ED 364 011

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ABSTRACT

DOCUMENT RESUME

EC 302 580

Kupper, Lisa, Ed.Parenting a Child with Special Needs: A Guide toReadings and Resources.Interstate Research Associates, McLean, VA.; NationalInformation Center for Children and Youth withDisabilities, Washington, DC.Special Education Programs (ED/OSERS), Washington,DC.

93H030A0000225p.

Interstate Research Associates, NICHCY, P.O. Box1492, Washington, DC 20013-1492 (individualsubscriptions free).Reference Materials - Bibliographies (131)Collected Works Serials (022)NICHCY News Digest; v3 nl 1993

MF01/PC01 Plus Postage.*Child Rearing; Coping; *Disabilities; *EmotionalAdjustment; Family Problems; Information Needs;*Information Sources; Long Range Planning;Organizations (Groups); Parent Child Relationship

This special issue focuses on needs of parents ofchildren with disabilities. In the first article, "You Are NotAlone," Patricia McGill Smith considers the emotions that manyparents of exceptional children experience and offers a perspectivefor living and coping with the impact of disability upon the family.The second article, "The Unplanned Journey," by Carole Brown andothers, explores areas in which parents often need information andidentifies 61 potential resources. This article addresses such issuesas: adjusting to life with a disabled child, accessing informationand services, supporting the needs of the family, finding child care,addressing financial concerns, working with professionals, andplanning for the future. The issue concludes with a bibliography of60 print resources organized around critical issues, as well as alist of 60 print resources on specific disabilities. Thirtyorganizations that can provide families with additional information,support, or referral are also listed. (DB)

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Reproductions supplied by EDRS are the best that can be madefrom the original document.

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tool

Parenting A ChildWith Special Needs:

A Guide ToReadings And

ResourcesVolume III, Number 1, 1993

42rents learn that their childhas a disability or a chnmic illness, theybegin a journey that takes them into a lVethat is often filled with strong emotion, dif-ficult choices, interactions with many Of-ferent professionals and specialists, andan ongoing need for information and ser-vices. Initiallyy, parents may feel isolatedand alone, and may not know where to be-gin their search for information, assis-tance, understanding, and support ThisNews Digest has been developed expresslyto respond to the information needs ofparents those who have just learnedtheir child has special needs and thosewho have lived with this reality for sometime but who have reached a transitionpoint where they need new information orrenewed support This issue provides astarting point for families in their searchfor information and resources. Hi hopethat it will also be useful to professionalswho work with families who have a childwith a diso;aity, helping them to under-stand how having a child with a disabil-ity can affect the family and providingthem with a ready resource to share withthe parents with whom they work.

In the first article, "You Are NotAlone," Patricia McGill Smith speakscandidly to parents about the emotionsthat many parents of exceptional childrenexperience and offers a perspective for liv-ing and coping with the impact of disabil-ity upon rhe family. The second article,"The Unplanned Journey" delves into theareas in which parents and families oftenneed information and offers suggestionsabout potential resources. Included in thisarticle are discussions of such issues as:adjusting to this new life, accessing infor-mation and services, supporting the needsof the family, finding child care, address-ing financial concerns, working with pro-fessionals, and planning for the future.This News Digest concludes with an ex-tensive bibliography of print resources or-ganized around these critical issues, aswell as a list of print resources on specificdisabilities. Organizations that can pro-vide families with additional information,support, or referral are also listed.

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National Information Center for Childrenand_Youth with Disabilities

Washington, DC

You- Are Not Alone:For Parents When They Learn That

Their Child Has A Disabilityby Patricia McGill Smith

Executive DirectorNational Parent Network on Disabilities

If you have recently learned that yourchild is developmentally delayed or has adisability (which may or may not be com-pletely defined), this message may be foryou. It is written from the personal per-spective of a parent who has shared thisexperience and all that goes with it.

When parents learn about any diffi-culty or problem in their child's develop-ment, this information comes as a tremen-dous blow. The day my child was diag-nosed as having a disability, I was devas-tated and so confused that I recall littleelse about those first days other than theheartbreak. Another parent described thisevent as a "black sack" being pulled downover her head, blocking her ability to hear,see, and think in normal ways. Anotherparent described the trauma as "having aknife stuck" in her heart. Perhaps thesedescriptions seem a bit dramatic, yet it hasbeen my experience that they may not suf-

ficiently describe the many emot;ons thatflood parents' minds and hearts when theyreceive any bad news about their child.

Many things can be done to helpyourself through this period of trauma.That is what this paper is all about. In or-der to talk about some of the good thingsthat can happen to alleviate the anxiety, letus first take a look at some of the reactionsthat occur.

Common Reacfions

On learning that their child may havea disability, most parents react in ways thathave been shared by all parents beforethem who have also been faced with thisdisappointment and with this enormouschallenge. One of the first reactions is thatof denial "This cannot be happening tome, to my child, to our family." Denial

Continued on page 2

In This Issue .

You Are Not Alone

The Unplanned Journey 5

FYI: Information Resources from NICHCY's Database 1 6

List of Publishers 22

2

You Are Not AloneContinued from page I

rapidly merges with anger, which maybe directed toward the medical person-nel who were involved in providing theinformation about the child's problem.Anger can also color communicationbetween husband and wife or withgrandparents or significant others in thefamily. Early on, it seems that the an-ger is so intense that it touches almostanyone, because it is triggered by thefeelings of grief and inexplicable lossthat one does not know how to explainor deal with.

fected, questions as to whether therewill be any more brothers or sisters inthis family, and concerns about whetherthe husband or wife will love this child.These fears can almost immobilize someparents.

Then there is guilt guilt andconcern about whether the parents them-selves have caused the problem: "Did Ido something to cause this? Am I be-ing punished for something I havedone? Did I take care of myself whenI was pregnant? Did my wife take goodenough care of herself when she waspregr ant?" For myself, I rememberthinking that surely my daughter had

"It is important for parents . . . to know that they are notalone. There are many constructive actions that you cantake immediately, and there are many sources of help, com-munication, and reassurance."

Fear is another immediate re-sponse. People often fear the unknownmore than they fear the known. Havingthe complete diagnosis and some knowl-edge of the child's future prospects canbe easier than uncertainty. In eithercase, however, fear of the future is acommon emotion: "What is going tohappen to this child when he is fiveyears old, when he is twelve, when heis twenty-one? What is going to hap-pen to this child when I am gone?" Thenother questions arise: "Will she everlearn? Will she ever go to college?Will she have the capability of lovingand living and laughing and doing allthe things that we had planned?"

Other unknowns also inspire fear.Parents fear thai: the child's conditionwill be the very worst it possibly couldbe. Over the years, I have spoken withso many parents who said that their firstthoughts were totally bleak. One ex-pects the worst. Memories return ofpersons with disabilities one has known.Sometimes there is guilt over someslight committed years before toward aperson with a disability. There is alsofear of society's rejection, fears abouthow brothers and sisters will be af-

slipped from the bed when she was veryyoung and hit her head, or that perhapsone of her brothers or sisters had inad-vertently let her drop and didn't tell me.Much self-reproach and remorse canstem from questioning the causes of thedisability.

Guilt feelings may also be mani-fested in spiritual and religious interpre-tations of blame and punishment. Whenthey cry, "Why me?" or Why mychild?", many parents are al.m saying,"Why has God done this to me?" Howoften have we raised our eyes to heavenand asked: "What did I evei do to de-serve this?" One young mother said, "Ifeel so guilty because all m3 life I hadnever had a hardship and no w God hasdecided to give me a hardship."

Confusion also marks this trau-matic period. As a result of not fullyunderstanding what is happening andwhat will happen, confusion reveals it-self in sleeplessness, inability to makedecisions, and mental overload. In themidst of such trauma, inforn tation canseem garbled and distorted. You hearnew words that you never heall before,terms that describe something that youcannot understand. You want to find outwhat it is all about, yet it seems that you

cannot make sense of all the informationyou are receiving. Often parents are justnot on the same wavelength as the per-son who is trying to communicate withthem about their child's disability.

Powerlessness to change what is hap-pening is very difficult to accept. You can-not change the fact that your child has adisability, yet parents want to feel compe-tent and capable of handling their own lifesituations. It is extremely hard to beforced to rely on the judgments, opinions,and recommendations of others. Com-pounding the problem is that these othersare often strangers with whom no bond oftrust has yet been established.

Disappointment that a child is notperfect poses a threat to many parents'egos and a challenge to their value sys-tem. This jolt to previous expectationscan create reluctance to accept one'schild as a valuable, developing person.

Rejection is another reaction thatmany parents experience. Rejection canbe directed toward the child or towardthe medical personnel or toward otherfamily members. One of the more seri-ous forms of rejection, and not that un-common, is a "death wish" for the child

a feeling that many parents report attheir deepest points of depression.

During this period of time when somany different feelings can flood themind and heart, there is no way to mea-sure how intensely a parent may expe-rience this constellation of emotions.Not all parents go through these stages,but it is important for parents to iden-tify with all of the potentially trouble-some feelings that can arise, so that theywill know that they are not alone.There are many constructive actions thatyou can take immediately, and there aremany sources of help, communication,and reassurance.

Seek the Assistance of AnotherParent

There was a parent who helped me.Twenty-two hours after my own child'sdiagnosis, he made a statement that I havenever forgotten: "You may not realize ittoday, but there may come a time in yourlife when you will find that having adaughter with a disability is a blessing."

I can remember being puzzled by thesewords, which were nonetheless an invalu-able gift that lit the first light of hope forme. This parent spoke of hope for the fu-ture. He assured me that there would beprograms. there would be progress, andthere would be help of many kinds andfrom many sources. And he was the fa-ther of a boy with mental retardation.

My first recommendation is to try tofind another parent of a child with a dis-ability, preferably one who has chosen tobe a parent helper, and seek his or her as-sistance. All over the United States andover the world, there are Parent-Helping-Parent Programs. The National Informa-tion Center for Children and Youth withDisabilities (NICHCY1 has listings of par-ent groups that will reach out and helpyou. If you cannot find your local parentorganization, write to or call NICHCY toget that local information.

Talk with Your Mate, Family,and Significant Others

Over the years. I have discovered thatmany parents don't communicate theirfeelings regarding the problems their chil-dren have. One spouse is often concernedabout not being a source of strength for theother mate. The more couples can com-municate at difficult times like these, thegreater their collective strength. Under-stand that you each approach your roles asparents differently. How you will feel andrespond to this new challenge may not bethe same. Try to explain to each other howyou feel; try to understand when you don'tsee things the same way.

If there are other children, talk withthem, too. Be aware of their needs. If youare not emotionally capable of talking withyour children or seeing to their emotionalneeds at this time, identify others withinyour family structure who can establish aspecial communicative bond with them.Talk with significant others in your lifeyour best friend, your own parents. Formany people. the temptation to close upemotionally is great at this point, but it canbe so beneficial to have reliable friendsand relatives who can help to carry theemotional burden.

Rely on Positive Sources in YourLife

One positive source of strength andwisdom might be your minister, priest, orrabbi. Another may be a good friend or acounselor. Go to those who have been asource of strength before in your life. Findthe new sources that you need now.

A very fine counselor once gave mea recipe for living through a crisis: "Eachmorning, when you arise, recognize yourpowerlessness over the situation at hand,turn this p. oblem over to God, as you un-derstand Him, and begin your day."

Whenever your feelings are painful,you must reach out and contact someone.Call or write or get into your car and con-tact a real person who will talk with youand share that pain. Pain divided i: :-ot

nearly so hard to bear as is pain in isola-tion. Sometimes professional counselingis warranted; if you feel that tnis mighthelp you. do not be reluctant to seek thisavenue of assistance.

Take One Day at a Time

Fears of the future can immobilizeone. Living with the reality of the daywhich is at hand is made more manageableif we throw out the "what if's" and "whatthen's" of the future. Even though it maynot seem possible, good things will con-tinue to happen each day. Worrying aboutthe future will only deplete your limitedresources. You have enough to focus on;get through each day, one step at a time.

Learn the Terminology

When you are introduced to new ter-minology, you should not be hesitant toask what it means. Whenever someoneuses a word that you don't understand,stop the conversation for a minute and askthe person to explain the word.

Seek Information

Some parents seek virtually "tons"of information; others are not so persis-tent. The important thing is that you re-quest accurate information. Don't beafraid to ask questions, because askingquestions will be your first step in be-

ginning to understand more about yourchild. Learning how to formulate ques-tions is an art that will make Inc a loteasier for you in the future. A goodmethod is to write down your questionsbefore entering appointments or meet-ings, and to write down further ques-tions as you think of them during themeeting. Get written copies of all docu-mentation from physicians, teachers,-nd therapists regarding your child. Itis a good idea to buy a three-ring note-book in which to save all informationthat is given to you. In the future, therewill be many uses for information thatyou have recorded and filed; keep it ina safe place. Again, remember alwaysto ask for :opies of evaluations, diag-nostic reports, and progress reports. Ifyou are not a naturally organized per-son, just get a box and throw all the pa-perwork in it. Then when you reallyneed it, it will be there.

Do Not Be Intimidated

Many parents feel inadequate in thepresence of people from the medical oreducational professions because of theircredentials and, sometimes, because oftheir professional manner. Do not be in-timidated by the educational back-grounds of these and other personnelwho may be involved in treating orhelping your child. You do not have toapologize for wanting to know what isoccurring. Do not be concerned thatyou are being a bother or are asking toomany questions. Remember. this is yourchild, and the situation has a profoundeffect on your life and on your child'sfuture. Therefore, it is important thatyou learn as much as you can aboutyour situation.

