Equine Therapy - Miriam foundation · 2016-12-15 · EQUINE THERAPY gives new meaning to horseplay...

Vol. 1 No. 4

Summer 2006

Equine Therapy Equine Therapy Giving new meaning to horseplay

EF andVoicePrint Canada

EF andVoicePrint Canada An exciting new alliance

Yoga-Based Therapy

Is ADHD Over-Diagnosed?

In Focus

What is so Fragile about Fragile X Syndrome?

Yoga-Based Therapy Holistic exercise offers multiple benefits

Is ADHD Over-Diagnosed? An in-depth look at Attention Deficit Hyperactivity Disorder

In Focus The “special needs” of exceptional siblings

What is so Fragile about Fragile X Syndrome? Common features and significant differences between autism and Fragile X Syndrome

• Summer 2006 3EXCEPTIONALFAMILY

Over the past year, EF has shone the spotlight onthree exceptional individuals who have soared

above overwhelming challenges and achieved more in their relatively young adult lives than many“mainstream” people ever accomplish in a lifetime:Andrea Bocelli, Marlee Matlin and Sam Sullivan are all remarkable people who truly personify the word “Inspiration.”

On a personal level, however, none have moved me asmuch as Ryan Knighton, the star of this issue’s Inspiration feature. Knighton isthe author of Cockeyed, a captivating new memoir that delves into his childhoodand fifteen-year progressive loss of vision as a consequence of a condition calledretinitis pigmentosa. Knighton is also a published poet and co-founder of amagazine, a lecturer, a college teacher, a producer and performer of radiomonologues and documentaries, a former editor and a freelance writer. A frequentcontributor to The Globe and Mail, Knighton’s pieces are succinct, articulate,witty and entertaining. In short, they are masterful works of art.

While all of our Inspiration personalities are each remarkable in their own right,Knighton’s accomplishments resonate with me particularly because of our mutualinterest in journalism and writing. Reading and writing form the essence of myown job as a writer and editor. Without these capabilities, I cannot imagine beingable to perform my job as a journalist successfully. Which is why I view Knighton’sability to produce such brilliant pieces without writing and visually-revising themas such a spectacular feat.

A 2001 article in Advance News (Blind Teacher Sees Poetic Success) describedKnighton as a person who does not want to be seen as a ‘triumph story’ andhighlighted his discomfort around the fact that “people with handicaps are oftenportrayed as being heroic for simply achieving goals that are considered normalfor people without disabilities.”

While Knighton’s assertion is extremely valid, the sheer magnitude of hisaccomplishments relative to those of many “normal” people already renders himoutstanding, blindness aside. When one considers then, that Knighton hasrealized multiple dreams in spite of his disability, his accomplishments become allthe more laudable.

Knighton is a man, who, by all standards, is exceptional. He is a man who hastaken vision to a whole new level; for Knighton, the ability to see stems not fromhis eyes but from his belief in himself and his own potential. This is what makesKnighton a hero.

This issue of EF marks the fourth and final installment of Volume One. We hopeyou derived as much pleasure reading our first four issues, as we did in presentingthem! Stay tuned for Volume Two this Fall, which promises to be every bit asexciting, informative and of course, inspirational.

Have a wonderful summer!

Seeing Is Believing

PublisherMiriam Foundation

EditorAviva Engel

Managing EditorWarren Greenstone

ContributorsMike Cohen, Dr. Kim Cornish,

John Dowson,Aviva Engel,Veeta Engel, Dr. Harriet Greenstone,

Dr. Richard Haber,Thomas Henderson,Emma Legault, Michael Lifshitz, Lisa Xing

Graphic DesignPonctuation Grafix

www.ponctuation.com

TranslationSuzanne Hamelin

Editorial BoardWarren Greenstone, Lenny Lazarus,

Sandy Rossner,Veeta Engel,Dr. Harriet Greenstone,Arlene Segal,

Warren Perley

Exceptional Family is an initiative of the Miriam Foundation.

For all inquiries please contact:

Tel: (514) 345-0210 ext.182Fax: (514) 345-1619

[email protected]

Vo l . 1 No. 4 Summer 2006

FROM THE EDITOR

Aviva Engel

The opinions expressed herein are those of the contributors and advertisers and do notnecessarily reflect those of EF or the MiriamFoundation. Copyright © 2005, Exceptional Family.All rights reserved.Any reproduction in whole orin part without written permission is prohibited.

ISSN 1715-4901Legal deposit, Library and Archives Canada, 2005Legal deposit, Bibliothèque nationale du Québec, 2005

Miriam Foundation8160 Royden Road

Town of Mount Royal, QuebecH4P 2T2

Cover Story5 Equine Therapy Gives

New Meaning to Horseplayby AVIVA ENGEL

The wide-ranging benefits of therapeutic horseback riding

Features9 Is ADHD Over-Diagnosed?

by Dr. RICHARD HABER

An in-depth look at Attention DeficitHyperactivity Disorder

14 Enhancing the Intelligence of Our Childrenby AVIVA ENGEL

Insights from Rafi Feuerstein,Vice Chairmanof the International Center for the Enhancement of Learning Potential

22 Yoga-Based Therapy for ExceptionalChildren and Adolescents by THOMAS HENDERSON

Holistic exercise offers multiple benefits

27 Exceptional Family Now Availablein Audio Formatby LISA XING

An exciting new alliance between EF and VoicePrint Canada

31 The Ties That Bindby EMMA LEGAULT

An NFB film that resonates with exceptional families

35 What is so Fragile About Fragile X Syndrome?by Dr. KIM CORNISH

Common features and significant differencesbetween autism and Fragile X syndrome

Features – continued

39 Securing Your Exceptional Child’sFinancial Futureby JOHN DOWSON

The second Life Plan “Essential”

41 An Introduction to the Hidden Curriculumby AVIVA ENGEL

Insights from renowned clinician and author Dr. Brenda Smith Myles

Columns12 In Focus

by HARRIET GREENSTONE, Ph. D., OPQ

The “special needs” of exceptional siblings

18 Adapted Travelby MIKE COHEN

An exceptional Big Apple experience

29 Ask the Expertby VEETA ENGEL, MSW, MFT

Helping an adolescent with sensory integration dysfunction manage his grooming routine

45 Sure I Canby MICHAEL LIFSHITZ

What’s In a Word? Fair Portrayal vs. Political Correctness

In Every Issue 3 From the Editor

by AVIVA ENGEL

Seeing is Believing

25 Exceptional NewsNews briefs highlighting exceptional issues

33 Currents and ClassicsA review of Kimberley Voss’s Teaching By Design and L.A. Goal’s Disabled Fables

38 Inspiration Ryan Knighton: Jack of all trades

46 InsightsA compilation of upcoming events of interest

4 • Summer 2006EXCEPTIONAL

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ON THE COVERYvonne Tannahill, 12,takes a break fromequine therapy to feed Bijoux, a 17-year-old pony.

by AVIVA ENGEL

Physiotherapy. Occupational ther-apy. Speech therapy. Behavior

therapy. If you’re a parent of anexceptional child, chances are yourson or daughter receives at least oneof these rehabilitative treatments.Recently, a rather unique kind oftherapy has been gaining popularityamong exceptional families who arediscovering its wide-ranging bene-fits. It’s called equine therapy, andproponents of this emerging fieldtout its wide-ranging benefits.

Equine therapy, or therapeutic ridingas it is more commonly known, is atreatment in which horses are usedas a medium to enhance clients’physical, cognitive, emotional andsocial strengths and abilities. Whileit is not recommended as a substitutefor any one therapy in particular, itshares many of the conventional ones’same advantages. Besides equinetherapy’s allure as an outdoor activity,which is novel for those typicallytreated in clinical settings, its adapt-ability to individual needs and objec-tives makes it accessible to a broadrange of people with disabilities.These include Down syndrome,

autism, Rett syndrome1, ADHD,Prader Willi syndrome2, develop-mental delays, visual impairments,cerebral palsy, spina bifida, neuro-

muscular disor-ders and disabi-lities related tobrain or spinalcord injuries anda m p u t a t i o n s .Horseback rid-ing’s generalpopularity as arecreational pas-time makes equinetherapy all the more appealingas an inclusionary activity.

Physical, cognitive andemotional benefitsAnyone who’s ever ridden a horseknows that good coordination,balance, and strong back and trunkmuscles are crucial to any successfulriding experience. In addition toexercising and toning muscles in a manner that closely simulateswalking, equine therapy stimulatesriders’ circulatory systems, increasestheir flexibility and improves theirpostures, balance and hand-eyecoordination. It also reduces musclespasticity.

Getting a horse to respond tocommands also requires good

1 Rett syndrome is a genetic disorder marked by progressive neurological deterioration, seizures and cognitive impairment that principallyaffects females.

2 Prader Willi syndrome is a genetic syndrome characterized by short stature, developmental delays and mild to moderate mental retardation,excessive eating and obesity, and hypogonadism.


E Q U I N E T H E R A P Ygives new meaning

to horseplay

Yvonne Tannahill, 12, rides Bijoux,accompanied by her mother Carole Ness, who is a Side Walker

Besides equine therapy’s

allure as an outdoor

activity, its adaptability

to individual needs

and objectives makes

it accessible to a broad

range of people

with disabilities.

communication skills and concen-tration. For riders with cognitivedeficits, equine therapy encourageslanguage development, increasesattention span and aids sequentialand cognitive thinking. Finally, itenhances self-esteem, encour-ages independence andsocial-skill buildingand fosters friend-ships between ridersand their instructorsand horses.

“Horses are extremelysensitive to all of ourmovements and communica-tion methods, whether verbal ornon-verbal.” said Debbie Wilson,Program Coordinator of the LuckyHarvest Therapeutic Riding Centerin Herdman, Quebec. “Childrenwho have difficulty with concentra-tion can be taught how to maketheir horse walk, or stop or turn. Inorder to successfully execute theseactions, riders first have to grasp thepractical part of the lesson, focustheir attention, coordinate theirown bodies to move the animal anduse language to stop it. It’s veryrewarding for children to maketheir animal stop by themselves.”

An opportunityfor respite As the first certi-

fied riding centerin Quebec, LuckyHarvest is locatedon a rural farmthat spans three

acres of landadjoined byanother 29

acres of trailsin the woods.

For the manyparents who drive

their children anhour each way from

Montreal in order to attend weeklyriding sessions, the serene setting,beautiful foliage and chance to spotwild animals like rabbits, chipmunksand deer offers them a welcomebreak from the flurry of urban living.“Most parents can never provide thiskind of an opportunity for theirchild in the city, beyond the mono-tony of hospital therapy,” saidWilson. “Coming out here is a realrespite and relief for many families.It’s a change of pace and scenery.They really appreciate that time toget away from everything.”

The center also has an indoor arenathat is used in inclement weatherand during the cold winter months.While each session is one-hour long,riders are encouraged to visit thestable before they ride to socializewith the volunteers and interact with their horses. During the actual 45-minute riding lesson, instructorsoften incorporate balls, hula hoopsand cones and devise games andobstacle courses designed to honeriders’ fine-motor skills, balance,hand-eye coordination, and direc-tion-awareness. Once riders dis-mount, they’re invited to assist in

6 • Summer 2006

“It’s very rewarding

for children to make

their animal stop

by themselves.”

EXCEPTIONALFAMILY

In circle: Émile Cardin Lalonde, age 4.Above: Yvonne Tannahill several years ago with Chauncey the cat and two volunteer Side Walkers.

the untacking and grooming oftheir horses and reward the animalswith treats for their hard work.

And the horses are hard workersindeed. In addition to the hours thateach puts in daily, all horses at LuckyHarvest undergo between two andthree months of training beforepeople with disabilities can ridethem. During that time, the animalsare introduced to mounting ramps3

and wheelchairs and are evenbumped with the chairs a couple oftimes in order to become acquaintedwith the sensation, should a similaroccurrence happen unintentionallyduring an actual session. Similarly,the instructors roll balls on theanimals’ ears, noses and backs, inorder to prepare them for the possi-bility of accidentally being struck byone during a game. In preparationfor the mounting and dismountingof riders with physical disabilities,the horses also learn to stand still for ten minutes at a time and getaccustomed to being surrounded bya number of people.

“When you’re working with excep-tional children, [some] tend to bevery loud,” said Wilson. “They mayclap and get excited very easily, kickor yell to express their happiness,and this could be hard on a horse’sback. We want to make sure that thehorses are going to be comfortablewith any type of scenario that could

happen and that we know how theyare going to respond.”

Noticeable improvements

For Carole Ness and Glen Tannahill,whose daughter Yvonne has Rettsyndrome, there is a sense of comfortin knowing that the horses are well

trained to handle any eventuality. Attwelve years old, Yvonne is a veteranhorseback rider, having takenequine therapy at Lucky Harvestsince she was two years old - the age at which her diagnosis wasconfirmed. At first, Yvonne was phys-ically strong enough to stand inde-pendently in the horse’s stirrupswhile riding, but because of her

degenerative condition, Yvonne isno longer able to bear weight on her legs and requires the help offour adults to transfer from herwheelchair onto her horse. Yvonnehas scoliosis4 and epilepsy and whileshe is non-verbal, she understands a tremendous amount and is able tocommunicate with those around her.

“Yvonne speaks volumes with hereyes,” said Ness, who accompaniesher daughter as a Side Walker5 on allof her lessons. “She also makes somechoices with her eyes. It’s evident byher reaction that she understands.


The McGill University Fragile X Development lab is looking for boys 3-12 years old for a detailed study on the early development of counting and attention skills. Individual

profiles of performance will be provided to allow families more appropriate access to educational resources and interventions.

Children play fun computer games and win prizes- at home or our specially designed lab!!

To receive more information or to book an appointment,please contact Julie Hanck:[email protected]

(514) 398-2126This project is supervised by Dr. Kim Cornish

3 A mounting ramp is a ramp used totransfer a person from a wheelchair onto a horse.

4 Scoliosis is a lateral curvature of the spineand rotation of the vertebrae.

5 A “Side Walker” is someone who walksalongside the horse and supports therider when necessary.

Clockwise: Paul Michael Laxton, 5, with his instructor, Julie, and father, Gary.Right photo: Régis Carrière, 25, with instructor Isabelle Tremblay and leaderDebbie Wilson work on balance, and Émile Lalonde, 4, brushes his horse withthe help of instructor Annika Voeltz.

She understands her favorite moviesand laughs in the appropriateplaces. She laughs if something hap-pens to someone in the family thatshe thinks is funny or sees someoneshe knows whom she hasn’t seen in awhile and she responds well to herschool peers,6” said Ness.

As for her therapeutic riding ses-sions, “Yvonne just loves to get on ahorse and go for a walk,” said Ness.“Her eyes light up and she smilesand when we stop the horse, sheusually rocks forward with her upperbody - that’s her cue for ‘I want towalk’. When we walk she’s still andshe’s happy, and if we stop to reposi-tion her, she’ll often rock again.Recently we had her trotting on a pony and she just loved it – shestarted to giggle and laugh. I thinkshe likes speed,” said Ness.

