard-hat in appreciation. “Took you long enough to figure out you’re the van,” Ted kidded. I haven’t seen Ted since that job completed. But I have often thought about what he shared with me. I hope he is teaching and coaching somewhere ... still teaching and coaching. I wish he knew Damon and me now.


A Positive Attitude
Friends believe I’m one of those “lucky” people who “naturally” wakes each day cheerfully looking foreword to the possibilities. If you saw the many “self help” and “think positive” paperbacks, audio, video, and CD programs in my little home library, you might suspect I learned to be a more positive thinker. You’d be correct. Advice: Don’t waste one minute in self pity or question “why.” Spend time with informative books or information and around positive people. Folks like Ted. Learn about Norman Vincent Peale, Dale Carnagie, and those who followed like Tony Robbins. This will help you immensely. Your positive attitude will do more to improve your situation and assist your child than anything else I know.

How many times have I looked at Damon after observing another child or adult, knowing for certain, “Damon will never be able to do or experience that?” Naturally my heart sinks a little. Just this Wednesday afternoon Damon and I took a friend of mine and his young son sailing. I asked the boy how he liked middle school. “Oh, fine,” he replied. I knew he was in the ‘gifted’ program taking ‘special classes’ for ‘exceptional’ students. He is two or three years ahead of his age group in science and takes a bus to high school for an advanced math class. Glancing at the two boys reflections in the car mirror I couldn’t help thinking how different their lives had to be and noted also our language of euphemisms. Damon attends “special classes” and is called “exceptional” too. Do I truly want to ponder at length this negative direction of thought? Of course not. So, I work at not dwelling in these areas. Advice: Don’t focus on the negative.

How may times have I observed someone; maybe one of Damon’s challenged school mates or possibly a person I know who is smart or perhaps financially well set, yet somehow miserable or unreasonably worried about this or that; and thought, “How lucky we are.” My wife accuses me of being a “Pollyanna.” I hope she’s right. I strive at it pretty hard. Advice: Be Positive. Be Grateful.

There is however a serious negative dimension in Damon’s full reality.


REALITY

Damon’s Challenges: One “extra” chromosome in every cell of his body. Billions of “mistakes.” (More is not always better. Is there a message at the genetic level here?) Born Down Syndrome. A very low IQ. Slow learner. An infant heart murmur that luckily went away. At eighteen months special eye glasses. Eartube surgery at two. A slight hearing loss detected at age four. Partially successful ‘lazy eye’ surgery at five. New glasses every couple years. Age thirteen dental braces. Development of severe sleep apnea (*1) at age fourteen; with subsequent unsuccessful soft palate surgery. At seventeen different type braces to undo earlier efforts. This to prepare for major jaw extension and plastic cosmetic chin surgery at nineteen that was experimental only a few years earlier. All this for his sleep apnea and to correct a severe bite problem included taking bone from his skull and titanium implants in his face. His mouth was wired shut for six weeks. He’s still in braces, has sleep apnea, and wears his CPAP mask/machine nightly to help him breathe, allowing sound sleep. He will be in braces a long time. Then the retainers will follow for a long time. Thereafter ... who knows?

Actually living it one day at a time has seemed no big deal. Honestly. However, on proofreading the above I discovered myself saying out-loud. “Wow!” And thinking, “This kid has been through allot.” More than many Down kids. Less than many too. Advice from personal experience: Get good medical insurance or benefits. Last but not least, be wary if your employer is “self insured” as this can put your employment in jeopardy.

What’ sleep apnea like? Imagine this. When and where ever you fall asleep, every couple minutes have some one gently pinch your nose and/or hold your mouth shut until you are disturbed just enough to nearly wake but are still half asleep half conscious to take a dozen or so semiconscious breaths. Do this nightly for thirty days. With no deep sleep rest, soon you’re a daytime zombie. People will notice something different about you but not know what it is…. You will not have a clue except you seem tired all the time and can fall asleep at the drop of a hat in the daytime.



HIS BLISS

Despite our heartache and parents view of Damon’s world of problems, even in his darkest hours, Damon has remained consistently optimistic and a happy spirit. Moreover, in spite what my college psychology professor said above -- Damon is “contagious.” Damon’s positive attitude and general happiness are “catching.” Yet Damon has never read a “self help” book. Where does this quality come from? Is he “gifted?”

