THE SMS
ADVANTAGE
by Laurie Bellet (Walnut Creek, CA)
CONTENTS
- Forward and Dedication
- On The Road
- The Life of The Party
- To Market, To Market
- All In The Family
- Out of The Mouth of.....
- School Days
- Around Town
- There's No Place Like Home
- On A Personal Note......
FORWARD
Smith Magenis Syndrome is a chromosomal disorder. It results in a characteristic facial appearance, developmental delay, profound sleep disorder, outrageous behaviors and areas of quixotic strengths.
The SMS Advantage is not intended to trivialize the distress experienced by the families of children diagnosed with SMS. All the contributors to this book have suffered exhaustion from sleepless nights and embarrassment during public tantrums. They are parents who have struggled to balance the seemingly insurmountable challenges posed by their children's conflicting needs and who have mourned the loss of marital intimacy. Yet, these parents have also taken note of the truly productive contributions their SMS children make to their households and communities. They have grown to recognize and honor The SMS Advantage.
DEDICATION
This article is dedicated to Ariel, Craig, Shavorn, Alex and Emily, and to their parents. They have shed many tears and enjoyed countless SMileS.
ON THE ROAD...
Getting
ready to head out the door but can't find your car keys? Your child with SMS will,
more than likely, be successful in hunting them down for you. Have freeway changes left you muddled? Not to worry. You can rely on your SMS navigator to remind you which lane you need to occupy to get off at whatever exit the construction detours mandate.
Have you become lax about remembering to use your turn signal? Well, this is one violation you may never risk again. Your passenger with SMS might just remind of your lapse at every turn.
Doubtless, by now you have noticed just how much gasoline you burn shuttling from meeting to appointment. If you find trips to the pump tedious, take heart, in time your SMService attendant will be delighted to "fill 'er up" for you!
(Do remember- 2 hands on the wheel at all times. Failure to comply may make you vulnerable to panic...SMStyle!)
The
SMS guest (along with the family who must provide chauffeuring) should be at
the top of every savvy hostess’ invitation list.
The guest with Smith-Magenis Syndrome provides a wealth of fascinating observations
and entertaining anecdotes. (In all candor, they need not be present for the
tales to amuse the crowd)
The diner with Smith-Magenis Syndrome never hesitates to be the first to start
the buffet line. They may indeed be the first to spill, creating a comfort zone
for those who follow. And, at the dessert table, the SMSweet tooth, sets new
parameters for the volume of goodies to be set on a small plate in record time!
The *DJ need never look far for exuberant participation. Whether for Limbo,
Twister, or the Hokey Pokey, the SMSwinger is ready and eager.
Do you remember those anguished middle school dances when you yearned for a
partner? As an SMS parent, your dance card will never be empty again!
Should a party be dull, despite the above SMS efforts, your excuse to depart
can always be, “We’re sorry to have to leave but, look who is sleepy!”
(*You will likely know the names of each musician by party’s end!)
TO
MARKET, TO MARKET
Food
is a high priority and, especially in our homes, in need of frequent replenishment,
so the supermarket can become an occupational and recreational destination.
The parent of the Smith-Magenis shopper never has to push their family's shopping
cart. (Precautionary note - avoid walking in front of a shopping cart which
is SMSteered!)
Your rate of impulse buying will decline without much effort on your part. (Unless,
of course, you relish the thought of designer ice-cream being left to melt in
your living room and delight in finding candy wrappers in your child's pillowcase.)
As your tendency to buy treats lessens you will notice the positive effects
to your waistline and cholesterol level.
The quandary over which checkout lane to join need not perplex you. The SMShopper
will determine which lane to enter, relieving you of your dilemma.
Customers with SMS unload shopping carts eagerly and independently. This leaves
you free to engage other shoppers in pleasant conversation or enjoy a periodical.
(A heads up!: it is prudent to periodically scan the conveyer belt for items,
which have mysteriously become part of your order.)
ALL
IN THE FAMILY
The
family endowed with a Smith-Magenis member need not fear. If the power fails
at 3 a.m. or, if the alarm clock breaks, all can rest assured. They will be
roused by dawn.
The harried mother of a Smith-Magenis teen could be tempted to leave the house
in a disheveled state were it not for the persistent reminders to apply make-up
and choose earrings.
It is sad, but true, that there are fathers who will occasionally try to sneak
a day without shaving. Good News! The SMShaving monitor will not let that happen.
The SMSqueezed family pet is the best-fed animal in the county.
The members of the Smith-Magenis family will have a full array of band-aids
from which to choose. They can select on the basis of wound size, body part,
day of the week, cartoon preference or fashion favorite.
The SMS guest (along with the family who must provide chauffeuring) should be
at the top of every savvy hostess' invitation list.
Our SMStars provide a wealth of fascinating observations and entertaining anecdotes.