During her therapy sessions,Yvonne’s instructor concentrates on extending and strengtheningYvonne’s legs and helping hermaintain her balance while riding.“Yvonne requires a tremendousamount of concentration in order to hold herself up on the horse - not to fall backwards or forwards or sideways,” said Wilson. “It’s anextreme challenge for her to use herback and abdominal muscles andkeep her head straight. But this childis amazing – she can ride for about 40minutes. If she loses her balance, shecorrects herself and tries to pull her-self back to the center of the animal.”

In addition to improvements inYvonne’s balance and communicationsince she began riding, she has also gained control of involuntaryphysical movements often visible inpeople with Rett syndrome. “Girlswith Rett syndrome tend to have a hand-wringing motion and theyusually keep their hands tucked inclose to their bodies,” said Ness.“One of the things we were able todo through riding was to get Yvonneto bring her hands down and putthem on the back of the horse. It’squite neat to see that she is able tofocus and overcome that motionthat is very hard to break.”

Yvonne’s parents are equally thrilledto see their daughter derive so much pleasure from an activity thatis uniquely her own. “It’s enjoyableto see how she reacts on the horse,”said Tannahill. “It’s her Brownies orballet, or all those other things thatshe can’t join,” added Ness. “As aparent, it brings a real happiness tosee her go to an activity that sheobviously enjoys tremendously andto see her outside and interactingwith an animal that she loves so much.”


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Yvonne during one of her sessions –accompanied by (L to R) AmandaFarquhar, Debbie Wilson and Ann Tessier.

6 Yvonne is integrated in a “mainstream”school.

by RICHARD HABER, M.D.

In recent months, widespread coverage of Attention Deficit

Hyperactivity Disorder (ADHD) innewspapers, magazines and ontelevision has generated consider-able hype and even some concernaround the use of stimulant medica-tions to treat this common condi-tion. Amidst media reports thatdrugs such as Ritalin are beingprescribed more and more fre-quently to children, some may won-der whether ADHD is over-diag-nosed. Are kids being medicatedmore often? Additionally, is theirincreased exposure to video games,computers and action-packed TVand movies altering children’sperceptions and causing them tobecome hyperactive?

All of these are legitimate questions,which we shall explore in greaterdepth. In this issue of ExceptionalFamily, I will concentrate on what aparent needs to know in order toarrive at an accurate diagnosis ofADHD. I will also elaborate uponacademic and psychological treat-ment options and briefly introducethe role of stimulant medications.

ADHD is a real disorder with a bio-logical basis. It is a condition inwhich there is a lack of neurotrans-mitters (brain chemicals) in thoseareas of the brain that help us focuson a task at hand and control ourresponse to the thousands of stimuliwe are bombarded with on a dailybasis. The difference in the way thebrain of a person with ADHD func-tions compared to a “mainstream”person can be visualized with sophis-ticated research tools such as PETscanners. It must be emphasized,

however, that these researchtools are not available to

patients in clinical practice; theyare used by some researchers only.

Clearly, staying focused is a funda-mental requisite of school-agechildren, whose very growth andacademic performance are contingenton their ability to concentrate in aclassroom setting. Consistent with thisreality, a child’s concentration andbehavior problems are typicallybrought to his or her pediatrician’sattention in the middle years ofelementary school usually aroundGrades 3 or 4, when attention-basedactivities like reading are emphasized.

Often, parents’ concerns are basedon a teacher’s suggestion that theirchild has the diagnosis, (“I thinklittle Johnny needs to be on Ritalin!”or “Please consult a neurologist!”)or the fact that their child’s academicperformance may not be up to par.It should be noted that although the


Part One of Two

EF takes an in-depth look at the diagnosis and treatment of

Attention Deficit Hyperactivity Disorder

Is ADHD over-diagnosed?

Is ADHD over-diagnosed?

ADHD is a real disorder with a biological basis. It is a condition in which there is a lack ofneurotransmitters (brainchemicals) in those areas of the brain that help usfocus on a task at hand...

signs of ADHD are usually manifest at school age, the symptoms of thedisorder have in fact been presentfrom a very early age in many children.

If you suspect that your child mayhave ADHD, I urge you to be sure thata proper diagnosis has been madebefore considering any treatments,particularly medical ones. But first, itis important to educate yourself aboutthe diagnostic criteria for ADHD:

The diagnosis of ADHD is essentiallybased on descriptors contained in theDSM-IV1 published by the AmericanAcademy of Psychiatry. There areseveral classifications of ADHD:

1. ADHD, primarily inattentive type,i.e. without hyperactivity andimpulsivity. This type is morefrequently present in girls whomay represent an under-diagnosedpopulation because they tend notto be disruptive and impulsive.

2. ADHD, primarily hyperactive type,more frequently seen in boys

3. ADHD, mixed type, where bothinattention and hyperactivity arepresent.

As children with ADHD grow, theirsymptoms of hyperactivity andimpulsiveness may diminish whiletheir inattentive features maybecome more prominent in school.Because ADHD is based on descrip-tions of the behavior found in the child, these descriptions mustdescribe a permanent feature of achild’s behavior, not a transient onerelated to anxiety or immaturity.Thus, a diagnosis is generally notmade before the age of seven years toallow for maturation and in order toexclude other influences in the child’slife which may contribute to his or her

instability, such as a major emotionalupset caused by a relocation, divorceor death. In addition, the symptomsmust be present in two or moresettings, like home and school. Itmust also be established that thesymptoms are not due to some otherdiagnosis such as pervasive develop-mental disorder, autism, mood dis-orders such as anxiety or depression,

a personality disorder, or other psy-chiatric or medical diagnoses.

The diagnostic criteria for inatten-tion contained in the DSM-IV are sixor more of the following present for at least six months and leadingto some impairment of the child’sexpected academic performance:

1. Fails to pay close attention todetails or makes careless mistakesin schoolwork, or other activities;

2. Difficulty sustaining attention in tasks or play activities;

3. Often does not seem to listenwhen spoken to directly;

4. Fails to follow through oninstructions, homework etc.;

5. Disorganized;

6. Avoids or dislikes tasks requiring sustained attention;

7. Often forgets things or losesthings necessary for a project or task;

8. Easily distracted by extraneousstimuli;

9. Forgetful in daily activities.

The diagnostic criteria for hyperac-tivity/impulsivity must have six ormore of the following present for atleast six months and to a degree thatis impairing the child’s life:

1. Often fidgets or squirms in a seat;

2. Often leaves seat in classroomwhen sitting is expected;

3. Often runs about inappropriately;

4. Difficulty in engaging in quietplay activities;

5. As if ‘driven by a motor’ or ‘on the go’;

6. Talks excessively;

7. Blurts out answers before a question is completed;

8. Difficulty awaiting turn;

9. Often interrupts or intrudes –butts into conversations or games.

In order to make a diagnosis ofADHD the child needs to be assessedby a psychologist who will administera variety of neuropsychological tests2

to ascertain the child’s overall cogni-tive functioning, or IQ. The child’slevel of academic achievement is


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1 Diagnostic and Statistical Manual of Mental Disorders, 4th Revision.

2 Common tests include WISC (Weschler Intelligence Scale for Children) III or IV.

also determined using standardizedtests. The child’s symptoms are thendescribed using standardized andscored questionnaires3 based on theDSM-IV criteria set out above.

In addition, the child needs to bescreened for co-morbid4 conditionssuch as anxiety or depression, by apediatrician who will evaluate thechild’s medical history and conducta physical examination. Accordingly,a physician can also rule out thepresence of microcephaly5 caused bya fetal infection, fetal alcoholsyndrome or fetal alcoholeffects, neurofibromatosis6,hyperthyroidism, or petit malseizures7, for example. If theseconditions or diseases arepresent then the symptoms ofinattention and impulsivitywould be attributed to theunderlying condition and notto ADHD. Once all of thisinformation is gathered, and if allthe criteria for ADHD are fulfilled, a diagnosis can be made withreasonable certainty. It is at this time that I recommend that youbegin to explore treatment optionsfor your child.

A major point that I would like tostress from the outset is that in theideal, ADHD should be treatedmultimodally and not with medica-tion alone. It is important that bothyou and your child understand thata diagnosis of ADHD is not a reflec-tion of bad parenting or intention-ally bad behavior on your son ordaughter’s part. In order to dealwith some of the symptoms thatyour child may manifest at home,

you may benefit from joining a localor online parent support groupwhere you can exchange valuablecoping strategies with parents insimilar situations. Sometimes, indi-vidual behavioral or family therapymay also be helpful in confrontingthe stress around your child’s diag-nosis and its manifestation.

In order to assure the best possibleacademic outcome for your child,cooperation and communicationwith your child’s classroom teacheris essential. The teacher should beaware of strategies that can be usedto assist you child in challengingtimes and additional tutoring insubjects where your child may beexperiencing difficulty can enhancethe whole treatment plan.

Lastly, and equally important, stimu-lant medications have been provento be both effective and safe incontrolling the symptoms of ADHD.The medications do not ‘cure’ADHD but they do ameliorate the

symptoms thereby enabling theother aforementioned strategies to be applied more successfully.Stimulant medications, however,should always be considered atherapeutic trial and if there is noresponse to an adequate dose, thismay be a clue that the diagnosis isinaccurate and that other psychi-atric or medical diagnoses need tobe considered.

The Canadian Attention-Deficit/Hyperactivity Disorder ResourceAlliance (CADDRA) provides manyresources for parents of children withADHD on its web site www.caddra.ca.Additional resources may be found on the Canadian PediatricSociety website (www.cps.ca) and theAmerican Academy of Pediatricswebsite (www.aap.org).

Finally, if your child has been diag-nosed with ADHD, don’t panic butmake use of the many advances inthe diagnosis and treatment of thiscondition to enable your child toachieve his or her potential.

Stay tuned for the Fall edition ofExceptional Family, when I will reviewcommon stimulant medicationsprescribed for the treatment ofADHD and answer the questionsraised in my introduction!

Dr. Richard Haber is an AssociateProfessor of Pediatrics at McGillUniversity and the Director of thePediatric Consultation Center at theMontreal Children's Hospital. He isalso a Community Pediatrician.


3 Examples of such questionnaires include Conners, SNAP IV and Stoneybrooke, among others.

4 Co-morbid means two conditions are both present but not causally linked; i.e. ADHD does not cause anxiety or depression or oppositional behavioral disorder.

5 Microcephaly is a head size which is two standard deviations below the standard curve of head circumferences = a small head.

6 Neurofibromatosis is a genetic disorder which is associated with a variety of tumors (neurofibromas) in the brain and nervous system causing a variety of symptoms.

7 Petit mal seizures are a type of seizure characterized by a specific electroencephalographic pattern and a particular clinical pattern in which the child has very brief absence spells.


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Siblings of exceptional children experience many complex

emotions. While some may resentand express jealousy over the extraattention paid to their exceptionalbrothers and sisters, others mayexpress anger or guilt around theirdiagnosis. Additionally, some mayworry that they may “catch” thedisability or that they are carrying thesame genes as their affected sibling.

Some children may also feel embar-rassed by their siblings’ inappropriatebehaviors and annoyed or agitatedby them. Feeling anxious, isolatedand confused are quite commonreactions to the uncertainty thatsurrounds the diagnosis of anexceptional sibling. Finally, manychildren communicate their conflict-ing emotions by acting out, convey-

ing a perfect image orcovering up success.

Many mothers andfathers may initially

become so over-whelmed by theirown emotions andre spons ib i l i t i e s

around their exceptionalchild that they may

inadvertentlyneglect the

siblings’needs.

On the flip side, siblings can bewonderful role models, playmates andteachers to the exceptional familymember. Siblings often have uniquebonds with their exceptional brotheror sister and strive to protect themfrom life’s harsh experiences.

Moreover, siblings of exceptionalchildren often grow up to becomecaring, sensitive and giving adultswho embrace diversity and are moreaccepting of others with differences.Many pursue careers in the “help-ing” professions and contribute tosociety in special ways, for example,researching disabilities or fundrais-ing and advocating for exceptionalpeople, with a true passion that fewothers possess.

The following suggestions may helpto ensure that your child’s experi-ence in relation to his or her excep-tional sibling will be largely positive:

• Find a balance between enlistingthe help and support of siblings,while allowing them to have child-hood fun and be themselves.

• Establish regular family meetingsor brainstorming sessions whereall members of the family have achance to vent and share theirfeelings. Have each member ofthe family say nice things aboutthe others, so that they will be able to appreciate the positives.Incorporate role-playing to helpsiblings understand the varyingperspectives of other individuals.

• Listen to their emotions and donot criticize them. All feelings,including ones of embarrassment,resentment and jealousy, shouldbe validated. Offer the siblingshelp in trying to work throughthem. Remember that each ofyour children is unique and con-sequently each will process theirexceptional sibling’s conditiondifferently, at his or her own pace.Each family member’s perceptionis their own truth.

• Recognize that all siblings natural-ly compete with each other andhave conflicts even when there areno exceptional children in thefamily. Understanding this mayhelp put things into perspectivefor parents who may otherwisemistakenly interpret their chil-dren’s “normal” conflicts as a sign

In Focus A column by Montreal psychologist Harriet Greenstone, Ph. D., OPQ

The “special needs” of exceptional siblings

Siblings of exceptional

children often grow up to

become caring, sensitive

and giving adults who

embrace diversity and are

more accepting of others

with differences.

that they are acting out aroundthe exceptional family member.

• If sibling rivalry escalates, act as acoach, not a referee. Encouragesuccesses and foster team-playingbetween siblings. Don’t take sides.

• Parents often use behavioralmanagement techniques such ascharts and prizes for their excep-tional child. Remember to do this for the child’s siblings as well, so that familial behaviors, expec-tations and consequences areclearly defined for all children.While target behaviors may bedifferent for the siblings, the toolsshould be the same (i.e. chart or contract) so that all of thechildren feel on par.

• Don’t let siblings fall into roles likethe “good one” or the “patient one”;this only exerts additional pressureon the children to be perfect.

• Define the concept of “fairness” tothe siblings by explaining thateach child in the family gets whathe or she requires, which meansthat sometimes the exceptionalchild may require more attentionin a given situation. (This may bea very hard concept, especially foryounger children to understand).The important thing to stress is thatyour love is equal for all of them.

• Find a family support group. Mostpeople find comfort in talking to others who are in the samesituation. Only other siblings ofexceptional children can under-stand what they are goingthrough. The “being in the sameboat experience” can be very help-ful. There is also a tremendousamount of literature geared tochildren of all ages that covers thesubject of being the sibling of anexceptional child.

• Teaching the siblings relaxationtechniques may help them tomanage their anxiety,anger or frustrations.

• Somet imes , the attentionaccorded to“mainstream”siblings isoften com-promised by

the needs of an exceptional child.Alone time with one or both par-ents is very important as it conveysto the child that he or she is specialand valued as much as the excep-tional family member. Allowingsiblings to spend respite-time atrelatives or friends’ houses can bevery therapeutic as well.

• Explain to siblings about the dis-abilities of their brother or sister.(While some parents may fear thatthe siblings may use the informa-tion against the exceptional child,most inherently know that it isinappropriate to use as ammuni-tion for teasing.)