Damon recently celebrated his twenty-first birthday helping read instructions, putting together, then jumping on his “big present;” a 14 foot trampoline. All of these things, at some point in our journey, someone had told us “not to expect,” including his 21st birthday! God how I have learned to reject pessimists.

For Damon his birthday wasn’t that much different than a normal day. Certainly not a much happier day than most, because Damon is nearly always in a very good mood. Why? Lots of reasons. Primarily though, Damon simply knows how to enjoy himself in about any situation. What’s Life Supposed to be about Anyway? In this regard he is truly “gifted.” Damon has been a pleasure to be around since his birth. His innocence. His manner. His acceptance of “his” world. His courage. His faith. His persistence. He is not heroic. He is just “good.”

If Damon had a “theme song” it would be “Don’t Worry, Be Happy.” Perhaps it’s a matter of priorities. Or maybe “Ignorance is bliss.” Some people may think this a cruel notion. But, ultimately all of us make life’s journey as individuals discovering our own worlds. So who’s to judge? As parents it is hard for us to think of our children as separate. We tend to see them as an extended part of us. We may want them to or even believe they perceive the world as we do. But they may see things very differently. They are individuals. Thank goodness.


OUR JOY

“Sailing Night.” It must be Wednesday.

Damon loves sailing. I have sailed both small racing boats and larger cruising boats since before our two sons Justin then Damon were born. We sold a catamaran sailboat, a month before our first son Justin arrived, to help pay the doctor bill. I purchased a Force 5 (a 14 foot single or double handed racing sail boat) the week after Damon was born. I guess that says something about my priorities. The boys have sailed with me since they could wear a life jacket. In many regattas when all the other Force 5’s were sailed solo .... I had a “crew”... me and either Justin or Damon. We have two Force 5’s now, both named for our boys, “Justin Time” and “Nomad.” Yes, we know the irony in spelling Damon’s name ... backwards. You might say, I reflected on that long before naming the boat.

Damon is a regular crew member on a friends’ Catalina 30 foot cruising sail boat. We’ve raced together nearly every Wednesday evening from May to October for fourteen years. Damon is our cheerful steward handing out soft drinks, beer, and chicken snacks to the crew. He was pretty shaky at first but has developed remarkable sea legs, is never sea sick, and is learning to sail. He’s even brought his girlfriend Sara on a race. Damon enjoys sailing as much as anyone I know.

One of my favorite sailing story’s is about Force 5 racing one balmy Chesapeake Bay summer afternoon years ago. Barely enough breeze to move the boats. The water almost glassy for a while. Our little fleet “ghosted” along close together over the hazy course. The other sailors in our class were solo and very considerate not to wake my “crew.” Damon had fallen asleep with his arm cushioning his little head and snored loudly enough (early signs of sleep apnea) for many other sailors to hear him across the calm waters. Of course, they couldn’t help teasing us in good fun. Damon and I had the last laugh though. The race committee recognized a “special situation” in our case and with out handicapping having won second place in our class, we took home TWO trophies! One for captain and one for crew. Damon’s first award. He grinned so proudly at receiving this unexpected prize at the awards ceremony in front of everyone; then for an instant laid his head over, eyes shut, with the trophy as a mock “pillow.” Most of the small crowd by then knew what had happened on the water earlier that day and they clapped, and cheered and laughed with Damon and me. The are many good people in the world.


“Pizza Night.” It must be Friday.

We have had a thousand “Damon moments to remember.” It’s nice that we remember only the good times ... mostly. He is truly special in ways that are difficult to express. Just this Friday evening we’re all in the den eating pizza and watching TV. As Damon sat legs crossed in front of us on the carpet, my wife Sue and I quiz him about his girlfriend Sara’s forthcoming birthday: A card and gift need to be purchased. We’re focusing presently on “future oriented” concepts; planning the day, tomorrow, next week, etc. Ideas you might tutor a normal six or eight year old. So I asked. “Damon, what’s your plan for tomorrow?” His immediate almost automatic response. “I don’t know.” Damon is a one word and very short sentence expert! I repeat the exact same question. On my second request he replies without missing one second of TV. “Sara. Birthday! Need present.”