Do Not Be Afraid to ShowEmotion

So many parents. especially dads, re-press their emotions because they believeit to be a sign of weakness to let peopleknow how they are feeling. The strongestfathers of children with disabilities whomI know are not afraid to show their emo-tions. They understand that revealing feel-ings does not diminish one's strength.

Learn to Deal with NaturalFeelings of Bitterness and Anger

Feelings of bitterness and anger areinevitable when you realize that youmust revise the hopes and dreams youoriginally had for your child. It is veryvaluable to recognize your anger and tolearn to let go of it. You may need out-side help to do this. It may not feel likeit, but life will get better and the daywill come when you will feel positiveagain. By acknowledging and workingthrough your negative feelings, you willbe better equipped to meet new chal-lenges, and bitterness and anger will nolonger drain your energies and initiative.

Maintain a Positive Outlook

A positive attitude will be one ofyour genuinely valuable tools for dealingwith problems. There is, truly, always apositive side to whatever is occurring. Forexample, when my child was found tohave a disability, one of the other thingspointed out to me was that she was a veryhealthy child. She still is. The fact thatshe has had no physical impairments hasbeen a great blessing over the years; shehas been the healthiest child I have everraised. Focusing on the positives dimin-ishes the negatives and makes life easier todeal with.

Keep in Touch with Reality

To stay in touch with reality is toaccept life the way it is. To stay intouch w;th reality is also to recognizethat there are some things that we canchange and other things that we cannotchange. The task for all of us is learn-ing which things we can change andthen set about doing that.

Remember That Time Is onYour Side

Time heals many wounds. This doesnot mean that living with and raising achild who has problems will be easy, butit is fair to say that, as time passes, a greatdeal can be done to alleviate the problem.Therefore. time does help!

Find Programs for Your Child

Even for those living in isolated ar-eas of the country, assistance is availableto help you with whatever problems youare having. NICHCY's State ResourceSheets list contact persons who can helpyou get started in gaining the informationand assistance you need. While findingprograms for your child with a disability,keep in mind that programs are also avail-able for the rest of your family.

Take Care of Yourself

In times of stress, each person reactsin his or her own way. A few universalrecommendations may help: Get suffi-cient rest; eat as well as you can; take timefor yourself; reach out to others for emo-tional support.

Avoid Pity

Self-pity, the expeoience of pity fromothers, or pity for your child are actuallydisabling. Pity is not what is needed.Empathy, which is the ability to feel withanother person, is the attitude to be encour-aged.

Decide How to Deal With Others

During this period, you may feel sad-dened by or angry about the way peopleare reacting to you or your child. Manypeople's reactions to serious problems arecaused by a lack of understanding, simplynot knowing what to say, or fear of the un-known. Understand that many peopledon't know how to behave when they seea child with differences, and they may re-act inappropriately. Think about and de-cide how you want to deal with stares orquestions. Try not to use too much energybeing concerned about people who are notable to respond in ways you might prefer.

Keep Daily Routines as Normalas Possible

My mother once told me. "When aproblem arises and you don't know whatto do, then you do whatever it was that youwere going to do anyway." Practicing this

habit seems to produce some normalcyand consistency when life becomes hectic.

Remember That This is YourChild

This person is your child, first andforemost. Granted, your child's develop-ment may be different from that of otherchildren, but this does not make your childless valuable, less human, less important, orin less reed of your love and parenting.Love and ,tnjoy your child. The child comesfirst; the disability comes second. If you canrelax and take the positive steps just out-lined, one at a time, you will do the best youcan, your child will benefit, and you canlook forward to the future with hope.

Recognize That You Are NotAlone

The feeling of isolation at the time ofdiagnosis is almost universal among par-ents. In this article, there are many recom-mendations to help you handle feelings ofseparateness and isolation. It helps toknow that these feelings have been expe-rienced by many, many others, that under-standing and constructive help are avail-able to you and your child, and that youare not alone.

Patricia McGill Smith brings muchpersonal and professional experi-ence to the national parent and dis-ab.lity movement. She is currentlythe Executive Director of the Na-tional Parent Network on Disabili-ties. She has served as the ActingAssistant and Deputy Assistant Sec-retary in tile Office of Special Edu-cation and Rehabilitative Services,in the U.S. Department of Educa-tion. Size has also served as theDeputy Director of NICHCY, whereslze wrote and first published YouAre Not Alone. She has travelledto almost every corner of the UnitedStates, as well as internationally, toshare her hope and experience withfamilies who have a member with adisability Ms. Smith has seven adultchildren, the youngest of whom hasmultiple disabilities. She also has anew member of her family, anadopted grandson, Sean, who hasDown syndrome.

411.

The Unplanned Journey:When You Learn That Your Child Has a Disability

by Carole Brown, Samara Goodman, and Lisa Kllpper

The birth of a child with a disability,or the discovery that a child has a disabil-ity, can have profound effects on the fam-ily. In "You are Not Alone," the first ar-ticle in this News Digest, Patricia McGillSmith offers the insights that she and oth-ers have gained through their own experi-ence of having a child with a disabilitythe emotions they have hal, the supportsthey have found, both within themselvesand within their communities, and themeans they have discovered of adapting toand living with the impact of disabilityupon the family. In this article, we willprovide additional information to supportthe life cycle, health, and well-being of thefamily when a member has a disability.Knowledge is empowering, and when par-ents obtain the information they need, theyoften are empowered to help, support, andmaintain the entire family, including thechild with the disability, siblings, gr ind-parents, and themselves.

It is with a great deal of humility thatwe are even attempting to describe whatthe future may hold for you and your fam-ily. On the one hand, we want you to beas prepared as possible so you can nego-tiate the challenges which may await yourfamily. On the other hand, we recognizethat individual variation and differencesare the rule when a child has a disability.Researchers often base their findings ongroup data what happens to the major-ity of people in a circumstance. However,what might be "true" in a research sensemay not be at all trth- for your family. Forexample, many years ago Carmen Ramirezand her husband, parents of a young childwith a disability, decided not to speak inSpanish with their son, based upon re-search that advised against a bilingual ap-proach when a child has a disability. To-day Carmen regrets that decision; her sonis now at t disadvantage within his ownfamily. where Spanish is a primary lan-guage for many members)

Therefore, while we hope this article

will guide you to sources that are helpful,take from our discussion only what youneed.

The Journey

Growth is endless and our liveschange and change us beyond an-ticipation. I do not forget the pain

it aches in a particular way whenI look at Jessy's friends (her paidcompanions), some of them just herage, and allow myself for a momentto think of all she cannot be. But wecannot sift experience and take onlythe part that does not hurt us.'

No parent wants his or her child to besick, disabled, or harmed in any way. It isnot an experience anyone expects to have;rather, it is a journey that is unplanned.The terrain families must travel is oftenrough in places. The stress families mayexperience because of their child's disabil-ity may be the most difficult of their livesand often affects important aspects of fam-ily functioning. And yet, the majority offamilies are able to find the strength withinthemselves and among their circles of sup-port to adapt to and handle the stress andchallenges that may accompany theirchild's illness or disability.

Many parents have described the pro-gression and pendulum of feelingsthey experienced upon learning that theirchild has an illness or a disability. PatriciaMcGill Smith t -,uched upon many of theseemotions in her article shock, denial,grief, guilt, anger. confusion. Not all par-ents will experience all of these emotions.'Some families feel that thcy experience nogreater sorrow than any other person,while others feel a sense of sorrow that isnever completely resolved.' Still othersfeel that these reactions are not necessar-ily experienced sequentially but may, infact, occur repeatedly, precipitated by vari-ous life crises and turning points!' Usu-ally the first crisis is when a child is ini-

tially identified as having a disability.Other crises may occur during times oftransition, such as (1) at school-entry age,(2) during adolescence, (3) when leavingschool, and (4) when parents grow older.'

The type of emotiois parents experi-ence, as intense and overwhelming as theymay be, are also normal and acceptable.Parent Rhonda Krahl writes that "thesefeelings and others are a necessary part ofthe adjustment process." However,through whatever means of adjustmenteach parent finds and these will varyfrom person to person stability does re-turn, both to the individual and to the fam-ily. Tobi Levin points out, "Most parentseventually go from asking 'why' to 'whatdo I do now?" At this point, parents maybegin to search for needed information.Many parents also report feelings of per-sonal growth that are often, in retrospect,astounding to them. One mother, describ-ing the first two years of life after the birthof a child with spina bifida, said:

I can now admit that having Laurais mostly a blessing...much of the ex-perience has been positive, chal-lenging, and rewarding, and I havegrown as a person in ways I may nothave without her...In fact, the pasttwo years have changed me for thebetter in just ab.mt every way. Nev-

ertheless. I still don't want to be themother of a handicapped child. ButI am Laura's mothet; I love herdeepl); and that makes all the differ-ence.

Taken together. the many suggestionsand insights offered by parents who havelived for years with t he experience of dis-ability in the family can provide parentswho are new to the experience with muchguidance and support. The remainder ofthis article will outline many of thc waysthat parents have helped themselves andthose tney love adjust to living with andcaring for a child with special needs.

Accessing Information andServices

One of the first things you can do thatmay prove enormously helpful. now andin the future, is to collect inthnnationinformation about your child's disability,about the services that are available, andabout the specific things you can do tohelp your child develop to the fullest ex-tent possible. Collecting and using the in-formation available on disability issues arecritical parts of being a parent of a specialneeds child. Fortunately, there is a greatdeal of information available on many dis-abilities and many disability issues. Par-ents often report, however, that at first theydid not know where to begin searching forthe information they needed.

Joining a Group

Much of the information that will behelpful to you is in the hands, heads, andhearts of other parents like yourselves. Forthis reason, it is worthwhile to join aparent's group, which can offer you theopportunity to meet other people with chil-dren who have disabilities. Some groupsare organized around one particular dis-ability (e.g., cerebral palsy. Tourette syn-drome, Down syndrome), while othergroups draw together parents who, irre-spective of the disabilities of their chil-dren. have similar concerns, such asdaycare, transportation. coping. or findingout about and supporting special educationin their community. Within each of thesegroups, information, emotional and prac-tical support, and common concerns canbe shared. The power of this mutual shar-ing to combat feelings of isolation, confu-sion, and stress is a consistent thread run-ning throughout the literature written byand for parents.

I belonged to la] gnnip of moms andfrom them cante the reassurance thatI was going to be okay...Here I couldlet it all lumg mu. We talked aboutresentment at mismanaged pregium-cie.s and birthings: .frustration withcase managers that didn't manage,doctors who didn't listen, andspouses who didn't help. This wasa safe place to express my.feelings

where the listener would really un-derstand and wouldn't dunk I was"falling apart" or "still grieving"or "not handling it too well." We

laughed together We cried togetherEven though our children had differ-ent disabilities, we nem alike: Alikein our anger alike in our fear alikein our hope."

There are many ways to identify aparent group in your area, including ask-ing your family doctor, calling a localschool, contacting the state or local parenttraining and information (PTI) center, andlooking in the telephone directory.NICHCY's A Parent's Guide to AccessingParent Groups describes a process forfinding (or starting) a group suited to yourparticular interests and needs; NICHCYalso makes available a State ResourceSheet for each state, which provides infor-mation about parent groups within thestate. These materials are available free ofcharge.

Reading Books Written for andby Parents

You may also find it worthwhile toread many of the excellent hooks that areavailable on disability issues. A goodstarting point for identifying the book orbooks most suited to your family's needsis A Reader's Guide for Parents of Chil-dren with Mental. Physical. or EmotionalDisabilities by Cory Moore.12 This bookincludes annotated descriptions of morethan l,(XX) books and articles on disabili-ties. There are also many shorter bibli-ographies available. Worthwhile sugges-tions for reading can come as well fromtalking to a local librarian, your child'steacher, or other involved professional;contacting a national, state, or local dis-ability group; talking to other parents ofchildren with disabilities; or by contact-ing NICHCY.

You may also wish to obtain informa-tion about your child's disability and othermedical issues, such as how to choose adoctor and obtain needed medical services.NICHCY's A Patent 's Guide to Doctors.Disabilities, and the Family is a useful be-ginning point, for it contains many sugges-tions for finding and interacting with doc-

tors when there is a child with a disabilityinvolved.

Many children, however, have prob-lems that are difficult to diagnose. Parentsmay be told, "It's nothing and will goaway. You're overreacting. It's a stage."'These parents "will need stamina, pa-tience, and unusual resources to find outwhat is wrong with their child. That la-bel may not come easily. but if parentsdon't pe:sue it, most likely no one elsewill."'' It you are having trouble obtain-ing a diagnosis for your child, one motherwho searched for years for a diagnosis ofher son's condition recommends that you:

keep accurate records that can pro-vide a clue to the problem;talk to others (nurses, doctors, teach-ers, pharmacists, parent groups. localmedical board) who may be able tooffer valuable information, leads, orassistance;research the problem on your own,through reading books and articles,conducting computer searches, andutilizing interlibrary loan materials;andtrust your own observations andevaluate new information based uponyour own knowledge of the child.''For those who have an early, accurate

diagnosis of their child's disability, thesearch for information is generally easier.There are many books available that lookcomprehensively and in-depth at one dis-ability. Typically, these books describe thcdisability, discuss the family's adjustment.identify medical issues, provide guidanceabout dealing with medical practitionersand developing appropriate therapy pro-grams, discuss daily life, describe how achild with that disability might be ex-pected to develop, and address educationalimplications and legal issues. A short listof such books, organized by specific dis-abilities, is provided in the resource sec-tion of this News Digest.