• Answer siblings’ questions honestly,without overwhelming them with

too much detail. Expect thatthey will return with further

questions when they are readyto process more complexinformation.1

• Finally and perhaps mostimportantly, remember thatwe all have “special needs.”Each child needs love,respect, and attention.Each needs to be allowedto be him or herself and tobe respected and support-ed for his or her distinctpersonality traits, strengthsand weaknesses.

Dr. Harriet Greenstone is aPsychologist and the Director ofCentre MDC, a multidisciplinarycare centre, specializing inchildren, adolescents, and adultevaluations and treatments.Harriet has done extensive workin developmental and learningassessments in her research andclinical work. She presentlyteaches child development atVanier College.


1 Ideas on information sharing adapted from “Ask the Expert” by Veeta Engel (Spring 2006)

by AVIVA ENGEL

Like many parents of exceptional children, Rafi Feuerstein was

inspired to work in a special needsfield when his son was born withDown syndrome 17 years ago. Anordained Rabbi and Religious Judgefrom Jerusalem, Feuerstein originallyhad his heart set on a differentprofession. “When my son was born,I realized how apathetic I am as ahuman being. I never thought that I was so apathetic, but from time totime, life’s tests act as a mirror toshow you who you are. I had plansand dreams and to be a therapist wasnot one of them. But I decided tochange my ideas and become thepsychologist of my own child.”

Fortunately for Feuerstein, he didnot have to search beyond his ownfamily to find a mentor to guide him in his ultimate career path. Yousee, Rafi is the son of ProfessorReuven Feuerstein, internationallyrenowned for his theories ofStructural Cognitive Modifiability(SCM) and the Mediated Learning

Experience (MLE)1 and founderof the International Center forthe Enhancement of LearningPotential (ICELP) in Jerusalem,a center that primarily treatsexceptional children withvarying needs and abilities.A student of André Rey,Jean Piaget and Carl Jungwho completed his doc-torate in developmentalpsychology at theSorbonne, ProfessorFeuerstein’s works

have been translated into eighteenlanguages including Braille andbeen taught in over 50 countries.

Today, Rafi works alongside hisoctogenarian father as the Vice-Chairman of the ICELP. Since themid-seventies the centre has taughtover twenty-five thousand instruc-tors from around the world. TheICELP currently has a waiting list ofover 2000 children and overseesmore than 70 authorized trainingcentres in 33 countries.

14 • Summer 2006

Enhancing the intelligence of our children

Insights from Rafi Feuerstein, Vice Chairman of the International Center for the Enhancement of Learning Potential

EXCEPTIONALFAMILY

The only stable thing in

humans is the fact that

they are not stable.

You won’t find many

people who won’t agree

that we are constantly

growing and changing.

1 SCM and MLE represent only a couple of Reuven Feuerstein’s many theories.

At a recent lecture in Montreal spon-sored by the Montreal FeuersteinStudent Initiative, Rafi Feuersteinbriefly outlined the principlesbehind his father’s theories ofStructural Cognitive Modifiabilityand the Mediated LearningExperience. The following is anabbreviated transcript of his address:

Structural CognitiveModifiability: An overview

If you come away with one messagethis evening, it is that the only stablething in humans is the fact that theyare not stable. You won’t find manypeople who won’t agree that we areconstantly growing and changing.Everyone can remember himself 10 or 20 years ago. You’re not the samenow as you were then. The keyconcept behind my father’s work is the postulate that each human ismodifiable; that to be a human beingmeans to have the ability to changein a random way - not just yourknowledge, not just your behavior,but your abilities, your thinking skillsand your learning skills.

The idea of modifiability interestedmy father very much. He once had anargument with his mentor of fiveyears, the renowned cognitive-devel-opmental psychologist Jean Piaget.He was his student in Geneva in thelate 50’s, early 60’s. His question [toPiaget] was the following: “When

you talk about child-development stepby step, stage after stage and youdon’t accept the idea of modifiability,

how do you explain the fact thathuman beings are so different? Go todifferent continents. The differencesare not just in the content of theirvalues, knowledge and habits. Thedifferences are also in the type ofthinking, the way people understandtime, organize space and the way theycome to conclusions. How do you

explain it? How do you explain thatwe are so different?”

Professor Feuerstein asserted that thevariety and the diversity that exist inhuman civilization are outcomes ofmodifiability. His main argumentwas against one of the strong symbolsof our culture, which is the I.Q. test -not just as a specific technique, butas a philosophical symbol that paintsthe human being as an entity wheregenes are the main factor responsiblefor a person’s level of functioning.While he accepts the existence ofheredity, chromosomes he believes, donot have the last word. Intelligencethen, is not seen as a fixed attributebut rather as the ability to learn.

Thanks to the genome project, in thefuture, when a child wants to go touniversity, he will simply take ablood test, the results of which will bedetermined in a laboratory and theanswer [of whether he has beenaccepted to the university] will comein the mail; ‘We checked your chro-mosomes, we know that you aredyslexic.’ With behavioral genetics,once we can identify the specificchromosomes responsible for certainconditions, the decisions will be basedon blood tests. Where is humanity?Where is freedom? There is none.

This is a philosophy that depicts ahuman being as an object, as some-thing similar to a computer with a pro-gram in it. When a teacher or parentuses the term “the child IS” it doesn’tmatter what a child “is” – he can bebrilliant or challenging – you arespeaking in the language of “traits”. When my son was younger, histeacher once told me that he readbetter than all of the other eight kidsin his mainstream class. But then the teacher qualified her statement by explaining that the reason my sonexcelled at reading was because theother students were all dyslexic. The


Intelligence is not seen

as a fixed attribute

but rather as the

ability to learn.

Rabbi Rafi Feuerstein

literature on Down syndrome definesmy son as having mild to moderateretardation. But as for his ability toread and write? That was easy,according to his teacher. [In hermind] he only has Down syndrome –It’s not a serious thing! On the otherhand, dyslexia [in her mind,] is avirus. ‘Don’t touch any dyslexicperson’, was her belief. ‘Would youtell someone without legs to run?How can you tell a dyslexic person toread?’ That’s man-made dyslexia. We call it a trait. It’s dangerous.

The teacher is not guilty. She’s anamazing teacher. She just had oneproblem: She didn’t transfer herknowledge from one area to another. It didn’t occur to her that if she could treat a child with Downsyndrome who has a chromosomalproblem, she could treat a child withdyslexia, even though its source isstill unknown.

I told my son’s teacher, ‘If you wouldinvest 10 per cent of what youinvested in my son, then there wouldbe no dyslexia, no dyscalculia2, nodysgraphia3.’ When you define achild as “learning-disabled” once, he will be learning-disabled forever.

Using the language of “traits” deniesmodifiability. Instead, it is preferableto use the language of “states” andsay, “Her behavior is…” In doing so, you are acknowledging that the child’s behavior is contingent on many factors and not simplysomething that is based solely on aninternal whim. This is a dynamicway of describing human beings.

Mediated LearningExperience: An overview

Professor Feuerstein believes thateducation plays a crucial role in thegrowth and cognitive development ofan individual. Learning is achievedvia two modalities: One modality iswhat we call a direct modality oflearning - I see you, I see books, I seea room. But direct learning isdependent on indirect or mediatedlearning, which is the second modal-ity. As parents and educators, each ofus can serve as a mediator betweenthe world and our children.

The child sees things directly.However for him to benefit from directlearning, he needs to be mediated bysomeone who uses environmentalstimuli to equip the child with theprerequisites to think independentlyin the future. The ability to modifycomes from mediation. Because when a child is mediated, he gainsthe ability to learn, to understand, to grow.

A parent who feeds his child dinnerwhile simultaneously reading thenewspaper, answering the phone, or

16 • Summer 2006EXCEPTIONALFAMILY

2 Dyscalculia is a learning difficulty affectinga person's ability to understand and/ormanipulate numbers. Like dyslexia, dyscal-culia can be caused by a visual perceptualdeficit. Dyscalculia is often used to referspecifically to the inability to performoperations in math or arithmetic, but isdefined by some educational professionalsas a more fundamental inability to concept-ualize numbers themselves as an abstractconcept of comparative quantities.

3 Dysgraphia is a learning difficulty whichimpacts on a learner’s ability to presentthe written word. People with this disorderhave difficulty with handwriting. Theirwriting is usually not legible and not writtenat an age-appropriate speed. Problemsmight be seen in the motor patterns usedduring writing, as well as difficulties withspelling and written composition.

When you define a child as

“learning-disabled”once, he will be learn-ing-disabled forever.

Professor Reuven Feuerstein assessesa child at the ICELP InternationalWorkshops in Paris in 2005.

checking his e-mail is not a mediator.To be a mediator is to describe thefood that you’re giving to your child -to use transcendence, to go beyond theconcrete stimuli, which is the food,and add a concept, like the concept of “hot”, for example. The differencebetween a concept and a word lies in establishing a frame of referencefor the child. So, not only would you

merely say, “The soup is hot”, youmight say, “The soup is hot like thesun”. A mediator teaches the childthat there’s a language of concepts, alanguage of symbols and compar-isons that represent concrete reality. Similarly, a parent who punishes herchild without explaining the reasonbehind it is not a mediator. The childwill only learn that the world isirrational and he will behave irra-tionally in the future. But a childwho is mediated is taught the reasonsand explanations for things. Such achild learns to understand that the

social world is built on cause andeffect. This is mediation.

My father views children who areborn with what we call learningdisabilities, retardation, ADHD,Down syndrome, autism etcetera aschildren who were born in the worldcovered by a curtain. The essence ofall of our clinical work is to save thesechildren by identifying a hole in thiscurtain. We try to see how we coulduse the hole, even if it’s small, tobring information into their innerworld. I want to send parents amessage: I want to convince themthat there is hope, that there is theability to modify your children. Youmay struggle to find the hole in thecurtain. But fight. Never accept thefate of a title, of a diagnosis.

To learn more about the FeuersteinMethodologies, visit www. icelp.org


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I want to send parents a

message: I want to convince

them that there is hope,

that there is the ability to

modify your children.

Professor Reuven Feuerstein assesses ayoung adult at the ICELP InternationalWorkshops in Paris in 2005.

Veeta Engel, M.S.W., M.F.T.

INDIVIDUAL, COUPLEAND FAMILY THERAPY

5515 QUEEN MARY, SUITE 303MONTREAL, QUEBEC

H3X 1V4

(514) 482-1124

When mediating withyour child, Feuersteinsuggests the following:

• Think of your child as thoughshe just landed on the moon.It’s her first day in our world.She knows nothing; every-thing is new to her.

• Remember that it is thequality, not the quantity of theinteraction that matters.

• Compare things. Ask yourchild questions, around thesizes, textures, colors andweights of objects, for example.

• Transform simple, daily situa-tions into meaningful lessons.Use time that is often wasted,like mealtime, dressing timeor time in the car, to mediate.

Five years afterthe infamous

9/11 terroristattacks tragicallytook thousands ofinnocent lives, des-troyed the TwinTowers and shocked

the world, one of the planet’s mostexhilarating destinations is buzzingwith electricity. New York City hascertainly cranked up the volume in2006, with a dizzying1 array of newhotels, global cuisine, breathtakingattractions, blockbuster Broadwayshows, fabulous exhibitions and, ofcourse, incomparable shopping.

Before you start planning your trip, I encourage you to log on to the NYC & Company website(www.nycvisit.com). All of NewYork’s public buses are wheelchairaccessible and individual door-to-door Para-transit service is availablefor people with limited mobility whomay be unable to use public bus orsubway service. While not every sub-way station is wheelchair-accessible,many stations contain elevators,ramps, visual display signs, accessi-ble public telephones, and audiofeatures on vending machines. TheMayor’s Office for People withDisabilities (212-788-2830) will mailthe book Access New York free of

charge to people who wish to order it via telephone. The 100-page large-type book provides resourcesand specific accessibility reviews ofcultural institutions, theaters, night-life, sports venues, and tours.

Visitors looking for a personalizedorientation to NYC need only callBig Apple Greeter (212/669-8159,212/669-3602, TTY 212/669-8273).With more than 10 years of experi-ence, the organization has connectedmore than 30,000 visitors with its500 volunteer residents (Greeters)for free visits to New York Cityneighborhoods.

Hotel accommodations

Located in one of the city’s mostexciting and central neighborhoodsat 371 Seventh Avenue and 31st

Street, the Affinia Manhattan(www.affinia.com) is truly an upscalesuite hotel at the center of it all – ifyou can swing it financially and wantto treat the family to a luxury get-away. Close to transportation, enter-tainment, Macy’s, Madison SquareGarden and other world-famousattractions, guests can take advan-tage of all the city has to offer withremarkable ease. The Affinia’s lobbyis a hub of activity, complete with aMetro Concierge - the hotel’s “cityspecialist” - who stands at a uniquemultimedia post offering New Yorkexpertise and an insider’s perspec-tive. Amenities such as city-focused


FAMILY

TravelA

dapt

ed

by MIKE COHEN

A column dedicated to traveling with exceptional children

An exceptional Big Apple experience

1 Recognizing that New York City is quite literally a “dizzying” place, I do not recommend this travel destination for anyone who has troublewith sensory integration. The city is extremely congested with people, cars, odors and noise – all of which would be extremely overwhelmingfor a child with sensory integration dysfunction.

activity kits and a library of NYC-themed books help guests plantheir New York experience from themoment they arrive. If requested,the hotel will happily provide guestswith a DVD player, which willundoubtedly be put to good use bythose traveling with children.

Affinia Manhattan suites provideplenty of room to spread out andrelax with ample space for enter-taining. Deluxe suites on the hotel’stop floors offer spectacular viewsand exclusive amenities such asplush robes and evening turndownservice. For the ultimate night’ssleep, guests can make a selection

from the Affinia Pillow Menu, fea-turing a choice of three signaturepillows. The hotel’s complimentaryparking service comes in handy foranyone choosing not to brave NYC’snotorious traffic-jammed streets.

For people with hearing impair-ments, the Affinia has rooms withdoorbells that light up when rung.The hotel also offers Teletypephones and ambulatory rooms

for guests who usewheelchairs, completewith roll-in showers.The Guest Servicesmanager will strive to accommodate anyexceptional guests whohave additional needs.For more informationcall 1-866-AFFINIA.

Families seeking more modest, lesspricey accommodations may wish to consider staying in nearby NewJersey and making the short com-mute to NYC. For more information

on lodging in New Jersey, visitwww.newjerseyvisitorsnetwork.com.

