A Gift from Alex—The Art of BelongingStrategiesforAcademic and Social Inclusion

Cheryl Nickels

This chapter is somewhat different from most of the other chaptersin this book. There are no impressive initials behind the author'sname, nor are there tables and charts or findings and conclusions

based on research and scientific method. Several years ago my husband,Alf, became aware of my sense of inadequacy and intimidation about presenting at a professional conference due to the lack of important initialsbehind my name. One day, shortly before the conference, he presented to

123

124 / Nickels,„ith the recommendation that Iuse it to in-mean overhead transparency w.th*e recom , found

troduce my upcoming P^^'^Xee very impressive initials. Thename followed by ^FE^SS'toZi terrific behind my name, Iinitials were M.O.S. While *J"**SteWtan Iasked for an explana-realized Idid not know what the) stood to ^ mther fl/ Sation, my husband proudly replied that the m,tuus ^ for givingFurthermore, he said &^«g~*** ™JTsix children together,apresentationbecause, if you added th^ges fsudden>y feltthe initials represented 65 r^.^nZhJot years has increased tovery tired! As of this writing, ^™SC method, 1offer aper-nlyezrs. And so,^^^^S*~* *to"^^spective and understanding that comesof parenting children. chapter, readers may have a^My hope is that, by the end of ttusa P delusion, thecleare/idea of the human,.mens,n bhind he c ^p^ ,hopes and dreams, the reasons and he and glfts re.S3Tnd aSSTa^SnamedVx, now grown intoprogram recommendation,; frou, DH. MMJ >£ ^ advocate *asultant from Boise, Idaho. Dr. ^^0^8 ^ ^ mainstreamreluctant school system as we «*£»£ in our rural Idaho schoolplacement for achild wi ha^"^f^-year-old son, Alex, whodistrict. We sought that placement for our then y ^ ^ ^has autism. The following ^^^^^arted territory.garding our impending purney into unchart J widespread

There is aiways aW^nn^£a?X» as ^o 15yearsuse of that practice. It has been sad matnrr^y c seems all ooto, research to be inco'P°^.ntof'Sver, take' heart in the fact that theslow when it comes to the^.um^Sormed consumers like yourselves Theimpetus for change is usually.well in^° bordering on, if not exceeding,oroqram you desire for Alex will be s0^™ng » unrealistic, only aSe-o.-the-arf practices. This' *e ^ke *™J ^ This just may

"^e gift from Alex to others could notJ^"^^ated in November W^Howeva, lOy^s ^rg.^overyand over again.

A Gift from Alex / 125

,., and all community activities where typical people are found. Only'*S society be privileged to receive the gifts that are given by Alex

HZers Uke him My greatest hope is that the day will come whenfamiU scan'̂ in such placements for their children without the tremen-do" 1 fficuifies and barriers they now encounter. There a«.still manytho doubt that this type of integration can be successfully achieved. Ourexperience as afamily is that they can be achieved and that when integration is provided, many of the difficulties of disability subs.de withoutfUrt™irVySrfa"go, Isat in ameeting for scout leaders and listened toaspeaker tell astory that captured my attention. Ihave since forgottenwho the speaker was or the point he was making with his story. But forZ the sto^y took on aparticular meaning and left astrong impression onZ, mind. The story was of aman who had been named OutstandmgBlind Golfer of the Year. We were given to understand tha in blind golfing abeeper is placed in the ball and in the hole and that, by listening tothe beeps the person golfs. The award was presented at abanquet. Dur-tae the presentation of the award, the presenter challenged the recipientto around of golf. The challenge was accepted. Thinking to perhaps eventhe odds between the seeing and nonseeing golfers, the presenter generously offered to allow the award recipient to set the time and place for theround of golf. After careful consideration, the award recipient named theeolf course of choice and set the time for 12:00 midnight.

