Choosing Home Deciding to Homeschool With Asperger's Syndrome

Choosing Home

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Choosing HomeDeciding to Homeschoolwith Aspergers Syndrome

Martha Kennedy Hartnett

Foreword by Stephen Shore

Jessica Kingsley PublishersLondon and Philadelphia

Cover image: reproduced by permission of Megan Miller

All rights reserved. No part of this publication may be reproduced in any material form(including photocopying or storing it in any medium by electronic means and whether ornot transiently or incidentally to some other use of this publication) without the written

permission of the copyright owner except in accordance with the provisions of theCopyright, Designs and Patents Act 1988 or under the terms of a licence issued by the

Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1T 4LP.Applications for the copyright owners written permission to reproduce any part of this

publication should be addressed to the publisher.Warning: The doing of an unauthorised act in relation to a copyright work may result in

both a civil claim for damages and criminal prosecution.

The right of Martha Kennedy Hartnett to be identified as author of this work has beenasserted by her in accordance with the Copyright, Designs and Patents Act 1988.

First published in the United Kingdom in 2004by Jessica Kingsley Publishers

116 Pentonville RoadLondon N1 9JB, UK

and400 Market Street, Suite 400Philadelphia, PA 19106, USA

www.jkp.com

Copyright Martha Kennedy Hartnett 2004Foreword copyright Stephen Shore 2004

Library of Congress Cataloging in Publication Data

Hartnett, Martha Kennedy, 1951-Choosing home : deciding to homeschool with Asperger's syndrome / Martha

Kennedy Hartnett ; foreword by Stephen Shore.p. cm.

Includes bibliographical references.ISBN 1-84310-763-5 (pbk.)

1. Autistic children--Education. 2. Home schooling. 3. Asperger's syndrome. I. Title.LC4717.5.H39 2004371.04'2--dc22

2004000437

British Library Cataloguing in Publication DataA CIP catalogue record for this book is available from the British Library

ISBN-13: 978 1 84310 763 7ISBN-10: 1 84310 763 5

ISBN pdf eBook: 1 84642 171 3

Printed and Bound in Great Britain byAthenaeum Press, Gateshead, Tyne and Wear

For Anthony and PatrickThank you for sharing

the Aspergers journey with me

Contents

Foreword 9Stephen Shore

What is Aspergers Syndrome? 13Daniel W. Rosenn and Barbara H. Rosenn,Aspergers Association of New England

Preface 17

Chapter 1 Struggling 19

Chapter 2 The Road Home 34

Chapter 3 Moving Forward 42

Chapter 4 Socialization 51

Chapter 5 Making It All Work 61

Chapter 6 Practical Tips 72

Chapter 7 Burnout 85

Chapter 8 Stories and Reflections 92

Resources 109

Foreword

Choosing Home: Deciding to Homeschool with AspergersSyndrome is about the incredible courage and determinationexhibited by James along with his parents as they strive toprovide a meaningful education for their son. The storyyou are about to read makes an important and substantialcontribution to the education of people with AspergersSyndrome. Right from the first page of the preface Marthadisplays a rare talent for bringing the reader into the worldof the child with Aspergers Syndrome and his family intheir successful struggles to create an educational environ-ment where there are no learning disabilities. Throughthe lives of James and his parents Celia and John, the readerlearns of the real-life stresses, trials, and tribulations thattake place when the school environment goes wrong aswell as the successes that can be had when it is made right.

James and his family were able to hold their livestogether during the elementary school days sort of.While able to demonstrate good social skills in school,James would erupt like a volcano from pent up frustration,anger, and tension once he entered his mothers car for thedrive home. With the stresses of school rippling throughthe entire family like a tsunami, it became clear that homeschooling was necessary by middle school. Ever conscien-

9

tious and desiring to work with the school system, Celiaand John developed a plan with the superintendent tosatisfy most of the educational requirements at home whileattending to socialization goals at school. Trapped in anatmosphere of intolerance, bullying and sensory violationsin the middle school, this strategy failed miserably.

Shortly thereafter, John realized that he was desperatelyproviding support from the fringe of a negative educationsituation and, with a dramatic shift to active involvement inhis sons education, advocated for pulling James frompublic school completely. From James euphoria at beingtold of his withdrawal from his torture at school to histhank you for homeschooling me, it becomes clear thatfull homeschooling was the right thing to do. Instead of thesocial isolation feared by the superintendent occurring,James homeschooling laid the groundwork for a life ofindependence and self-determination. Empowered toprovide input into designing his own curriculum alongwith tutors who cater to his interests and strengths, Jamesflourishes in this new educational environment.Homeschooling saved his life.

As discussed by Martha, socialization for manychildren with Aspergers Syndrome is not learning aboutgetting along with others, but rather a negativity endurancetest. The homeschooling environment provided James withthe temporal, cognitive, and emotional space to learnsocialization on a more realistic incidental basis in his com-munity. As the reader will find, James learned well, butneeded academic and socialization experiences providedfor him in ways that he could process in manageable doses.

1 0 C H O O S I N G H O M E

An especially strong point of Choosing Home is that inaddition to basking the reader in the sheen of Jamessuccess, Martha insightfully describes the process of hardwork, determination, and sheer courage to stand up forwhat is right even in the face of adversity. Choosing Home isalso a wonderful guide and resource chock-full of sugges-tions on developing curriculum to make educationlearning disability-free, networking with the large com-munity of other parents involved in homeschooling,engaging child input, developing material for off days,and keeping a journal to help deal with the inevitable chal-lenges that arise from homeschooling.

As Choosing Home draws to a close Martha takes a hardlook at the realities of homeschooling ranging fromneeding to keep a realistic outlook to respecting bound-aries, and serving more as a facilitator than a didacticteacher. Finally, she drives home the point that preventingpotential burnout and caring for oneself are vital towardenabling one to take care of others.

I highly recommend this book to anyone interested inhomeschooling as well as to people wanting to know moreabout the challenges surrounding Aspergers Syndrome,the family, and education. Educating a child at home is notfor everyone, but for those in need, it can be a lifesaver.

Stephen Shore, August 2003Brookline, Massachusetts

Author of Beyond the Wall: Personal Experienceswith Autism and Asperger Syndrome

F O R E W O R D 1 1

What is Aspergers Syndrome?

Aspergers Syndrome is a recently defined, neurodevelop-mental condition which has sometimes been called mildor high functioning autism. It has been included in theDSM IV category of Pervasive Developmental Disorders(PDD), a very broad and somewhat controversial term usedto describe individuals who have 1. restricted, repetitive,and stereotyped patterns of behavior, 2. defects in commu-nication skills, and 3. significant difficulties in reciprocal,social interactions. Increasingly, PDD is being conceptual-ized as a continuum running from the most severe form ofautism (i.e., Autistic Disorder) through varying degrees ofseverity which extend to the high functioning edge of thespectrum where AS is located. While individuals with ASretain certain characteristics of more severe autism, AS ischaracterized by cognitive functioning which falls in thenormal or above average range and by generally normallanguage functioning, although there are a range of subtle,but significant abnormalities of pragmatic language invari-ably present.

Specifically, some characteristics which result in thesocial dysfunction of Aspergers Syndrome may include thefollowing: 1. inability to read non-verbal cues and facialexpressions of others, 2. poor eye contact, and 3. awkward

13

body language. These characteristics contribute to poorunderstanding of social experience.

Paradoxically, while individuals with Aspergers aresometimes brilliant in specific areas of their interest, theyare often concrete in their thinking, particularly about reallife situations. Executive functioning, i.e. understandinghow details relate to each other and to a main point can bedifficult for them. Fluid reasoning or problem-solving canalso be hard. Getting the big picture, understanding theintention of others, or shifting point of view are major dif-ficulties. Cognitive flexibility is impaired as is ability toshift sets and take a new perspective. Generalizability fromone situation to another is also problematic.

Often right-hemispheric insufficiency is present, char-acterized by non-verbal learning disabilities, difficultieswith transitions and novel, unpredicted experience, andnew situations. Indeed, difficulty with neurointegration, aproblem with integrating complex visual experience, iscentral to the disorder and is exhibited in visual-spatial andvisual motor problems present in psychological testing andin life experience. Motor clumsiness, tactile defensiveness,and hypersensitivity to light or sound are also oftenpresent.