Broadway experience

Getting tickets to certain Broadwayshows is not easy. Although I begansearching online several months inadvance of my trip for tickets to vari-ous productions, I discovered that theshows my family was most interestedin were virtually sold-out. Ultimately,we settled on Wicked and Hairspray.The prices were extremely high, but I held my nose and ordered themonline anyway. The shows were good,but the best bargain for my moneywas the League of American Theatresand Producers’ official BroadwayOpen House (www.broadway.org),

a two-hour “insider’s”walking-tour throughManhattan’s TheaterDistrict that exploresthe interiors of Broad-way theaters, offersfans an opportunity tohear legendary back-stage stories and dis-cover a rarely seen side of Broadway.Tours depart from the Broadway TicketCenter in the Times

Square Information Center on theEast side of Broadway between 46th

and 47th five days per week (Tuesdaythrough Saturday) at 10:00 am; fromSeptember 1 through December 31,three days per week (Wednesday,Friday and Saturday) and from Jan. 1 to March 31, twice weekly(Wednesday and Saturday). While I recommend this tour for childrenages six and over, children shouldhave the stamina to endure the two-hour tour and all of the walking thatit entails. Most importantly, comfort-able shoes are a must!!

For patrons who use wheelchairs,arrangements can be made for a


Some of New York City’s morememorable Broadway shows

tour operator to push them. Peoplewho use walkers or crutches may be accompanied by separate tourguides so that they can participate at their own pace without feelingpressured to keep up with the group.All of the theatres visited on the tourare equipped with outdoor rampsand no stairs are involved once inside.

Many theatrical productions andmusical performances offer discountsfor people with physical disabilities.Tickets are available through indivi-dual theater box offices or throughthe Tele-Charge Access Services hot-line at (212) 239-6222. For peoplewith hearing impairments, theHands On! Organization arrangessign language interpretation formany cultural events in NYC, inclu-ding museum exhibitions, theaterproductions, and film screenings.Theatre Development Fund's Thea-tre Access Project offers open-caption2 and sign-interpreted per-formances for many Broadway andOff-Broadway productions, and alsoarranges access for people who usewheelchairs. Hospital Audiences,Inc. provides an audio-descriptionservice for theatergoers with visualimpairments who wish to take in theaction on stage.

Where to go

New York's famous Empire StateBuilding (www.esbnyc.com), a NewYork City Landmark and a NationalHistoric Landmark, soars more than a quarter of a mile into theatmosphere above the heart ofManhattan. Located on the 86thfloor, 1,050 feet (320 meters) abovethe city's bustling streets, the Obser-vatory offers panoramic views fromwithin a glass-enclosed pavilion andfrom the surrounding open-airpromenade. Since the Observatory

opened to the public in 1931,the awe-inspiring sight of thecity beneath them has wowedalmost 110 million visitors.The building is entirely wheel-chair-accessible, and includes acces-sible bathrooms on the Concourselevel and 86th floor observationdeck. The deck itself has accessibleviewing-windows and binoculars. Allelevators have lower-reaching selec-tion panels, which are also in Braille.

Admission to the Empire StateBuilding is US$16.00. Lineups toenter the Empire State Building canbe extremely long. However, thosewho have difficulty waiting in line forextensive periods of time may use anexpress line at a cost of US$40.00.

If animals interest you, the CentralPark Zoo (www.centralparkzoo.com)is well situated, wheelchair-accessi-ble and full of life. From a steamyrain forest to an icy Antarctic pen-guin habitat, the zoo leads visitorsthrough Tropic, temperate andPolar regions in which theyencounter fascinating animals -from tiny leafcutter ants to tremen-dous polar bears. The TischChildren's Zoo, added in 1997, letslittle animal lovers explore gentlecreatures up close. Year-round edu-cation classes and innovative public

programs -i n c l u d i n g the zoo's" W i l d l i f eTheater" –encourage allages to learnmore aboutour natural

world and become involved in itsprotection. Through the AmericanZoo and Aquarium Association's(AZA) Species Survival Program, thezoo is actively involved in helpingendangered species, including raretamarin monkeys, Wyoming toads,thick-billed parrots, and red pandas.Guests with visual impairments orautism who use service animals maybring them into the zoo, providedthat the animals remain properlyleashed. Guests are solely responsi-ble for the care and control of their animals.


FAMILY

Centre MDCINDIVIDUAL & GROUP THERAPY

189 Hymus Blvd., Suite 311Pointe Claire, Quebec H9R 1E9

Tel: (514) 695-8118

• Social skills therapy

• Anger management

• Stress management

• Study and organizational skills

• Cognitive restructuring

• Parent education and support group

• Reading club for parents

• Child development course for parents

• Communication skills for parents

• Summer: Brain fit programhalf and full days

Call for info on our Summer programsand Fall/Winter programs

Empire State Building

2 With open captioning, dialogue is projectedon a screen in plain-view of the audience.

Red Panda

New York is a city of museums, manyof which are wheelchair accessible.But if you can visit only one, I recommend The American Museumof Natural History (www.amnh.org)located at Central Park West and 79th Street. Established in 1869, themuseum has played a leading role inexploration, discovery, and theoreticaladvances in the natural sciences.Divided into five sections includingAnthropology, Paleontology, Inver-tebrate Zoology, Vertebrate Zoology,and Physical Sciences, the museum iswell-organized and easily navigated.The museum also boasts the RoseCenter for Earth and Space, the V.Starr Natural Science Building, anIMAX Theatre (not recommendedfor people with sensory-integrationdysfunction due to the films’ in-your-face visuals and overwhelmingsound-effects), an amazing ButterflyConservatory and the CosmicCollisions planetarium - all of whichare must-stops.

The Rose Center and parkinggarage entrances are wheelchairaccessible, as is the 77th Streetentrance for programs only. Allvideo displays are captioned forpeople with hearing impairmentsand headsets and neck loops3 areavailable upon request in theaters.Closed-captioning is available forcertain IMAX movies while scriptsand synopses are available for showsat the planetarium.

Also worth a visit is MadameTussauds New York on 42nd Street,where you can get up close and per-sonal with some of the world’s mostinteresting personalities. I rubbedelbows with the likes of WoodyAllen, Golda Meir, Bill Clinton,Nelson Mandela, Lindsay Lohan,Jessica Simpson, Whoopi Goldberg

and many more. You can even visitthe wax double of American Idoljudge Simon Cowell and attempt towow him in a great karaoke setup.Madame Tussauds New York iswheelchair accessible and wheel-chairs are available upon request atthe box office on a first-come, first-served basis. While children eightyears and over who are well-versed in pop culture may find this museuminteresting, parents may find that it does not offer the kind of stimu-lation that would sustain theirchild’s attention and interest.Madame Tussauds New York will also likely be unappealing to

children with autism who typicallyhave difficulty relating to others’emotions and facial expressions.

Toys, toys, everywhere

Last but not least, Toys R Us TimesSquare is a MUST SEE for toy-loversof all ages. A virtual play-kingdomspanning four floors, Toys R UsTimes Square features a giantindoor Ferris wheel where kids canride on their favorite toy characters,a colossal Barbie Playhouse, giganticThomas the Tank Engine railroadset and a candy store called – youguessed it – Candyland, completewith life-size characters from the time-less board game and giant M&M’s.

Toys R Us Times Square4 is notrecommended, however, for anyonewith sensory integration dysfunctionor ADHD; the hundreds of peoplewho frequent the store at any giventime combined with constant music,sound effects and an overwhelmingamount of toys, can assault thesenses of even the most tolerant“neurotypical” person. The storealso features an enormous, five-ton, 20-foot-high T-Rex from JurassicPark™ that belts out intermittentroars every few seconds. While olderkids will surely be fascinated by thedino’s realistic features, young chil-dren will find the T-Rex incrediblyscary, as will children with autismwho may not be able to differentiatebetween real and pretend.

Mike Cohen is a Montreal writer, theCommunications and Marketingspecialist for the English MontrealSchool Board and a Côte Saint-Luccity councilor. Contact Mike [email protected].


3 A neck loop is a hearing-enabling device that loops around one’s neck.

4 It must be noted again, that Times Square in particular (and even more so at night) is especially populated and boisterous and is thereforenot recommended for anyone easily affected by sensory overload. The sheer brightness of the neon signs alone is enough to make anyoneoverwhelmed.

Toys R Us Times Square

Rose Center for Earth and Space

by THOMAS HENDERSON

Yoga. Everyone is doing it!From yoga courses and studiosto mats and apparel, DVD’s

and books, yoga has become all therage as more and more people arediscovering the activity’s physical and emotional benefits. And now,centers across North America areincreasingly offering yoga programsthat cater to exceptional childrenand adolescents with AutismSpectrum Disorder (ASD), ADD/ADHD, Down syndrome, learningdisabilities, dyspraxia, cerebral palsy,and a variety of other special needs.

The word “yoga” comes from theSanskrit word Yug, which meansunion or joining. Yoga consists of awide variety of activities, includingperson-centered exercises thatincorporate breathing and medita-tion techniques, aimed at improvingall aspects of being: emotional,psychological, physical, and social.

Yoga providesan effective setof exercises tobenefit the

whole body.Muscle tone and

flexibility are honed through sys-tematic stretching and maintainingof postures. Movement sequences,called vinyasa, are taught, with visualsupport, to improve praxis (motor-planning), coordination and

bi-lateral functioning of the body.Another important aspect of theprogram is body-awareness. Adapted-yoga participants are encouraged to experientially discover their body: its functions, sensation, andanatomy. Yoga poses also benefitalignment, balance, strength andsupport healthy posture. Withincreased body awareness andfitness, comes self-confidence andopenness to learning.

Moroever, its therapeutic qualityand flexibility combined with the

fact that it is a non-judgmental andnon-competitive pursuit make it anideal approach to help address agamut of issues, concerns and goalsthat any person might have.

For children and teens with specialneeds, an adapted yoga programmay not only address a variety oftheir unique concerns, but alsoserve to promote self-confidenceand social communication. Further-more, adapted yoga provides anincredible opportunity for partici-pants to build their self-esteem whileinteracting and enjoying an activitywith peers. It also enables them tobe proud of their achievements,gain a sense of mastery and to 'own'an interest.

For many parents, finding extra-curricular activities that their excep-


FAMILY

Yoga-based therapy Yoga-based therapy for exceptional children and adolescents with special needs

aaaaaaaaaaaaaaaaaaaaaa

With increased bodyawareness and fitness,comes self-confidence

and openness to learning.

i

Diego Noya, age 13, relaxes his mind and body through meditation.

aaaaaaaaaaaaaaaaaaaaa



tional child cansuccessfully take-

part in is challen-ging. The highly

structured andrepetitive nature

of most yoga classesprovides children and teens

with a predictable, secure environ-ment and routines that encourageparticipation and are conducive tolearning. This structure is supportedby schedules, visual supports, andeven the physical boundary of a yogamat, which helps to define andorganize participants’ use of space.

Among other benefits, yoga instruc-tors find that movement activitieshelp to stimulate language acquisi-tion and expression. The studentsalso experiment with a lot of thenon-verbal skills inherent in com-munication: posture, expression,proximity (the use of personal space)and gestures. In my own adapted-yoga program, I also attempt tostimulate participants’ creative think-ing by revolving each class around adifferent theme on which discussionsand creative group projects, likedrawing and acting, are based.

Perhaps most remarkable, is yoga’sability to minimize the specificchallenges of exceptional children,including sensory integration dys-function, self-regulation issues andanxiety-management problems.

Sensory integration

Children and adolescents with ASD,as well as those with other develop-mental disabilities, often experiencesensory integration dysfunction,which manifests in either a height-ened or under-responsive reactionto sensory stimuli. Yoga postures andmovement sequences provide a deepsource of stable proprioceptive1

input. By holding postures, thechild's body starts to recognize andmake adjustments based on sensorysignals. Accordingly, the muscles,joints, and tendons 'teach’ aware-ness of body position. The central

nervous system is also affected,allowing the participant to processand modulate sensory informationin a more organized and appropriateway. Another important aspect ofyoga class is balance. The vestibularsystems2 of many exceptional peopleare also often hypo or hyper-reac-

tive, resulting in either apprehensiveand fearful responses to movementor, on the other end of the spec-trum, a search for intense sensoryexperiences. Controlled balancingactivities and postures involvinginversion (upside-down positions)have shown to be very therapeuticallyeffective in this regard.

Self-awareness, emotional regulation and anxiety management

Self-awareness and emotional regu-lation are supported and taught by

using a cognitivebehavioral approachin yoga class.Students learn toself-regulate usingm e t a c o g n i t i v e 3,behavioral (physi-cal), and languagestrategies. Sincechildren and adoles-cents with sensoryprocessing difficul-ties often experiencehighly fluctuating

arousal levels, a combination ofphysical exercises that providesensory stimulation and relaxationtechniques can really help tostabilize these fluctuations.

Breathing is a very important aspectof any yoga class and directly affectsanxiety management. Participants

• Summer 2006 23

• Individual Needs Assessments• Psychological Assessments• Coordination & Referral• Liaison & Advocacy• Curriculum Planning• Classroom Support• Staff Development• Behaviour Programs

• Guidance Systems• Family Support & Training• Qualified & Trained Educators• Professional Services in the• Therapeutic areas of:

– Occupational Therapy– Physiotherapy– Speech Therapy

Abby Kleinberg-Bassel, B.A., M.Sc., Ed. Special Needs Consultant

(514) 313-2010 email: [email protected] Ferrier, Suite 604

1 Proprioception is the unconscious per-ception of movement and spatial orienta-tion arising from stimuli within the bodyitself (muscles, joints, tendons, ligamentsand connective tissue).

2 The vestibular system is the system in thebody (inner ear) responsible for maintain-ing the body's orientation in space, balance,and posture. It also regulates locomotionand other movements and keeps objectsin visual focus as the body moves.

3 Metacognitive refers to a person's knowl-edge of the functioning of his or her ownmind and his or her conscious efforts tomonitor or control this functioning.

EXCEPTIONALFAMILY

haaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

Robin Mahar (L) and Owen Nickols (R), both 10, practicedeep breathing with yoga instructor Thomas Henderson.

are instructed in a variety of deepbreathing techniques, key to self-regulation. They also learn how toidentify even low-level feelings ofanxiety or agitation and employmeditation, visualization, systematic

relaxation of specific body parts,self-massage and still-resting (calledshavasana: lying supine on the floorwith eyes closed) to self-regulatetheir levels of arousal and anxiety.

As ASD and other developmentaldisabilities become increasinglydiagnosed, there is a growing needfor therapeutic interventions thattarget the whole exceptional childand allow him or her to participateas an equal, rather than merely as a 'client' or 'patient'. By definition,yoga is an excellent example ofsuch a program. Because of itspotential to address a person’smultiple facets (physical/emotional/

social), participants’ parents reporta high-degree of generalization oftheir children’s skills across differentenvironments, both academic andsocial. Yoga is multi-disciplinary andencourages overall personal devel-opment. Students experientiallylearn and grow alongside peers in a safe, fun, and non-competitiveenvironment that provides a truesense of belonging and success.

Thomas Henderson is a SocialSkills Specialist and TrainingCoordinator at Giant Steps inMontreal and has developed andimplemented an after-school Yogaprogram for children and teenswith ASD. He also co-coordinatesa summer theatre camp forexceptional children.


FAMILY

At École WESTON School we Specialize in...

INQUIRE ABOUT OUR NEW TIERED FEE SCHEDULEFor an appointment call (514) 488-9191

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❏ Small classes with personalizedattention to each child.

❏ Teacher-Student ratio is 1:15average from Kindergarten toSecondary V.