Perhaps because Ihave ason with adisability, this story was significant to me and from it Idrew two important lessons. First, 11 shghchangeof conditions can alter greatly our perception of who has adisability Andsecond, given some adaptive tools, people with disabilities can play onhe same8 "course" with the rest of us. The story reminds us that perhaps

we need to reframe how we think about people who have disabilities,where they can be, and what they can do. Perhaps we need1 to learr, howto provide the adaptive tools that allow children with disabilities to participate and belong in our general school classrooms and community activities. It is important that children with disabilities be allowed to playon the same "field," but they will need some different tools if they are tobe successful there. For too long it has been said that they could play onthe same field, but only if they could do so using the same tools as everyone else. If they could not succeed using the same tools they were sentaway. We must invite these children to play on the same fields-tha is ingeneral classrooms-by providing them with some additional tools thatcanenable them tosucceed there. „m__-i

The needs of children with disabilities extend beyond the functionaland academic curricula of the sheltered and protected environments of

J^SSlSw-- is to end this feeling of isolation, re.ec-^£pa-n0", felt when my son was diagnosed with asevere

rejection by their peers. Also in my mind was the pain m»"yeAlex s14-year-old brother when he came home from |unior high one atfemoon afCobserving the treatment of young P^f^^ffihis school and asked, with tears running down his face, Mom,what kids are going to do to Alex when he grows up? ^

If people are really interested mhelping, the geatest gifts.7give families are inclusive placements for their ch 'dren,^" 7ted byfamily see Alex belonging and participating accepted and suppor Jhis peers, and surrounded by agroup of children who are his fnenpain is diminished and we rejoice in the life of our son.

A Gift from Alex / 127

STEPS TO INCLUSION

r nine an inclusive educational placement for Alex in aschool systemGaining an mcius „laCements required an intensive commitment onnaccustom dto such places^ % implementation of Alex'sthCl£Seffort between his teachers and myself. BuildingPXre progTan scontinues to be ajoint effort between educators andoatnts APsTh ve worked closely with educators in Alex's program sinceS md-1980s, Ihave identified five basic steps that are useful ,n developing an inclusive placement. These steps are the following:1 Know what inclusion means.2. Know whyinclusion is important.1 Know what the goals are.4 Know how to build aprogram in typical environments.5. Know how to help children make friends.

The first three steps constitute basic elements that are essential components to the process of building inclusive programs. Some find them toCoo elementary for consideration, but experience with both parentsand professionals shows that they are usually overlooked. And becausethese basic elements are overlooked, inclusive programs often fail Theseelements are vital to understanding why families seek inclusive programs They are precursors to Steps 4and 5, the actual nuts and bolts ofcreatag an inclusive program. These first three steps are the philosoph,-caUngredients we use to make the building blocks, the foundation onwhich we build our commitment.

Step 1: Know What Inclusion MeansIt is important to the integrity of the program to define as ateam, justwha inclusion means. Inclusion means more than the child being presentor recess and opening exercises, for music and P.E Chi dxen in thoseplacements are just part-time visitors; they do not really belong.Mu*onmeans that children will have the opportunity to go to school with the rbrothers and sisters and attend class with children from the neighborhood. They will spend their day sitting beside, eating with, playing with,and learning beside typical children. They will belong to agroup o children not agroup of children with disabilities. Until the ideas of par -timeand token inclusion are discarded, we will not build successfu. inclusiveprograms.

Step 2: Know Why Inclusion Is ImportantInclusion offers several outcomes that are difficult, if not impossible, toachieve in segregated placements. How do children learn appropriate re-

128 / Nickels

ses and*~£^^&^1£&

and pieces that make up the ^ broadened. And in-

ters, numbers, sounds, language, how to cut, color, wr

altered. Typical children who have grown up whAlex have anew p

worthv, Mchildren can begin to sense and know that, in spite ofitations, they too are acceptable, lovable, and worthy.Step 3: Know What the Goals Are

rnato^"TdiIcoveredgear,y that the *^-g£C5Smainly on issues of cognitive functioning and self-help *»^S§ »ents however, were considering additional issues that we felt ™*™be addressed so that Alex might learn to escape the parameters au . n,had imposed on him and be able to function in real-world places"^ When developing goals for children in general classroom,.the manythings they will learn there that go beyond •B"*^"?"^ realmust be considered. Issues such as being aware *^«"*»«£ ™andworld; participating in part of an activity or pro,ect; taking direction