Accessing Services

The search for available services is achallenge for families and one that contin-ues as the child's needs change. Most ofthese services are made available becauseof legislation at the (Cderal and state lev-els. Because a core of laws affects the ser-

vices that are available, how and to whomthose services are provided, and the pro-cess of obtaining the services, it becomesessential for families to be informed abouttheir legal rights. Many of the guideslisted in the references and resources sec-tion of this News Digest provide over-views and guidance in relation to the le-gal and educational rights of children andyouth with disabilities. For a quick readon the core of federal laws governing theeducational rights of children and youthwith disabilities, NICHCY offers The Edu-cation of Children and Youth with SpecialNeeds: What do the Laws Say? and Ques-tions and Answers About the IDEA.

Typically, there are many servicesavailable within communities, districts,and states to assist you in meeting the

process is called an Individualized FamilyService Plan (IFSP).

Parents, too, can benefit from earlyintervention services; as full members ofthe team developing the program for theirchild, they can learn skills that may be use-ful for a long time slcills in decision-making, planning, being of support to oth-ers, and influencing the policy-makingprocess in their communities. Giving test-imony before the Senate on the value ofearly intervention services, one motherstated:

_Children, and the families thatlove and nurture them, have needsthat cannot be easily comparnnen-talized. Especially in early child-hood, a family's priorities may berapidly changing and may cross

"Typically, there are many services available withincommuhities, districts, and states to assist you in meeting theneeds of your child with disabilities and your family."

needs of your child with disabilities andyour family. For families with a youngchild birth through the third birthdaywith disabilities, it may be critically im-portant to access early intervention ser-vices, which are designed to identify andtreat developmental problems as early aspossible. For school-aged children withdisabilities, special education and relatedservices can be important factors in ad-dressing a child's educational needs.

Early intervention services. Earlyintervention services are designed to ad-dress the needs of infants and toddlers withdisabilities as early as possible and, assuch, can range from feeding support froma nutritionist in a hospital to developing acomplete physical therapy program for aninfant with cerebral palsy. However, theseservices are not just for the child with spe-cial needs. When framing the law describ-ing early intervention services, Congressrecognized that families are central in ayoung child's life. Therefore, the family'spriorities, concerns, and resources have be-come the foundation for planning servicesfor infants and toddlers with disabilities.The plan that is developed through this

over numerous "systems" bound-aries. As I ,ecall the hours of earlyintervention our daughter received,the most valuable lessons werebased on recognizing her worth asan individual, taking into accountour abilities, as her parents, to seekout ways to encourage her growthand development and, finally, reach-ing out to other families with chil-dren, with or without disabilities, toperticipate in mutually supportiverelationships that meet the needs ofeach individual in the family as wellas the community.'6

The services themselves are offeredthrough a public or private agency and areprovided in different settings, such as yourhome, a clinic, a neighborhood daycarecenter, a hospital. or the local health de-partment. Initial evaluation and assess-ment of your child will be provided freeof charge. Services may also be providedat no cost, although this may vary fromstate to state: some states charge a "slid-ing-scale" fee based upon what you. asparents, earn.

It is important to know that somestates are still in the process of devel-oping these services. Therefore, de-pending upon the state in which youlive, early intervention services may befully available or may still be in the pro-cess of developing. Every state now hasdeveloped a central directory of earlyintervention services, and many stateswill provide service coordinators to helpparents find services for their child.Your family physician, hospitals, or aspecialist working with your child canalso be important resources of informa-tion, as can the NICHCY State ResourceSheet, which identifies the name andtelephone number of your state's contactperson for programs for infants and tod-dlers with disabilities.

Special education and related ser-vices. Through the mandates of a numberof federal laws most notably, the Indi-viduals with Disabilities Education Act, orIDEA (formerly known as the Educationof the Handicapped Act, EHA, or PublicLaw 94-142) and Section 504 of the Re-habilitation Act of 1973 each eligiblechild with special needs is guaranteed afree appropriate public education designedto address his or her unique needs. Thiseducation is planned by a multidisciplinaryteam, including the parents of the child. Inorder to benefit from this special educa-tion, the child may also need to receive avariety of related services (e.g., transpor-tation assistance, occupational and physi-cal therapy, audiology, school health ser-vices, speech-language pathology, andpsychological services). These, too, are tobe provided by the school to eligible chil-dren at no cost to their families.

Thus, as parents, you are key partici-pants in the team that determines whattype of special education your child willreceive, as well as what related servicesare necessary to help him or her maximizethe benefits of that special education. To-gether, the members of your child's teamdevelop an Individualized Education Pro-gram (IEP). which states in writing theeducational program that is planned foryour son or daughter, including learninggoals and the educational services that theschool system is to provide.

There are many books that can be ofparticular usefulness if you are seeking to

Information from NICHCY

A Parent's Guide to Accessing Programs for Infants, Tod-

dlers, and Preschoolers with Disabilities (1992)

Questions and Answers About the IDEA (1993)

Related Services for School-Aged Children with Disabilities

(1991)

understand and access special educationservices; several have been listed in theresources section of this News Digest.Additionally, many of the parent guidesmentioned throughout this issue discusshow to access these services and advocatefor the legal and educational rights of yourchild. Material is also available fromNICHCY to explain the special educationprocess (see the box above).

Supporting and Empoweringthe Family

Parents as Individualsand as Partners

There are a number of vital factorswithin each family which will influence itsultimate well-being. One is the emotionaland physical health of each parent indi-vidually. Because it is generally the par-ents who confront the issues associatedwith their child's disability (e.g., dealingwith medical practitioners, caring for thechild), while simultaneously trying tomaintain the household (e.g.:holdingdown jobs, shopping. cooking, cleaningup, taking care of other children), it is notsurprising that many parents of childrenwith disabilities report times of feelingoverwhelmed. It is, thus, very impertantfor you. as parents. to take some time tocare for yourselves as individuals: gettingenough sleep, eating regular meals, tryingto exercise every day. even if it is just talc-ing a short walk.° As one mother relates:

/ would sometimes retreat to my"tower" and pretend that I had noresponsibilities other than to amusemyself with a good book or a sooth-ing tape. The respite usually didn'tlast more than a half hour, and itwas never enough, but it helped mebreak the "martyr" pattern of think-

ng I was required to live andbreath only for my children.

In those brief moments-of quiet re-flection I could renew my sense ofself and remember that I was impor-tant, too; that I was Kate. a person,with lots of abilities and intereststhat did not all coincide with my roleas Mommy. I came to realize that alittle selfishness is not a bad thing.If I could enjoy myself more, I couldenjoy my children more.'s

This sentiment is echoed throughout mostof the literature written by parents. AsRhonda Krahl remarks, "What your childneeds most is a healthy, loving parent.You can give him that by taking care ofyourself."9

Many families will be single-parentfamilies, but for those who are not, the re-lationship between the parents is a factorthat can influence the family's well-being.When the parents' relationship is a strongand supportive one, it enriches family lifefor all members. Conversely, when thereare problems in the relationship, the ten-sion affects the rest of the family as well.This is stating what most of us alreadyknow, as is saying that marriages undergochange with the birth of a child anychild. But when a child in the family hasspecial needs, "the changes (in the mar-riage relationship) will be greater andmore demanding."2° For a number of rea-sons, parenting a special needs child cancreate stress and conflict between the par-ents. Fot one, fathers and mothers mayreact differently to the fact of the disabil-ity. Mothers typically respond more emo-tionally than fathers, who are apt to focusmore on the future and the long-term con-cerns of the child.2' At times, one parentmay be actively experiencing grief andmay feel alone if the other parent is un-

able to express his or her grief and sor-row.22 At other times, decisions must bemade about the cnild's care, and parentsmay not agree. And when all is said anddone, the sheer demands of parenting canleave each partner exhausted and drained."With all the time you must spend withand for your child, it's easy to forget totake time for your mate...You can easilylose track of what your mate is thinking,feeling or doing as you concentrate onkeeping up with family routines."23

Much of the literature written by par-ents discusses ways for parents to protecttheir relationship. One point emergesagain and again, and that is the importanceof making time for each other meeting forlunch, getting away for a few hours to-gether, sharing an activ4y. "This isn't ne-glecting your responsibilities. If the rela-tionship crumbles you will face even moreduties. Taking time to preserve your rela-tionship makes good, practical sense, evenif something else has to suffer tempo-rarily."24 Talking to each other and reallylistening are also important and conver-sations do not always have to revolvearound the children in the family. Findingother topics to discuss can do much to re-vitalize parents and preserve intimacy be-tween them. It is also important to recog-nize that there are times when one partnerneeds to have space. As Peggy Finstonputs it, "We need to accept how our matedistracts himself or herself."25 Sharing theduties of providing care is also necessary,although couples report that they oftenhave to work hard at communicating in or-der to achieve the "we-ness" that goes be-hind teamwork. Many parents have foundit is necessary and helpful to seek jointcounseling. Through this process, theygrew to understand each other's needs andconcerns more fully and found ways ofdiscussing and resolving their differences.

Brothers and Sisters: TheSibling Story

We know :rom the experiences offamilies and the findings of research thathaving a child with a disability powerfullyaffects everyone in the family. This in-cludes that child's brothers and sisters.Many authors and researchers have writ-ten with eloquence about how the presence

- 8 -BEST COPY AVAii bar r

of a disability affects each sibling indi-vidually, as well as the relationships be-tween the siblings. Some books dealingwith sibling issues are listed in the re-sources section of this document.

The impact, according to the siblingsthemselves, varies considerably from per-son to person. Yet there are commonthreads that run through their stories. Formany, the experience is a positive, enrich-ing one that teaches them to accept otherpeople as they are. Some become deeplyinvolved in helping parents care for thechild with a disability, often assuming re-sponsibilities beyond their years in termsof that individual's care and the mainte-nance of the household)" It is not uncom-mon for siblings to become ardent protec-tors and supporters of their brother or sis-ter with special needs or to experiencefeelings of great joy in watching him orher achieve even the smallest gain in learn-ing or development. Increased maturity,responsibility, altruism, tolerance, humani-tarian concerns and careers, a sense ofcloseness in the family, self-confidence,and independence are among the otherpositive effects noted in siblings."

In contrast, many other siblings ex-perience feelings of bitterness and resent-ment towards their parents or the brotheror sister with a disability. They may feeljealous, neglected, or rejected as theywatch most of their parents' energy, atten-tion, money. and psychological supportflow to the child with special needs."

The reaction and adjustment of sib-lings to a brother or sister with a disabil-ity may also vary depending upon theirages and developmental levels. Theyounger the nondisabled sibling is, themorc difficult it may be for him or her tounderstand the situation and to interpretevents realistically," Younger childrenmay be confused about the nature of thedisability, including what caused it. Theymay feel that they themselves are to blameor may worry about "catching" the disabil-ity. As siblings mature, their understand-ing of the disability matures as well, butnew concerns may emerge. They mayworry about the future of their brother orsister, about how their peers will react totheir sibling, or about whether or not theythemselves can pass the disability along totheir own children.

Clearly, it is important for you to taketime to talk openly about your child's dis-ability with your other children, explain-ing it as best you can in terms that are ap-propriate to each child's developmentallevel. As Charles Callahan remarks, "In-formation, even concerning a painful sub-ject, is preferable to ignorance distorted byimagination."30 Some of the books listedin the resources section under "Siblings"can help you open up the lines of commu-nication and address the needs of yournondisabled children. As services for

the same but they should have the sameopportunities.

Among their opportunities should bethe chance to assume incleasingly greaterdegrees of responsibility and indepen-dence. There may be many ways in whichyour child can help himself or herself orother members of the family, includingdoing choR s around the house. You willneed to co lsider what these activitiesmight be, given your son or datOter's dis-abilities and! capabilities. As you expectand encourage your child to assume re-

"As you expect and encourage your child to assumeresponsibility, his or her sense of pride and competence willalso increase."

families grow, you may also find there isa support group available to your children,which can provide a forum for siblings toshare their feelings with others in a simi-lar situation and to exchange factual infor-mation about disability and illness.

The Child with Special Needs

Much of how you raise your childwith a disability will depend on yourfamily's personal beliefs aboutchildreating, your child's age, and the na-ture of his or her disability. An importantpoint to remember is that most of the regu-lar child-raising issues will apply chil-dren with disabilities will go through theusual childhood stages. They may not gothrough stages at the same age. at the samerate, or use the same words as childrenwithout disabilities, but they are childrenand kids are kids.

We, as parents, may believe that allchildren should be treated the same, but inpractice that is usually not the case. Why?Because anyone who has been aroundchildren, even infants, knows they havedifferent personalities and react differentlyto similar situations. We encourage andcoax the shy child and set limits for therambunctious one. We tell the loud onesto be quiet and the quiet ones to speak up.We offer different activities to the childwho loves to paint than to the one whowants to play hall. Children just are not

sponsibility, his or her sense of pride andcompetence will also increase. As lvonneMosquera remarks:

Even though I'm blind, even thoughit may take tne a bit longer to do cer-tain things, I care still do them...Onceyou accomplish a goal, you'll be theperson who feels good about it.Whether or not other people con-gratulate you for it, you'll feel bet-ter, and you'll know that you did itbecause of you -- because you nevergave up.''

Conversely, to not expect or encour-age your child to contribute to self-care orhousehold matters may send the messagethat he or she is not capable of helping.Dependence is fostered instead, as Teresadiscovered with her daughter Betsy."First, they were little things like turningon the bathwater. Then she wanted me tocarry her instead of using crutches. Sherefused to even try using them. I couldn'tmake myself say no. yet I knew that some-how this was going too far.""