Often Damon needs reminding to “talk like an adult.” So I persist in my “come on boy, you can answer better than that tone” -- “Damon ... you are twenty-one.” Reminding him he is twenty-one and a young man now gives us a little leverage because he is really proud of this recent “accomplishment.” “Tell us in ‘adult talk’ what you plan for tomorrow.” Damon sets up a little, clears his throat once to allow a little more verbal response composition time, then a second time just for dramatic effect. “Oh ya ... Ah.” He thinks for a few seconds. Then looks squarely at the pizza slice in his hand “for conformation” and says. “Pizza night. Today is Friday ... hee hee.” He wiggles and smirks. “Tomorrow: Sara’s birthday ... Saturday 4:00 ... Golf Jungle... OK?” -- His slightly sarcastic “OK” serves two purposes. One obvious to context. The other I believe implies, “Hey guys, how was that ‘I am a twenty-one year old now’ answer?”

Moms’ turn. She probes and prods his mind into the future. “What gift are you getting Sara for her Birthday party tomorrow?” Damon thinks about it and says apparently without the slightest care. “I don’t know.”

Dad continues. “OK. We’ll go shopping for Sara’s present tomorrow. How will you get to the party?” Slightly annoyed now because we’re double interrupting both his TV and pizza. Damon, with his back still to us, looks up at the ceiling and replies again ... with a higher pitched slightly annoyed ”I don’t know.”

Dad continues cross-examination. “Damon ... you don’t know what present to get Sara or have a way to get to her party. Aren’t you worried about this?” Damon now fully distracted from TV, turns toward us and cocks his head in slightly deeper thought, starts his slow smile, then giving a leisurely shrug, almost imperceptible head shake, and turning palms up, says slowly ... nonchalantly. “No.” He turns back, looking over shoulder at us briefly and sighs signifying - we’re done talking about this now right? Then as you would expect of any youngster, he quickly refocus’s on the ‘important stuff’ ... Video and Pizza.

From our “adult world” point of view, importantly, Damon doesn’t even begin to question, much less consider, why he should be concerned. Damon’s view: He just knows it will happen. Optimistic Faith. Living in the moment. What a great disposition. Furthermore, Mom and Dad know, he is right. It will happen. We glance at each other from behind Damon’s back. In a mime copied from Damon we both shrug and shake our heads turning palms up in acceptance. Sue and I smile at one another and return to ‘the important stuff’ too. Don’t worry. Be happy.


No School Tomorrow. Tomorrow is Saturday

Saturday is Sara’s 20th birthday. She is DS too, attends the same High School in the same Special Education TMR. (Trainable Mental Retarded) program with Damon. They share friends, teachers, school plays, and much more. Damon and Sara have genuinely loved one another for about two years. Dances, Special Olympics... swimming... parties, bowling, boating. Two special young people exploring high school life and going into their third year now... together... sort of. Of course, they talk on the phone. They have even mentioned the “M” word.

Marriage! Double Whoa!! In my adult perception of this “puppy love” romance I am... well.... I don’t know. This recent subject has naturally raised both kids sets of parents respective eyebrows. I recall a conversation with Sara’s mom. We agreed that the kids have done much more than we ever expected in many areas. Further, that our denying their possibilities can be a serious mistake. Recently a coworker asked if I thought Damon would ever marry. I answered honestly. “No.” But further explained that I am very cautious and try to be open-minded on this subject and others like it. The issues are serious and complex. I do believe this. Damon would be more likely to live up to marriage vows than most people. What’s a marriage suppose to be about anyway?


Sara’s Birthday Today. Today is Saturday

Saturday morning, Damon is up before Mom and Dad. He has made his bed and neatly laid out afternoon cloths all color matched ‘ready for the party’ on his bedroom floor: Black ball-cap, sunglasses, his favorite black “Shark” T-shirt, black shorts, white socks, black tennis shoes. Damon likes to “look cool.” My coming down stairs, the sweet smell of toasted waffles he’s made, tells me that Damon is probably breakfasting in the den watching you know what. He anticipates my peeking into the room and greets me with a pleasant smile and already raised glass of O.J. in gestured hello and says. “Morning Dad. How ya doin’? Sleep good?”