It should be noted that individuals at this highest end ofthe autistic spectrum present very differently from eachother. Often, they exhibit only some of the most overt char-acteristics described. Some individuals have more erraticand challenging behaviors in early childhood, but havemoved up the spectrum as they mature. Consequently, athorough early history of an individual is an important partof the diagnostic evaluation for Aspergers. There is often


comorbidity with Attention Deficit Hyperactivity Disorder(ADHD), Obsessive Compulsive Disorder (OCD),non-verbal learning disabilities and depression.

Since its inclusion in DSM IV, AS has lately been diag-nosed with such increasing frequency that today manychild psychiatrists and educators are alluding to anepidemic, probably caused by better case finding, correc-tion of prior misdiagnosis, and possibly, over-diagnosis. Apositive outcome of greater publicity about the disorder isthat individuals with Aspergers Syndrome are more likelynow to receive special supports at school, home, and work.At school, such supports can include a special one-to-oneaide through the school day, modifications in homework,special tutoring, occupational therapy, physical therapy,adaptive physical education, pragmatic speech therapy, andsocial skills groups.

Programming for adults, such as modifications in thework setting, is just beginning as awareness of the disorderincreases. With support, adults with Aspergers have foundemployment in structured, predictable fields that utilizetheir strengths. Some adults seek more repetitious, narrowemployment in areas requiring minimal social encounters.Some adults marry and have children, while others livewith family or independently as adults. While accommoda-tions for the social limitations of adults with Aspergers areoften necessary, with support, these individuals can findfriendship and satisfaction in adult life. Organizations ded-icated to providing contact and educational informationabout Aspergers Syndrome have sprung up on the local,national and international levels, providing additional

W H A T I S A S P E R G E R S S Y N D R O M E ? 1 5

assistance for adults with Aspergers Syndrome to accessothers with the disorder and available resources.

Daniel W. Rosenn, MDBarbara H. Rosenn, Psy.D.

Daniel Rosenn, MD is a general and child psychiatrist inWellesley, MA, specializing in Aspergers Syndrome.Barbara H. Rosenn, Psy.D. is a psychologist in Wellesley,MA, who works with adults with Aspergers Syndrome.Both are on the Board of Directors of the Aspergers Asso-ciation of New England.


Preface

The purpose of this book is to bring an important messageto the families of children with Aspergers Syndrome (AS).The message is that homeschooling is an effective educa-tional option available to them. Many parents withAspergers children have found that, by utilizinghomeschooling, their childrens lives (and their own) havebecome happier and learning takes place with greatersuccess.

As they watch their childs self-image and confidenceimprove, parents find that the stresses of dealing with theschool system no longer dominate their own lives. In theworld of homeschooling there are no learning disabilities.You simply do what needs to be done for your child to learnin a comfortable and stress-free environment his ownhome.

Homeschooling is definitely not for everyone. It oftenmeans a change in lifestyle and parental burnout is alwayslooming. If managed well, however, home education can bea vehicle for greater learning and better social develop-ment. It offers an opportunity for you and your Aspergerschild to share a wonderful world of knowledge and love.

Most people reading this book will be the parents orcaregivers of children who have already received a diagno-

17

sis of AS. Whatever your contact with AS, remember that itis the unique people in the world who often contribute themost to it. This world needs those who see it through dif-ferent eyes. They force the rest of us to question ourselves,the way we think and the path on which we may bewalking. They cause those who often blindly follow themasses to pause and, in doing so, become more enlight-ened.


C H A P T E R O N E

Struggling

There is no doubt that many young people with ASstruggle in todays schools. Their daily academic, emo-tional, and social ordeals are often painful to witness. Eachday brings experiences which, through the lens ofAspergers, can become magnified into trauma. In an effortto help their child, eliminate stress and find a sense offamily balance, many parents of AS children are turning tohome education. Occasionally this life-altering decision ismade with the encouragement of teachers who truly careabout what is best for the Aspergers student. Whether suchsupport is present or not, learning at home is growing inpopularity as a legal and effective educational alternative.

Families who have chosen to center education aroundthe security of home report benefits to the Aspergers childthat are worth consideration. Such benefits include greaterlevels of self-esteem and responsibility, more time for

19

learning self-help skills, and a contagious enthusiasm forlearning. As the pressures associated with school interac-tions fall away, parents are able to see the AS child with newappreciation. More importantly, the student can learn at hisown pace in a respectful environment.

Signals that all is not well at school are often over-looked as parents worry about opportunities for socializa-tion and special education needs. The rewards are great forthose who notice the signals and are brave enough to trusttheir own abilities to educate and guide the Aspergerschild. Making the actual decision to choose home for edu-cation has been the most difficult step for families who longto take control over their lives. The story of James and hismother, Celia, reveals the process of making such adecision. The results of their choice are inspiring. Althoughtheir situation reached a crescendo during the middleschool years, families can be drawn to homeschool at anygrade level.

James early grades were spent at a local elementaryschool where the staff made serious attempts to accommo-date his needs. Celias recollections of this time providesharp contrast to her sons later educational experiences.

My son received an early diagnosis of PDD-NOS.1

Alert special education teachers at his schoolstumbled across a paper on Hyperlexia andthought it seemed to fit James. They brought it tomy attention. My husband and I were able to inde-pendently obtain this accurate diagnosis for ourson when he was eight. As his preoccupation withreading lessened, the diagnosis was changed to


Aspergers Syndrome. James tested in the superiorIQ range and was extremely talented in art.

James was placed with capable teachers whoworked hard to implement an IEP (IndividualizedEducational Plan) my husband and I were com-fortable with. An effort was made throughout theschool community to highlight James art talents.This was used as a way to bring him positiveattention and direct focus away from the social andsensory difficulties he had at school. There weretrying days when James was overwhelmed by theenvironment around him. He was a very bright,gentle boy but he struggled with a literal interpre-tation of language, social miscues and an obviouslack of empathy for his classmates. Trouble alwayssurfaced during recess, lunch or any time there waslittle imposed structure. Any unexpected changeof routine was also a potential problem.

My husband and I brainstormed with thespecial education team to deal with these troublespots and for the most part were able to make thedays manageable for our son. He was fortunate tohave a speech and language pathologist whoworked hand in hand with us to implementworkable strategies. As the strategies worked, hegrew more confident. His third grade teacherbecame a great advocate and friend. To this dayshe is still one of James dearest friends.

The key to success was a system of communi-cation developed between the teachers and myselfwhere we would let each other know of plansbeing used, potential difficulties or achievementsso that there would be a continuity between schooland home. Without the communication network

S T R U G G L I N G 2 1

James would get mixed signals about expectations,consequences and therapies. I would alsovolunteer on a regular basis in the school libraryand as a playground and lunchroom monitor. Thisgave me the chance to see James and the otherchildren in action. I knew who the bullies wereand who was a kind child. When social issues aroseI knew who was who and had a better idea ofJames role in any interaction.

It was all a lot of work and often emotionallyexhausting, but James worked hard and made tre-mendous progress in every way. It was not alwayseasy, but he was an honors student who was verycommitted to his art work. Unfortunately, theschool only went to the fifth grade.

Like many parents, Celia and her husband, John, exploredthe option of private schools for their son. The ones in theirarea had no resources for special education students andwere not open to accommodating James learning style.Public school was the only choice. As in other communi-ties, the towns elementary schools were consolidated intoone large middle school for grades six through eight.Intense preparations took place for James transition to thishectic environment. Details were worked out pertaining tohomeroom placement, the location of his locker, and thescheduling of classes. The assignment of his five courseteachers was carefully weighed. Students James had apositive rapport with were placed in his classes. He wouldforego physical education and substitute the time withspeech and language therapy from the schools therapist.His regular, private, therapeutic swim lessons would fulfillphysical education requirements.


At least three times during the summer Celia and Jamesvisited the middle school facility. James met with the newspeech and language pathologist who was assigned the taskof overseeing his school days. A sincere reciprocal attemptwas made to develop a bond between James and thisteacher in order to give him a sense of security in his newsurroundings. A map of the building was obtained andJames walked through the halls learning where the library,boys rooms, office and other important locations were. Hehad no trouble navigating the large physical layout.

Problem-solving strategies were developed. Secretariesin the office were informed about the importance of pro-cessing messages between Celia and the teachers. Everyoneconcerned felt that an airtight plan was in place to ensuresuccess, but Celia was somehow uncomfortable.