Of course, the nature and severity ofyour child's disability may affect howmuch he or she is able to participate inhousehold duties and so,on. Peggy Finstonremarks:

The issue, then, for each al us iswhat is a "realistic" amount (if nor-mality to expect from our child? If

190

we expect too much, we run the riskof rejecting him as he is. If we ex-pea too little, we will fail to encour-age him to do the most he can withhimself There is no one answer forall of us, or even for all of us deal-ing with the same condition. Thebest we can do is to realize that thisis an ongoing question that we needto consider."

Perhaps some of the most encourag-ing words for parents come from childrenwho have disabilities, whose experiencesand feelings are described in numerousbooks. One consistent idea they expressis that when parents expect a child with adisability to de,elop his or her capabilities

whatever these may be this empow-ers and strengthens the child. This senseof empowerment can be found, for ex-ample, in the dedication Tom Bradfordwrote for his book about hearing loss; hededicated the book to his mother "whonever let me know that my hearing losscould have been a limitation."34 Eli, atwelve-year-old whose stroke resulted inseveral physical disabilities, writes, "Myfriends and family helped me overcomemy fears. They encouraged me to try ev-erything, even if I was determined that Icouldn't."" Fourteen-year-old Sarah saysthat, despite her artificial leg, "my parentssent me to a regular nursery school, toswimming lessons and camp every-thing other kids did...I think my family'sencouragement has a lot to do with the factthat I have such a positive attitude. Theynever sat me in front of the TV or stoppedme from doing anything I wanted to try.They gave me a normal childhood."36Robert, who has cerebral palsy, remembersthat his mother said to him one day, "Rob-ert, why don't we focus on what you cando instead of what you can't do?" Thiswas, he believes, "my biggest turningpoint I took off like a rocket!""

G rand parents

Grandparents are often greatly af-fected by the birth of a child with a dis-ability; the pain they feel may be two-fold

pain for their grandchild and pain foryou, their own child. It is important to re-member that they will need support andinformation, too, and that "the way you

relate to them can create the setting forhow they will help or not help you, or howthey will deal with the child."38 Somegrandparents may have difficulty accept-ing their grandchild's disability, which isas normal as the stage of denial parentsthemselves may have experienced. Oth-ers will be a great source of help and sup-port, and their involvement can benefit thenuclear family."

Therefore, your parents and othermembers of the extended family need tobe given opportunities to get to know yourchild as a person and not just a person withdisabilities:* Allowing them to becomeinvolved with your child may also allowyou some much-needed time away fromthe responsibilities associated with caringfor a child with special needs.

Child Care: From Babysitters toRespite Care

All parents, at some time, will prob-ably seek child care. For families with achild who needs more supervision or spe-cialized assistance, child care may be dif-ficult to find or feel comfortable with.

stand outside the situation and viewit from a distance. It enabled us toreview what had gone on before, toput things into perspective, to thinkand plan. We were also physicallyrestored, and were able to go onwith much more strength...caring forour daughter"

Basically, child care falls into severalcategories, ranging from the care providedby relatives, neighbors, or friends whohelp out, to babysitters, to the more spe-cialized care provided through daycare fa-cilities/providets, respite care services, andnurses/medical specialists. Each familywill need to determine its own level ofneed at any given time. The type of childcare you select will depend upon a num-ber of factors, including the nature of yourchild's disability, the cost involved in thecare, and the length of time for which thecare will be provided. If your child re-quires more supervision or attention thannormal but does not need specializedmedical care per se, you might have a rela-tive, family friend, or a responsiblebabysitter occasionally take care of yourson or daughter with special needs.

"You can help daycare providers by being as honest anddirect as possible about your child's needs."

Even if you do not work outside the homeand do not need replar child care. you maybenefit greatly from having child care on aperiodic or even an ongoing basis; this willgive you time to take care of personal mat-ters, enjoy some leisure activity, or be re-lieved of the constant need to care for achild with a disability or chronic illness.4'Indeed, families who use child care on aregular basis report that it "not only gaveus something to look forward to but alsobroke time down into pieces we felt wecould handle."" Child care, particularly fol-lowing a crisis. may be an essential factorin maintaining your family's health,stamina, and equilibrium. The mother ofa child with a chronic illness writes:

The week that our family stayed atthe beach was the most wondetfulgift...for it gave us the opportunity to

Daycare also can be important for thewell-being of children with disabilities,because it presents an opportunity for themto socialize with other children. Parentsoften want their child with disabilities tohave the same opportunities as other chil-dren and have been disappointed to findthat many daycare or preschool settingswere not available or accessible to young-sters with disabilities. This kind of dis-crimination is now illegal. The Americanswith Disabilities Act (ADA) calls for fullaccess to daycare for children with dis-abilities. In some cases, the needs of achild will be such that a particular daycareprovider or center may not be equipped tocare adequately for that child. The lawnow provides for flexibility in these cases;often, parents will have to be resourcefulto help a provider become equipped orknowledgeable about how to care for the

needs of a child or to find other sourcesof help.

You can help daycare providers bybeing as honest and direct as possibleabout your child's needs. It may also behelpful to let providers know how muchtheir care is needed by and supportive toyour child. The partnership between par-ents and daycare providers is very impor-tant, but it is especially so when the childhas a special need. Research has shownthat preschool and child care centers havethe most success in integrating childrenwith disabilities when staff accept andvalue diversity in the children they serve.'

Another option is respite care, a sys-tem of temporary child care provided bypeople familiar with the needs of childrenwith disabilities. "Temporary" can rangefrom an hour to several months, depend-ing on the respite care provider and theneeds and desires of the family. Many re-spite care providers have undergone spe-cialized training and can knowledgeablycare for children whose needs may rangefrom close supervision to medical care.Respite care can be provided to infants,teenagers, or adults with special needs. Insome cases, the respite provider may beable to provide care only for the child withthe disability; in other cases, care may beavailable for siblings as well. Respite caregenerally differs from daycare in that it isnot available on a daily basis to allow aparent to return to the work force.

During the past 10 years, more than30 states have passed legislation for in-house family support services, includingrespite care." Increasingly, respite carecan be obtained through organizations thatoffer home-care or out-of-home services,either on an emergency basis or on a regu-lar schedule. In many states, mentalhealth agencies provide services which areeither free of charge or priced on a slidingscale (according to parents' ability topay). To find out more about the respiteservices available in your vicinity, seekout groups or professionals who workwith children your child's age. The schoolsystem may be able to provide informa-tion, as may a local parent group. Otherplaces to inquire include:

Parent Training and Information Cen-ter:Disability organizations within thestate;

State Department of Mental Retarda-tion;State Developmental DisabilitiesCouncil;State Program for Children with Spe-cial Health Needs:Departments of Health and HumanServices, or Social Services;Department of Mental Health;State and local Departments of Edu-cation; andState Protection and AdvocacyAgency.

Many of these organizations are listedin the telephone directory; NICHCY alsomakes available a State Resource Sheet,which lists telephone numbers and ad-dresses for many of these programs orgroups. Although many parents initiallymay feel reluctant to leave their child withspecial needs in the care of someone else,those who have tried it give ample testi-mony tc its value in restoring their energy,sense of humor, and perspective.

Working with Professionals:The Parent/Professional

Relationship

Parent Cory Moore, speaking di-rectly to professionals, writes:

We need respect, we need !,) haveour contribution valued. We need toparticipate, not merely be involved.It is, after all, the parent who knewthe child first and who knows thechild best. Our relationship withour sons and daughters is personaland spans a lifetime.46

Recognizing the central role of thefamily in a child's life, many servicesystems now provide assistance to par-ents and other family members usingwhat is known as family-centered sup-port principles.'" Within this philoso-phy, the family's influence is recognizedas primary, both because of its directimpact on the child's development andbecause the family serves as the link be-tween the child and the outside world.Thus, you ha v e the right to be fully in-formed and involved in decisions affect-ing your child and family.

Many of the books listed throughoutthis News Digest offer insight into how

you might work together with profession-als for the benefit of your child and fam-ily. The best relationships are character-ized by mutual respect, trust, and open-ness, where both you and the professionalexchange information and ideas about thebest care, medical intervention, or educa-tional program for your child. Informationalso must be exchanged about the needs ofyour family and about ways to take advan-tage of helping patterns that already existwithin the family 48 Both you and the pro-fessional need to speak clearly about issuesand listen carefully. Indeed, both of youhave important expertise to share.

You, for example, have intimateknowledge of your child with specialneeds; you live with and observe your sonor daughter on a daily basis and can con-tribute invaluable information about his orher routine, development, history,strengths, weaknesses, and so on. To makean accurate diagnosis, determine appropri-ate therapy or other interventions, and un-derstand both your child and the needs andresources of your family, the professionalneeds your perspective and unique insight.

The professional, too, has specializedknowledge to contribute ihat of his orher discipline. Ofttm you must rely uponthe judgment of the professional in mat-ters that are criti. ?.! to the well-being ofyour child, a position that may make youfeel on unequal and uncertain footing.How comfortable you feel with the profes-sional, how well you feel that individualrelates to your child, and how openly heor she responds to your concerns and in-put will, in many cases, determine whetheryou continue to work with the professionalor decide to seek the services of another.

Thus, there should be a mutuality inthe parent/professional relationship. Bothparents and professionals need to trust andfeel trusted, both need to admit when theydo not know or are wrong, and both needto negotiate with each other.4" Trust, re-spect, and open communication betweenparent and professional are, therefore, es-sential to building a good, working rela-tionship. This can take time to developand may require effort from both parties.To that end, many parent writers sugge ,t:

If you are looking for a specialistwith whom you can work well, askother parents of children with dis-abilities. Often, they can suggest the

name of a good speech or physicaltherapist, doctor, dentist, surgeon,and so on.If you don't understand the terminol-ogy a professional uses, ask ques-tions. Say, "What do you mean bythat? We don't understand."If necessary, write down theprofessional's answers. This is par-ticularly useful in medical situationswhen a medication or therapy is to beadministered.Learn as much as you can about yourchild's disability. This will assist youwith your child, and it can help youparticipate most fully in the teamprocess.Prepare for visits to the doctor, thera-pist, or school by writing down a listof the questions or concerns youwould like to discuss with the profes-sional.

more thing, feeling as HelenFeatherstone did when she wrote,"What am I supposed to giveup?...There is no time in my life thathasn't been spoken for, and for everyfifteen-minute activity that has beenadded, one has to be taken away."5"Peggy Finston points out that "mostprofessionals won't be familiar withthe sum total of our obligations andwill not take it upon themselves togive us permission to quit. This is upto us. It's in our power to make thedecision.""In conclusion, it is important that

the parent/professional relationship em-power the parent to be a full participantin information-gathering, information-sharing, and in decisionmaking. How-ever, it is ultimately up to you to decidewhat role(s) you want to take in thisprocesc and what role(s) you need help

"You live with and observe your son or daughter on a dailybasis and can contribute invaluable information about hisor her routine, development, history, strengths, weaknesses,and so on."

Keep a notebook in which you writedown information concerning yourspecial needs child. This can includeyour child's medical history, test re-sults. observations about behavior orsymptoms that will help the profes-sional do his or her job. and so on.(A loose-leaf notebook is easy tomaintain and add information to.)If you don't agree with a profes-sional's recommendations, say so.Be as specific as you can about whyyou don't agree.Do whatever informed "shoppingaround" and "doctor-hopping" arenecessary to feel certain you have ex-plored every possibility and potential.As Irving Dickman says, "Shop.Hop. Hope."5()Measure a professional's recommen-dations for home treatment programsor other interventions against yourown schedule, financs, and othercommitments. You may not be ableto follow all advice or take on one

with. It is helpful to know that familiesdo, indeed, choose different roles in re-lationship to professionals. Some par-ents want to allow professionals to makemost decisions about their child, otherswant to serve as an informant to the pro-fessi...nal, some want veto pov. . andsome parents want a snared role in theintervention with their child."

You are also free to change yourmind about the role or level of involve-ment you may want or be able to as-sume regarding your child's services.You may find that you choose differentroles at different times for different pur-poses. Be as direct as possible aboutwhat you want or don't want to take onin this regard.

Addressing Financial Concerns

The expenses associated with raisingchildren can stretch a family's resources.When a child has a disability, particu-larly one that involves high-priced

medical care, a family can quickly be-come overwhelmed financially. Whileit is often difficult to resolve financialconcerns completely, there are a numberof things parents can do that may help.Charlotte Thompson recommends that,as soon as parents find out that theirchild has a disability, two actions shouldbe taken immediately. These are:

Start a program to organize and man-age your new financial demands."This not only means management ofeveryday money, but it also meanskeeping very careful track of yourmedical bills and payments."54 Thereare a number of money managementguides available that explain how todo this.Seek information about any and allfinancial assistance programs. "If thestate agency caring for handicappedchildren is contacted immediately, itmay be able to assume financial re-sponsibility fbr your child's care rightfrom the start.'"Often, so much attention is focused

on the provision of health care that doc-tors and other medical staff may not men-tion available sources of financial aid.Many states have passed legislation in-tended to help families of children with adisability address their financial concerns,but parents will need to be "well focusedand persistent- to gct the answers theyneed.

Many children with disabilities areeligible to receive Supplemental SecurityIncome (SSI) benefits, based upon theirdisability. A recent Supreme Court deci-sion (Sul:ivan v. Zebley) has createdchanges in the eligibility requirements forthese benefits. Because of these changes,many more children are now eligible thanin the past. Some children who formerlywere denied benefits (i.e., after January I,1980) may even be eligible for back ben-efits. Income limits for families who havea child with a disability can be over$21,500 a year, with total family resourcesof $5,000 for a two-parent, one-child fam-ily. Larger families have higher incomelimits. Therefore, it is a good idea for allfamilies with a child who is blind or whohas a disability to apply for SSI. If a childis found eligible for SSI, he or she is au-tomatically eligible for Medicaid benefits,

even if the family income is higher thanwhat is traditionally required 'for Medic-aid in that state. This is very important forchildren with disabilities who may havemany medical needs."