After breakfast Damon looks up Sara’s phone number in our family Rolodex where he has added his important names: A curious mix of friends and take-out/delivery restaurants. He knows her number by heart but his routine is to look it up “just to be sure.” Dialing ... he makes a push button mistake: Fine motor skills when combined with remembering abstract numbers is very tough to process for Damon. Both cylinders are working near maximum capacity. He re-dials with a determined grimace. After this “task” is accomplished he shifts his eyes to meet mine, smiling out of just one side only. With pinched lips he nods his head up and down in affirmation that it’s ringing at her end. A “so far so good” expression. Then a big silent grin, simultaneous “Groucho Marks” eyebrow move, and a quick “thumb up” to me.... upon hearing her voice. Instant bliss. “Hey Sara. How ya doin..?” he asks. This is followed with a still smiling yet unmistakable head and hand “it’s time for you to leave Dad” gesture. I oblige and exit the room ... amused. How I love this kid.

Sara’s Birthday party was attended by a few van driving parents and ten ‘special’ kids: Six DS and four with other challenges; all pretty much paired up boy - girl. So, you might ask, “How was the party?”
A quote from Ted would sum it up nicely. “We stuck together ... Through rain and shine ... It was beautiful ... We had a great time.”


LOOKING BACK: ONE DAY AT A TIME
It hasn’t been that hard. Really. Just one day at a time. DS kids mostly grow into their “challenges.” As infants they simply want what all babies demand -- basic functional needs and lots of love. As preschoolers they gradually fall behind kids their same age in about every category of measurement except perhaps one. DS children seem to be able to respond to caring by returning a disproportionately greater love. Maybe it’s do to their so called “limited choices.” Whatever the reason ... it can be wonderful for their families, friends, teachers.

Grade, middle, and high school are obviously all about learning. I’m very impressed at how dedicated and competent some of Damon’s teachers, their assistants, and others -- like the school bus drivers, have been. Advice? Seek out good teachers and others in a position to help. Get involved a little. Just talk with them. The “system” will naturally respond to your helpful efforts positively, especially if your demeanor is likewise.

A Down Syndrome persons life possibilities are, like any life, abundant. Much depends on “how you want to measure.” You know ... “Is the glass half full or half empty?” It’s just that DS opportunities and quality of life depend much more on how others perceive them and if others are willing to routinely lend a little commonsense help. They just need a catalyst; a little push forward or pull up ... frequently.

Generalizing about Damon and his lot: I believe he is a pretty average Down kid. Despite his age, I think of him as a youth most of the time because that’s how he acts and appears. Mentally he tests in a young child’s range of abilities in most areas. Most people unfamiliar with Down Syndrome see him as a young teenager. If asked, invariably they will guess his age at 12 to 14. He could pass as “12 or under” at the movies or a restaurant; assuming of course he’s well shaved! But don’t try it. He would sternly remind you, “I’m not a ‘child,’ I’m twenty-one!” Our expectations for Damon include a productive job and eventual supervised group living. When? “Someday.” There is a ten year group home “waiting list” in our area. Damon wants a job and to be independent too. He works hard daily to achieve these goals with a little guidance and help from others.


Routine: A “routine” is very beneficial for Damon. He has learned to:
Lay out his cloths the night before. This is helpful on several levels. One: No choices need be
made after his 6:15 a.m. alarm wake up to wash, dress, eat and get to the school bus on time. Two: Mom and Dad know and can approve on casual inspection (and substitution if need be) of what is being worn to school. Three: If Mom and Dad forget to inspect and something weird is worn ... Damon would say, “Hey, I laid it out last night!” (translated, read this -- ”That’s your problem.&rdquo Four: It is much faster getting dressed with no “looking for” cloths or finding a matching sock time required.

The “cloths layout” at the beds end on the floor pattern is; shirt, then pants, socks and shoes. This gives the impression of a “steam rolled kid” in the carpet. Often, even sun glasses and a ball cap folded to set up right, atop the shirt neck are offered. Damon has developed this layout into an art form. Don’t laugh. It works!