Before James was to go to the middle school I hada very bad feeling about it. The teachers in boththe old school and those involved with his IEP forthe new school assured me that all would be fine.They said I had to let him go and I was being over-protective.

Around this time a teacher who had taught at both Jameselementary school and the middle school called Celia. Sheasked if she could come by the house and speak privately.She knew of James AS and was aware of what a highlyintelligent boy he was. She sat down at the kitchen tableand stunned Celia by saying:

Please dont send him to the middle school. It willbe bad. Many of the children are cruel and intoler-ant. Its an old building with lots of dark corners


where your son can be tormented. A lot of teacherslook the other way. I know because Ive taughtthere. Please dont send him.

Celia appreciated the womans concern, but felt she wasexaggerating. Certainly things wouldnt be that bad. Therewas no other place where James could go to school. Thefact that this new information corroborated Celias gutfeelings was surely just a coincidence. James started gradesix with an upbeat approach, a willingness to learn and asincere wish to make friends.

There is a lot to adjust to at a middle school. A largestudent population, changing classes, five or more class-rooms on different floors, various teaching styles, lockers,homeroom and bustling hallways are just some of thehurdles that all students must overcome. An Aspergersperson who requires predictability can have a hard timegetting used to the fast-paced atmosphere. There werealways surprises for James such as substitute teachers andunannounced schedule changes. It soon became apparentto Celia that the communication efforts that had worked sowell in past years were now going to be nearly impossibleto implement. The sixth grade networking plans lookedgood in the written IEP, but the logistics of dealing with somany teachers in such a large school were impractical.Teachers at the elementary level had correctly treated Celiaand John as an integral part of James educational team. Asshe began her early attempts to coordinate home with thenew school, Celia felt that she was viewed as an intrusiveparent rather than a wealth of information on AS and James.

The speech and language pathologist diligently tried tocoordinate the IEP and enforce the communication plan,


but she was just one person. She dealt with teachers whowere either overwhelmed by the volume of students orfirmly entrenched in the belief that they possessed all theanswers when it came to what a student needed. In additionto the frustrations Celia was experiencing, James discov-ered that he had entered an entirely new atmosphere whereyoung teens had little tolerance for anyone with any type ofdifference. The kind teacher who had visited Celia wasright. The middle school was no place for a boy like James.Celia poignantly remembers:

James is by nature a gentle person. After school Iwould pick him up to bring him home. He wouldstart releasing the days stress as soon as he got intothe car and shut the door. The crying, yelling andbad moods would continue for hours. He workedso hard to hold himself together at school that therelease of pent-up emotion would be like avolcano erupting. He would be beside himself andit would take me a long time to calm him down.

She describes a situation that many families experience. ASstudents work so hard to handle their environment duringthe school day that they sometimes take out their frustra-tions on things or loved ones as soon as they get home. Onemother described her seventh grade daughter as actuallybecoming physically abusive in a frantic attempt to get ridof the days stresses.

Celia found that by listening carefully to her son shedeveloped a fairly good idea of how his days were going atschool. He was not able to follow what was going on inclasses because he was so distracted. The large number ofstudents, noise level and variety of teaching styles through-


out the day made it hard for James to focus on informationthat was being presented. When his confusion becameobvious, he was ridiculed by fellow students. Celia discov-ered that some of these students were using school as anopportunity to vent frustrations over issues they wereunable to manage in their own lives.

Although he possessed a very high IQ, James neededextra explaining when it came to math. As a result, he hadbeen placed at the lowest math level. Explanation here wasvery thorough, but the class was a catch-all for studentswith behavior problems. James was so bombarded with thepoor behavior of his math classmates that he did not havethe capacity to absorb any information. The response of thespecial education department was that this was the bestmath setting for James within the school and the only onein which his needs could be addressed.

Aspergers children have trouble letting go of a slight,whether real or perceived. Any unkind deed or comment islocked in their memory forever. James was being picked onat school, not only in math class, but throughout the day.Some children did approach him with the intention ofbeing friendly, but he was so distraught from negativeinteractions that he couldnt see kindness when it wasoffered. Many of his tormentors were in his classes. Celiarecalls:

How could my son learn being in a room with thechildren who picked on him? Even if they wereabsent he would still have difficulty because hewas in the very room where the teasing had takenplace. Just seeing them in class constantlyreminded him of past wrongs and he could not


listen to what was being taught by the teacher. Hewas too busy reliving the insults and worryingabout the next one that might come his way.

Around this time Celia began confiding her concerns to arelative who was a teacher. Mary lived in a neighboringstate and had taught varying grades in the same elementaryschool for over twenty-five years. Part of that time had beenspent as principal. A very intelligent woman and a commit-ted educator, Mary knew and loved James. She hadfollowed his progress through elementary school and theAspergers diagnosis with unwavering interest. She listenedto Celia and John, spoke with James and confirmed whatthey already knew. They were paying a heavy emotionalprice for what James was getting out of his middle schooleducation. She began an effort of keeping in touch withCelia weekly.

Each day Celia had to reteach at home what had beenpresented in class. This could only take place when Jameshad been calmed down after a long day at school. Theafternoon would be completely spent between the calmingefforts and reteaching. After dinner James would need tobegin his homework. Bringing out the homeworkreminded him of the days difficulties and any tranquilitythat had been achieved was quickly gone.

Celia was able to discern a great deal about her sonsschool days by simply waiting in the parking lot to pickhim up. She relates:

I saw a boy I knew to be a bully open a school doorfrom the inside and push another boy down theoutside stairs. The bully shut the door so the victimwas stuck outside. I knew this bully targeted my


son. I could only imagine what he was doing toJames.

Another day as she was waiting, Celia observed a physicaleducation class finish up outside. As the students headedback toward the school building, two boys started teasing asmaller boy from the class. It was unpleasant to witness butwhat was even more disturbing was that Celia could see thephys ed instructor watching the entire scenario. He didnothing to stop it. This was precisely what had been pre-dicted by the concerned teacher who visited her.

Two trouble spots that emerged were lunchtime and artclass. Lunch was understandable because the cafeteria wasso noisy and confusing. Arrangements were made for Jamesto eat in the quieter guidance office. This did not work outas students being disciplined for poor behavior in the cafe-teria would be sent to this office for punishment. James hadno place where he could go to eat in peace. Art class was adifficulty no one expected. The art teacher was veryencouraging, but other students saw how seriously Jamestook his work and how he reacted to anyone making fun ofart. They saw this as a weakness and used the subject toprovoke him. Teachers tried to capitalize on his talents byasking him to paint a mural in a hallway. James couldntnegotiate working on a ladder and had never paintedanything that large before. He was unable to complete theproject. He viewed the unfinished mural as an example ofan art failure. Celia and John always hoped that Jameswould find a career in the field of art. They were afraid thatunder the present circumstances their sons enthusiasm forthe subject would be lost and they would lose their chanceto develop his one main talent.


James was quickly losing his sense of value. He seemedto be in a constant state of overload. This intelligent boywho showed so much promise with his art wasshell-shocked. He found it impossible to implement any ofthe social strategies he had been taught in such an unwieldyatmosphere. Teachers assured his parents that James wasdoing fine and that the IEP was being implemented. Celiakept thinking, however, about how much James wasputting into just making it through each school day.Although his grades were good, she felt that he wasntlearning all that much compared to the effort that went intomanaging the environment. His IQ was so high and hisquality of life within school was so low that she wasextremely uncomfortable with the entire situation.

I felt like I was betraying him. Every day before heleft home I assured him that the day would begreat. I would tell him that he could handlewhatever came up if he just employed the strate-gies we had worked out. We had extensively usedscripting with the speech and language patholo-gist to give him words to use when trouble cameup. I would remind him of what to say, evenwriting cue words on his hands. I remember sittingin the car after dropping him off at school andwatching him go up the stairs and through thedoor into the building. I felt my heart sinkingbecause I knew his day would be awful. I felt hedeserved better. He deserved a little happiness.There wasnt much happiness.

Celia has tremendous respect for the incredible courageJames displayed at this time. She doesnt know how he


reached down inside himself and got the inner strength towalk up those school steps every day.

There were teachers who really did care, but theycouldnt make up for those who didnt and for theoverpowering negativity of each school day. I hadthis feeling deep down inside that all the work thathad gone into James over the past years was beingundone.