If your child qualifies for Medicaid,most early intervention services can bepaid for by Medicaid. If your child quali-fies for Medicaid, it is important to havehim or her assessed by a provider quali-fied to perform the Early Periodic Screen-ing, Diagnostic, and Treatment (EPSDT)program. If an EPSDT program deter-mines that your child has a condition thatrequires treatment because of "medicalnecessity," then it can be paid for by Med-icaid. Furthermore, each state has a "ChildFire system. which is responsible for lo-cating and assessing children with disabili-ties. This is required to be free by Fed-eral law. But sometimes, even though thereis not supposed to be a waiting list, it cantake a long time to get your child assessed.Therefore, it is important to know aboutwhat other resources can be used to gethelp for your child.

Private insurance benefits are one suchresource. Usually, nursing, physical therapy,psychological services. and nutrition ser-vices can be reimbursed by private insur-ance. In some cases, occupational therapyand speech therapy are also reimbursable.Educational expenses Mated to a child's dis-ability are only rarely covered by insurance.However, it is useful to keep track of edu-cational expenses, because these are deduct-ible on your Federal income tax returns.

Some additional resources to contactin your search for financial assistance in-clude:

Hospital social workers;Public health department;Public health nurses;Volunteer agencies;Disability organizations; andState government agencies (usuallylisted under "State Government" inthe telephone book), particularlythose departments that oversee pro-grams for children with disabilities.Because searching for assistance may

involve a lot of telephone calls, it is a goodidea to have paper and pen at hand torecord t.ic names and telephone numbersof all those you contact, as well as any re-ferrals they give you. Whether or not you

believe your income is too high for yourfamily to quality for financial aid:

...the key is to keep trying to getmore information, to follow upleads, and to continue applying forvarious types offinancial assistance.This may seem like an endless pa-perwork maze to you, but with lucksome of the paper at the end will bethe green kind that can help you payyour child's medical bills. Keep atit."

her needs. Support, training, and techni-cal assistance also must be made availableto teachers and to nondisabled peers.Therefore, it is important for parents to beaware of how inclusion decisions are madein regard to their child and to advocate forsupports they feel their child, his or herteacher, and the peer group need in orderfor the inclusive setting to be a successfulone.

Inclusion, however, means more thanjust including students with disabilities inmainstream school activities. Students

"Many children with disabilities are eligible to receive SSIbenefits, based upon their disability."

Future Planning

It is not possible for parents to imag-ine all the stops and detours that they willmake as their unexpected journey takesthem into the future. But you will prob-ably be thinking at different times aboutwhat the future holds for your child. Ad-vocates believe it is important for parentsto have expectations about what their childwith disabilities can achieve in the futureand to encourage their child to develop asmuch independence as possible, given thenature and severity of the disability."

Over the past 20 years, the optionsfor children and adults with disabilitieshave greatly expanded. Schools have de-veloped specialized educational techniquesto promote learning and the acquisition offunctional skills that will enable individu-als with disabilities to have choices aboutwhere they live, work, and play, and whothey have as friends. The movement toinclude individuals with disabilities in themainstream of school life is growing, withsignificant pressure coming from parents.The premise behind inclusion is that indi-viduals with disabilities should not be seg-regated but, rather, should have the sameopportunities that individuals without dis-abilities have that is, the same oppor-tunities to go to neighborhood schools, tobe educated alongside their nondisabledpeers, to participate as fully as possible in

school activities. However, for inclusionto work, school systems must provide eachstudent with supports appropriate to his or

will grow up, leave the school setting.What does the future hold for them asadults? This is, naturally, of great concernto parents, disability advocates, disabilityorganizations, and persons with disabilitiesthemselves. For far too long, stuc:entshave exited the school years to an adultlife that lacked opportunities for employ-ment, further education, or communityparticipation." Now, with the help cf fed-eral legislation and the advocacy of manyconcerned parties, adult life for individu-als with disabilities holds increasing prom-ise. The Individuals with Disabilities Edu-cation Act (IDEA) now requires thatschool personnel, parents, and each studentwith disabilities (16 years of age or older,and, in many cases, younger) plan for thestudent's transition from school to post-school environments, including employ-ment, additional education or training, in-dependent living, and community partici-pation.° This legislation is intended toprepare youth with disabilities for the adultworld and roles they will encounter uponleaving high school, with the purpose ofmaximizing their participation in the main-stream of society. Furthermore, the Ameri-

cans with Disabilities Act (ADA) has in-corporated into law provisions that guar-antee many of inclusion's principles as in-dividual rights. No longer may most childcare centers refuse to serve children be-cause they have a disability. No longermay a qualified individual be denied em-ployment because he or she has a disthil-ity. Public accomodations must now be

13 4

accessible to all individuals. Many stateshave been working actively- to establishcommunity-based supports so that indi-viduals with disabilities can lead their livesas independently as possible.

Therefore, when you contemplate thefuture of your son or daughter with dis-abilities and develop goals for that child,it may be helpful to consider the follow-ing suggestions:

Ensure that your child has the oppor-tunity to acquire skills now that willmake him or her as independent aspossible in the future.Ensure that your child has opportu-nities to develop social skills that canbe used in a variety of settings (regu-lar classroom settings and exposureto many different environments areuseful in this regard).Write a will that will provide for yourchild's care and safeguard his or hereligibility for government benefits.(For more information about estateplanning, request a free copy of Es-tate Planning from NICHCY.) Somestates now provide for self-suffi-ciency trusts which allow parent s toleave money to a child with a disabil-ity without disqualifying that child(even of adult age) from governmentbenefits. Other states require that aspecial needs trust be established.

Teach your child to be responsible forhis or her own personal needs (e.g.,self-care, household chores).

Work with the school and other agen-cies to ensure that transition planningfor your son or daughter takes placeand addresses training for future em-ployment, coordination with adultservice providers, investigatingpostsecondary education or training,and participation in community ac-tivities.

Help your child develop self-determi-nation and self-advocacy skills.

Explore different possibilities for liv-ing arrangements once your son ordaughter is grown.

Summary

In this News Digest, we have lookedat many of the issues facing you as par-

ents of a child with a disability. Learningthat your child has a disability or illnessis just the beginning of the journey. Attimes, you may feel overwhelmed by thechallenges associated with disability andby the strength of your own emotions.And while you may feel alone and iso-lated, there are many supports available.Other parents can be invaluable sources ofhelp and information. Services are alsoavailable early intervention services foryoung children, educational services forschool-aged children, services availablethrough public agencies that can assistyour entire family. Having access to in-formation and supports may be critical inmaintaining a stable and healthy familylife.

To this end, we urge you to read, totalk to other parents who have a child witha disability, to talk with each other andwith other family members, and to reachout for assistance when you need it.

We conclude with the words of ClareClaiborne Park, as she reflects upon theexperience and emotions of being a par-ent of a child with disabilities.

This experience we did not choose,which we would have given anything toavoid, has made us different, has madeus better Through it we have learnedthe lesson of Sophocles andShakespeare that one grows by suf-fering. And that too is Jessy's gift. Iwrite now what fifteen years past Iwould still not have thought possible towrite: that if today I was given thechoice, to accept the experience, witheverything that it entails, or to refusethe bitter largesse, I would have tostretch out tny hands because out ofit has come, for all of us, an un-imagined life. And I will not change thelast word of the story lt is still love.'"

References1 Ramirez, C. (1993. April 19). [Unpub-

lished panelist remarks]. In A. Turnbull(Leader), Forum on future directions: W-sions and strategies for family-researchercollaboration. Forum conducted at the an-nual meeting of the Council for Excep-tional Children, San Antonio, TX.

2 Park, C. (1988). The siege: The first eightyears of an autistic child with an epilogue.fifteen years later (p. 320). Boston: Little.Brown.

3 Mahoney, G., O'Sullivan, R, & Robinson,C. (1992). The family environmentchildren with disabilities: Diverse but notso different. Topics in Early ChildhoodSpecial Education. 12(3). 386-402.

4 Blacher, J. (1989). Sequential stages ofparental adjustment to the birth of a childwith handicaps: Fact or artifact? In B.E.Hanft (Ed.), Family-centered care.Rockv ille, MD: American OccupationalTherapy Association.

5 Coleman, R. (1990, April). [Unpublishedremarks]. Washington, DC: The GeorgeWashington University.

6 Wikler. L., Wasow, M., & Hatfield, E.(1981). Chronic sorrow revisited: Parentvs. professional depiction of the adjustmentof parents of mentally retarded children.American Journal of Orthopsychiatty, 51.63-70.

7 Seligman, M., & Darling. R.B. (1989).Ordinary families, special children: A sys-tems approach to childhood disability.New York: Guilford Press.

8 Krahl. R. (1989). Rebuilding your dream:Family life with a disabled child (p. 6).Iowa City, IA: University of Iowa.

9 Levin, T. (1992). Rainbow of hope: Aguide for the special needs child (p. 3).North Miami Beach. FL: Starlight.

10 Sutton, B. (1982). A mother's view. Clini-cal proceedings. Children's Hospital Na-tional Medical Center. The Child withSpina Bifida: II Psychological, Educa-tional, and Family Concerns, 38(4), 213.[As cited in Pueschel, S., Bernier. J., &Weidenman, L. (1988). The special child:A sourcebook for parents and children withdevelopmental disabilities (pp. 16-17).Baltimore: Paul H. Brookes.]

McAnaney, K.D. (1992). I wish: Dreamsand realities of parenting a special needschild (pp. 17-18). Sacramento, CA: UnitedCerebral Palsy Associations, Inc.

12 Moore, C. (1990). A reader's guide forparents of children with menta!, physical,or emotional disabilities (3rd ed.).Rockv;l1e. MD: Woodbine Fouse.

13 Finston, P. (1990). Parenting plus: Rais-ing childwn with special health needs (p.28). New York: Dutton.

14 Ibid., p. 29.

15 Ibid., pp. 7-9.

11

14

16 Behr, J. (1991). [Testimony on early in-tervention.] In U.S. Senate, Senate reportto accompany S. 1106. Washington, DC:

GPO.

17 Callahan, C.R. (1990). Since Owen: Aparent-to-parent guide of the disabledchild. Baltimore, MD: John Hopkins Uni-versity Press.

18 McAnaney. K.D. (1992). 1 wish: Dreamsand realities of parenting a special needschild (p. 22). Sacramento, CA: United Ce-rebral Palsy Associations, Inc.

19 Kraft!, R. (1989). Rebuilding your dream:Family life with a disabled child (p. 7).Iowa City. IA: University of Iowa.

20 Ibid., p. 11.21 Lamb. M.E. (1976). Fathers and child de-

velopment: An integrative overview. In

M.E. Lamb (Ed.), The role of the father inchild development. New York: John Wileyand So is.

22 Featheistone. H. (1980). A difference inthe family: Lffe with a disabled child. NewYork: Basic Books.

23 Krahl, R. (1989). Rebuilding your dre..m:Family life with a disabled child (p. 12).Iowa City. IA: University of Iowa.

24 Ibid.. p. 14.

25 Finston, P. (1990). Parenting plus: Rais-ing children with special health needs (p.58). New York: Dutton.

26 Powell, T., & Gallagher, P.A. (1993).Brothers and sisters: A special part of ex-ceptional families (2nd ed.). Baltimore,MD: Paul H. Brookes.

27 Lobato, D.J. (1990). Brothers, sisters, andspecial needs. Baltimore: Paul H. Brookes.

28 See reference notes 26 and 27 above.

29 Ambler, L. (Ed.). (1988). Children withdisabilities: Understanding sibling issues.NICHCY News Digest, Number 11, 1-12.

30 Callahan, C.R. (1990). Since Owen: Aparent-to-parent guide for the disabledchild (p. 157). Baltimore: Johns HopkinsUniversity Press.

31 Krementz, J. (1992). How it feels to livewith a physical disability (p. 37). NewYork: Simon & Schuster.

32 Fi,,ston, P. (1990). Parenting plus: Rais-ing children with special health needs (p.72). New York: Dutton.

33 Ibid.. p. 81.

34 Bradford, T.H. (1991). Say that again,please! Insights in dealing with a hearingloss (p. iii). Dallas. TX: Author. (Availablefrom Thomas H. Bradford, P.O. Box

12206-Trust, Dallas, TX 75225. Attention:Ms. Carol Preston.)

35 Krementz, J. (1992). How it feels to livewith a physical disability (p. 16). NewYork: Simon & Schuster.

36 Ibid., p. 83.

37 Kriegsman, K.H., Zaslow, E.L.. &D'Zmura-Rechsteiner, J. (1992). Taking

charge: Teenagers talk about life andphysical disabilities (pp. 43-44).Rockville. MD: Woodbine House.

38 Routburg, M. (1986). On becoming a spe-cial parent: A mini-support group in a book(p. 32). Chicago: Parent/Professional Pub-lications.

39 Seligman, M., & Darling, R.B. (1989).Ordinary families, special children: A sys-tems approach to childhood disability.New York: Guilford Press.

40 Routburg, M. (1986). On becoming a spe-cial parent: A mini-support gmup in a book(p. 32). Chicago: Parent/Professional Pub-lications.

41 Cernoch. J. (1989). Respite care: A giftof time. NICHCY News Digest, Number12, 1-12.

42 Callahan, C.R. (1990). Since Owen: Aparent-to-parent guide for care of the dis-abled child (p. 175). Baltimore: JohnsHopskins University Press.