A Gift from Alex / 129

paying attention in large-group environments; learning to overcome andtolerate the distractions that such environments impose; learning to listen, follow along, finish a task, and take appropriate instructions from apeer helper or teacher and discriminate and respond on command; andlearning to develop appropriate social responses and behaviors, to be afriend, and to spontaneously follow the natural rhythms and routines ofnormal life must be incorporated into the goals. These are the purposes ofinclusive environments—the important skills and abilities that can betaught in general classrooms. These are theoutcomes Alex needed for hisfuture that could not be attained in segregated environments. Whenproperly designed, a general classroom setting should and can provideopportunities for good instructional techniques and for mastery teachingof cognitive and self-care skills that reflect the child's individual needs.However, in considering goals for children with severe disabilities, educators must also begin to look further to those issues that allow childrento become full citizens in the community of their peers now and in the future. Educators will not be looking only at academic mastery. Rather theywill be using the letters and numbers and concepts of the general classroom curriculum to teach a child to become responsive to the natural environment so that he or she will learn to function in such a way that thenatural environment will become hospitable to the child. Educatorsstruggle to know how to write such goals for the individualized education program (IEP) that reflect this philosophy. I share now how we havelearned to do this over the course of Alex's education.

The first part of Alex's IEP reflects traditional cognitive and self-helpgoals such as letter and sound recognition, reading, math facts, tyingshoes, and so forth. These goals are carried out during a pull-back sessionof about 1-hour duration during which Alex receives one-to-one tutoring.The remainder of his IEP reflects goals that are to be met through generalclassroom participation. Based on a knowledge of Alex's disability and anevaluation of his behaviors, we knew that in order to function in theworld as an adult, both in the workplace and socially, Alex was going tohave to develop certain skills. Those needed skills fell into four basic categories. First, Alex needed to learn to attend, to pay attention to what wasgoing on around him. Second, Alex needed to learn to participate in whatwas going on around him. Third, Alex needed to learn how to respond appropriately to directives given to him by those in charge. And fourth,Alex needed to learn how to have friends and how to be a friend. Over theyears, we learned how to write goals based on Alex's need to attend, participate, comply, and be a friend. Table 1 presents a few examples takenfrom Alex's eighth-grade IEP.

All of the essential goals presented in Table 1 can be carried out intypical classrooms using grade-level curriculum. Developing goals that

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fiVLoate in typical classroom activities.

A Alex will look at the page in the book, at the ooa

B. Alex will use follow-along ^s^s!^'^ok or on the paper where the1. Alex will keep his finger on the place in me u

class is working^ discussed.rlrw^rern^rr^rebianuo answer the question beingdiscussed.

C. Alex will pay attention when requested to do so.t, ,. PARTICIPATE in classroom activities, presentat-ons. and d.scuss.ons.Alex w.ll PARTICIPATE in c by ^ dassroomA. Alex will respond without protest to simp

teacher or peer helper.1. Alex will take out his book.2 Alex will find the page number. roe|<.tance3 Alex will transition from one task to another without resistance.4 ale will direct his attention to certain items when asked.

n Id tn two simple questions asked by the teacher during classB. Alex will respond to two simpie quco

sessions such as:1 Alex, what is3 plus 2?2. Alex, what is the answer to the f.ashcard problem?3 Alex, what isin the picture?

F "acceptteedbac, -rem teachers and peers and wi» cbrrec, work when

''r^^nra^tractronswithbtherchridrenatschObi.B Alex will converse at appropriate times in the classroom.C Alex will demonstrate appropriate turn taking.D Alex will greet unknown adults in an appropriate manner (shaking hands).

permission.

E.

A Gift from Alex

Classmates provide support and assistance to Alex in the classroom.

are based on skills and behaviors rather than on subject, allows parentsand educators to understand the purpose of the child splacement in thetypical classroom and how his or her other needs can be met there. General education teachers are given abetter sense of their role mthe child seducation and what they can expect the child to do. Once astrong foundation has been built based on the three steps discussed thus far, parentsand educators can go on to develop asuccessful inclusive program by implementing two more steps as follows.