Years ago James kindergarten teacher had told Celia,Listen to your gut. If you follow your inner voice, yourenever wrong. Those words kept haunting Celia as theinner voice that was warning her before James started themiddle school continued to gnaw at her. She relates:

There was no doubt we were suffering. I was sostressed that I had no life. I would go through somuch emotion and anxiety boosting my sonsspirits to get him off to school that I would beemotionally drained from just getting him there.

The day Celia believed she got the true picture was whenshe brought Temple Grandins book Thinking In Pictures tothe schools guidance counselor. This person was assignedthe task of helping James negotiate some of the daily socialminefields. She planned to donate the book to the guidancedepartment in an effort to help the counselor understandher son more. As soon as she handed it to him, she knewthat she had wasted her money. He made a sarcasticcomment about the book without even knowing what itwas about. I immediately knew that this man was not, andnever would be, on our wavelength, she remembers.


Encountering the guidance counselors attitude was adefining moment. Celia suddenly realized that for monthsher own inner guidance system had been screaming at herand she had failed to acknowledge it. Thoughts that hadbeen incoherent suddenly began to gel in her mind. Ibecame acutely aware of just how sick I was of the dailystruggle, she recalls. If I was sick of it, I could onlyimagine how James felt. She also came to see that John hadbeen silently enduring hardships brought on by the perva-sive influence of the middle school.

John had his own business and Celia would often workat his office assisting the secretary, running errands orfilling in when employees were out. She was no longer ableto do this which caused a backlog in several importantprojects. John found that when James had a bad day atschool there was a ripple effect throughout the house. IfCelia had to spend time calming down their son andreteaching material, then other general daily tasks wouldnot have been accomplished and nerves would be worn.Homework assignments caused further agony and less timefor positive family interaction and communication. The sit-uation was unpleasant and difficult.

Looking back at their own school experiences, thecouple remembered how hard it was for each of them to fitin during the teen years. Addressing their own memoriescaused them to have greater compassion for what Jameswas going through. They also noticed that most of theknowledge he acquired came from his own generalreading, interests, interaction with family contacts andnews. None of it really came from school. It was apparent


that James and his parents were putting more into schoolthan he was getting out of it. Celia says:

I felt that our existence was a tortured one. A greatfear we had was that because of cruel peers Jameswould have no self-esteem left. We were afraid thatall the love, resources and hard work that had beendirected toward him would be undone. The ado-lescents he was exposed to seemed to function inpredatory packs as a result of the peer pressure tofit in and be accepted. I didnt want my son tocontinue being one of their victims.

Members of the school team kept assuring methat their way was the road to success. Everyonewho said they knew what was best for my sonwould go on with their careers and then retire.They moved on with their lives whether or notthey failed with James, but what would his life belike? John and I would have to pick up the pieces.Unhappiness had permeated our family life anddaily outlook. This wasnt living. This was a test ofhow much my son and I could endure on a dailybasis.

Celia knew no one who homeschooled, but had becomesomewhat aware of it through a few newspaper andmagazine articles. She did know that it was legal in all fiftystates. She had never considered it before, but now neces-sity was forcing her to be open to anything that mightprovide relief to the current situation. During one of herweekly phone conversations with Mary, Celia told herrelative that she was considering home education for James.The veteran teacher and principal enthusiasticallyresponded, Why not?


Celia called the Department of Education in her statecapital. There was a person there who worked exclusivelywith homeschooling families. The necessary forms forwithdrawing James from school were sent to Celia and shefilled them out. She learned of a statewide homeschoolingcoalition and called contact members. Through suggestedreading and parent contacts she developed confidence forwhat she was about to do.

Note1. PDD-NOS (Pervasive Developmental Disorder Not Other-

wise Specified).


C H A P T E R T W O

The Road Home

It was almost the end of sixth grade. Celia and John madethe decision to remove James from the middle school andeducate him at home. They looked into homeschool curric-ulums and learned about some excellent ones from homeeducation guide books available in their local library andbookstores. One was chosen from an accredited, estab-lished correspondence school. Celia made an appointmentwith the superintendent of schools, went to his officearmed with information about what James would bestudying and completed paperwork for withdrawing himfrom the school system.

The superintendent was a gentle, open-minded manwho respected the decision to homeschool James. He rec-ognized that John and Celia were conscientious peoplewho would educate their son well and he was very enthusi-astic about the quality of the chosen curriculum. He did

34

express concern, however, that homeschooling would limitJames opportunities for socialization. This struck a nerveof concern and got Celias mind whirling about the choicesshe was making. The confidence she brought with her intothe meeting started to melt away. Once again that innervoice was screaming, but she tuned it out. The superinten-dent made an important point about socialization.

For all his successes, James social limitations wereobvious. Celia became terribly confused between what sheknew in her heart to be the right thing and what she wasbeing told by an educational expert. She agreed with manyof the theories about homeschooling that she had beenreading about, but her son had AS. He needed socialcontact in order to learn how to function in the world. Thefact that the socialization at school was seriously damagingJames made this dilemma almost unbearable to Celia.

The superintendent said that some other districts in thestate were trying shared schooling. He thought this mightaddress the socialization issue. He asked what Celiasweakest subjects were and she informed him that math andscience were troublesome. He suggested that James takethose two courses at the middle school and continue toreceive speech and language services. Celia wouldhomeschool all other subjects through the chosen curricu-lum. James would spend substantially less time in theschool each day which would eliminate his high stresslevel, yet he would still have the opportunity to interactwith people his own age. It sounded reasonable.

After talking it over with John and James, it was agreedthat James would begin seventh grade taking math andscience at the middle school. Celia would homeschool all

T H E R O A D H O M E 3 5

other subjects using the purchased curriculum she hadchosen. Speech and language services would continue.James was open and positive about this new approach to hiseducation. He began seventh grade looking forward to thereduced time at school.

A schedule was developed around the timing of Jamesmath and science classes. Times were also set aside eachweek for speech and language therapy. James and Celiaworked on homeschool material in the morning. Math classwas held at 10:00 a.m. so they worked until it was time forJames to be driven to school. Class would last for aboutforty-five minutes. There was not enough time to drivehome and come back to school again, so Celia would eitherwait in the car or spend the time at a nearby coffee shop.When math was over, James would come out to the car topass forty-five minutes until it was time for science. Theystarted off the year trying to wisely use the time betweenthe two courses. James would have a snack and Celia wouldread out loud to him from whatever novel they werestudying for homeschool. She felt tethered to her car forextensive periods of time and her mobility was veryrestricted by James coming and going.

Juggling times was complicated, but they managed.What soon emerged were the same old issues that plaguedthem when James was in the sixth grade. Although therewere just two teachers this year, Celia was still explainingAS and making efforts to communicate with the school.James continued to be harassed by other students. Simplybeing within the middle school building brought back aflood of memories to him of the previous years unhappi-


ness. This new school year, despite the home educationcomponent, was no improvement.

The science teacher was pleased to have James as a pupiland willing to work hard to help him have a successful year.There was a student within the class, however, who hadvery serious emotional problems. He ridiculed James andwould cause scenes in front of the entire class, calling himinhuman and referring to him as the thing. The scienceteacher had his hands full controlling this student plustrying to teach a lesson. He had no time to focus in on howJames felt after these humiliations. James was not learningmuch in science class. The math teacher was the same one asthe prior year. Once again, this was the lowest math levelwith the additional explanations James needed and therewere no other choices. Just as before, this class had manystudents who had behavioral problems.

Once again James was coming out of school distraughtand Celia would have to calm him down. She had hopedthat the pent-up stress would not be as severe this yearbecause of the reduced amount of time within the facility.James said that the shared schooling brought moreproblems for him, not less. Because he was in and out of theschool building, the other students were curious about hisunusual schedule. When he attempted to explain what hewas doing, they made fun of him. The scheduling drew toomuch attention to him. No reading could take place in thecar between classes. The entire time had to be used to coaxJames back into the building for science. They would gohome after science, but no homeschool work could bestarted until he had adequate time to decompress.


Celia felt that her family was still drowning in the sameunhappiness of the year before. She and James loved theirhome courses and worked well together, but running backand forth to the middle school made progress excruciat-ingly slow. Celia was still calming James, communicatingwith teachers, running interference, and reteaching mathand science courses. She continued to remain in weeklycontact with Mary. Although initially intrigued with theconcept of shared schooling, the experienced teacher nowagreed with Celias determination that it was not workingfor James.