43 Cernoch, J. (1989). Respite care: A giftof time. N1CHCY News Digest, Number12, 1-12. (Quotation from page 1.)

44 Peck, C.A., Odom, S.L., & Bricker, D.D.(1993). Integrating young children withdisabilities into community programs: Eco-logical perspectives on research and imple-mentation. Baltimore, MD: Paul H.Brookes.

45 Cernoch, J. (1989). Respite care: A giftof time. N1CHCY News Digest, Number12, 1-12.

46 Moore, C. (1993). Maximizing familyparticipation in the team process. In L.Kiipper (Ed.), Second National Symposiumon Effective Communication for Childrenand Youth with Severe Disabilities: Topicpapers, reader's guide & videotape (pp. 43-

54). McLean, VA: Interstate Research As-sociates. (Quotation from page 49.)

47 Shelton. T., Jcppson, E., & Johnson, B.(1989. June). Family centered care forchildren with special health needs. Wash-ington, DC: Association for the Care ofChildren's Health.

48 Fewell, R.R., & Vadasy, P.F. (1986).Families of handicapped children: Needs

and supports across the life span. Austin:Pro-Ed.

49 Finston, P. (1990). Parenting plus: Rais-ing children with special health needs.New York: Dutton.

50 Dickman, I.R. (1989). The parent-profes-sional partnership: A parent's perspective.In J.M. Levy, RH. Levy, & B. Nivin (Eds.),Strengthening families: New directions inproviding services to people with develop-mental disabilities and their families (pp.97-104). New York: Young Adult Instituteand Workshop, Inc. (Quotation from page100.)

51 Featherstone. H. (1980). A difference in thefamily: Life with a disabled child (p. 78).New York: Basic Books.

52 Finston, P. (1990). Parenting plus: Rais-ing children with special health needs (p.188). New York: Dutton.

53 McBride, S., Brotherson, Joanning,H., Whiddon, D., & Demmit, A. (1992).Implementation offamily centered services:Perceptions of professionals and families.Unpublished manuscript, Human Develop-ment and Family Studies, Iowa State Uni-versity, Iowa.

54 Thompson, C.E. (1986). Raising a handi-capped child: A helpful guide for parentsof the physically disabled (pp. 101-102).New York: Ballantine Books.

55 Ibid., p. 102.

56 Clark, J., & Manes, J. (1992). Theadvocate:s guide to SS1 for children. Wash-ington. DC: Mental Health Law Project.

57 Thompson, C.E. (1986). Raising a handi-capped child: A helpful guide for parentsof the physically disabled (p. 103). NewYork: Ballantine Books.

58 Dickman, I.R. (1993). One miracle at atime: Getting help for child with a dis-ability (rev. ed.). New York: Simon &Schuster.

59 McLaughlin, M.J. (1993). Promisingpractices and future directions for specialeducation. N1CHCY News Digest, 2(2), 1-

24.

60 Wandry. D., & Repetto, J. (1993, March).Transition services in the 1EP. NICHCYTransition Summary, 1-28.

61 Park, C.C. (1988). The siege: The firsteight years of an autistic child with a epi-logue, fifteen years after (p. 320). Boston:Little, Brown.

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The publications and organizations listed below, as well as the resources listed throughout this News Digest. are only afew of the many that can provide information to parents and families about issues related to disability Additional sup-port is also available from state and local parent groups, as well as from state and local affiliates of many major disabil-ity organizations.

To assist you in obtaining documents listed in this issue, you will find the names, addresses, and telephone numbersof publishers on page 22. If you experience difficulty in locating a document or an organization, please contact NICHCY.

PRINT MATERIALS(Not Specific to a Particular Disability)

General Parent ReadingsBaker, B.L., & Brightman, A.J. (1989). Steps to independence: A skills

training guide for parents and teachers of children with special needs(2nd ed.). Baltimore: Paul H. Brookes.

Callanan, C.R. (1990). Since Owen: A parent-to-parent guide for careof the disabled child. Baltimore, MD: Johns Hopkins UniversityPress.

Cernoch. J. (1989). Respite care: A gift of time. NICHCY News Di-gest, Number 12. 1-12.

Clark, P., Kofsky. H., & Lauruol, J. (1989). Toa different drumbeat:A practical guide to parenting children with special needs. EastChatham, NY: Alliance for Parental Involvement in Education.

Duffy, S., McGlynn, K., Mariska, J., & Murphy, J. (1987). Accep-tance is only the first battle: How some parents of young handi-capped children have coped with common problems. Missoula, MT:Montana University Affiliated Program.

Featherstone, H. (1980). A difference in the family: Ltfe with a dis-abled child. New York: Basic Books.

Fewell, R.R., & Vadasy, P.F. (1986). Families of handicapped chil-dren: Needs and supports across the life span. Austin: Pro-Ed.

Finston, P. (1990). Parenting plus: Raising children with special healthneeds. New York: Dutton.

Goldfarb, L., Brotherson, M.J., Summers, J.A., & Turnbull, A. (1986).Meeting the challenge of disability: A family guide. Baltimore: PaulH. Brookes.

Krahl, R. (1989). Rebuilding your dream: Family life with a disabledchild. Iowa City, IA: University of Iowa.

Kupfer. F. (1989). Before and after Zachariah. Chicago, IL: Aca-demic Chicago Publications.

Kushner. H.S. (1989). When bad things happen to good people. NewYork: Random House.

Larson, G., & Kahn, J.A. (1991). Special needs - special solutions:How to get quality care for a child with special health needs. St.Paul, MN: Lifeline Press.

Levin, T. (1992). Rainbow of hope: A guide for the special needs child.North Miami Beach, FL: Starlight.

Lindemann, J.E., & Lindemann, SJ. (1988). Growing up proud: Aparent's guide to the psychological care of children with disabili-ties. New York: Warner Books.

McAnaney, K.D. (1992). I wish: Dreams and realities of parenting aspecial needs child. Sacramento, CA: United Cerebral Palsy Asso-ciations, Inc.

Moore, C. (1990). A reader's guide for parents of children with men-tal, physical, or emotional disabilities (3rd ed.). Rockvilie, MD:Woodbine House.

Park, C.C. (1988). The siege: The first eight years ofan autistic childwith an epilogue, fifteen years after Boston: Little, Brown.

Pueschel, S., Bernier, J., & Weidenman, L. (1988). The special child:A sourcebook for parents and children with developmental disabili-ties. Baltimore: Paul H. Brookes.

Ripley. S. (1990). A parent's guide to doctors, disabilities, and thefamilj. McLean, VA: NICHCY.

Ripley, S. (1993). A parent's guide to parent groups. McLean. VA:NICHCY.

Routburg, M. (1986). On becoming a special parent: A mini-supportgroup in a book. Chicago: Parent/Professional Publications.

Schleifer M.J., & Klein. S.D. (1985). The disabled child and the fam-ily: An Exceptional Parent reader. Boston, MA: Exceptional Par-ent.

Simon, R. (1987). After the tears: Parents talk about raising a childwith a disability. Orlando, FL: Harcourt Brace Jovanovich.

Thompson, C.E. (1986). Raising a handicapped child: A helpful guidefor parents of the physically disabled. New York: Ballantine Books.

Turnbull, A.P., Turnbull III, H.R., Bronicki, G.J.. Summers, J.A., &Roeder-Gordon, C. (1989). Disability and the family: A guide todecisions for adulthood. Paul H. Brookes.

Infants/Toddlers/Early Intervention ServicesBrown, W., Thurman, S.K., & Pearl, L.E (1993). Family-centered early

intervention with infants and toddlers: Innovative cross-disciplin-ary approaches. Baltimore, MD: Paul H. Brookes.

17

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Harrison, H., & Kositsky, A. (1983). The premature baby book: A par-ents' guide to coping and caring in the .first years. New York: St.Martin's.

Healy, A., Keesee. PD.. & Smith, B.S. (1989). Early services for chil-dren isith special needs: Transactions for family support (2nd ed.).Baltimore. MD: Paul H. Brookes.

Johnson, B.H., McGonigel, M.J., & Kaufmann, R.K. (1991). Guide-lines and recommended practices for the Individualized Family Ser-vice Plan (2nd ed.). Bethesda. MD: Association for the Care ofChildren's Health.

Upper, L. (Ed.). (1992). A parent's guide to accessing programs forinfants, toddlers, and preschoolers with disabilities. McLean, VA:NICHCY.

Segal. M. (1988). In time and with love: Caring for the special needsbaby New York: Newmarket.

Parent/Professional PartnershipGargiulo. R.M. (1985). Working with parents of exceptional children:

A guide for professionals. Boston: Houghton Mifflin.

Levy. J.M., Levy, P.H.. & Nivin, B. (Eds.). (1989). Strengthening fami-lies: New directions in providing services to people with develop-mental disabilities and their families. New York: Young Adult In-stitute and Workshop, Inc.

Tumbull, A.P., & Tumbull III, H.R. (1990). Families, professionals.and exceptionality: A special partnership (2nd ed.). Columbus, OH:Merrill.

Siblings and GrandparentsAmbler, L. (Ed.). (1988). Children with disabilities: Understanding

sibling issues. N1CHCY News Digest, Number 11, 1-12.

Epilepsy Foundation of America. (1992). Brothers and sisters: A guidefor families of children with epileps Landover, MD: Author.

Lobato, D.J. (1990). Brothers, sisters, and special needs: Informa-tion and activities for helping young siblings of children with chmnicillness and developmental disabilities. Baltimore: Paul H. Brookes.

McCaffrey. F.D., & Fish. T. (1989). Profiles of the other child: A sib-ling guide for parents. Columbus, OH: Nisonger Center.

Meyer, D.J.. & Vadasy, P.F. (1987). Grandparent workshops: How toorganize workshops for grandparents of children with handicaps.Seattle, WA: University of Washington Press.

Meyer, D.J., Vadasy, P.F., & Fewell. R.R. (1985). Living with a brotheror sister with special needs: A book for sibs. Seattle: University ofWashington Press.

Meyer, D.J., Vadasy. RF., & Fewell, R.R. (1986). Sibshops: A hand-book for implementing workshops for siblings of children with spe-cial needs. Seattle: University of Washington Press.

Pinkava. M.J. (1991). A handful of hope: Helpful suggestions forgrandparents of children with disabilities. Phoenix, AZ: Pilot Par-ent Partnerships, Inc.

Powell, T., & Gallagher, P.A. (1993). Bmthers and sisters: A specialpart of exceptional families (2nd ed.). Baltimore, MD: Paul H.Brookes.

Thompson, M. (1992). My brother Matthew Rockville, MD: Wood-bine. (Intended for siblings. grades K-5.)

Special Education and Related ServicesAnderson, W.. Chitwood, S., & Hayden. D. (1990). Negotiating the

special education maze: A guide for parents and teachers (2nd ed.).Rockville, MD: Woodbine.

Arena. J. (1989). How to write an I.E.P (rev. ed.). Novato, CA: Aca-demic Therapy.

Community Alliance for Special Education. (1991). Special educa-tion rights and responsibilities (rev. ed.). (Available from SpecialNeeds Project, 1482 East Valley Road, #A-121, Santa Barbara, CA93108. Telephone: (805) 565-1914; for orders. call 1-800-333-6867.)

Cutler, B.C. (1993). You, your child, and "special" education: A guldeto making the system work. Baltimore, MD: Paul H. Brookes.

Des Jardins, C. (1993). How to get services by being assertive. Chi-cago, IL: Family Resource Center on Disabilities.

Ferguson, S., & Ripley, S. (1991). Special education and related ser-vices: Communicating through letter writing. A Parent's Guide.11(1), 1-20.

Giangreco, M.F., Cloninger. C.J., & Iverson, V.S. (1993). Choosingoptions and accommodations for children: A guide to planning in-clusive education. Baltimore, MD: Paul H. Brookes.

Home. R.L. (1991). The education of children and youth with specialneeds: What do the laws say? NICHCY New.v Digest, 1(1), 1-16.

Kupper, L. (Ed.) (1993). Questions and answers about the IDEA.NICHCY News Digest, 3(2), 1-16.

Larson, G. (Ed.). (1988). Managing the school-age child with a chronichealth condition: A practical guide for schools, families, and orga-nizations. Wayzata, MN: DCI Publishing.

Martin, R. (1991). Parents in the special education process (a 3-vid-eotape series). Urbana, IL: Carle Center for Health Law and Eth-ics.

Questions often asked about special education services. (1992).McLean. VA: NICHCY.

Parent Advocacy Coalition for Educational Rights. (1992). Parentscan be the key..to an appropriate education for their child with dis-abilities. Minneapolis: Author.

Smith-Davis, J., & Littlejohn. W. (1991). Related services for school-aged children with disabilities. NICHCY News Digest /(2), 1-24.

Wilson, N.O. (1992). Optimizing special education: How parents canmake a difference. New York: Insight Books.

8

PRINT MATERIALS(Specific Disabilities)

AsthmaPlaut, T.F. (1988). Children with asthma: A manual for parents.

Amherst, MA: Pedipress.

Piaui, T.F. (1991). One minute asthma: What parents need to knowAmherst, MA: Pedipress.

Attention Deficit Hyperactivity Disorder (ADHD)Fowler, M.C. (1990). Maybe you know my kid: A parent's guide to

identifying, understanding, and helping your child with ADHD. NewYork: Birch Lane Press.

Fowler, M.C. (1991. September). Attention deficit disorder. NICHCYBriefing Paper 1-8.