(In all candor, they need not be present for the tales to amuse the crowd)
OUT
OF THE MOUTHS OF……
The
voice of the individual with Smith-Magenis Syndrome is classic and distinct.
This is a bonus feature because:
In stores and malls throughout the nation, many parents are wandering the aisles,
fruitlessly calling for their children. The SMS parent, on the other hand, need
only listen for the SMSound (this is usually requires little or no effort) and
follow the trail to "the voice".
When attending a choir or chorus production the families of the SMSinger know
exactly which voice is issuing from their performer! (Good News! The SMS voice
comes with an automatic "off" mechanism. Too much voice, the nodules
swell and silence descends!)
SCHOOL
DAYS
Although
many teachers do not recognize their good fortune, the teacher who has an SMStudent
is truly blessed. Here are but a few of the advantages:
The SMSearcher can find any item a needy teacher requires whether within the
classroom, in the school office or in another teacher's classroom!
Feel free to do away with that pesky Lost and Found Box. The class SMSleuth
can identify each and every item.
The SMS volunteer is the first to offer assistance of every kind.
The student with SMS always has an answer (however tangential). Once the SMStudent
has responded, all others are reassured that their answers will not be the most
outlandish.
This fortunate teacher never has to make another photocopy. The SMSecretary
is eager to fulfill all requisitions. (Single sided, black and white copies
only. Please do not request anything to be collated or stapled).
Rules are meant to be upheld and, when the SMSentry yells "No running in
the halls!" everyone can hear the warning. (*Be advised that there will
likely be little or no discrimination between teachers, students or administrators
when applying the rules.)
AROUND
TOWN
Individuals
with Smith-Magenis Syndrome thrive on outings. In time, their companionship
can prove to be indispensable.
With an SMSocialite in tow, you will frequently run into people you know (and
many you don't!). Do not concern yourself with remembering who is who. The proper
name will be supplied for each encounter.
You will be comfortable throughout the county because you know the location
of all the restrooms.
Does a favorite color dominate your life? You are in luck. Just head for the
parking structure where the levels are designated by color. Is it a letter or
number that is currently perseverated? Well then, your parking space is pre-destined.
(Warning! Parents who go out alone and insist on parking in an independent location
may suffer from Parking Lot Confusion upon attempting to return to their vehicles.)
When asked at the cash wrap: "And who was helping you today?", the
SMShopper will be right there with the correct response.
Whether you are in an elevator or at a crosswalk, relax! All buttons will be
pushed for you. (The operative word here is "all".)
THERE'S
NO PLACE LIKE HOME
"Will
somebody get the phone?" These words will no longer ring in your house.
(Telemarketers Beware! Our phones are promptly answered with an exuberant SMShout.)
It is the post office worker's job to file the mail by zip code. It is the postal
carrier's job to deliver by street address. It is the job of the SMSorter to
make a mail pile for each recipient in the family.
A lock on the kitchen door proves to be a wonderful deterrent for those of us
whose waistlines really can do without a midnight raid on the refrigerator.
Holidays (any kind) and birthdays (anyone's) always have that SMSparkle.
A family calendar is essential. Your SMScheduler will see that it is adhered
to faithfully.
ON
A PERSONAL NOTE....
We receive the diagnosis of Smith-Magenis syndrome at differing points in our
lives. For some, the diagnosis comes late and brings relief from uncertainty
and misunderstanding. For an increasing number of families, the diagnosis comes
very early, crushing dreams and aspirations.
In the early years of desperation and tumult, it is difficult to anticipate
days of pleasure and satisfaction or to conceive of any of the traits associated
with SMS as being at all advantageous. As I compiled this book, memories of
past years flooded and frequently overwhelmed me but two distinct occasions
stood out from the rest.
In 1990, we were settling into new community and my sons (then 8 and 10) were
trying to find their place in an unfamiliar social realm. At a scout meeting,
Ariel (who at 5 would only wear blue dresses) had, unbeknownst to us, shed her
diaper. There, in front of 75 cub scouts, she engaged in her newest achievement
- slow deliberate somersaults.
The second, and overwhelmingly painful memory, recalls a time in 1997 when,
in the depths of depression, I felt choked with unrelenting guilt. I had, after
all, started my family on this road to "special needs" adoption and
thereby (however unwittingly) plunged us all into what was then, the chaotic
whirlwind of our SMS family life.
It is every parent's nature to be concerned about their children's futures,
focusing perhaps on the "terrible twos", the "frightful fours"
or the specter of the teen years. Looking into the future helps prepare us to
tackle whatever comes our way. But, taking on the burden of worries which may
or may not come to be, drains us of energy and limits our ability to bask in
the joys of the present.
You will hear many sagas, read many articles and receive numerous reports. Remember,
though, if your thoughts wander towards despair that, incredible though it may
seem, your family's future undoubtedly also will enjoy The SMS Advantage.
Laurie
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