Step 4: Know How to Build aProgram in Typical EnvironmentsThe first step in building an inclusive program should be an in-servicemeeting that involves everyone who will be part of the program fromprincipal to parent. This in-service meeting should be presented by an individual or individuals who can explain what the program looks like,why the child is there, what the goals are, how the child will participatethe roles of each person involved, and basic behavior management andreinforcement techniques that will be needed to obtain the student scooperation. The in-service presenter may be aconsultant hired by thedistrict to assist in the development of an inclusive program, district personnel who have implemented the program in previous years, or aparentwho may be closely involved in the program.

Next, the schedule and program for a typical classroom day is observed and evaluated. Acareful analysis is made to identify those parts ofthe school day that appear to be least hospitable to the child's participation Those times are used for the pull-back program. During this time, the

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child can be pulled to the back of the classroom or to asmall desk in the^ for oneTo-one tutoring in individual cognitive and ^elpgo^.Care should be taken that this time does not exceed 1-2 hours per day.The rest of the day will be spent in typical classroom activities.

Then based on the day's activities, the kind of support needed forthe JnTd 'to succeed is determined. It is likely, d^^.^^and severity of the child's disability, that ateacher sassistan may beneeded nthe classroom when the child is initially placed. The child mayrequire agreat deal of direction and assistance at tot For example *echild may need help in understanding what he or she should do in paying attention to the relevant information, in managing papers and material and in staying on-task. The teacher's assistant serves to guide thecml trough each activity and project, reflecting the teacher's instructs and dfrections. Some children may need to be physical yprompted

to follow directions as to when to stand up when and where to move inthe classroom, how to pledge allegiance to the flag, and so forth./This intensive assistance will be faded over time. Initially, the goal will be odevelop in the child the ability to be responsive and comfortable in theclassroom under the direction ofthe teacher's assistant

Next, the assistant will begin to direct the child's attention to theteacher, prompting the child to look at and listen to tetm*nV*Wtant might also teach the class for aperiod of time each day. During thisperiod, the general classroom teacher will spend one-to-one time with thechild, developing a rapport and learning and practicing techniquesneeded to give instruction and gain compliance. Then the teacher beginsto implement those techniques in the full classroom setting and heinstruction of the child gradually begins to transfer from the assistant tothe teacher. The assistant begins to withdraw from the child moving onto help other students but keeping aclose eye on the child should he orshe falter or get off-task. The assistant returns to provide aid and supportas needed. Eventually, the assistant may be completely faded out.

In addition to support from the teacher's assistant, the classroomprograms and activities should be examined to see how the child will beable to participate. Each project, activity, or worksheet needs to be considered to determine which part of it the child can do and how other partscan be modified so that the child can do them. In some cases educatorsmay decide to use material that is essentially different from what the typical children are doing. However, in many cases the same materials can oeused if they are modified and adapted to suit the child sabilities andneeds. Several guidelines can assist in this process. First, identify wwcnpart the child can do; then find away to simplify the rest of the task, bim-plifying the task may be done by 1) making the activity more concrete,2) identifying and limiting the concept the child is to learn, 3) using onenta

•

A Gift from Alex / 133

tion cues, 4) adapting the material to thechild's skill level, 5) making thematerial more relevant, 6) using tape recordings to extend written information and provide directions to thechild, and 7) preteaching material tothe child prior to the child doing it in class. (See Figures 1-7at the end ofthe chapter for adapted worksheet samples.)

Placement in typical classrooms does not have to be synonymouswith "dumping." It should and can be a carefully planned and designedprogram. The program should be monitored, data should be kept, andfollow-up should be maintained. It is a combined effort of the special education staff and the general education teachers. Special educators develop the program and the materials and general education teachers implement it. When given adequate information, experience, and support,administrators and teachers who may have been unsure and even hostileabout Alex's presence became his advocates and supporters. They cameto claim ownership of the program they once feared and take pride in itssuccess. And when their time with Alex ended, they spoke of lessonslearned, of genuine affection for their unique student, and of gratitude forthe experience.

