Spirit Magazine - Frankly Speaking

Fall 2008 Vol 7 / No. 1

Yedei Chesed is a contract agency certified by the New York State Office of Mental Retardation and Developmental Disabilities.

by Tziri Frank

Just for the record, I am no dummy. Not that you should go back and check my high school transcripts, which do not accurately reflect my genius. Nor should you go by my glaring inability to recite obscure meforshim memorized for distant hazy Chumash classes. No, my particular form of intelligence is the kind that allows me to observe and record vital pieces of trivia that can be used to fill this column.

So, I have some particular intelligent observations and advice to impart to you. If ever you find yourself with hours to spare that do not need to be filled up with laundry, carpool, or hunting for bargains at your local Wal-mart, take the time to meander through the nearest bookstore. Once you get past the latest Harry Potter paraphernalia that magically disappears off the shelves, you will most likely stumble across the most useful section of the establishment, the aisle devoted to nothing but How to Books for Dummies.

When the first issue of How to Turn On Your Personal Computer for Dummies was published, I was a bit taken aback. Surely no self-respecting ignoramus like myself would spend eighteen dollars to publicly proclaim that he or she is a dummy. It seemed like a far more intelligent option to blunder my way through the land of cyber sphere. But, as time went on, the idea that someone somewhere out there was sitting hunched over a computer screen writing useful information for badly informed individuals like myself made me feel all warm and fuzzy. Which is probably why I now own an impressive collection of How to Books for Dummies. And just because I like to be caring and helpful, I will tell you that there are some new and exciting publications that are sure to be on the Best Seller List for Dummies. Like, Baby and Toddler Sleep Solutions for Dummies (which I wish I had been smart enough to write), Cooking for Crowds for Dummies (which any self-respecting Bala Busta who has ever made supper should have been smart enough to write) Chicago for Dummies (which only needs one sentence – The Traffic is Insane and You Will Not Get To Wherever It is That You Are Going On Time, so don’t bother traveling there!) and Beekeeping for Dummies (which I could not leave out, this one begs to be noticed).

But alas, the one How To Book that should be written, and to the best of my limited knowledge has not yet been printed, is a book on the correct way to speak to mentally and physically handicapped individuals, and the families that belong to them. Because we belong to a whole different universe from the average “normal” person, and like any elite society we come with our own set of rules, behaviors, and stylish forms of transportation. We also come with our own special language. The Special Needs Vocabulary might resemble the English language in certain words and sounds, but often the meaning is very different from the definitions that Microsoft Words and Webster’s English Dictionary so thoughtfully provide. And so from the safety of my laptop, as I attempt to navigate through the parking lot that is Chicago, I will attempt to bridge the gap, with a First Edition of Special Needs Speak for Dummies. This is, of course, not to imply that anyone reading this is anything other than completely sage and competent, I am merely showing the sincerest form of flattery by copying the style of the leading number one best seller for the last decade!

“Special Needs Speak for Dummies”