❏ Outstanding programmes inCore Curriculum, PhysicalEducation, Visual Arts, Drama.

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Students practice various poses suchas “Downward Facing Dog”, at GiantSteps’ after-school yoga program.

Boy with profound hearing loss sings for the PopeA nine-year-old boy from Quebec who has a hereditary

condition that causes deafness recently performed at the

Vatican for Pope Benedict XVI and five Quebec Catholic

cardinals prior to a blessing ceremony for the Ark of the

New Covenant. Accompanied by his parents, Jérémy

Gabriel sung the psalm “Je louera l’Éternel” before the Pope blessed the

Quebec-built chest, which is decorated with images related to the Eucharist.

Born with Treacher Collins syndrome, a condition that is also characterized by underdeveloped cheek-bones,

downward-slanting eyes, malformed ears and a small lower jaw, Gabriel has undergone 15 major corrective

surgeries and has partial hearing thanks to an implant in his skull that captures sound waves. Having previously

performed onstage with Celine Dion in Las Vegas and sung O Canada before 20,000 spectators at a Canadiens

game in Montreal – a performance that drew him a standing ovation - Gabriel is no stranger to fame. He has also

appeared on a number of French-language radio and TV shows and recently released a second CD. The child

expressed a wish to sing for the Pope last year after watching media coverage of Pope John Paul II’s funeral.


News briefs highlighting special issuesNews

Exc

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onal

Tonsillectomies may cure ADHDResearchers at the University of Michigan Sleep Disorders Center have found

that children with Attention Deficit Hyperactivity Disorder (ADHD) who had

tonsillectomies behaved better a year after their surgery. This latest research

backs a theory that ADHD - a condition which affects approximately one in

12 children - is strongly linked to sleep-disorders. Researchers have drawn a

correlation between sleep disturbances, like sleep apnea1 and snoring and

hyperactivity in children. Approximately half of children who have tonsillec-

tomies have them because their enlarged tonsils and adenoids are hindering

their ability to breathe. The study found that when the tonsils were removed,

the children slept better and were calmer when awake.

The scientists compared 78 tonsillectomy patients

between the ages of five and 13 with 27 children who

had had other types of surgery. Prior to their opera-

tions, those who had had tonsillectomies had sleep

and behavior problems more frequently than those

in the control group. Of the 22 children who were

diagnosed with ADHD prior to their tonsillectomies, 11

no longer had the diagnosis one year following the

surgery. According to Dr. Ronald Chervin, director of the

center and author of the study, tonsillectomies may benefit about a quarter of

kids with ADHD – a substantial number given the condition’s prevalence

in children.

1 Sleep apnea is characterized by temporary periods during sleep when onestops breathing.

ABC pilot includes characterwho has autismThe ABC Television Network will

soon premier a new drama that

touches upon a mother’s chal-

lenges around raising her child

who has autism. Touchstone TV’s

Brothers & Sisters is set in L.A.

and centers around adult siblings

and their grieving mother who

come together after the sudden

death of their father, the family

patriarch. The cast includes

Calista Flockhart of Ally McBeal

fame, who narrates the story

as the show’s “most outspoken”

sibling. Brothers & Sisters will air

Sundays at 10:00 p.m. (ET).


FAMILY

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News

Magic Johnson to co-produce movie about teen with autismA teenager who drew national attention in the U.S. after winning his basketball team’s final home

game of the season will be the subject of a new movie to be co-produced by basketball legend Magic

Johnson. Seventeen-year-old Jason McElwain, aka J-Mac, of Rochester, New York, has autism and did

not begin speaking until the age of five. In February, McElwain, who is the manager of the Greece

Athena High School basketball team, made headlines after he entered his team’s final home game

with four minutes remaining. Despite the fact that it was his first and only game of the year, McElwain

scored 20 points, won the game and was hoisted-up by his elated teammates. His victory

sparked movie inquiries from approximately 25 Hollywood production companies, including

The Walt Disney Co. and Warner Bros. Recently, Sony Corp.’s Columbia Pictures acquired

the film rights. McElwain, who is at a Grade 4 level academically, lacks certain social skills

but is said to get along well with his “mainstream” peers. AP NEWSWIRE

In search of treatment a world awayThe parents of a two-year-old boy with a rare metabolic

disorder are moving their family of four from Ontario to

England in the hopes of acquiring government-funded

enzyme-replacement medication for their son that is not

covered in Canada. Isaac McFayden has Maroteaux-Lamy

syndrome, a degenerative condition that has caused an umbilical hernia, blurred

vision and necessitated surgery to remove portions of his skull and vertebrae that

were compressing his spinal cord.

The drug, called Naglazyme, is available in North America; however few patients

can afford to pay the minimum annual cost of $300,000 to obtain it. Because only

three to 10 Canadians are affected by McFayden’s disorder, the medication has not

been reviewed by Health Canada and is therefore unlicensed. Under the Canadian

government’s special-access program, patients with life-threatening illnesses or

disorders are permitted to acquire unlicensed medications in the absence of

conventional treatments. The McFaydens’ challenge lies in being able to fund

Naglazyme for Isaac’s lifetime use. Naglazyme is licensed throughout the

European Union and funded by the government.

Rats with spinal cord injuries regain partialability to walk thanks to stem cells

Scientists at the Krembil Neuroscience Center at Toronto

Western Research Institute have restored partial walking-

ability in lab rats with spinal cord damage by injecting them

with stem cells from the brains of mice. The rats, whose

spines had been crushed, were simultaneously administered

anti-rejection drugs. The cells merged with the injured spinal

cord tissue and began to produce myelin, the insulating layer

around nerve fibers that transmits signals to the brain.

While the rats did not recover completely, they did regain a

considerable ability to walk and support their weight and

improved coordination in their joints. The findings have

profound implications particularly for people who lack

myelin and have paralysis consequent to spinal cord injury.

The parents of a 12-

year-old boy who

was expelled indefi-

nitely from school

after his mother

refused to give him

Ritalin have launched

a Quebec-wide suit

on behalf of people

who have felt coer-

ced to put their children on the

stimulant. Despite having signed an

intervention plan for her son Gabriel

that included prescription medica-

tions to treat his hyperactivy and

ADD, Danielle Lavigeur discon-

tinued the drug in January because

Gabriel was suffering from side

effects including insomnia, aggres-

siveness and loss of appetite.

While officials at Lavigeur’s school

contend that his behavior became

unmanageable around the same

time that he ceased taking his pres-

cription medications, they assert that

the boy’s expulsion was a result of his

repeated failure to follow school rules

around dress, hair color, behavior

and academic performance.

Lavigeur may return to school on

condition that his parents comply

with the intervention plan that they

willingly signed – which includes the

administration of Ritalin.

Parents of boy withADD “felt bullied” to

put their son on Ritalin

by LISA XING

Most Canadians typi-cally start their day

with a glance at newspa-per headlines. It’s some-thing we take for granted.For the millions ofCanadians who are blind,have low-vision or learningor physical disabilities that make it challenging for them to read, that simple pleasure is beyond their grasp. Fortunately, there’sVoicePrint Canada, a unique medianon-profit organization that broad-casts news, information and specialtyprograms 24-hours a day, seven days a week throughout the country.

With the help of volunteer readers,VoicePrint Canada broadcasts full-text articles from Exceptional Familyand more than 600 other Canadianpapers and magazines, reachingmore than eight million Canadianhouseholds through local cableproviders, satellite and the internet.In contrast to radio and television’scharacteristically brief news seg-ments, VoicePrint allows readers to“hear” the entire story.

“To get in-depth coverage [of dailynews] you have to read the news-paper,” said fourth-year University ofToronto student Aman Singer, whostarted listening to VoicePrint in the1990s, when there weren’t manyother forms of media accessible topeople who are blind. “Its impor-tance at that time can’t be magnified.I found it was a lifeline,” he said.

VoicePrint is the result of a move-ment that began in the 1980’s whena pioneering group of people posed the following question togovernment: How could millions ofvision and otherwise print-restrictedCanadians get access to the pub-lished news and information theyneed to help them make the basic

decisions of every day life – and to help them fulfill their rights and responsibilities as citizens? Inresponse, the Canadian Radio-tele-vision and TelecommunicationsCommission (CRTC) concluded

that VoicePrint’s establishment “wasnot only in the public interest but amatter of national importance.”

In March of 2001, VoicePrintCanada was officially named amandatory service by the CRTC forlarger broadcast distributors. “Thismeans any cable or satellite companywith more than 2,000 subscribers isrequired to carry the VoicePrint


Exceptional Family nowavailable in audio format

Thanks to an initiative of VoicePrint Canada,EF will now be available to people who are blindor have impaired vision.

Marianne d’Eon-Jones, an editor atVoicePrint Canada, explores EF withher daughter Diana, age 8.

George Cox, VoicePrint volunteer

service,” said Arlene Patterson,Outreach Director of VoicePrintCanada. “That means more then 95per cent of the country is covered.”

Today, VoicePrint is accessiblethrough the secondary audio pro-gram (SAP) of CBC Newsworld,audio channels of ExpressVu, StarChoice and Look TV, Rogers DigitalChannel 196 and via the Internet.Across Canada, close to 800 indivi-duals from a variety of backgroundsvolunteer to read selected articles. InToronto, their 30-minute reports arerecorded, edited and post-producedby studio technicians who are blind.The technicians also manage thenetwork centre. VoicePrint has broad-cast more news and information pro-gramming than all other Canadiantelevision stations combined, withthe exception of CBC Newsworld.

While VoicePrint was initially basedin Toronto, regional offices weresoon established in order to bringlisteners up-to-date news and infor-mation on their respective regions.The regional broadcasts were such ahit that they sparked a demand foreven more localized news and infor-mation. Listeners quickly expressedinterest in hearing articles fromtheir community publications sothat they could be kept informed ofnews and events about their localCity Halls, businesses and sportsteams, for example. To meet their

needs, VoicePrint embarked on anambitious new initiative in 2004 toincrease and improve local servicein such cities as Halifax, Edmonton,Calgary, Toronto, Sudbury andVancouver. By the year 2010,VoicePrint hopes to have 100 broad-cast centers in operation.

“The goal of our organization is tohelp break barriers that preventpeople from accessing the media sothey can independently access news-paper and magazine articles,” saidPatterson. This is especially impor-tant in society today. By age 50, halfthe population will require prescrip-tion reading glasses. By 65, a largepercentage of these people will beunable to see, to read the newspaper.1

“I think we’re each given a gift,” saidMike Morrison, a weekly volunteerreader from Toronto, who is gratefulfor his vision. “Those of us who haveit have an obligation to share it.”

VoicePrint is proud to add ExceptionalFamily to the growing list of publi-cations available in audio. EF airs onSaturdays and Sundays at 2:30 p.m. onthe “Ability Today” program. It can alsobe found on VoicePrint’s Audio Archive.For more information on services andprogram schedules call 1-800-567-6755ext 222 or visit www.voiceprintcanada.com. To access a local broadcast go to www.voiceprintcanada.com andclick on the Local Broadcast Centericon on the homepage.


FAMILY

FREEDOM

Mobility Stroller

Designed for Children

and Adults with

Special Needs

Brands In Motionwww.brandsinmotion.ca [email protected]

1-866-774-7177

Distributed by

1 National Advisory Council on Aging, 1997

(L to R) Charmaine Hucolak and Bud Kofman, VoicePrint Canada volunteers; Cathy D’Angelo giving orientation,and Bill Shackleton, the producer of VoicePrint Canada.


Q Our 17-year-old son Jay hasmoderate developmental delays

and sensory integration dysfunction.While it has always been a struggle forus to care for his personal needs, latelyit has become impossible to cut his hair,shave him or cut his nails due to hisheightened sensitivity to touch andrefusal to cooperate. He is physicallylarge, which makes restraining him anon-viable option.

My husband feels that I put too muchemphasis on Jay’s appearance. He hasno problem letting Jay go ungroomedfor weeks at a time and rationalizesthat most teens intentionally sport arugged, unkempt look.

Besides the fact that Jay’s uncouth,neglected appearance reflects negativelyon us as his caregivers, I think weshould do whatever we can to enhanceJay’s appearance, so that others willtreat him with the dignity and respectthat he deserves. Is there some kind ofmiddle-ground?

A The short answer to your ques-tion is yes, there is a middle

ground. The challenge is in figuringout how to establish it. Your letterpaints a picture of the struggle thatit is to handle your son’s groomingneeds, but it also reflects the con-comitant tension that you are expe-riencing as a mother, as a wife and as a member of society. If we are to address the question of finding

a middle ground, we will need to consider how doing so will playout in all of these areas, since theyare all related to managing Jay’schallenging behavior.

In my mind, finding a middle groundis associated with seeking balance andthe need for compromise. Although I will offer some specific strategies to improve the grooming situation,having an attitude which embracesthese concepts plays a major role.Since you are willing to find the mid-dle ground, (as your letter conveys)you are already half way there.

Although you are no doubt familiarwith the features of Jay’s disabilities,

allow me to review them as a startingpoint so that the implications of hiscondition are clear. Developmentaldisabilities such as you describe inJay’s case, often go hand in handwith a dysfunctional sensory system,meaning that the brain is unable to properly process informationbrought in by the senses. Your lettermakes reference to that part of Jay’s sensory integration dysfunc-tion which reflects particular sensi-tivity in the tactile system, leading to a negative emotional response to touch.

What this means is that Jay’s distressat being groomed is genuine andthat his lack of cooperation is theexpression he gives to that distress.As well, the combination of Jay’s sen-sory integration dysfunction and hisadolescent development may helpto explain why he has recentlybecome even harder to manage.Many parents of children withdevelopmental disabilities anecdo-tally report that as teenagers theyshow heightened aggressiveness.

Currently, it looks as though youand your husband are in a tug-of-wararound how to manage Jay’s groom-ing. This may be a displacement of your anger at Jay for rebuffingyour caretaking efforts. Finding amiddle ground means keeping Jay’s response in perspective byreminding yourself that it is beyond

ExpertA

sk t

he A column by Montreal marital and family

therapist Veeta Engel, MSW, MFT

Helping an adolescent with sensory integration dysfunction manage his grooming routine

his control.Doing so would enable

you to work collaborativelywith your husband around how

best to alleviate some of Jay’s pain. It is worthwhile to consider how con-tinuing to pull the rope at oppositeends fosters tensions which may alsobe exacerbating Jay’s own stress.

Both you and your husband share thewish for Jay to find acceptance. Youfeel that it would be achieved througha clean-cut appearance, while yourhusband points out that many teenstoday look a bit scruffy, and Jay wouldfit right in. It is not my mandate todecide which approach would yieldthe greater social benefit, but ratherto support you in finding the com-promise between Jay’s social andemotional needs, as well as your own.

This brings me to the aspect of howyou feel your image as a mothercould be jeopardized if others judgeyou as neglectful. Of course, youhave no way of knowing for certainthat this is how you will be perceived,but even so, this concern must bebalanced with your consideration of what may actually be best for your particular child and family thus allowing you to be more open-minded about the strategies youcould employ with Jay.