The beauty of these kinds of strategies is that they work across theboard, year after year, and they can be adapted to various levels of ability.An added bonus is that these techniques of adaptation and partial participation can provide the means to draw the child into church classes andactivities, scout troops, and other community programs. The focuschanges from how many concepts can be stuffed into the child's brain, orhow many skills he or she can acquire, to how the mainstream environment can be used to ensure that the child learns to function in natural

environments and spends his or her life in them instead of behind theclosed doors and in the silent places I had learned to fear as a child.Through inclusive education, the natural environment becomes a hospitable place to the child, and the world becomes a place in which he orshe can find friendship, acceptance, support, and mutual gift giving.

Step 5: Know How to Help Children Make Friends

Friendship is an area that is often neglected for children with disabilities.In our experience with Alex, we found that friendships do not just happen because the child is with his or her peers. Building friendship requires the same careful attention and structured programming as doother areas of skill development. The basic premise in this area is thatmost of the work will be done by the typical children. They are the bestteachers and therapists that families could possibly employ. The task ofadults will simply be to give typical children open and frank informationabout disabilities and serve to facilitate the interactions of the children.

Children need to be given opportunities to express their fears and ask

H

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questions about differences they are not familiar with they need to behelped to see how people with disabilities are more like them than di fer-entPand they may need to be given help on how to develop.interactionswith children who have disabilities. Educators and parents should no beafraid to invite typical children to assist in the process of drawing children with disabilities into their activities.

" Aweek ortwo after a child has been placed in a typical classroom, anopen and frank conversation should be held with the typical children.This conversation could be carried out by the child's parent or astaff person from the school. I like to start by presenting some very concrete, visual materials that illustrate several important concepts and then drawthe children to conclusions about how these concepts apply to people.And we try to have fun in the process. For example, Ioften start with astory about aplace called the "Land of Shapes," where the rule was thatall the shapes had to stay with their own kind and could not get mixed upwith shapes that were different than themselves. The story is told using avariety of shapes placed on aboard. In time, the shapes discovered thattheir rule was holding them back and that if they were to get mixed upwith each other, wonderful things could happen. While moving theshapes around on the board, Iexplain that the shapes decided to get allmixed up and turn themselves into something special. As they watch, thechildren discover that the shapes are turning themselves into awonderful

"Next, Ipresent acracker box that has been emptied of crackers andfilled with cookies. Ialso present a tin can on which the label has beenchanged to show that there is fruit in the can instead of green beans. Onopening the containers, the children are surprised as the contents do notreflect the outside label. I also tell the story ofan imaginary communitywhere all people have dark brown hair and dark brown eyes. Iask theclass to imagine what happens when aboy with blond hair and blue eyescomes to the town and school and how people would react to him because he is so "weird." Iexplain how, over time, the community gets usedto his "weirdness" and learns to accept the boy and value him because otwho he is—his blond hair becomes irrelevant. From these stories and visual aids, the children are led to identify several important lessons, whichare written on the board:

1. It's okay to be different.2. When you put things that are different together, something wonder

ful can happen.3. You can't tell by looking on the outside what's on the inside.4. Weird isn'tweird anymore when you getused to it.

, ,

A Gift from Alex / 135

We discuss how these concepts or lessons apply to people, includingpeople with disabilities. Then we talk about the specific child, about thenature of child's disability, about the particular challenges the child facesbecause of the disability, and about how the child is different and yet justthe same as all other children. The children are given the opportunity toexpress theirfeelings, concerns, questions, and fears. This is an importantpart of the process. It seems that as children express their fears and concerns, and they are dealt with in a calm and responsive manner by anadult, those fears dissipate and the barriers that have been erected comedown. I invite the children to help their fellow student overcome the disability. Specific ideas are shared about what they can do. Children volunteer and assignments are given and accepted. As I have watched childrengo through this process, my heart has been deeply touched by thewarmth and strength of their response.