The theory was that the limited amount of time spent atthe middle school would help James manage the socialstresses of his environment better. The hope was that theoverload would be diminished and he could implementwhat he had learned about the rules of social engagement.The concept was excellent, but the reality was very differ-ent. Celia felt that her highly intelligent, artistic son wasstill trapped in an atmosphere of intolerance and learninglittle. She knew that she had made a mistake with theshared schooling. She had listened to the superintendentand followed his suggestions. She let her fears about lack ofsocialization for her Aspergers child cloud her thinking.The superintendents intentions were good, but he didntknow James or AS the way Celia did.

It didnt matter any more what anyone thought, whatthe theories were, or how much social interaction Jameswas or was not getting. Celia, John and James wereunhappy and James contact with the school was the source.It had to be eliminated from their lives.


Education should not be about suffering. It should beabout learning. It is extremely difficult for an Aspergersstudent to implement the social strategies he has beentaught through therapies if he is in a constant state of bom-bardment. Many parents of AS children relate thatunwanted behaviors develop in their children as a result ofthe stress the child is placed in daily. As the negative behav-iors increase, more therapies are sought to assist in control-ling them. Bad things continue to happen at school and thesearch for more therapies goes on. It is like a dog chasing itstail. Life gets very complicated. One mother of a sixthgrader relates how her AS son would be so overwhelmedby school that he would go into a corner of the classroomand get into a fetal position. His aggression toward familymembers was of great concern. Once she removed her sonfrom school and began home educating him thingschanged. A lot of the unwanted behaviors seemed to fallaway as life became less riddled with fear. AS does not goaway, but behaviors brought about by a child living a life ofconstant trauma can diminish along with the source of thetension.

About three-quarters of the way through the seventhgrade, Celia once again went to see the superintendent ofschools. Just as before, she went with the paperworkprepared for removing her son from the school system. Shehad further information on hand about math and sciencecourses available from the correspondence school. Thesuperintendent listened to Celias description of howshared schooling was going. He understood her desire for ahappier life for her family and acknowledged the negativesocial tone of the middle school. Celia totally withdrew


James from school. The meeting was extremely cordial andthe superintendent could not have been more supportive.She still had to go to the middle school and completepaperwork signing off from the services of the speech andlanguage pathologist. Celia immediately drove to theschool and located her. The forms were filled out and Celiasigned on the signature line.

Unlike her meeting with the superintendent, thetension at school was palpable. Although certainly polite,the pathologist let it be known that she had given her bestto James and if things had not worked out, it wasnt herfault. News travels fast and the science teacher quicklypopped his head into the room to let Celia know that whatshe was about to do was, in his opinion, a tragedy. He statedthat withdrawing James would ruin him and he wouldnever develop into a well-adjusted person without thesocial interaction of school. Celia thanked the teacher forhis input. She thanked the speech and language pathologistfor all she had done for James and left.

For the last time, Celia parked in the school lot andwaited for James. He came out of the building and got intothe car. As usual, he was very stressed. Celia has vivid recol-lections of that moment:

He had just gotten in the car when a studentopened a window in an upstairs classroom andyelled out James name. It was obviously an effortto taunt James. It simply affirmed in my mind thatthe right decision had been made. I told James thatI had withdrawn him from school completely andhe didnt have to go back. A look of wondermentcame over his face and his joy just filled the car. As


we pulled away from the parking lot I felt, what Ican only describe as, a natural high. It was anexhilaration. James said that he felt it also. It waslike nothing I had ever felt before. I think it was afeeling of empowerment. It was absolutely incred-ible. I will remember that feeling for the rest of mylife.


C H A P T E R T H R E E

Moving Forward

In the weeks and months following that memorable lasttrip from the school parking lot, Celia and James developedconfidence in homeschooling. The trauma of withdrawingfrom the system became more and more distant. Now thatthe pressures of the school day were removed James, Celiaand John felt that, for the first time, they were really experi-encing life as it was meant to be. There certainly were upsand downs. The challenges of home educating a youngperson with AS can never be minimized, but the family feltas if it could finally breathe. Celia recalls that during thisperiod she reflected a great deal on the decision that hadbeen made. There was no regret. There was simply a needto process the entire experience. Acknowledging the mag-nitude of the decision seemed to be part of moving forwardinto the new kind of lifestyle offered by home education.

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John had his own story to tell. The logistics of liferequired that he be at his business daily and Celia wouldhandle issues involving their AS son, the schools, doctors,therapists etc. John, however, was the great support Celianeeded. He was the one to listen to ideas and calm Celiadown after she had calmed down James. Committed to hissons education, John was always available for conferences,special meetings with teachers, and science fair projects. Itwas very hard for him to watch his family being controlledby the school environment. Since the homeschoolingbegan, John felt that Celia was still depending on him, butin a much more pleasant and positive way. He found herasking him to actively participate in James home educationrather than seeking advice about daily school problems.This filled John with enthusiasm. He was no longer simplya mediator and cheerleader for Celias dealings with themiddle school.

Celia and John prided themselves on never having runwith the pack. It bent their natures to participate in asystem with such a high emphasis on socialization andmainstreaming. Neither had ever experienced a sense ofbelonging within their own school communities, but eachwalked the expected educational paths. They understoodthe traumas James was exposed to and recognized that hiswere magnified a thousand times over by AS. So much oftheir lives had been spent dealing with school stress, firstwith their own and then their sons. Saying good-bye tosuch a long-time, looming presence in their world was alife-altering experience.

Celia and John discussed her weak points in creatinglearning opportunities for James. A definite trouble area

M O V I N G F O R W A R D 4 3

was physical education and any sports-related activity. Itwas decided that James would continue with the therapeu-tic swim lessons he enjoyed and benefited from and hisfather would introduce him to new sport experiences. Johnalso became active in organizing family excursions orenrichment activities which were a source of great pleasure.He and James would pore over maps together as theyplotted out the best routes to a point of interest in theirstate. Johns role shifted from helping to cope with nega-tives to creating and enacting positives. As far as the educa-tion of his son was concerned, he now had a tremendousamount to happily contribute rather than being on thefringes of an unhappy situation.

Celia knew that a lot of responsibilities came withhomeschooling. Although it was somewhat scary, it wasalso exciting. She was concerned about how she would findresources for an AS student, locate social opportunities andcreate a homeschool network. She also knew that all theenergies she and her family had put into the school settingcould now be directed toward addressing these needs.Things could only be better. Shared schooling hadntworked out, but it gave the family a chance to get its feetwet with home education.They had a good sense of whatthey were getting into. It allowed them to see that theycould work together and get things accomplished.Looking back on all that had happened, Celia knew thatshe had saved her sons life. She equated withdrawing himfrom middle school to the Marines going in on a rescuemission to a foreign city somewhere in the world. For thefirst time in her life she had bucked a system. She didnt do


what was expected of her. James was worth putting herselfon the line for.

Celia found that the experiences she and James hadwith the middle school were so unpleasant that it was hardfor her to recall the support and positives of the elementaryschool. Obviously there are intelligent and devotedteachers and kind fellow students. An Aspergers student,however, can perseverate on the negatives. These negativesget so magnified that they loom large over everything.They can block out whatever sunshine may come fromupbeat people. James would make positive comments abouthis teachers from the elementary days, but he would nevermention any teachers from the middle school. Unfortu-nately his latter experience had been so bitter that helumped the good people in with the not-so-good.

Although it may work well for some families, theshared schooling was a mistake for James and his parents.Celia and John felt that in trying to give the middle schoolexperience a chance, they had stuck it out too long. Celiaknew deep down that things were not going to go wellright from the beginning. She received a very solid warningfrom a teacher who had once worked there. Unfortunatelyshe squelched the signals she was getting from her naturalradar and listened to functionaries within the schoolsystem. Although well-intentioned, none of these individ-uals knew James the way his parents did, nor did they livedaily with AS.

Not a day went by without James saying, Thank you,Mom, for homeschooling me. Although angry and sadabout his time at school, he was glad to have had the expe-rience of what it was like there. He astutely said that if he


didnt know what it was like, he wouldnt appreciate howgood it was to learn at home. Celia similarly felt that if hehadnt participated in school life, James would havebelieved that she had deprived him of joining in whateveryone else was doing. She refers to the entire middleschool episode when saying:

We tell our children to walk away from bad situa-tions, but then we let them wallow in an environ-ment where they expend too much valuable timeand energy just learning to tolerate the intolerable.I feel that by making the decision to homeschoolmy AS son, I have taught him an important lifelesson. If you are in a bad situation, do somethingabout it. You dont have to tolerate mediocrity andunkindness.