You might, for example, consideryour husband’s point about de-emphasizing Jay’s appearance and

permit Jay to sport a beard andlonger hair, in terms of its emo-

tional benefits. If you would be willing to move toward

“good enough” rather than“perfect” grooming, this

will help to reduce thestrain of Jay’s groom-

ing routine and thepain that goes with

it. (His hair and beardcan be kept reasonably neat

with far less intervention. Possiblyhe could wear a ponytail; his beardwill need occasional trimmingversus daily shaving.)

In seeking a middle ground, I’msure you would agree that the use ofa restraint even if you could apply itwould be inappropriate. As you cansee, there are many more humaneand less anxiety-provoking options,such as the following:

• Encourage Jay to articulate what is bothering him about theseprocedures so that you can try tomake them less aversive. Does ithurt for example because his nails are being cut too short? Is heannoyed by the sensation of therazor but more comfortable withan electric shaver?

• Offer incentives like a specialreward, privilege or treat in returnfor his cooperation.

• Engage the services of an occu-pational therapist trained to work

with sensory integration dysfunctionto help Jay build more toleranceto touch.

• Discuss with Jay’s doctor the possi-ble use of a mild sedative to helphim relax before a major groom-ing session.

• Divide up grooming tasks so thatJay is not overwhelmed by havingthem done all at once and for too long.

• Invite Jay to feel a sense of controland self-pride by helping him tolearn to take over more of his owngrooming needs, like shaving.

• Take some time to explain to Jaywhat you will be doing and why.Devise a “social story” which youcan review in preparation forgrooming, or seek out a book forhim geared to the subject.

• Consider taking a step back byhiring someone skilled at groom-ing and less emotionally involvedto take over these functions.

• Suggest that your husband groomhimself in front of your son androle model his own relaxedresponse while doing so.

Do you have a question to Ask the Expert? Please send all queries to Veeta Engel [email protected]

Veeta Engel is a psychotherapistin private practice specializing in individual psychotherapy andmarital and family therapy. She isa clinical member of the AAMFTand the OPTSQ. She is a teacherand supervisor at the ArgyleInstitute of Human Relations and is a consultant to JewishFamily Services.


FAMILY

Finding a middleground is associatedwith seeking balance

and the need for compromise.

by EMMA LEGAULT

Few films are accurate in theirportrayal of the life of anexceptional family in a way

that resonates with parents of chil-dren with special needs. A NationalFilm Board of Canada documentarystands out in its ability to do so. The Ties that Bind follows the Jordanfamily, Ottawa natives whose sonChris has cerebral palsy, mild devel-opmental delays, Tourette syndromeand visual impairment, over a periodof three years. The film exploresmany of the challenges that excep-tional families face, capturing theincredible sacrifices that familymembers make in order to accom-modate and support an exceptionalchild. In particular, it highlights thestruggle both for Chris and his familyin balancing his need to be takencare of and his need for autonomy.

Chris, 27, is an intelligent andarticulate young man who refuses to

think of himself as “special”. He dis-likes being surrounded by fellowexceptional people, preferring todisassociate himself from the label-ing that defines them.

Despite his dependence on them foremotional, financial and instrumen-tal support, Chris wishes to live awayfrom his family. In their quest tohelp him achieve this goal, theJordans consult an advocacy groupin Ontario. They are matched with afacilitator who strives to help themput the necessary supports in placeand Chris is forced to confront his own discomfort around otherexceptional people as he attempts tocreate new friendships.

The family has its doubts as doesChris himself about the likelihoodof his success in the transition awayfrom them. They worry that he willbe unable to sustain the secure net-work of friends, caregivers andresources necessary to go out on hisown. Chris's father, Bill, is skepticalabout whether he is up to thechallenge observing that his son doesnot have any real friends. His olderbrother echoes these sentiments


THE TIES THAT BINDA documentary film that resonates

with exceptional families

The Jordan family: Chris (center), L to R: Meredith, Geoff, Suzanne,Kathleen and Bill.

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The Abe Gold Learning and Research Centreoffers on-site training programs designed tomeet your organization’s particular needs.

In addition to the training programs and conferences outlined in the 2005 - 2006 Education Series Program,our team of professionals and experts in the field of autismand developmental disabilities can tailor hands-on trainingprograms to meet your organization’s specific needs.

Personalized Training

Programs

For more information or torequest a specific training program, please call DerekLinetsky, Co-ordinator, at (514) 345-0210 ext. 319

doubting that Chris will ever be ableto have a girlfriend or family.

Nevertheless, it’s apparent that theJordan family is dedicated to help-ing Chris achieve his full potential.Chris is very attached to his parentsand siblings who each serve as won-derful role models of appropriatesocial behavior. He and his mother

Kathleen have a remark-able bond. Kathleen’sspecial knack for incor-porating humor and forstimulating Chris’s cogni-tive thinking, almostrivals the skills of anyprofessional.

Throughout, the strug-gles of daily life arehonestly and realisticallydepicted. Chris, who is

easily upset by changes in his dailyroutine is deeply affected by the lackof continuity when support workershired to provide some respite to hisparents continually enter and exithis life.

The film documents an unexpectedturn of events when both Bill andKathleen each need to undergoserious surgeries, adding additionalchallenges to the family. In theabsence of one or the other parentthe remaining family membersdisplay incredible restraint aroundtheir worries for Chris’s sake. Theywork to preserve his daily routine inorder to ensure his emotional stabilityso much so that they make thepainful decision to defer their firstvisit to the hospital to be at theirloved one’s bedside post-operatively.When they finally do arrive at thehospital, they retire to the back-ground enabling Chris to visit com-fortably in the new environment.

Ultimately, Chris moves into a hous-ing unit with several roommateswhere the family hopes he will learnindependent-living skills. However,the placement is temporary and theJordans continue to work on estab-lishing long term living-arrangements.

The Ties that Bind is an honest,behind the scenes glimpse at reallife in a family coping with excep-tional challenges. It will inspire allwho share the common goals of theJordan family to provide for the pro-tection and independence of theirchild. It is a film not to be missed.

The Ties That Bind (2004) is availableon DVD and VHS. For additional infor-mation visit www.tiesthatbind-nfb.ca or contact 1-800-267-7710.


FAMILY

The Ties that Bind

is an honest, behind

the scenes glimpse

at real life in a

family coping with

exceptional challenges.

COLONNADES POINTE-CLAIRE • 940, BOUL ST-JEAN514.697.4482

Adapted eye-exams for young children,children with learning challenges and special needs.

Examen visuel adapté aux jeunes enfants, aux enfants ayant des troubles d’apprentissage et aux enfants handicapés.

• Marie-Josée Caron, o.d.• Marie-Claude Provost, o.d.• Jonathan Alary, o.d.

Optométristes • Optometrists

• Jean-Sébastien Dufour, o.d.• Louise J. Hudson, o.d.• Marc Gagnon, o.d.

Caron - Provost

Centre visuel • Eye Care Centre

Chris Jordan and John Ritchie, the Director of The Ties That Bind.

Kathleen, Chris and Bill Jordan

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Disabled FablesAesop’s Fables retold andillustrated by artists withdevelopmental disabilities

Star Bright Books Inc., 2004,56 pages, $20.95

Glancing at the cover of DisabledFables, it is almost impossible not

to judge the contents of this bookbased on its introductory illustration ofpeacocks and blue jays, intricatelydrawn and painted in warm pastelcolors that offer a taste of the beautifulpaintings within. Even more remarkablethan the artwork itself is the fact that it was painted by a woman who has adevelopmental disability. Thirty-five-year-old Helen Pacheo is a member ofL.A. Goal, a non-profit organization inCalifornia that services adults with

cognitive challenges including autism,Down syndrome and mental retarda-tion. Together with 11 other L.A. Goalmembers, Pacheo participated in anagency program where each was askedto choose a fable, recount it in theirown words, illustrate it and relate it totheir own experience.

In addition to fostering a sense ofempowerment and independence ineach artist, the program encouragedparticipants to retell stories in a proper sequence, rather than in dis-jointed segments, as some people withdevelopmental disabilities tend to do.Disabled Fables is the product of theL.A. Goal program.

The superior creative talents of many of the artists surpass the skills of many “neurotypical” people. And asreaders quickly learn, many of the con-tributors foster abilities and interestsbeyond art – a number also hold collegedegrees.While some of Disabled Fables’illustrations are less sophisticated thanPacheo’s, all reflect the heartfeltdedication of their creators.

The most memorable portions of the book are the first-hand segmentsentitled “What this story means tome” in which many of the contributors

A review of sensitizing books that center around exceptional issues

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TS &Classics

I get angry at work when other employees joke about me.

One employee made a joke by telling me to mop the ceilings.

This joke got me really upset so I told him to do his work while

I did mine. I controlled my anger by not raising my voice because

I could have lost my job. Losing my job would have been worse than

getting stung like the bear [in the fable The Bear and the Bees].

- Disabled Fables

articulately convey their pain aroundbeing treated differently by othersbecause of their disabilities.

Disabled Fables also includes aForeword by actor Sean Penn whovisited L.A. Goal in 2001 in preparationfor his lead role in the movie i am sam.Penn’s “seal of approval” is only anadded bonus in a book that mostcertainly stands on its own.

Teaching by Design

by KIMBERLEY S.VOSSWoodbine House, 2005,

334 pages, $48.95

Following the birth and diagnosis of her daughter Ashley with Down

syndrome in 1984, Kimberley Voss was inspired to create educational

materials that would help Ashley andothers with cognitive, sensory andphysical disabilities to learn andflourish. Voss’s efforts resulted inTeaching By Design, a comprehensivemanual for parents and educators thatteaches readers how to use their PCsand MACs to create custom-madetools for exceptional learners.

Designed for computer novices andpros alike, Teaching By Design is dividedinto three easy-to-follow components.In the first segment,Voss highlights theimportance of controlling variables suchas text, images, layout and media whendesigning and presenting programs forpeople with special needs. When dis-cussing the use of symbols, for example,she underscores the need to be selec-tive with their application and suggeststhat if a symbol of a book is used torepresent the concept of reading, forinstance, the same symbol should notbe used to represent a library due toits potential to confuse the student.

In the second part, Voss delves into avariety of graphic programs, includingMicrosoft PowerPoint, AppleWorks,

CorelDraw, FreeHand, Illustrator andPaint Shop Pro and gives readers amini-lesson in graphic designing.

Finally, Teaching By Design features step-by-step instructions and diagrams forover 40 materials including LottoBoards, Flash Cards, Menus, MatchingGames, Visual Schedules, InteractiveBooks and Telling-Time Worksheetsgeared to help teach language, math,communication, visual perception,reading, handwriting and self-help skills.A color photo insert at the back of thebook features examples of finishedproducts and an accompanying CD-ROM contains pre-designed templatesto facilitate the tools’ creation.

The highlight of Teaching By Designis Voss’s heartfelt introduction in which she elaborates upon her daugh-ter’s challenges, her own feelingsaround Ashley’s diagnosis and hercommitment to help her thrive in spiteof overwhelming physical, cognitive and emotional obstacles.

Teaching By Design is available throughMonarch Books at www.monarchbooks.ca


FAMILY

CENTRE MDC

Harriet Greenstone, Ph. D., OPQ

Director

Psychologist, Psychologue

CENTRE MDC - MULTIDISCIPLINARY CARE CENTRE

189 Hymus Blvd. #311, Pte. Claire, Que. H9R 1E9

Tel.: (514) 695-8118

[email protected]

CU

RR

EN

TS &Classics

by KIM CORNISH, Ph. D.

With a prevalence of 1 in 3500boys and 1 in 8000 girls world-

wide, Fragile X syndrome consti-tutes the most common cause ofhereditary developmental delay inchildren. (Girls diagnosed with thesyndrome usually have milder levelsof intellectual difficulties than boys,however.) Caused by an abnormalexpansion of DNA just above the tipof the X chromosome's long arm,Fragile X occurs across every cultureand is not related to the age of themother at the time of conception.

Diagnosis of Fragile X

In 1991, a DNA test called theFragile X Mental Retardation - 1(FMR-1) wasintroduced.The test,w h i c hd e t e c t sFragile Xsyndromewith a 99percent rate ofaccuracy, is routinelyconducted on a blood sample. It is important that when one family member receives a Fragile Xdiagnosis, that the remaining familymembers be tested as well. It is espe-cially important for carriers to seek

genetic counseling should they wishto bear children.

How is Fragile X inherited?

Fragile X can be inherited fromeither parent who carries an abnor-

mal copy of the gene on their Xchromosome. Typically, carriersof Fragile X syndrome are them-selves unaffected and experience

neither intellectual impairmentsnor academic challenges. Since theFragile X gene is on the X chromo-some, a father cannot pass on anyversion of the gene to his sons; afather can only pass on a Y chromo-some to his male offspring. A fathercan, however, transmit an X chro-mosome to his daughter, who will

consequently be a carrier of thegene as well. When the Fragile Xgene (FMR1) is passed on from amother to her children, the genemay become dramatically altered tothe point where it is unable to workproperly. When this happens thegene produces too little or none ofthe protein coded for it. Althoughthe exact function of this protein isnot yet fully understood, it is knownto be critical to early intellectual andcognitive development.

Autism vs. Fragile Xsyndrome: Ways in whichthe two overlapCurrent research estimates that 15to 25 percent of children who haveFragile X are often misdiagnosed ashaving autism due to the disorders’many overlapping features whichinclude language-delays, echolalia1,and perseverative (repetitive) speechalongside poor eye contact andstereotypic movements such ashand-biting and hand-flapping.Many children are also overly-sensi-tive to environmental stimuli likesudden noises (e.g. sirens or alarms),movements, or changes in routinesuch as moving from one classroomto another. Anxiety provoked bysensory overload can often lead tohyper-arousal which in turn can lead to outbursts of aggression.

Fragile X Fragile X What is so fragile about

s y n d r o m e ?

This photograph of siblings Andrew, 9,& Katherine, 7, (both of whom haveFragile X syndrome), demonstrateshow subtle the physical features ofFragile X syndrome really are.

1 Echolalia refers to repeating back words or sentences rather than responding to them. For example, if a child with echolalia is asked, “Is it sunny outside?” he may reply by saying, “Is it sunny outside.”

EXCEPTIONALFAMILY • Summer 2006 35

Autism vs. Fragile XSyndrome: SignificantDifferences

The physical features, social, behav-ioral and academic impairmentspresent in people with Fragile X,differ from those in people withautism. Recognizing these featuresis critical in helping clinicians toproperly diagnose the syndrome asearly as possible so that effectiveeducational and clinical interven-tions can be implemented from ayoung age.

1. Physical Features

Physical features that characterizethe condition include an elongatedface, large prominent ears and fore-head and in males, macroorchidism(enlarged testicles) post-puberty.However, the wide variability inmanifestation in both males andfemales, makes a diagnosis based on physical features alone almostimpossible. It is precisely because of their “normal” appearance thatmany children are not identified ashaving Fragile X until relatively latein their development.