Special Needs Terminology	What it Really Means	A More Accurate Definition
Advocate	Supporter, backer, promoter, believer, activist, campaigner, sponsor	Any /parent/person who will fight the system, navigate through endless rolls of red tape, and brave their way through any adversity to get their special needs child what he/she needs and deserves. This can range from experimental therapies to those new fangled Purim character lollipops and anything in between.
Blind	The inability to use the physical sense of sight.	The inability to truly perceive the pure goodness in the neshoma of a special needs child. The failure to recognize the best that humanity has to offer when you are on the receiving end of all the chesed that people offer to the special needs community. What you need to be to ignore the insensitive stares of strangers who stare as you take your special needs child and their wheelchair onto a roller skating rink, or shopping for groceries.
Brace	Support, prop, bracket, buttress	What you do before you take a deep breath to face society, when all you really want to do is crawl into the nearest closet to cry and eat those hidden chocolates.
Challenge	Test, trial, contest, experiment	A way of life when caring for a special needs child. A catchall phrase to explain the feelings of always striving to achieve the impossible. The reason anyone going through the trials and tribulations of life with a handicapped person becomes stronger and better.
Coordination	Dexterity, skill, adroitness, bringing together, management, organization, synchronization	Juggling endless medical appointments with evaluations, therapies, hospitalizations, and oh yes, catching that must have weekly One Day Sale at Macy’s.
“Dare to be Different”	A quotable quote used to explain why Bais Yaakov girls insist on all buying and wearing the exact same shoes, hair accessories and knapsacks.	A mantra that must be recited often by those involved in the world of the mentally and physically handicapped to strengthen the feelings of I am different from everyone around me, and that is something to be admired. Also good to remember at family gatherings when you show up with your special needs child who is wearing two different colored shoes and their oldest pair of sweats to complement their oddly colored brace and/or wheelchair
Deaf	The inability to use the physical sense of hearing.	The ability to ignore those insensitive comments and negative reports, and only perceive the sounds of the sentences we want to hear which always begin with, “I have great news for you….”
Developmental Delay	To progress at a slower rate than normal.	Words we need to see on those endless forms to receive the benefits that we pay high taxes to collect. A professional title that allows the owner and those connected to join an elite society where you can get invited to Weekend Retreats, respite care, and really cool Chol Hamoed trips.
Disabled	Unable to physically perform day-to-day activities the same way as the “normal” people.	The magical word that allows you to go to the head of the line and be seated first at airports, concerts, and amusement parks. It also gives you the best parking spaces at the mall.
Doctor	An individual who spent many thousands of dollars and an awful lot of years in school and never learned something as basic bedside manners.	Your new best friend, the person you will spend a lot of time with, the one whose telephone number you never have to look up on your cell phone contact list. Also, the individual you will share your innermost secrets, your hopes and dreams, and most of all, your fears and worries as you navigate the strange and unfamiliar world of the special needs population. It is advisable to never forget their birthdays, favorite kind of chocolate, and whether or not they are allergic to plants.
EKG	Electrocardiogram	A really important test that you must be absolutely starving to be allowed to take. You will also resemble some space alien from the future with electrodes sticking to gobs of goo all over your scalp and attached to a machine that will spit our reams and reams of paper with odd looking squiggles all over it.
Evaluation	Assessment, appraisement, weighing up, pricing, estimation, calculation	The momentous meeting where your life and the life of the special needs child you care for will be decided based on the whims of the person who may or many not have had a good cup of coffee that morning. Also, they base most of their decision on first impressions using the tried and proven technique of physical appearances, so I highly recommend that you read “Mirror, Mirror on the Wall, Who’s the Biggest Neb of All” by Tziri Frank in the last edition of Spirit! Magazine to prepare yourself if you ever find yourself facing one of these life-altering appointments.
“Hmmmm…”	I have no idea, and I don’t know how to tell you that.	I really have absolutely no knowledge and cannot possibly offer you any advice or information about whatever it is we are discussing, and yet I do not want to come straight out and tell you that, so I am attempting to sound intelligent and wise without actually saying anything at all. As soon as you leave I plan to go online to research the information so that I can sound intelligent next time we meet, unless lunch arrives and I get sidetracked.
Hospital	Sanitarium, infirmary, rest home, hospice, sickbay, the place to go and “get” a baby, according to most five year olds.	A home away from home where a sick child learns the importance of roommates, tying hospital gowns tightly, and eating supper at 4:30 in the afternoon.
IEP	Individual Education Program	Intensive Evaluation Powwows where good food is served in abundance, and possible plans of action are discussed which will allow the endless continuation of these said meetings and the edible benefits they provide
Milestone	Landmark, highlight, high point, sign, signpost	Appreciating the small things in life that other people take for granted by setting a goal that is just slightly out of reach and then reaping endless joy when it is achieved.
MR/DD	Mentally Retarded, Developmentally Delayed	A lot of meaningless letters that are supposed to define a group of people. Mr. Doctor Dentist?
MRI	Mental R Imaging????	May Run Into years for a test that takes no less than seven months to schedule if you live in a place like Canada, where they only have two machines in the city of Montreal.
“Oh, my, you’re just wonderful!”	You cope nicely with a difficult situation.	The individual speaking to you is really grateful that they are not you. They are also quietly breathing a sigh of relief that they are guilty of not pulling those labels off new mattresses or wait the required thirty minutes before going back into the pool after eating, and therefore will never fall into the wonderful category and so will not be tested with the trials and tribulations that go along with caring for a special needs child.
OT	Occupational Therapist	The person who went to school for a really long time who will tirelessly work to achieve success in areas related to jobs requiring tremendous strength and physical labor, like balancing precariously on a large ball while trying to get a cat out of the tree.
PHD	Official Title for Doctor	Pay Him Dollars to recompense him for the money he laid out to spend years studying so that he could tell you that he doesn’t know how to help you.
PT	Physical Therapist	The person who went to school for a really long time who will tirelessly work to achieve success in areas requiring fine motor coordination, like sticking toothpicks into melon balls.
Slow	Sluggish, unhurried, measured, deliberate, leisurely, dawdling	An individual who moves in a deliberately unhurried and leisurely dawdling manner so as to enjoy and appreciate all the best that life has to offer.
Specialist	Authority, consultant, expert, high quality, professional, whiz,	A person who spent extra time in school to get paid top dollar for working as little as possible, and can always be found on the golf course.
Special Needs	Particular wants, individual wishes, out of the ordinary requirements, unique requests, distinctive desires	A politically correct way of referring to the mentally and physically handicapped population, which allows the speaker to then say whatever, they want without fear of sounding prejudiced, biased, or generally stupid.
Spirit	Strength, courage, character, guts, will, fortitude, chutzpah, determination, landmark, highlight.	A publication that has the fortitude and chutzpah, guts and will to find the determination to provide landmark literature that becomes a highlight for people of strength and courage to gather spirit from.

This is not the end. It is only the beginning…

Well, actually Chapter Two will follow. I’m just waiting for my local bookstore to sell the latest edition of How to Write a Humorous Article for Dummies.

You may comment on this article at the discussion board at www.spiritmag.org.

Tziri Frank is a proud mother of five beautiful children. She uses her experience with her own special child to inspire others in a thought provoking and often entertaining way.