Many books about home education state that when thetransition is made from school to homeschool, studentsquite often need some down time to get used to the change.Celia thought that would be the case as James startedhomeschooling full time. Surprisingly he wanted to jumpright in with both feet and get underway immediately.Transitions had always been hard for James because of theAS. This time was different because the change waswelcomed. He was no longer being dictated to by a largeeducational machine. He was now a vital influence increating his own education.

Celia chose to stay with the same purchased curriculumshe used during the days of shared schooling. This was avery structured, accredited correspondence program with ateaching support service that could be called if she wasconfused about any of the materials or needed back-up on


how to present information. Additional courses were addednow that math and science were not being taught throughthe public school. Math was Celias weak spot. John wasvery good at it, but he was busy running his business. Atutor was needed to teach the math course. Celia remem-bered a young man who was student teaching at the middleschool. She contacted him and a whole new world of mathopened up for James.

Mark was a mathematics major at a nearby state univer-sity and had just completed his student teaching. A brilliantstudent, he planned to stay at the university and go on forhis masters degree and Ph.D. He was paying for his owneducation and needed funds. When Celia approached himabout the possibility of teaching James, Mark jumped at theopportunity. The price of tutoring was expensive, but Celiacould not teach math. She also felt that Mark would be apositive contact in James life. It was worth the price. Markwould be James math tutor for the next five years. Jameswent to the university three times a week for math lessons.He and Mark would meet at various locations, usually thestudent union or library. When the university closed forholidays, Mark would come to the house. He read aboutAspergers, listened to Celias explanation of it and got toknow James.

Since Mark had completed his student teaching at thesame school James had attended, he could offer some excel-lent insights. Like the teacher who had warned Celia aboutthe middle school long ago, Mark was able to offer infor-mation with the knowledge of an insider. He believed thatthe school could be a good environment for many students,but for a boy with AS it would be a nightmare. Celia didnt


need validation for having removed her son from school,but if she had been looking for it, Mark was the person totalk to.

Lessons with Mark were a far cry from the low mathgroup at school with all the behavior problems. James nowhad one-on-one math instruction. He zoomed through hislessons. It was hard work, but the setting was pleasant andhe was willing to put in the effort. Since early childhood hehad enjoyed drawing extremely complex geometric shapesand patterns. Mark was able to touch upon this interest andthrough him James was able to meet two well known math-ematicians visiting the university. Both men were recog-nized for their work with patterns that were of interest toJames. He was thrilled to have met them. When James com-pleted his high school studies, he was functioning solidly atthe college math level.

James took a full load of courses through the corre-spondence school. In addition, he took two art classes at alocal creative arts studio. These were given in the late after-noon or early evening. One was a teen art class and theother involved mostly adults. Sandra taught both courses.She immediately sensed James artistic talents and was verywilling to learn about AS. Sandra worked hard to get Jamesbeyond his dislike of messes. She got him to try difficultmediums such as oils and watercolors. He developed a greatfondness for her and, because of the comfort level he expe-rienced in her classes, was able to broaden his art horizonstremendously. The classes gave him an opportunity to meetsome young people around his own age as well as olderpeople who were doing more advanced work. No onemade fun of James for being artistic. As with the math


lessons, James remained a student at this studio for aboutfive years.

The math and art lessons took up quite a bit of time.Celia and James found that they had to make a concertedeffort to stay at home for quiet times to complete lessons forthe various courses. A daily schedule was developed whichrevolved around math, art and the ongoing therapeuticswim lessons. James helped his mother make up theschedule. Working on it enabled him to learn aboutmanaging time and assuming responsibility for his day. Theschedule was important and James felt in control by havingsome input. Celia didnt care in what order work was done,as long as it was given enough time. This included time topresent material, discuss it and do assignments.

Over the years James benefited from a great deal ofintense intervention from both private and school thera-pists who concentrated on sensory and language issues.Now that he was home-educated, the services obtainedthrough the school system were no longer available. Thesituation had changed, however, as James grew older andmany of his sensory integration issues dissipated. Whatevertechniques were needed to help James had already beenlearned by the family. What was currently required alongthese lines could be done at home.

There could never be enough speech and languagetherapy, however, and James would always need assistancenavigating the nuances of the social world. From anothermother in the area Celia learned of a speech and languagepathologist who would come to the house on an as-neededbasis. The woman was familiar with AS and had otherAspergers clients. She would visit twice a month. She


worked out programs for James depending on the issues hewas struggling with. He would work on these himself untilher next visit.

Parents who homeschool Aspergers children oftencomment that many negative behaviors fall away whentheir children are removed from the schools. James sociallimitations continued to exist, but because his new circum-stances were less tumultuous, he was able to function bettersocially. He received a greater volume of therapy in school,but needed more because of his surroundings. The newhomeschool environment was one of reduced stress wherehe could practice and implement the instructions of thespeech and language pathologist.

The costs of the correspondence school were not par-ticularly expensive, but the math instruction, art lessons,therapeutic swim, and speech and language services cer-tainly were. In spite of all the responsibility of a motherinvolved in home education, Celia occasionally was able toput in a little work time at Johns office and that was a bit ofa help. Expenses were definitely very tight. The good newswas that James, Celia and John were happy. No price couldbe put on the wonderful feeling they all had of doingsomething to help themselves. Celia didnt mind drivingher older car with over two hundred thousand miles on it. Itgot her where she needed to go. The cost of lessons was stilla lot cheaper than a private school. The expenses wouldntgo on forever and their new life was worth every singlepenny.


C H A P T E R F O U R

Socialization

This is known in homeschooling circles as the big Sword. People who are not familiar with homeschooling,and those just getting started with it, find socialization tobe a tremendous issue. Concern about a lack of socialopportunities keeps many families from considering homeeducation. Parents of Aspergers children have serious andlegitimate reasons to ponder this subject. The question tobe asked is socialization with whom and for what purpose?

Families are told that the AS child must learn tofunction within the school system because it will teach thechild skills for living in the real world. Teachers, doctors,family members and friends tell parents that school is amicrocosm of reality and children need the experience ofgetting along with others. It is believed that removing theAS child from this reality would deprive him of the neces-sary lessons about how to live in society. Rather than

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believing that socialization is a reason for sending childrento school, most homeschooling families feel that todayssocialization is the ultimate reason for not placing a child inschool. For the AS child, school socialization is not alwayslearning how to get along with others, but rather a test ofhow much negativity can be endured in one day.

Parents work hard to ensure their AS children get theright kind of therapies in order to learn social functioning.Children get these services either through the schools orprivately. Oftentimes it is a combination of both. There aremany skilled therapists providing excellent services to helpAspergers children learn how to be part of the worldaround them. The problem is that many lessons learnedfrom therapists are thrown out the window when the ASstudent is overwhelmed by the type of social activityusually present in school settings.

AS is, in many ways, a social disability. Oftentimesparents over-emphasize socialization as they are pressuredinto putting their AS child in the wrong situations. Peoplewill say that parents cannot micromanage their childscontacts throughout his life. Certainly no AS parent wantsto do that. Most parents want a break from the strain ofhaving an Aspergers child and want to see that child inde-pendent and functioning well socially. It is necessary,however, to provide an environment that is set up to nurturehappiness and positive social development.

For Celia and other AS parents, finding positive socialopportunities is a tremendous burden. The parent is alwaysa buffer between society and what will upset their child.This becomes extremely wearing, especially as it continuesyear after year. An AS child who is miserable in school has a


miserable parent. The parent functions as the go-betweenfor the Aspergers student, teachers, educational hierarchyand the often unwelcoming social setting. In the midst ofall this, it is easy to lose sight of who you and your childreally are. It is hard, as a homeschooling parent, to locate allthe right social opportunities for your student. It is easier,however, than trying to undo daily the strain and damagecaused by the social hardships faced in school. When theAS child comes home from spending the day in astress-filled atmosphere, he takes it out on the family.Everyone suffers.