2. Social Impairments

In contrast to people with autismwho often have difficulty relating to others and understanding theconcept of emotions and empathy,people with Fragile X often expressthe desire to communicate andsocialize with others, however theirrelationships can initially be hinderedby extreme shyness. Once they beginto feel at ease with social partners,early social relationships can be quiterich and productive for children withFragile X from an early age.

In addition, while many people withautism are severely impaired in theirability to understand the intentions

and beliefs of others, people withFragile X have a greater potential todevelop relatively good “theory ofmind”2 skills as they mature.

3. Academic and Behavioral Challenges

Both academic and behavioralchallenges feature prominently inFragile X syndrome, impacting on

both parents and teachers. Thepattern and severity of these prob-lems distinguishes them from otherdevelopmental disabilities. In theacademic realm, some of the chal-lenges particularly in males include:

• Delayed language-acquisition andrepetitive (perseverative) speech.

• Weak short and long-term memoryfor abstract information such asmental mathematical calculations(like 2 x 6) can often lead to anxi-ety around mathematics.

• A lack of spatial awareness andvisuo-motor coordination can oftenresult in many children with FragileX appearing clumsy and awkward.

• Difficulty maintaining attentionover a long period for tasks thatrequire abstract reasoning (suchas math).

• Extreme difficulty performingsequential tasks (such as problem-solving tasks).

• Impulsive decision-making.

• The ability to becoming easilydistracted in class by sudden noises,movements and routine transi-tions when attempting to focus ona given task.

In the behavioral realm, strugglesco-existing with the academic onesaffect both boys and girls as follows:

• Feelings of being overwhelmed bythe demands created by socialinvolvement, novel or unexpectedsituations and changes, even by thecommon transitions of daily life.


FAMILY

John Dowson Ch lpExecutive Director 60 Harrison DriveNewmarket Ont.L3Y 4P4

LifeTRUST Planning

[email protected]

tel: (905)836-5460 fax: (905) 836-5458mobile: (905) 868-7870toll free: 1-800-638-7256

Committed to improving the living standards of people with a disability

www.life-trust.com

2 ‘Theory of mind’ refers to the ability to understand the mental states and intentions ofothers and predict behavior.

Andrew at 6 years old.

• Attention and hyperactivity prob-lems, the severity of which oftencontribute to a clinical diagnosisof Attention Deficit HyperactivityDisorder (ADHD).

Educating a child with Fragile X

Recognizing that children withFragile X syndrome have uniqueneeds is crucial in helping themachieve their academic potential. Atschool, for example, a child who iseasily distracted by other childrenand extraneous stimuli may benefitfrom a classroom with less stimulationand clutter and a desk placed awayfrom the corridor where the sight ofbuzzing students may pose an addeddiversion. Utilizing visual reminderssuch as a timetable, symbols andphotographs may give children asense of predictability and control andreduce the anxiety that some experi-ence during transition periods, such aswhen a teacher switches between onesubject and another, or when studentshave to return to the classroom afterrecess. Additionally, presenting tasksin simple, bite-size chunks rather thansequentially will significantly help achild with Fragile X to remember anassignment and perform it success-fully. Finally, as good imitators,people with Fragile X would certainlybenefit from seeing other studentsmodel socially and academicallyappropriate behaviors and skills.

Academic strengths

Particular strengths associated withFragile X children include:

• Good verbal skills, especiallyreceptive language and expressivevocabularies

• Strong short and long-term mem-ory for meaningful information

(e.g., story-telling, objects, names)with a particular ability to tap intoa repertoire of acquired knowl-edge and vocabulary.

• Strong visual memory. People with Fragile X also have good face-recognition and emotion-recognition skills.

• If an activity is meaningful andnon-sequential and utilizes, forexample, computer-based learning

techniques, people with Fragile Xcan focus for long periods of timewithout experiencing too muchdistraction or hyper-arousal.

Communication betweenparents and educators

Effective communication betweenparents and educators is paramountif a child with Fragile X is to developto his or her maximum potential.Often, parental expectations arounda child’s academic success exceedthe child’s actual performance andtrajectory in the classroom. It istherefore important that parentsand teachers collaborate to developrealistic goals and an IndividualizedEducation Plan (IEP) in order toavoid potential disappointment.Above all, it is vital for all adultsinvolved to recognize that everychild’s capacity to learn is unique.

While there are many internetresources available on Fragile X, few are uniquely Canadian andfewer still are bilingual. To meet thisneed, FXCARE (Fragile X CanadaResearch & Resource Unit) will belaunched this summer. FXCARE is a web-based resource site that will be available in both French andEnglish and specifically written withparents and teachers in mind. For additional information, visitwww.fragi lexcanada.com orwww.kimcornish.com

Dr. Kim Cornish is a Professor and Canada Research Chair ofEducation and Neuropsychology inthe Faculty of Education, McGillUniversity, the Director of FXCAREand the Director of McGill's Child Laboratory for Research and Education in DevelopmentalDisorders.


FACULTY OF EDUCATIONMcGill Youth Study Team

Help make a difference!The McGill Youth Study Team is a specialized group of educational researchers committed

to the study of attention and problem solving among persons with Autism SpectrumDisorders, Down syndrome, and other genetic syndromes. We are looking for children

(5 years and older), adolescents and young adults to participate in our studies that includecomputer and problem solving games. Gift certificates are provided to all participants.

If you and your child are interested in participating and/or would like more information please contact Tammy Dawkins, lab coordinator, at (514) 398-8273 or [email protected]

Committed to the excellence in the study and education of all children

All research carried out in the MYST lab is supervised by Dr. Jake Burack

Katherine at 4 years old.


FAMILY

The bodies of the blind grow more and more conditioned.

We rebound from the world, suck up the sting, and push ahead.

It seems inevitable in our character to carry on,

like the Terminators of this world. I defer to the wisdom of the blues.

As my friend Harmonica Slim says, when I’m particularly bruised or gashed,

“Well kid, you ain’t good looking but you’re hard to kill.”

- Ryan Knighton

A tribute to people who have achieved in spite of overwhelming challenges

Inspiration

Author, editor, lecturer, published poet, co-founder of TADS magazine, person who is blind,college teacher of English, contemporary literature, pop-culture, rhetoric and creative writing,

freelance writer, producer and performer of radio monologues and documentaries about blindness for the CBC, husband, car aficionado,“comedian”

Ryan Knighton

Inspiration


Acomprehensive Life Plan includes a

Lifetime Lifestyle NeedsPlan, which basically com-prises a detailed list of instruc-tions around your child for his orher future caregivers. In many ways,planning for your child’s futurelifestyle needs is similar to preparingto go away on a trip, except in theformer case you’re leaving with theknowledge that you’re not going toreturn! Think back to a time whenyour child was young and you wereplanning to go out for the eveningor away for the weekend. Whatinstructions did you give to the per-son who looked after your child?Chances are you informed the care-giver about your child’s bedtime, thetype of food he liked for his eveningsnack, how she liked to be tucked in,any medication he may have beentaking and how it was to be adminis-tered, any special behaviors or needsthat the caregiver ought to havebeen aware of and who to contact incase of an emergency.

By the same token, it is important togive your child’s future caregivers asimilar list of instructions so thatthey will know how to properly carefor your son or daughter accordingto his or her specific needs.

I am reminded of a meeting I recently had with an exceptional

family who was interested in creatinga Life Plan for their 27-year-olddaughter, Emily. After reviewing herfamily’s circumstances, the girl’smother concluded, “What I’m reallyworried about is what’s going tohappen to Emily after her dad and I are gone.” To which her marriedson, who was present with his wife,replied, “Don’t worry mom, Helenand I will look after Emily. We know

her.” Rather than beingreassured, Emily’s mother

exclaimed, “You don’tknow Emily at all! You’re

only here on the weekends!”

As with Emily’s case, while your childmay have a rapport with a number of relatives, friends, caregivers andsupport workers who may be suitable to care for your child after you’vepassed away, chances are you knowyour child better than anyone else –having spent the most consistenttime with him or her since birth.

As such, everything you know aboutyour son or daughter’s special needs,preferences and dislikes and themany other elements that comprisehis or her daily life and activities will die along with you unless youtransfer them to your child’s futurecaregivers, trustees and guardians.Compiling an explicit list of instruc-tions for your child’s future care-givers will help to ensure that he orshe will lead as happy, healthy andindependent a life as possible afteryou are gone.

When developing your child’sLifetime Lifestyle Needs Plan youmay wish to consult with your child(if possible), other family membersand any community support workerswho know your son or daughterwell. Although the plan you devise

Life Plan Essential #2: Compile a list of instructions for future caregiversEF presents the second article in its exclusive four-part series on

Creating a Life Plan for Children with Special Needs

Everything you know aboutyour son or daughter’s

special needs, preferencesand dislikes and the manyother elements that comprise

his or her daily life andactivities will die along

with you unless youtransfer them to your child’s

future caregivers, trusteesand guardians.

by JOHN DOWSON, Ch lp

is not an official legal document and does not form part of your lastwill and testament, it is just as impor-tant as your last will and testament.

A detailed Lifetime Lifestyle NeedsPlan is an invaluable guide to yourchild’s future caregivers, trusteesand guardians. It can be formal and

generalized (i.e., “To Whom It MayConcern”), or addressed to a specificindividual. Moreover, it can behandwritten, typed, burned on a CDor DVD, or recorded on an audio or videotape.

Be sure to include the followingbasic information in your list:

• Your child’s full legal name (andany nicknames he or she may go by), date of birth and socialinsurance number.

• Names of relatives, friends, guard-ians, trustees and others with whomyour child has a special relation-ship and or who may have partici-pated in your final arrangements.

• Your child’s detailed medicalhistory including any seizures,speech or mobility issues, namesof physicians, dentist and thera-pists, allergies, medications andhow they are administered, over-the-counter drugs and decisionsaround birth control.

• Information about yourselves -the child’s father and mother -and your marital status, yoursiblings, or the child’s siblings’names and ages and their homeaddresses, phone numbers and e-mail addresses.

• Your child’s current and past living-arrangements, what worked andwhat didn’t and any plans youhave made or envision for yourchild’s future living arrangements.

• Your child’s Individual EducationPlan (I.E.P), and his or her daily-living and self-care skills, includinghis or her ability to care for per-sonal hygiene and dressing. Whodecides what your child wears?

• Any domestic activities that needto be performed for your child,like shopping, cooking, house-keeping and laundry.

• Your child’s needs around trans-portation, education, day pro-grams, social and recreationalactivities.

• Which religion your childbelongs to, if any. List any reli-gious leaders, and the extent ofyour child’s participation. List therights and values that should beaccorded your child and anoverview of your feelings andvision for your child’s future.

• Any finances and assets, bankaccounts, expenses, wills, safetydeposit boxes, life insurance poli-cies, details around your funeraland whether it has been pre-paid,income tax information and anytrusts. Include the names,addresses and phone numbers of all advisors such as lawyers,accountants and financial advisors,and a list and location of all perti-nent documents and records.

While only one parent may want todo the actual writing, both may wishto sign the Lifetime Lifestyle NeedsPlan. Make multiple copies of it,hold a family meeting and reviewthe plan with your child if possibleand all of your child’s future care-givers. Place a copy of your child’sLifestyle Needs Plan and any accom-panying documents such as birthcertificates, Medicare cards andpassports in a secure place and puta second copy in a binder or folder

where it can easily be accessed and reviewed. Update your child’sLifetime Lifestyle Needs Plan shouldhis or her circumstances change.You may only need to revise certainpages and not the entire document.

Finally, remember that parents don’tplan to fail they just fail to plan!

John Dowson, Ch lp, is theExecutive Director of LifeTRUSTPlanning, a national company thatserves exceptional families acrossthe country.


FAMILY

END-OF-SUMMER CAMPFor kids with special needs ages 5-17Monday-Thursday August 21-24, 20069:30 a.m. - 3:00 p.m.Fee: $100

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3737 Van Horne Ave., Montreal, Quebec, H3S 1R9 • Tel: (514) 735-2255 • www.friendshipcircle.ca

Of the hundreds of fictionalstorybook characters that have

emerged over the years, few are asmemorable and beloved as AmeliaBedelia, the bewildered housekeeperfrom the series that bears her namewho executes all instructions exactlyas they are given. Whether at a base-ball game where she literally stealsthe bases or in the kitchen whereshe actually dresses a chicken,Amelia Bedelia’s only salvation in aworld where social acceptance iscontingent on the ability to under-stand symbolic language is herendearing personality.

Although Amelia Bedelia is the ima-ginary brainchild of authors Peggyand Herman Parish, her ignoranceof social rules and inability to graspfigurative language typifies many real people with Autism SpectrumDisorder (ASD), who do not knowwhat renowned clinician and author1

Dr. Brenda Smith Myles calls the“Hidden Curriculum” – knowledgethat is not formally taught to “neuro-typical” children and youth, but isacquired via incidental learning.

“The Hidden Curriculum is a set ofunwritten rules that everyone knows,”explained Smith Myles at a recentconference in Montreal sponsoredby the Miriam Foundation’s AbeGold Learning and ResearchCentre. “It comprises any informa-tion that seems obvious, or assumedand it’s so important because viola-tion of these rules can render a

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1 Dr. Smith Myles is the author of numerousbooks, including The Hidden Curriculum:Practical Solutions for UnderstandingUnstated Rules in Social Situations (ShawneeMission, KS: Autism Asperger PublishingCompany, 2004) which she co-wrote withM.L. Trautman and M.L. Schelvan.

An introduction to

the Hidden Curriculum

EXCEPTIONALFAMILY

“Where should I take my seat?” asked Amelia Bedelia. “Should I take it out to the playground?”

“Good morning class,” said Miss Wilson. “The bell has rung. Please take your seats.”

- Amelia Bedelia

Goes Back to School,

by HERMAN PARISH

by AVIVA ENGEL

• Summer 2006 41

Amelia Bedelia’s

ignorance of social rules

and inability to grasp

figurative language

typifies many real people

with ASD, who do not know

the “Hidden Curriculum.”

person a social outcast,” said SmithMyles, an associate professor in theDepartment of Special Education atthe University of Kansas and co-direc-tor of the department’s Asperger syn-drome and autism graduate program.

The Hidden Curriculum’smany applications

According to Smith Myles, theHidden Curriculum’s applicationvaries depending on the age, genderand culture of the person you areteaching. The curriculum aims toteach children and adolescents withASD skills that will facilitate success-ful social interactions with differentpeople in various environments. It also teaches daily-living andproblem-solving skills and strives tohelp children acquire self-awarenessand self-respect.

“Children with ASD tend to general-ize what they are taught in everysituation,” she said. “They need to understand that the HiddenCurriculum varies depending on dif-ferent situations and environments.The way you interact with colleaguesis different from the way youinteract with peers, and the way a child interacts in the classroom isdifferent from the way he interactson the schoolyard.”

In fact, one would be hard-pressedto find an environment whereknowledge of the Hidden Curri-culum is unnecessary. As SmithMyles pointed out, unwritten socialrules apply at home and school, atthe library, when dating, at restau-rants and theatres, at camp, at publicswimming pools, restrooms andshowers, at work and in doctors’waiting rooms – to name a few.