Dressing was a real chore for Damon for many years. All that finding and matching clothes, and putting them on, and long sleeves, not to mention the dreaded buttons and impossible shoe laces. It seemed to take ‘forever’ to get dressed. I remember occasionally, not that long ago, when Damon would be ‘dressed ready for school’ with underpants over long pants! After all his time and hard work to get dressed I hated to point out the error. His reaction? Darn ... I know better. Do I have to change it? Advice: Keep it simple. Do what works.

Calendars: Damon always knows by rote who’s’ birthday or what holiday is next but not necessarily the date. He knows this for his, mom, dad, brother, grandma & pa, and many relatives and friends birthdays. All important stuff for Damon. Calendars help him “see into the future” and keep track of activities.

Refrigerator note pads with dry marker notes of daily routine “to do’s” after school until mom, dad, or brother are home are a must. We use many of these incentives daily to keep Damon mentally and physically active and reading. He will check off each item as it is completed.
.
DAMON:
Put dishes away
Take out garbage
Vacuum Den
Be Happy
Call me at work

Alarms are essential and handy. Damon has got himself up to an alarm since about age twelve. He can set the alarm but still needs a little help setting the clocks hour/minute. He is very reliable. Example: Many “No tardies” and “No absences all year” awards from School. At high school “graduation” high he was one of only a few seniors to receive such recognition and he walked about a mile each way to and from home.

A one paragraph true short story: Two nights ago a thunderstorm reset all the house electric clocks. I forgot to correct Damon’s bedroom alarm clock. He went to bed routinely at about 9:15 p.m., then got up, dressed, and cheerfully came back downstairs where I was reading only two hours later, ready for breakfast at about 11:00 PM! Realizing my mistake I asked him what time it was. He looked at his digital wrist watch (hour & minute “hands” are still confusing) noting the “real” time ... 11:00! “I’m late for school!” He said as he went to the window and looked out noting it was dark and well ... he was really confused. “It’s 6:15 my room!” He insisted pointing up stairs. I briefly explained what happened and told him to go back to bed. “Oh ... no problem. [good] night. You fix clock. OK?” he said.

A routine with reminders, alarms, note pads, parents, teachers, friends, ... guiding, teaching, encouraging: All these are important supports Damon needs. These things persistently used together create a synergy that helps Damon be a responsible person. Advice: Be persistent.

DAMON’S “FIRSTS”:
A few of Damon’s “Firsts” tell allot about his child hood learning experience. Parents learn then too.

First DAY AT SCHOOL. I delayed leaving for work wanting to experience this with my wife and help Damon on the bus. According to school officials Damon was ‘an ideal candidate’ for the special education early start program. Only two years old, starting ‘public school;’ in a stroller, clipped on I. D., diaper bag, grinning happily as the bus driver-aid helped him up that “first big step.” He showed no fear or concern. Damon has always liked school very much.

First WORD he could “read,” not counting fast food logos and signs, was ”love.” We had a few dozen flash cards at about age six we would review while waiting for the bus. I can’t tell you why “love” was learned first. Yet, I’m not surprised. It even seems appropriate. If you’ve been “exposed” to a Down Syndrome child you probably know what I mean. Many DS people have some extra affinity to love and affection. A special warmth. You just have to be around Down kids or adults to ‘get it.’ It’s “A Down Thing.”

First SENTENCE Damon said without prompting. “I want ice-cream, please.” Think about this for a minute. I believe this reveals volumes about what inspires and how to positively motivate and teach a Down child. Probably any child. -- Prior to speaking Damon would simply point at the freezer side of the refrigerator when he wanted ice-cream. Then later learned to say. “I-queem.” After that “I-queem prease” Later still “Ice-cream please.” Finally...” A full four word sentence! Over how long? I’m estimating here. Three or four years perhaps. That’s allot of ice-cream cups. Let’s calculate. Say four years at roughly two hundred fifty times per year is one thousand repetitions. It may take Damon a long time on many things. But like Ted predicted ... ‘He’ll get there.”
Advice: Be Patient. Repetition is critical. Don’t ever give up on your kid. Ever…

