by Laurie Bellet (Walnut Creek, CA)

CONTENTS


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

Girl

Boy

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...

CarGetting 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 LIFE OF THE PARTY...

PartyThe 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

MarketFood 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

WomanThe 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...

SingersThe 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

SchoolAlthough 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

TownIndividuals 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

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