“There’s even a Hidden Curriculumaround the legal system,” said SmithMyles. “People with ASD are seventimes more likely to come intocontact with the legal system thanneurotypical individuals. Yet this isan area that we do not teach [peoplewith ASD to deal with appropriately].I know a man with ASD who hadbeen speeding and was pulled overby a police officer. The officer askedhim for his registration and driver’slicense, which the man gave him.The officer went back to his vehicleand the man drove off. He thoughtthe transaction was over. The officerdid not say ‘please wait here’,because that was assumed know-ledge. A police chase ensued andluckily no one was hurt.”


FAMILY

Who cares for people

with special needs?

Miriam does!Miriam Home and Services provides rehabilitative,socio-professional and residential services to more than600 Montreal-area children, adults and seniors with intellectual disabilities regardless of nationality, religion, language or socio-economic background.

Our goal is to help exceptional individuals integrate into the community and assistthem to live socially-active, productive lives.

In support of this initiative, Miriam Foundation, our fundraising arm, launched anational quarterly publication called Exceptional Family in the fall of 2005 to serve as a public resource for exceptional individuals and their families residing across Canada.

For more information on how you can support such programs, contact the MiriamFoundation at (514) 345-1300 or visit our web site - www.miriamfoundation.ca.

The way you interact withcolleagues is different fromthe way you interact with

peers, and the way a child interacts in theclassroom is different

from the way he interactson the schoolyard.

Unwritten social rules forchildren and adolescentsFor children and adolescents, theclassroom represents a particularsetting where ignorance of theHidden Curriculum can have pro-found repercussions on a student’ssocial and academic success. “If ateacher [tells a student] ‘Becky, stoptalking’, a child with ASD will starttalking. And when he starts talking,he [gets] disciplined. He thinks theteacher’s unfair, because when theteacher said ‘Becky stop talking’, hedidn’t understand it to mean every-one in the class stop talking.”

Smith Myles also gave examples ofthe Hidden Curriculum’s relevance

to adolescents. “Children with ASDare taught, you go to the library to get a book. If you want to talk, you speak quietly. When you are a teenager, going to the library is a major social activity. Books havenothing to do with it. You’re thereuntil it closes and somebody’sparent has to pick you up, or you’re kicked out. How loudly doyou talk? As loudly as you canwithout being kicked out. Teenagerswith ASD need to understand theunwritten rules for going to thelibrary with peers.”

Amusingly, Smith Myles also touchedupon the Hidden Curriculum forteenagers around cursing in school.“And that is, look around first,” shesaid. “If there is an adult [present],do not curse. I am not advocatingcursing. But what happens is thatchildren with ASD quite often getcaught cursing more than theirneurotypical peers. And it’s proba-bly not to say they’re cursing morethan their peers, it’s just that theyare letting loose with this flow ofcolorful words without understandingthat they shouldn’t be doing it infront of adults.”

Precautionary Measures

Despite the sensitivity and humor-ous nature of many of the items thatcomprise the Hidden Curriculum,Smith Myles emphasized the needfor children and adolescents withASD to learn accepted protocol inplaces like public restrooms andshowers particularly as safety precau-tions. “What’s the first thing we


Examples of Hidden Curriculum Items to teach children with ASD for school,

from Dr. Brenda Smith Myles:

• If one small incident occurs and the teacher corrects you, it does not mean the entire day is bad.

• You should talk to teachers in a pleasant tone of voice because they will respond to you in a more positive manner.

• If a teacher gives you a warning about behavior and she wants you to stop, you’re probably not going to get in trouble but if you keep

doing the behavior, you’re probably going to get in trouble.

• Do not tell a teacher he or she smells and needs to wear deodorant.

• When a teacher tells another student to stop talking, it is not a good idea to start talking to your neighbors,

since the teacher already expressed disapproval of that action.

• Not all teachers have the same rules for their class.

• When someone else is getting in trouble it is not the time to show the teacher something.

teach kids with ASD? Weteach sustained eye con-

tact to ensure that weknow they are listen-

ing. When a childgets into a situation

where he or she isshowering in agroup setting, he orshe will sustain eye

contact,” said Smith Myles. “A boywith ASD, who we have taught to besocial, will orient toward an adultmale in the men’s room. What if the man is a sexual offender? Thebehavior communicated by thechild tells him he has a victim,because he knows that that boy doesnot know the rules. And if someonetells a child with ASD not to tell[about having been abused] he willnot. Children who look different

have the potential to be victimized.That’s very serious.”

Similarly, Smith Myles highlightedthe dilemma of children and adoles-cents with ASD learning social rulesprimarily from female educators.“Most children with ASD are boys andmost are taught social skills by womenwho don’t know men’s cultural andsocial rules and interactions. Forwomen, going to the bathroom is asocial occasion. When we get therewe will talk. Men do not talk in thebathroom and do not orient towardseach other. Boys need to learn appro-priate social behavior from men.”

Because the Hidden Curriculumcomprises innumerable lessons thatneed to be taught, Smith Mylesrecommends that educators andparents strive to introduce one newHidden Curriculum item daily. “Atschool, you can identify one HiddenCurriculum item, write it on theboard and spend the first twominutes of class talking about therules. At home, if parents select oneHidden Curriculum item per day, you will cover 365 per year. Grab the teachable moment. If you’re atthe mall and you’re a man with yourson and you’re going into the men’s room, spend some time talk-ing about it and draw some actualpictures so the child understandswhat it is he’s supposed to do. Modelthe appropriate behavior.”


FAMILY

• Do you feel that you need totalk to other parents whounderstand what it’s like tohave a Special Needs child?

• Do you want to share your expe-riences with other parents?

• Do you want to get supportfrom other parents and professionals to help you with

the daily struggles of dealingwith your special child?

• Do you want a night out to celebrate the successes of yourSpecial Needs child with thosewho can appreciate theseachievements?

If you answered YES to any of these questions, a Parent

Support Group can offer you thehelp and support you need.

Abby Kleinberg-Bassel, B.A., M.Sc., Ed.Special Needs Consultant

PARENT SUPPORT GROUP

For information, please call:

Complete discretion and confidentiality is assured on all inquiries

for parents of children with Special Needs

email: [email protected] • 5250 Ferrier, Suite 604

(514) 313-2010

2 SESSIONS BEGINNING SOONSPACES LIMITED.

Choice between:

Mom & Dad group or Moms only.

Daytime or evenings available.

Most children with ASDare boys and most aretaught social skills by

women who don’t knowmen’s cultural and social

rules and interactions.Boys need to learnappropriate socialbehavior from men.

Dr. Brenda Smith Mylesrecommends thefollowing books to help teach theHidden Curriculum:

• Bringing Up Parents: The Teenager’s Handbookby ALEX J. PACKER, Ph.D.

• How Rude! The Teenager’sGuide to Good Manners,Proper Behavior and Not Grossing People Outby ALEX J. PACKER, Ph.D.

• The Amelia Bedelia Treasuryby PEGGY PARISH

• A Little Book of Manners for Boysby BOB and EMILIE BARNES

• No B.O.! The Head-to-ToeBook of Hygiene for Preteensby MARGUERITE CRUMP

• As a Gentleman Would Say:Responses to Life’s Important(and Sometimes AwkwardSituations)by JOHN BRIDGE and BRIAN CURTIS

• The Care and Keeping of You:The Body Book for GirlsAMERICAN GIRL LIBRARY

• A Little Book of Manners:Courtesy and Kindness for Young Ladiesby EMILIE BARNES

I am crippled. I am handicapped. I am physically-disabled. I am

physically-challenged. I am a personwith a disability.1 Come to think ofit…what in the heck am I? Whatshould I be called? Well, frankly mypreference would be Michael, butsince we live in a society where every-one and everything seems to have alabel, I guess I have no choice but togo with the flow.

Over the years, many words andeuphemisms have been used todescribe someone who has a disability,including “different”, “unique”, “spe-cial” and most recently, “exceptional”(case in point: Exceptional Family – nodisrespect intended to my Editor!).In an effort to set the standard ofpolitical correctness and inclusion,Social Development Canada publi-shed a terminology guide in 2003called A Way with Words and Images2,geared largely for journalists as aguideline when reporting and por-traying people with disabilities in the media. However, my question isdoes it really make a difference whatwe call people with disabilities? Doesit really matter what word we use, or is it simply a question of politicalcorrectness? To find the answer, I thought I’d explore what thesewords really mean in greater detail.So I broke out the dictionary3 andtook a look!

Crippled 1: deprived of the use of a limb

and especially a leg2: deprived of capability for service or

of strength, efficiency, or wholeness

Now, if anyone was to call me a crip-ple, I would probably slap themupside the head, the definition isaccurate to some degree. My disability(to use the common term) doesdeprive me of strength and use of my legs. However, it certainlydoesn’t render me inefficient or“unwhole” in any way. Furthermore,the problem is that the word crippledtook on an offensive and derogatoryconnotation as individuals increas-ingly applied it to whole persons(i.e. You are a cripple; thereforeincapable of service) as opposed tothe specific body part in question(i.e. Your leg is crippled; therefore itspecifically is incapable of being ofservice, at least to some degree.)

Handicapped 1: put at a disadvantage

While the term handicapped is stillfrequently employed in many circles,it too has been dismissed as aninappropriate label due to its politi-cally-incorrect, offensive overtone.Like the term crippled, it too refers to the generalization of an entireperson rather than the particular

issue he or she is facing. Does mydisability put me at a disadvantage?It depends on what we are talkingabout. If you are asking me to run amarathon, yes, I am at a pretty bigdisadvantage. However my disabilityhas absolutely no bearing on my ability to achieve scholastically,my ability to work efficiently as an accountant, my ability to haverelationships with peers, friends ormembers of the opposite sex.

Moreover, the term disadvantaged isalso applied when describing certaindemographic groups, like peopleliving below the poverty line, forexample. Does that make living inpoverty a type of handicap? Doesthat mean that people living belowthe poverty line are equally eligibleto receive stickers enabling them topark in accessible parking spots?

Disabled 1: to deprive of legal right,

qualification, or capacity2: to make incapable or ineffective;

especially: to deprive of physical,moral, or intellectual strength

Upon reading this, I suddenly real-ized why many people view those of uswith disabilities as incapable or infe-rior. Based on the above definition,once someone has a disability, theyare seen as incapable or ineffective.

A column dedicated to Living & succeeding with a disabilityI can

Sure

What’s in a Word? Fair Portrayal vs. Political Correctnessby MICHAEL LIFSHITZ

1 For those of you who didn’t read my introductory article (and if you didn’t, what were you thinking?!), I was born with a condition called Multiple Congenital Musculoskeletal Abnormalities.

2 http://www.sdc.gc.ca/en/hip/odi/documents/waywithwords/09_terminologyGuide.shtml

3 All definitions are taken from the Merriam Webster Dictionary Online http://www.m-w.com

EXCEPTIONALFAMILY • Summer 2006 45

While I am the first to concedethat I have difficulty or am inca-pable of doing certain things(rock climbing for one), there are plenty of things that I amcapable of doing. So again, theterm disabled seems to be both aninappropriate and unfair label.

Challenged 1: to make or present a challenge

While this term screams politicalcorrectness, it is far from accuratein my view; asking someone toclimb Mount Everest is a physicalchallenge. Solving a complex mathproblem might be intellectually-challenging for some. Every oneof us faces challenges on a dailybasis. Life is a challenge. Doesthat mean we all have a disability?While there are those who arguethat everyone has some sort ofdisability (using disability to meansome sort of weakness/issue), I have a problem with that argu-ment: If everyone has a disability,where the heck am I going to parkat the mall?

Just a tad discouraged in myquest, I decided to delve into the terminology put out by Social Development Canada.Their advice: Don’t refer to some-one as disabled, but rather as aperson with a disability.

Wow…I am a person. There is a novel concept. Maybe they areon to something here… I am a person with a disability. In the same way that I have brownhair, or green eyes, I have adisability. It is just another part of me. Yes, it does affect me, but it does not define me. That is the whole point I try to make to people daily. I am more thanjust the disability… I am a person…with a disability.


FAMILY

ONGOINGSpecial Needs NetworkMontreal’s Special Needs Networkoffers confidential support, informationand advocacy for exceptional families,caregivers and professionals. 2100 Marlowe Ave., 5th Floor,Montreal, QC. Free. (514) 736-2273or (877) SNN-AIDE outside of Montreal or [email protected]

__________________________ONGOING: Children Sought for Integrated Play GroupMontreal’s Yaldei DevelopmentalCentre is recruiting “mainstream”children and children with autism ages4-7 to join an exciting after-school play-group that will integrate “expert” and“novice” players in order to encourageappropriate social and play skills andfriendship-building. Information: Leila Suckewer or Fiona Smith @ (514) 279-3666 ext. 241 [email protected]

__________________________AUGUST 22-26: World DownSyndrome CongressThe 9th World Down SyndromeCongress invites individuals withDown syndrome, their families andprofessionals to discuss issues includingadvocacy, education, health, socialpolicy and more. The CanadianDown Syndrome Society will be spon-soring two events during the Congress:the World Advocacy Day (co-spon-sored by the CDSS and the NationalDown Syndrome Society) and the CDSSDinner and Dance, a celebration toclose the Congress events. VancouverConvention and Exhibition Centre,999 Canada Place, Vancouver, B.C.Students: $160, Professionals: $575,Family Members: $400, Participantswith Down syndrome/Siblings (ages 13 and up): $120, Children’sProgram (5 years and up): $140.Information: (604) 681-5226 or visitwww.wdsc2006.com and www.cdss.ca.

SEPTEMBER 9-10: 47th AnnualOutdoor Art Exhibition and SaleThe West Island Association for theIntellectually Handicapped (WIAIH) in conjunction with the LakeshoreAssociation of Artists presents the 47thAnnual Outdoor Art Exhibition and Sale.One-third of the sales will be donated toWIAIH. Entertainment & refreshments.10 a.m. to 5 p.m. Pointe-Claire CulturalCentre, Stewart Hall, 176 LakeshoreRoad, Pointe-Claire, QC (Parkingavailable at the Plaza Pointe-Claire 269 St. John’s Blvd with shuttle serviceto and from Stewart Hall) Information: WIAIH @ (514)694-7090.

__________________________OCTOBER 25- 27Autism 2006 - Geneva Centre forAutism International SymposiumThe Symposium will provide a cross-section of perspectives on the most recent research and information on evidenced based best practice.Topics include bio-medical and neuro-biological research, IBI, social skills,communication, Asperger’s Disorder,and more. Speakers from Canada,U.S., Great Britain, and Australia. Oct. 25: Registration 7:30 a.m., sessions9-4: Registration 6:30 a.m., sessions 9-5. Metro Toronto Convention Centre,255 Front Street West, Toronto, ON.Parents: $150-$495, Professionals: $295-$700. Information and registration:Ginny Kontosic @ (416) 322-7877 ext. 516 or [email protected] or visit www.autism.net.

A compilation of upcoming community events of interest

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contact us at [email protected].

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Exceptional Family

on VoiceprintEF airs on Saturdays and

Sundays at 2:30 p.m. on the“Ability Today” program.

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