Moss, D. (1989). Shelley the hyperactive turtle. Rockville, MD:Woodbine. (Intended for children aged 4-8.)

Taylor, J.F. (1990). Helping your hyperactive child. Rocklin, CA:Prima.

AutismHart, C.A. (1993). A parent's guide to autism: Answers to the most

common questions. New York: Pocket Books.

Powers. M.D. (Ed.). (1989). Children with autism: A parents' guide.Rockville. MD: Woodbine.

Wheeler. M.. Rimstidt, S., Gray, S., & De Palma, V. (1991 ). Facts aboutautism. Bloomington. IN: Indiana Resource Center for Autism.

Cerebral PalsyGeralis. E. (Ed.). (1991). Children with cerebral palsy: A parents'

guide. Rockville, MD: Woodbine.

Weiss. S. (1993). Each of us remembers: Parents of children with ce-rebral palsy answer ).our questions. Washington, DC: United Ce-rebral Palsy Associations, Inc.

Deafness/Hearing ImpairmentBradford. T. (1991). Say that again. please! Insights in dealing with

a hearing loss. Dallas, TX: Author. (Available from Thomas H.Bradford. P.O. Box 12206-Trust, Dallas, TX 75225. Attention: Ms.Carol Preston.)

Luterman. D.M. (1991). When your child is deaf: A guide for par-ents. Parkton, MD: York Press.

Schwartz. S. (Ed.). (1987). Choices in deafness: A parents' guide.Rockville, MD: Woodbine.

Down Syndromefierkus. C.W. (1992). Charlsie's chuckle. Rockville, MD: Woodbine.

(About a child with Down syndrome, this book is intended for gradesK-6.)

Cloud. H.H., & Drews, J. (1993). Nutrition and fitness for childrenWith Down syndrome: A guide for parents. Rockville, MD: Wood-bine.

Kumin, L. (1993). Communication skills in children with Down syn-drome: A guide for parents. Rockville, MD: Woodbine.

Pueschel, S.M. (Ed.). (1990). A parent's guide to Down syndrome:Toward a brighter future. Baltimore, MD: Paul H. Brookes.

Squires, A.F.. & Squires. A.C. (1990). Down syndrome: Now what doI do? Sandston, VA: Indian Orchard.

Stray-Gundersen, K. (Ed.). (1986). Babies with Down syndrome: Anew parents' guide. Rockville, MD: Woodbine.

Trainer, M. (1991). Differences in common: Straight talk on mentalretardation. Down syndrome, and Iife. Rockville, MD: Woodbine.

Van Dyke. V., Mattheis, P., Eberly. S., & Williams, J. (Eds.). (1- )3).Medical and surgical care for children with Down syndrome: A Naidefor parents. Rockville, MD: Woodbine.

EpilepsyFreeman, J.M.. Vining, E.P.G., & Pillas. D.J. (1990). Seizures and epi-

lepsy in childhood: A guid .. for parents. Baltimore, MD: JohnHopkins University Press.

Moss. D. (1989). Lee. the rabbit with epilepsy. Rockville, MD: Wood-bine. (Intended for children aged 4-8.)

Reisner, H. (Ed.). (1988). Children with epilepsy: A parents guide.Rockville, MD: Woodbine.

Learning DisabilitiesCummings, R., & Fisher, G. (1993). The survival guide for teenagers

with LD (learning differences). Minneapolis, MN: Free Spirit.

Dunn, K.B., & Dunn, A.B. (1993). Trouble with school: A family storywith learning diszbilities. Rockville, MD: Woodbine. (Intended forstudents in grades 1-5 and their parents.)

Huston, A.M. (1992). Understanding dyslexia. Lanham, MD: Madi-son Books.

Ktipper. L. (Ed.). (1992, April). Reading and learning disabilities: Aresource guide. NICHCY Briefing Paper 1-12.

Silver, L.B. (1991). The misunderstood child: A guide for parents ofchildren with learning disabilities (2nd ed.). New York: McGrawHill.

Smith, S.L. (1981). No easy answers: The learning disabled child.New York: Bantam.

Mental RetardationSmith, R. (Ed.). (1993). Children with mental retardation: A parents'

guide. Rockville, MD: Woodbine.

Trainer, M. (1991). Differences in common: Straight talk on mentalretardation, Down syndtpme, and life. Rockville, MD: Woodbine.

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Medical BooksBatshaw. M.L. (1991). Your child has a disability: A complete

wutrebook of daily and medical care. Boston: Little. Brown.

Batshaw. M.L., & Perret. Y.M. (1992). Children with dirabilities: Amedical primer (3rd ed.). Baltimore. MD: Paul H. Brookes.

Other DisabilitiesBarr. A.. & Barr. G. (Eds.). (in press). Children with Fragile X syn-

drome: A pals' guide. Rockville, MD: Woodbine.

Bloom, B.A., & Seljeskog. E.S. (1988). A parent's guide to spinabifida. Minneapolis. MN: University of Minnesota Press.

Brewer, E.J., & Angel, K.C. (1992). Parenting a child with arthritis:A practical. emphathetic guide to help you and your child live witharthritis. Los Angeles: Lowell House.

Dorris, M. (1989). The broken cord: A family's ongoing struggle withfetal alcohol syndrome. San Francisco: Harper Collins.

Eberle. T. (Ed.). (1992). Children with Tourette Syndrome: A por-ous' guide. Rockville, MD: Woodbine.

Hochstadt. N.J.. & Yost, D.M. (Eds.). (1991). The medically com-plex child: The transition to home care. New York: Harwood Aca-demic.

Holbrook, M.C. (Ed.). (in press). Children with visual impairments: Aparents' guide. Rockville. MD: Woodbine.

Hughes. B.K. (1990). Parenting a child with traumatic brain infuo:Springfield, IL: Cha l'_!s C. Thomas.

Jones, M.L. (1985). Home care for the chmnically ill or disabled child:A manual and sourcebook for parents and professionals. New York:Harper & Row. (Available from Special Needs Project. 1482 EastValley Road. #A-121, Santa Barbara, CA 93108. Telephone: (805)565-1914; for orders. call 1-800-333-6867.)

Loring. G. (1991). Parenting a child with diabetes: A practical.empathetic guide to help you and your child live with diabetes. LosAngeles: Lowell House.

Maddox, S. (in press). Spinal network: The total resource .for the wheel-chair community ;2nd ed.). Boulder, CO: Spinal Network.

McElroy, E. (1988). Children and edolescents with mental illness: Aparents' guide. Rockville. MD: Woodbine House.

J.H., Neal, W.A.. & Hoffmann. W.R. (1988). A parent:5 guide

to heart disorders. Minneapolis, MN: University of Minnesota Press.

Moller, K.T., Starr. C.D., & Johnson, S.A. (1989). A parent's guide tocleft lip and palate. Minneapolis. MN: University of MinnesotaPress.

Prensky, A., & Palkes, H. (1982). Care of the neurologically handi-capped child. New York: Oxford University Press.

Project School Care, Children's Hospital. (1992). Working towold abalance in our lives: A booklet for families af children with disabili-ties and special health care needs. Boston. MA: Author.

G.G. (Ed.). (1987). Children with spina bifida: Earlyintervention and preschool programming. Baltimore. MD: Paul H.Brookes.

Magazines and Newsletters

The Bond Intended for siblings and adult children of individuals withmental illness, this newsletter is published 4 times a year by the Sib-ling and Adult Children Network. National Alliance of the Mentally Ill,2101 Wilson Boulevard. Suite 302. Arlington, VA 22201. Telephone:(703) 524-7600. Price: $10.00/year.

Coalition Quarterly - Technical Assistance for Parent Programs (TAPP)Network, Federation for Children with Special Needs. 95 BerkeleyStreet, Suite 104, Boston, MA 02116. Telephone: 1-800-331-0688 (inMA); (617) 482-2915. Published quarterly. free.

Exceptional Children - Council for Exceptional Children, 1920 Asso-ciation Drive. Reston, VA 22091-1589. Telephone: (703) 620-3660.Published 6 times a year. Non-members, $45.00; Members. $14.00.

Exceptional Parent - Psy-Ed Corporation. P.O. Box 3000. DepartmentEP. Denville, NJ 07834. Published 9 times a year. Cost: $18.00. Newsubscriptions. call: 1-800-247-8080.

Families and Disability Newsletter - Beach Center on Families and Dis-ability. Bureau of Child Research, University of Kansas, 3111 HaworthHall, Lawrence, KS 66045. Telephone: (913) 864-7600. Published 3times a ye3r. free.

NASP Newsletter - National Association of Sibling Programs, SiblingSupport Project, Children's Hospital and Medical Center, P.O. Box5371, CL-09, Seattle, WA 98105-0371. Telephone: (206) 368-4911.Published for service providers.

Sibling Information Network News'etter - Sibling Information Network,A.J. Pappanikou Center, 1776 Ellington Road, South Windsor. CT06074. Telephone: (203) 648-1205. Published 4 times a year. For mem-bers, $8.50; Organizations, $15.00.

Special Parent/Special Child - Lindell Press. P.O. Box 462. South Sa-lem, NY 10590.

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ORGANIZATIONSThe organizations listed below are only a few of the many that provide services and information about disability issues to families.When calling or writing an organization, it is always a good idea to be as specific as you can in stating your needs and concerns. Forexample, state the gender and age of your child, the disability he or she has, and any special needs or interests you have in makingyour request. This helps organizations provide you with information that is truly helpful and on target.

Clearinghouses and Information CentersClearinghouse on Disability Information - Office of Special Educa-tion and Rehabilitative Services (OSERS), Room 3132, Switzer Build-ing, 330 C Street S.W., Washington, DC 20202-2524. Telephone: (202)205-8241; (202) 205-8274.

ERIC Clearinghouse on Disabilities and Gifted Education - Coun-cil for Exceptional Children. 1920 Association Drive, Reston, VA22091-1589. Telephone: (703) 620-3660.

HEATH Resource Center (National Clearinghouse on PostsecondaryEducation for Individuals with Disabilities) One Dupont Circle N.W..Suite 800, Washingtml, DC 200361193. Telephone: 1-800-544-3284(VoicerIT); (202) 939-9320 (in DC metropolitan area).

National Center for Education in Maternal and Child Health - 200015th Street North. Arlington, VA 22201-2617. Telephone: (703) 524-7802.

National Center for Youth with Disabilities - University of Minne-sota. Box 721. 420 Delaware Street S.E., Minneapolis, MN 55455.Telephone: 1-800-333-6293 (Voice); (612) 626-2825; (612) 624-3939(TT).

National Clearinghouse on Family Support and Children's MentalHealth - Portland State University, P.O. Box 751, Portland, OR 97207.Telephone: (503) 725-4040; 1-800-628-1696.

National Health Information Center (ONHIC) - P.O. Box 1133,Washington, DC 200131133. Telephone: (301) 565-4167; 1-800-336-4797.

National Information Center on Deafness - Gallaudet University. 800Florida Avenue N.E., Washington, DC 20002. Telephone: (202) 651-5051 (Voice); (202) 651-5052 (TT).

National Information Clearinghouse on Infants with Disabilities andLife-Threatening Conditions, Center for Developmental Disabilities,University of South Carolina, Benson Building, 1st Floor, Columbia.SC 29208. Telephone: 1-800-922-9234, ext. 201; in South Carolina,1-800-922-1107.

National Rehabilitation Information Center (NARIC) - 8455Colesville Road, Suite 935, Silver Spring, MD 20910. Telephone: 1-800-346-2742 or 1-800-227-0216 (Voice/TT); (301) 588-9284 (Voice/TT in MD).

Technical Assistance toParent Programs (TAPP) Network:National Office: Federation for Children with Special Needs, 95 Ber-keley Street. Suite 104, Boston, MA 02116. Telephone: (617) 482-2915(WTI).

Regional Offices:

West Region - Washington State PAVE, 6316 South 12th Street,Tacoma, WA 98465. Telephone: (206) 565-2266; 1-800-572-7368 (toll-free in WA).

Midwest Region PACER Center, 4826 Chi,:ago Avenue South, Min-neapolis, MN 55417. Telephone: (612) 827-2966 (V/T1'); in MN only,1-800-537-2737 (V/TT).

Northeast Region - Parent Information Center, P.O. Box 1422, Con-cord, NH 03302. Telephone: (603) 224-7005.

South Region - Parents Educating Parents Project, Georgia Arc, 1851Ram Runway, Suite 104, College Park, GA 30337. Telephone: (404)761-3150.

Government AgenciesAdministration on Developmental Disabilities - U.S. Department ofHealth and Human Services, 200 Independence Avenue S.W., Wash-ington, DC 20201. Telephone: (202) 6906590.

National Council on Disability - 1331 F St. N.W., Washington, DC20004-1107. Telephone: (202) 267-3846.

Office of Indian Education Programs, Bureau of Indian Aff drs(BIA) - MS 3512-MIB, 18th and C Streets N.W., Washington, DC20245. Telephone: (202) 343-3559.

Other OrganizationsThe Arc (formerly the Association for Retarded Citizens of the UnitedStates) - 500 East Border Street, Suite 300, Arlington, TX 76010. Tele-phone: (817) 261-6003.

Association for the Care of Children's Health - 7910 Woodmont Av-enue, Suite 300. Bethesda, MD 20814-3015. Telephone: (301) 654-6549.

Association for Persons with Severe Handicaps (TASH) - 11201Greenwood Avenue North, Seattle, WA 98113. Telephone: (206) 361-8870.

Beach Center on Families and Disability - Bureau of Child Research,University of Kansas, 3111 Haworth Hall, Lawrence, KS 66045. Tele-phone: (913) 864-7600.