Critics of home education say that school provides aview of reality that will toughen the youngster up for life ina harsh world. Homeschooling parents question whetheror not school actually is a lesson in reality. It may prove tobe a lesson in unreality and cause poor behavior as a result.Reality does not consist of socializing exclusively withpeople of your own age group for six hours a day. Thispromotes a pack mentality and an increase in peer pressure.Homeschooling can provide social contact in more naturalsettings with better results.

Home education gives the AS student time to think andprocess the many therapies being received. One motherwho started homeschooling her AS son took advantage ofhis interest in animals. He volunteered to help out weekly ata local animal shelter. Although he loved animals, he wasafraid of horses. After a few weeks of the combination ofhomeschooling and volunteering, he asked if he could takehorseback riding lessons. He now participates in a thera-peutic horseback riding program and benefits greatly fromit. He is getting socialization at the shelter with others who

S O C I A L I Z A T I O N 5 3

work there. He is also getting socialization from the ridingprogram. Both are positive settings with people who have asimilar interest in animals. They appreciate him for volun-teering and respect his interest. He is meeting otherchildren who have differences. He is needed and not ostra-cized.

As James got into the routine of homeschooling he wasvery busy with obligations outside of the home. Celiafound that they had to schedule time to complete coursework. James had math lessons three times a week and thera-peutic swim once a week. At each lesson he was meetingand interacting with people. Celia also discovered that eachand every outing to a dentist office, barber shop or storewas an opportunity for socialization. There was time nowto be less rushed which gave James a chance to do some ofhis own shopping and transactions in stores and restau-rants.

Celia and John noticed that as the hardships of schoolwent away, James came out of his trauma-induced shell. Hebecame more social than he had ever been in his life. Theyfelt this was because he was no longer in forced socializa-tion with people he didnt want to be with. He was lessfearful and his eye contact improved. He would alwayshave AS, but he was more comfortable with himself.Through one of his art classes James even met a young ladyhis own age named Abby. Abby became James girlfriendfor a while. An unusual person, she and James seemed tosense each others differences. After talking with Celia andbeing directed to the right doctors, this friend received adiagnosis of Aspergers Syndrome.


Many critics complain that the homeschooler willnever learn to work in a group setting if the student is homeall day. They wonder how the homeschooling parent canprovide the experience of working toward a goal with ateam of people. James and Abby had a wonderful and mem-orable experience through their teen art class whichprovided just such an opportunity. The local arts centerwhere their classes were held decided to participate in thetowns annual Christmas parade. A float had to be designedand built. The teen art class volunteered for the job. Thetheme was Christmas past and present. John built a portionof the float on a friends flatbed truck. The art studentscreated the rest out of a wide variety of materials and lots ofcooperation. Students from the dancing school associatedwith the center danced behind the float as it traveled downMain Street with Christmas music from the 1950s blasting.Dancing on the float itself were James and Abby dressed in1950s attire, waving to the hundreds and hundreds ofpeople who turned out for the big parade.

James and Abby were vital parts of a team led bySandra, their capable art teacher. Two Aspergers teens tookthis project from its inception to actually taking the floatapart after the parade. It was an opportunity to successfullyparticipate in a group effort. There were obstacles and tensemoments, but thanks to the determination of Sandra andher class, the undertaking was a tremendous achievement.

Aspergers children who are homeschooled dont juststay home. They are active people learning socializationskills in everyday settings. Because they are not burdenedby the unkindness and ostracism of the schools, the lessonslearned in therapies can be recalled and implemented in a


more comfortable way. James participation in the teen artclass allowed him to be with young people his own age.The adult art group allowed him to be with more advancedartists. Both groups offered him the chance to be with dif-ferent types of people, some pleasant and some not sopleasant.

An unpleasant person in a small music, drama or artclass that meets at a local center may provide a greaterchance to practice learned social strategies than a multitudeof unpleasant adolescents day after day for hours at a time.Since time moves at a less pressured rate whenhomeschooling, James had plenty of opportunities todiscuss with his parents any confusions that arose. Heseemed to digest the lessons he received from his speechand language pathologist and remember them better thanhe had when he was continually exposed to the socialdynamics of middle school.

One mother of an AS teen relates how her sociallyawkward daughter had stones thrown at her and was con-tinually tripped at school. Any self-esteem the girl pos-sessed was quickly eroding. She could not implementlearned strategies because she was always anxiously antici-pating the next bit of cruelty. As soon as she was removedfrom school and started taking control of her own educa-tion, she relaxed and was able to practice social skills. She ishappier now and has become a great self-advocate.

An Aspergers student who is a sophomore was recentlybeaten up in a boys room at his high school. His glasseswere broken and he was injured as a result of beingslammed against tile walls. His life is so unbearable frombullying that he says he has no worth and wants to commit


suicide. He learns little because of his fear and depression.His parents continue to send him to school because heneeds socialization. What price will their son ultimatelypay in order to be socialized in todays schools?

Self-esteem that is destroyed in youth is hard to reclaimin adulthood. This is true for all students, but even more sofor those with AS who muster tremendous courage eachand every day just to walk through the school door. In apubescent environment where those with any differencesare frowned upon, the sensitive AS teen is shunned. Theencouragement of self-esteem provides the foundation forimplementing Aspergers therapies. The opportunities toboost self-worth in school may be present from time totime, but they are fleeting.

Prior to withdrawing James from school, Celia had tre-mendous concerns about how he perceived himself. Hewas in school for six hours a day with overly judgmentalmiddle schoolers. James knew no one who had interestssimilar to his. He felt very alone. What became the symbolof this predicament was James shirts. He hated to have hisshirt untucked, but at school all the boys had their shirtshanging out of their pants. James was teased for having hisshirt tucked in. Celia found herself telling him to leave hisshirt out so he would visually blend in with the crowd andbe less of a target. It dawned on her that if he compromisedon a little thing like tucking in his shirt to get along, thenwhat lesson was he learning about the bigger issues in life?Would he learn that he would have to give in on the issuesof sex, alcohol, drugs and poor behaviors in order to blendin? Would he suppress his talents and interests because they


were unusual? Celia decided that being true to himself wasthe most important lesson James could learn.

Life is full of bullies of one sort or another. They willnever be in short supply. The homeschooled student justdoesnt encounter the volume of them. There are trouble-some people in extended families and neighborhoods. Thedifference is that in a middle school setting the AS studentis continually confronted by them. A homeschooled ASstudent experiences social negatives in smaller doses. Hecan take each unpleasant experience and use it as a learningplatform.

James had just such an opportunity involving a neigh-borhood family with a teenage son who claimed to be aNazi. This was a tremendous concern to James who prideshimself on his sense of tolerance and social justice.Although he had no interaction with this individual, justknowing that someone of such a mind-set was present inthe neighborhood bothered James. Working through thissocial stress provided him with an intense and difficultlearning experience.

Celia, John and James had always spent the holidayswith certain relatives. There was never a great bond withthese people, yet because they were family an effort wasmade to share some special times. These individuals hadnever tried to understand AS and were quite critical ofJames. Celia tried to overlook some of their comments in aneffort to keep family peace. After homeschooling for anumber of months and feeling more and more confidentabout himself, James informed his parents that he saw nosense in spending precious holiday time with people theydid not particularly enjoy. He thought it made more sense


to design some new holiday traditions involving otherpeople in their lives who were more understanding. Johnand Celia looked at each other, recognizing that James wasright. They were amazed that they hadnt come to this con-clusion themselves. Changes were made and holidays aremuch more pleasurable. Celia and John believe that theirson took a lesson from the experience of deciding tohomeschool. He saw himself in an uncomfortable situation.He recognized that he did not have to put up with it andcould do something about it. Thanks to his ideas, holidaytime is much happier and he was able to take the lead on ini-tiating positive change.

The goal in home educating an AS youngster is to feedhim varied social settings in manageable doses. Many ofthese settings will be in areas of interest to the Aspergersstudent, such as the boy who volunteered at an animalshelter and took horseback riding lessons. Within thesevaried settings will be positive and negative people, just asthere are in school. These doses of exposure to the negativeare on a reduced level giving the AS person the chance toactually handle them. At the same time, the positive isaccentuated by being in smaller groups centered aroundmutual interest. Life presents plenty of unpleasant lessonsfrom which to learn. These range from the cantankerousrelative no one wants to see coming up the walk to intoler-ant neighbors to that arrogant teen at the local arts center.Even a rude cashier at the grocery store provides a lesson inhow to handle a negative.