First DANCE with a real live girl; was the seasons’ first dance the first year he attended middle school. I walked him into the building. All policemen are “Damon’s friends” so, at the gym entry door he was really impressed with the uniformed policewoman chaperone standing there. I watched for a spell. Damon and another special ed. girl were among the first ones on the floor to dance! Only a hand full of the couples out of the two or three hundred regular kids danced. The vast majority were “just hungin’ out.” I’d never seen Damon slow-dance with a girl before. I left the gym misty eyed. -- Returning later to pick Damon up, I stood next to a teacher and proudly pointed out my son, noting it was the first time I’d seen him dance “like that.” My voice cracked a little. I was getting choked-up again but tried not to show it. The teacher said. “I think Damon and Jessica danced every dance ... together. That’s her mother over there,” She pointed discretely at few adults nearby. I looked but didn’t know which mom. The teacher nodded in their direction saying, “The one with the runny mascara eye liner.”

Later that same middle school year Damon danced with “That Police Lady” too.
IT’S ABOUT “LEARNING”
Language; is obviously essential. Maybe not so obvious to us lay people, until some slow, likely very slow, learning is involved. Most of us take learning language for granted. When he first started to school Damon couldn’t speak a word other than ‘Mama’ and ‘Daddy.’ I was quite apprehensive about Damon’s “pre-school” teachers recommending, demanding really, that he be taught hand sign language starting out ... at about two years old. I though that if he learned to “sign” he would be less likely to ever speak. I was wrong. Gestures and signs are much easier for Down kids to learn than spoken language. Frustration drops and genuine communication begins and grows. Example: Damon couldn’t say “potty or toilet” but easily learned to sign a “T” when he needed to “go.” All the kids learned to sign. Parents too. As the children grew they were naturally drawn to a more efficient means of communication, namely, speech. Damon used to “sign” in his sleep.

Later the phone is helpful as a learning tool. Most kids love to talk on the phone. Signing doesn’t help here so they’re forced to speak more clearly. Auto Dial: Initially gets out-calls easily.

By the way, you know those unsolicited computer and pesky sales phone calls, often during dinner? They became “Damon’s calls” years ago. His specialty! “D-a-m-o-n ... Phone for you.” He would listen patiently and talk to them happily until they hung up! We actually looked foreword to getting those calls for a while and still do this occasionally. Obviously, Damon has no Credit Card access.

Reading: Damon learned some reading at school. But, without a great deal of home help, I don’t think he would read as much today. The tremendous advantage at home is “time appropriate learning”...not as available in school. Besides, Damon’s teachers had their hands full even with very capable teachers aids and only six or eight students per class. The one on one training it takes to teach Damon reading was asking too much of his school teachers. Learning when it’s important to the child creates break through progress. Examples: Again, food is a great incentive. At the grocer.... Their favorite food is not going in the cart until they at least look at the word as it is read aloud. Next they help you find their favorite foods. Followed progressively to sight recognition and or phonics and so on. It can be and should be mostly fun or interesting for them. “Damon, get the news paper and help me find the movie you want to see.” At a restaurant -- “You find what you want to eat. On the road -- Is this our turn off to ...? And of course -- Books. But there are so many words there. Just thinking about trying to read a book used to overwhelm Damon. Now occasionally he will get one out and try by himself. Simply reading anything out loud helps. Damon still gets his letters mixed up sometimes. He routinely leaves out a few letters if asked to recite the alphabet and still can’t do it with out “singing it.” Hooked on Phonics or The Phonics Game would probably help him. This summer maybe. Incidentally, some of Damon’s peers are great readers.

If I listed my personal accomplishments in life in and order of importance or satisfaction ... teaching Damon to read would be high on the list. It’s been very rewarding helping him learn precisely because reading is harder for him than most of his buddies. Damon is beginning to understand how important reading is to him. It gives him a power he likes. But reading is abstract and remains just plan hard for him. He continues to work at it and learn ... with help ... daily ... slowly.

REPETITION: Videos. We must have a hundred movies. I believe they have been very beneficial to Damon. He truly “studies” them. Actively. He repeats words, knows the actors, asks us questions, trys to read the titles and credits. Tom Cruise is his favorite actor. Recently I ask Damon to tell me some of Cruises movies. Within a few minutes he recalled nine pictures. Later he “helped me” find all Toms movies via the Internet. Damon is enjoying more and more computer time. A computer can be fun and is infinitely patient with him. I believe computers may play a big roll in his future learning process.