A GIFT FROM ALEX

Alex's regular classroom placement began during the second semester offirst grade. By the end of the school year he had made significant growthin many areas, but it was evident to me that the social progress I had sohoped for was not occurring. Alex maintained his aloof distance fromothers. In September of the next fall, we implemented the program I described above. I visited Alex's classroom and, in time, all the classroomsin his school. We discussed this strange little person who was in theirschool,and we talked about autism. I acknowledged, to the obvious reliefof the children, that Alexwas indeed "weird." They seemed to feel betterknowing that even his mother knew he was weird. And maybe if sheknew it and she thought it wasokay, maybe it actually was okay that hewas weird! We decided that he was different, but somehow it didn't seemto matter much now that we all understood why. We decided togetherthat one of the most important things Alex needed to learn was how to bea friend. We identified three specific things the children could do, and Ileft the school with the children responding tomy invitation tohelp.

Every few weeks I returned to school and watched as the children inAlex's class tried todraw him inbytouching his shoulder as they passed,peering closely into his face and saying "hi," and entreating him to jointhem in their play. I marveled at their persistence as I watched for 3months while they maintained a relentless onslaught in the face of Alex'stotal retreat, resistance, andanger at their effort. As I observed Alex's negative response over many weeks, I confided to my husband with a sinkingheart that perhaps the experts were right, perhapsAlex would neverhavea friend. I feared that the children would soon weaken in their efforts to

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—t6t&ffiSS— fom MffSSiS tny Hearttls warded and afew^^^J^J^,chi,dsitting in the nuddl*of ac ^^ t»d a« havedren do and, **»*%£%. of the children and Alex sP£ ^ ^up in his embrace 1he w gmiracle amnac bcontinued. The childretteve^e rf ^ ^ex rs as ^tinued to ^ «^2challenged by™''*^ig life intenth grade and continues to & happy, andjsaus y 6HnhL him from W£j££ be wait in ^f^j^odaythe society of others. No longer love rf famdy »dfnend

he shouldn't; passmg ttMs^m his friends to abirthday, par y

3S;EKS«*~--—"""joint for lunch.

A Gift from Alex / 137

And what of the wonderful children who, through these many years,have stood by his side, loyal, accepting, tolerant, supportive, and giving?Have they not also been recipients of great gifts from their strange friendwith autism? They have learned compassion, tolerance, the beauty of diversity, and the sense of camaraderie as they have climbed to the top ofthe mountain with Alex and have known the rush of pride for havinghelped make the miracle happen.

The challenge that lies ahead is to learn the "art of belonging." As welearn that art, as we create ways for children to belong, we all become thegivers and the receivers of a beautiful gift. I like to think of it as "Alex'sgift."

138 / Nickels

:Print the name of«ch picture onthe line below the picture.Direction

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A Gift from Alex / 139

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140 / Nickels

NAME:

Directions: Add or Subtract

difficulty discriminat-

— ^-^s^^a^«^»--ingbetween the signs, orient the child's attention

success.

NAME AuXDirections:

Identify the ore-fixes Hor mand choose the correct meaning

1. The rules werejjj^air.-a. fair again.

^ not fair,c. fair.

2. Dadff&ajnjejl the fence.a. not painted.b. paintedQ painted again.

3, Mnm{rgfcooked the food.a. not cooked.b. cooked.Q cooked again.

4. The boy's words were(g) not kind.b. kind.c. very kind.

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7. He was^lucky.a. lucky.

Q not lucky,c. very lucky

8. The room wasfj^fchjligejia. changed again.b. changed.

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A Gift from Alex / 143

NAMES I?Db^Uoo: U» the little numbers along thfWghways to answer the questions

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placed by amuch simpler map that contained places of -mporlance to h,m.

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NAME

Diieetlo.: Re*d the story and answer the questions below:

Jacob's dad worked in an office in the city. Jacobwas going to go to work with his dad. Dad pickedup his briefcase and told Jacob to get into the car.Dad drove to the train station and parked the car.Dad and Jacob ran to catch the train. The traintook them downtown. The buildings were verytall Jacob walked with his Dad to the officebuilding. They stepped into the elevator. Jacobpushed the button to the 23rd floor. When theygot to Dad's office, Jacob sat at his dad's desk.

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1. Where was Jacob going?

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4. What did Jacob do in the elevator?

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Figure 7. Adapt the work to the child'sa^SS^S— K-audiotape with special emphasis fJS^^SStXSSSZ. The questions and Possible answers^^^^^^^^^^^^ *"• "* - ^^ reC°rdin9 ,0 "^worksheet.