Young homeschoolers with AS can benefit fromexposure to all of these situations. When the Aspergersstudent is not under continual fire from an unsuitable social


situation, he can learn to manage the difficulties presentedin everyday living. Homeschooling provides opportunitiesfor functional socialization and that is the critical differ-ence from socialization in school. An abundance of quiettimes present in home education will never do the damageof reduced self-esteem caused by unkind peers.


C H A P T E R F I V E

Making It All Work

It is one thing to be full of terrific ideas abouthomeschooling a young person with AS and another thingto actually make it all work.

Parents talk of the unforgettable experience of lookingat their child on that first day at home and wondering whatthey had gotten themselves into. The important thing toremember is that all homeschooling parents feel this wayfrom time to time. The key to success is having a plan andrecognizing that it may have to be changed according towhat does or does not work. There is no such thing as alearning disability in home education and no need toaccentuate differences. You and your child simply do whatneeds to be done for learning to take place.

Parents embarking on this road must establish forthemselves an information network. The network shouldconsist of doctors and therapists expert in AS as well as

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local and statewide homeschool organizations that canprovide direction, support and advice in the arena of homelearning. Take what is helpful from these sources and whatsuits your purposes. No one person or group has all theanswers for you, but by networking and listening you canobtain the information you need.

Although homeschooling is legal in all fifty states, dif-ferent states have different regulations. Your localhomeschool organization or its website can provide a copyof your state law regarding home education and sugges-tions about how to comply with it. Also, the Department ofEducation in your state capital can provide information toprospective homeschooling families. It is a good idea tocheck a number of sources to make sure that you get a clearpicture of what is required.

When you contact a statewide homeschooling group,ask if there is a particular person within the organizationwho is knowledgeable about your state law and the issue ofcompliance. There may even be someone who helped writethe law. Usually such groups monitor activity within stategovernment that may broaden or infringe upon the rightsof homeschooling families. It is important to make yourcontacts so that you are informed and confident. You notonly need to set your child up for success, but yourself aswell. By establishing your network you are creating yourown platform from which to operate securely, intelligentlyand happily.

Check your homeschooling groups to locate otherparents who are home educating children of varying needs.Certainly not everyone will be aware of AS, but it can behelpful to at least know there are other parents out there


who may have chosen home for reasons similar to yourown. It is also of interest to know what services, if any,other children are receiving as well as how families ofspecial needs children may be handling the year end evalu-ations required of all homeschoolers.

When Celia first started educating James, she joined asmall support group in her town. She didnt feel comfort-able in this group. Everyone was very nice, but they were allyounger mothers who were homeschooling their childrenfrom the outset. Through this group, however, she learnedof a much larger and more influential statewide home edu-cation coalition which helped to write the homeschoolinglaw in her state and monitored the educational rights offamilies very closely. She joined the coalition and throughtheir publications and conferences learned about her rightsas a home educator. She made some excellent contacts, par-ticularly one very helpful gentleman who provided tremen-dous encouragement and guidance about what help toexpect and not expect from districts, how to submit aplanned curriculum, manage evaluations, and correspondwith superintendents. Once Celia got the needed informa-tion about her state, she felt confident and empowered.

All homeschooling families must submit a yearly pro-spective curriculum to what is called a participating agent.The contact for this purpose is a designated person withinthe district. The submission may vary from a simple listingof subjects to be covered and texts to be used to a detailedagenda, depending on the requirements where you live.When the plan is submitted, it is a good idea to put inwriting that you are reserving the right to make changes toit during the course of the year. This gives you freedom to

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make alterations based upon the needs of your Aspergersstudent. If a particular text, subject, or program is notworking, you have to be free to go with what will be effec-tive. State homeschooling groups can be extremely helpfulin providing advice and direction in this regard.

Homeschool fairs offer an opportunity to purchaseused books and other materials cheaply. Home educationdoes not have to be an expensive proposition and manyparents enjoy the challenge of seeing how inexpensivelythey can educate their children. The utilization of used orborrowed materials does not indicate inferior learning.Many schools use antiquated texts. It used to upset Jamesthat the geography book he was using in school was olderthan he was. The lack of accuracy about new countries irri-tated him and made him not want to do the requiredreading. The book had been marked and abused whichreminded him of the lack of respect at school. Celia wasable to provide newer geography texts that were a pleasureto him.

Some parents focus a curriculum around the specialinterest of their Aspergers child. An example of this is anAS boy who was recently withdrawn from his middleschool. He has a preoccupation with birds. His mothercreated a program for him emphasizing the environmentand bird habitats for science, birds from various parts of theworld for geography, and writing projects centered aroundhis favorite topic. Obviously other subjects are presented,but the special interest acts as a motivator. When his preoc-cupation ends and he moves onto a new interest, he will beapproaching it with a greater knowledge of the environ-ment, geography, wildlife and writing. There are concerns


about placing too much emphasis on the current preoccu-pation of the AS student. However, this strategy can helpwith the transition to home learning. A gradual weaningaway from the subject can take place after routines andexpectations have been established at home.

Other families use purchased curriculums from corre-spondence schools. This is the route that Celia chose for avariety of reasons. She had found the decision tohomeschool a monumental one and put so much of herselfinto just making the decision that she didnt have theenergy to create her own curriculum. Another reason, andone many parents of AS homeschoolers cite, is that she andJames needed the imposed structure of a more formalprogram.

A tremendous amount of information exists abouthome education products available for purchase. Any goodbookstore or library has books that provide thoroughlistings of curriculums, individual courses, materials, andcomplete correspondence packages. Your local and state-wide homeschooling support groups are also a good infor-mation source. Quite often the larger state groups publishdirectories. They can provide tips on curriculum choices,how to withdraw your child from school, write letters tosuperintendents, link up with smaller local groups andhandle yearly evaluations. Even if you dont want toactively participate in a statewide organization, it is good tojoin. Newsletters are usually published that keep membersinformed about tutors, group excursions, lessons offeredand upcoming activities in your area. Annual curriculumfairs are a great way to view texts, talk to representatives ofvarious correspondence schools and meet other families

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interested in home education. You find out about suchevents through newsletters.

As they began homeschooling full time, Celia chose tostick with the curriculum she had been using when Jameswas doing the shared schooling. It was an excellent one thatwas extremely structured. James needed structure or thingsjust didnt get done. She liked the fact that the correspon-dence school kept a transcript of James grades which wasformal proof of his ongoing educational progress. Anotherfeature was that the plan was fully accredited. Manyhomeschool programs are not. Self-created programs are,of course, not accredited either.

Celia remembers:

I felt that, in many ways, the Aspergers put him ata disadvantage in the world. I knew that it wouldbe important for him to have a diploma from anaccredited program. I didnt want him to have adiploma that would not be recognized by anycolleges later on. I thought it would just be onemore thing working against him. In my heart Iwould have loved to create our own plan and gowith it, but I felt it was an advantage for myAspergers son to be with a recognized correspon-dence school.

Many families do not share this opinion and believe it is anadvantage not to have the requirements of a correspon-dence school imposed upon their child. This is a personalchoice. Today many colleges recognize the value of admit-ting homeschooled students and it is not necessary to useaccredited programs. Celia went with the security of the


correspondence school believing that the teaching supportservice it offered provided her with additional backup.

She also felt that the structure of the courses would takethe onus off her as far as imposing educational disciplinewas concerned. The monthly schedule for lesson submis-sions would provide a framework to keep James movingforward with his studies. Celia wanted her son to be lesspressured, but she realized that he needed to know thatthere were expectations and goals to be met. Knowing thatthe correspondence school was waiting for the next lessonto be submitted kept James motivated. Families not partici-pating in a program say that their children are challengedby the pleasure of learning for learnings sake and do notneed these prompts.

One mother and daughter developed a combination ofthe two approaches which proved to be a tremendoussuccess. Elizabeth was diagnosed with AS when she wasabout fourteen. She was so miserable in a public middleschool that her single mother pulled her out and placed herin a small local religious school. This setting was fine for awhile, but Elizabeth had interests far beyond what wasbeing taught at the school. She was also unhappy socially.Easily offended, quiet and possessing unusual mannerisms,she was often teased. The strict curriculum offered noopportunity for her to pursue her real love. Elizabeth wasfascinated by herbs.

Choosing Home Deciding to Homeschool With Asperger's Syndrome

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