DAMON’S FUTURE
Yes, we’ve given it much thought. No, we don’t have the answers. I expect to be caring for my son the rest of my life. Beyond that? Winning the Lottery would help. Money that we don’t have, would provide him some security in trust and help our retirement plans greatly. We’re not just talking money here of course. It’s complex. Damon needs what money can’t really buy: Someone who cares to watch over him. A kind of earthly guardian angle. A protector. We’re concerned. He doesn’t have a clue. Which is better? I don’t know.

I do know how fragile the environment we parents offer is. Therefore, best train him to be as self sufficient as possible. He will always need guidance and protection. The vision of that old Washington State run institution of the mid 1960’s haunts me. Despite the joy he brings, the burden Damon could place on others, his brother, our relatives or friends ... troubles me. We started working up our “Will” years ago and got stuck on the “What to do for Damon” part. I know it’s wrong not to have a proper Will, but this project remains unfinished. Advice: Have a proper Will.

REALITY TOO
What can Damon do or be expected to do?
What’s important is that nearly every week there is something we notice he can do, that previously we thought he wouldn’t do or shouldn’t be expected of him. I am often reminded that his possibilities are limited by what I think, even though I believe I’m pretty open minded and optimistic. Just like with any youngster, setting him up to learn by winning, while still allowing for failure, is important.

Damon can simply ‘Live a good life.’ Like Ted said. Damon will “take the road less traveled.” But he’ll get there. (I think he is “there” already) Sure, it will be tough some times, but it can be beautiful. He can have a great time! Isn’t that what life is supposed to be about anyway?

What have I learned?

Five “Be’s” in the journey of life:
1. Be Positive: Reasons (interestingly, both positive and negative reasons) are too numerous to mention.
2. Be Patient: With Down kids anything else is counterproductive.
3. Be Persistent: Repetition. Do it again ... starting at 1. Be -- above.
4. Be Thankful: Gratitude. My grandfather lived ninety-four years. He taught me. “Everyday, above ground, is a good day.” Enough said.
5. Be Happy: Happiness and Joy. Damon is teaching me to just “Be happy.”

I have learned I am a slow learner. Truthfully, I knew this well before Damon was born. I first “learned” this by hearing it repeatedly from adults many times after skipping kindergarten but repeating first grade. So Damon and I share this slowness “trait.”

I have this theory about “Slow learners and Fast learners.” The ‘smart people’ (those quick to learn, etc.) often have a distinct disadvantage in ‘dealing with helping us slow learners.’ They can’t empathize as easily. They tend to get frustrated much too fast. They often have so-called ‘higher’ goals and want to move ‘faster.’ They don’t allow us enough time and repetition. So regarding us slow learners, many fast learners just don’t ‘get it’ and sometimes deal with us crudely.

Being a slow learner, I can honestly admit that I am very envious of the fast learner smart persons ‘ability’ sometimes. More often though I feel sorry for them. The kind of sorry that makes me smile. Why? Because after lots of repetitions I have learned the “Five Be’s.” I have observed that many of them have not learned the “Five Be’s.” Each repetition with a different ‘spin;’ positively, patiently, persistently, thankfully, and happily; how ever many times it takes.

I suspect that’s how Damon sees and deals with his world. “How ever many times it takes.” I know that Damon and I both like to watch videos tapes ... repeatedly. And many ‘good’ video movies can be on ‘auto-pilot’ to fulfill three of the five be’s. You see, inanimate objects can also be “Positive, Patient, and Persistent.” Only people can be Thankful and Happy though.

I know Damon has diligently watched some good movies several dozen times! You see ... there they are ... both Damon and the Video ... Positive, Patient, Persistent. I am thankful to be able to enjoy watching Damon delight in a movie and anticipate his favorite parts. Again, there they are ... Gratitude and Happiness. Once I noticed Damon watching me view one of my favorite moves for the umpteenth time. He smiled simply because I was smiling. I’m sure you may have already guessed which movie we were viewing. “It’s a Wonderful Life.”

Final Advice: I learned to make this choice from my very special son Damon. “Don’t Worry. Be Happy.”