Council for Exceptional Children, 1920 Association Drive, Reston,VA 22091-1589. Telerhone: (703) 620-3660.

March of Dimes Birth Defects Foundation - 1275 Mamaroneck Av-enue, White Plaines, NY 10605. Telephone: (914) 428-7100.

National Clearinghouse on Women and Girls with Disabilities - 114East 32nd Street, Suite 701, New York, NY 10016. Telephone: (212)725-1803.

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National rent Network on Disabilities - 1600 Prince Street, #I15,Alexandria, VA 22314. Telephone: (703) 684-6763.

Sibling Information Network - A.J. Pappanikou Center, 1776 EllingtonRoad, South Windsor, CT 06074. Telephone: (203) 648-1205.

Sibling Support Project Children's Hospital and Medical Center, P.O.Box 5371, CL-09, Seattle, WA 98105-0371.

Sick Kids (need) Involved People (SKIP) - 990.Second Avenue, 2ndFloor, New York, NY 10022. Telephone: (212) 421-9160; (212) 421-9161.

Zero to Three/National Center for Clinical Infant Programs - 200014th Street North, Suite 380, Arlington, VA 22201-2500. Telephone:(703) 5284300 (Voice); (703) 528-0419 (TT).

Disability-Specific OrganizationsThe list of all available disability-specific organizations is

far too extensive to print in this News Digest. Many of theseorganizations are listed on NICHCY's disability fact sheets. Factsheets are available on the following disabilities:

Autism and PDDCerebral PalsyDeafnessDown SyndromeEmotional DisturbanceEpilepsyLearning Disabilities

Mental RetardationSevere and/or Multiple DisabilitiesSpeech and Language ImpairmentsSpina BifidaTraumatic Brain InjuryVisual ImpairmentsAttention Deficit Disorder

If you are interested in contacting a disability-specific or-ganization that addresses the needs and concerns of individualswith one of these disabilities, please contact NICHCY and re-quest the fact sheet of interest to you. The sheet will containthe names, addresses, and telephone numbers of organizationsproviding information and/or services regarding that particulardisability.

If you have need of information on a disability that is notaddressed through a NICHCY fact sheet, please contactNICHCY, and we will try to put you in contact with an organi-zation that provides services and/or information about the dis-ability of concern to you.

LIST OF PUBLISHERS

The publishers listed below (in alphabetical order) are onlyity issues. Journals are listed at the end, also alphabetically. Wereaders obtain the resources listed throughout this News Digest.it's a good idea to contact the publisher and find out the latest pbers are, of course, subject to change without notice.

Academic Chicago Publications, 2213 W. Institute Place. Chicago, IL60610. Telephone: 1800-248-7323.

Academic Therapy Publications, 20 Commercial Boulevard. Novato,CA 94949. Telephone: (415) 883-3314.

Alliance for Parental Involvement in Education (ALLPIE), P.O. Box59. East Chatham, NY 12060-0059. Telephone: (518) 392-6900.

American Occupational Therapy Association, 1383 Piccard Drive,Rockville. MD 208504375. Telephone: (301) 948-9626.

Association for the Care of Children's Health, 7910 Woodmont Av-enue. Suite 300, Bethesda, MD 20814-3015. Telephon: (301) 654-6549.

Ballantine Books: Contact the Special Needs Project, 1482 East Val-ley Road, #A-121, Santa Barbara, CA 93108. Telephone: (805) 565-1914: for orders, call 1-800-333-6867.

Bantam Books, 1540 Broadway, New York, NY 10036. Telephone:(212) 354-6500 or 1-800-223-6834.

Basic Books: Contact Special Needs Project. 1482 East Valley Road,#A-121, Santa Barbara, CA 93108. Telephone. '805) 565-1914; for or-ders. call 1-800-333-6867.

Birch Lane Press, 120 Enterprise Avenue, Seacaucus, NJ 07094. Tele-phone: 1-800-447-2665.

Carle Center for Health Law and Ethics: Contact Baxley MediaGroup, 110 W. Main Street. Urbana, IL 61801. Telephone: (217) 384-4838.

Charles C. Thomas Publishers, 2600 S. First Street. Springfield, IL62794-9265. Telephone: (217) 789-8980.

DCI Publishing: Contact Sunrise River Press, 11481 Kost Dam Road,North Branch, MN 55056. Telephone: (612) 583-3239.

Dutton: Contact Penguin-USA Books, Box 999. Bergenfield, NJ 07621.Telephone: (212) 366-2000 or 1-800-253-6476.

Epilepsy Foundation of America, 4351 Garden City Drive, Landover,MD 20785. Telephone: 1-8(X)-332-1000; (301) 459-3700.

ETR Associates, P.O. Box 1830, Santa Cruz, CA 95061-1830. Tele-phone: (408) 438-4060; 1-800-321-4407.

Exceptional Parent, 1170 Commonwealth Avenue. Boston, MA 02134.Telephone: (617) 730-5800.

Family Resource Center on Disabilities, 20 East Jackson Boulevard,Room 900. Chicago. IL 60604. Telephone: (312) 939-3513; 1-800-952-4199.

Free Spirit Publishing, 4(X) First Avenue North, Suite 616, Minneapo-lis, MN 55401. Telephone: (612) 338-2068.

some of the many that provide information to parents about disabil-present this list of names, addresses, and telephone numbers to helpIf you are interested in obtaining any of the resources we've listed,ayment and ordering procedures. These addresses and phone num-

Government Printing Office (GPO). Superintendent of Documents,Washington, DC 20402. Telephone: (202) 783-3238.

Guilford Press, 72 Spring Street, New York, NY 10012. Telephone:1-800-365-7006.

Harcourt Brace Jovanovich, 6277 Sea Harbor Drive. Orlando. FL32887. Telephone: 1-800-543-1918.

Harper Collins, 1160 Battery Street, San Francisco, CA 94111. Tele-phone: 1-800-328-5125.

Harwood Academic, P.O. Box 786, Cooper Station. New York. NY10276. Telephone: (212) 206-8900.

Houghton Mifflin, Wayside Road. Burlington, MA 01803. Telephone:1-800-225-1464.

Indian Orchard Publications, P.O. Box 677, Sandston, VA 23150-°677. 'Telephone: (804) 226-4731.

Indiana Resource Center for Autism, Institute for the Study of De-velopmental Disabilities, 2853 East Tenth Street. Indiana University,Bloomington, IN 47405. Telephone: (812) 855-6508.

Insight Books, Division of Plenum Press, 233 Spring Street. New York,NY 10013. Telephone: 1-800-221-9369.

Interstate Research Associates, 7926 Jones Branch Drive. Suite 1100.McLean, VA 22102. Telephone: (703) 893-6061.

John Hopkins University Press, 701 West 40th Street. Baltimore. MD21211. Telephone: 1-800-537-5487.

John Wiley and Sons, Orders to: Eastern Distribution Center, 1 WileyDrive. Somerset, NJ 08875-1272. Telephone: 1-800-225-5945.

Lifeline Press, 2500 University Avenue, St. Paul, MN 55114. Tele-phone: (612 ) 659-9114.

Little, Brown, 200 West Street. Waltham, MA 02254. Telephone: 1-800-759-0190.

Lowell House: Contact RGA Publishing, 2020 Century Park East. No.3290, Los Angeles, CA 90067. Telephone: (310) 552-7555. ext. 112.

Madison Books, 4720 Boston Way, Lanham, MD 20706. Telephone:(301) 459-5308; 1-8(X)-462-6420.

McGraw Hill: Contact McGraw Hill Retail. 13311 Monterey Lane,Blue Ridge Summit, PA 17294. Telephone: (717) 794-5461.

Mental Health Law Project (now known as Judge David L. RazelonCenter for Mental Health Law). 1101 Fifteenth Street N.W.. Suite 1212.Washington. DC 20005. Telephone: (202) 467-5730.

Merrill, Contact Macmillan Publishing Company. 1(X) Front Street. Box5(X). Riverside. NJ 08075-75(X). Telephone: 1-800-257-5755.

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Montana University Affiliated Program, University of Montana,Missoula, MT 59812. Telephone: (406) 243-5467.

Newmarket Publishing and Communications, 18 E. 48th Street. NewYork, NY 10017. Telephone: (212) 832-3579; 1-800-669-3903.

NICHCY (National Information Center for Children and Youth withDisabilities), RO. Box 1492, Washington, DC 20013. Telephone: 1-800-999-5599 (outside DC metropolitan area); (703) 893-6061 (in DCmetropolitan area); (703) 893-8614 (Tr).

Nisonger Center, Publications Office, Mc Campbell Hall, Room 434,1581 Dodd Drive, Columbus, OH 43210. Telephone: (614) 292-8365.Ask for the Publications Office.

Oxford University Press, 2001 Evans Road, Cary, NC 27513. Tele-phone: 1-800-451-7556.

Parent Advocacy Coalition for Educational Rights (PACER Center),4826 Chicago Avenue South, Minneapolis, MN 55417. Telephone:Outside of MN, (612) 827-2966; in MN, 1-800-537-2237.

Parent/Professional Publications, RO. Box 59730, Chicago, IL 60645.Telephone: (312) 262-8882.

Paul H. Brookes Publishing Company, P.O. Box 10624, Baltimore,MD 21285-0624. Telephone: 1-800-638-3775.

Pedipress, Inc., 125 Red Gate Lane. Amherst, MA 01002. Telephone:1-800-344-5864.

Penguin Books-USA, Box 999, Bergenfield, NJ 07621. Telephone:(212) 366-2000 or 1-800-253-6476.

Pilot Parent Partnerships, Inc.. 2150 E. Highland Avenue, Suite 105,Phoenix, AZ 85016. Telephone: (602) 468-3001. In AZ, 1-800-237-3007.

Pocket Books, Simon & Schuster. Order Department. 200 Old TappanRoad, Old Tappan, NJ 07675. Telephone:1-800-223-2348 (customerservice); 1-800-223-2336 (orders only).

Prima Publishing & Communications, P.O. Box 1260JT, Rocklin,CA 95677. Telephone: (916) 624-5718.

Pro-Ed, 8700 Shoal Creek Boulevard, Austin, TX 78758. Telephone:(512) 451-3246.

Project School Care, Children's Hospital: Contact Children's Hospi-tal, Project School Care, Gardner 6, 300 Longwood Avenue, Boston,MA 02115. Telephone: (617) 735-6714.

Random House, 400 Hahn Road. Westminster, MD 21157. Telepitone:1-800-733-3000.

Simon & Schuster, Direct Mail Center. Order Processing Department.P.O. Box 11071, Des Moines. IA 50336-1071. Telephone: 1-800-374-1200; (515) 284-6751.

Spinal Network, P.O. Box 4162. Boulder, CO 80306. Telephone: 1-800-338-5412.

St. Marlin's Press, 175 Fifth Avenue, New York, NY 10010. Tele-phone: 1-800-288-2131 (outside of NY); (718) 984-3398 (inside NY).

Starlight Publishing Company, Inc., 1893 N.E. 164 Street, Suite 100,North Miami Beach, FL 33162. Telephone: (305) 944-8446.

United Cerebral Palsy Associations, Inc.: Contact UCPA of Califor-nia, 1507 21st Street, Suite 204, Sacramento, CA 95814. Telephone:(916) 442-3573. For S. Weiss's book. contact UCPA, 1522 K StreetN.W., Suite 1112, Washington, DC 20005. Telephone: (202) 842-1266( \WI); 1-800-872-5827 (V/T1').

University of Iowa: Contact Campus Stores, The University of Iowa,100 Oakdale #M105, Iowa City, IA 52242. Telephone: (319) 335-4645.

University of Minnesota Press, 2037 University Avenue Southeast,Minneapolis, MN 55414. Telephone: 1-800-388-3863.

University of Washington Press, P.O. Box 50096, Seattle, WA 98145-5096. Telephone: (206) 543-4050. Orders only: 1-800-441-4115.

Warner Books, Contact Little, Brown, 200 West Street, Waltham, MA02254. Telephone: 1-800-343-9204.

Woodbine House, 5615 Fishers Lane. Rockville. MD 20852. Tele-phone: Outside of the DC metropolitan area. call 1-800-843-7323; call(301) 468-8800 in DC metropolitan area.

York Press, P.O. Box 504, Timonium, MD 21094. Telephone: (410)560-1557.

Young Adult Institute and Workshop, Inc.. 460 West 34th Street, NewYork, NY 10001. Telephone: (212) 563-7474.

JournalsAmerican Journal of Orthopsychiatry, 19 W. 44th Street, New York,NY 10036-6096. Telephone: (212) 354-7700.

NICHCY Briefing Paper - Contact NICHCY, P.O. Box 1492, Washing-ton, DC 20013. Telephone: 1-800-999-5599 (outside of DC area); (703)893-6061 (in DC area); (703) 893-8614 (TT).

NICHCY News Digest - Contact NICHCY, P.O. Box 1492, Washing-ton, DC 20013. Telephone: 1-800-999-5599 (outside of DC area); (703)893-6061 (in DC area); (703) 893-8614 (TT).

NICHCY Transition Summary - Contact NICHCY, P.O. Box 1492,Washington, DC 20013. Telephone: 1-800-999-5599 (outside of DCarea); (703) 893-6061 (in DC area); (703) 893-8614 (TT).

Parent's Guide - Contact NICHCY, P.O. Box 1492, Washington. DC20013. Telephone: 1-800-999-5599 (outside of DC area); (703) 893-6061 (in DC area); (703) 893-8614 (11').

Topics in Early Childhood Special Education - Contact Pro-Ed, 8700Shoal Creek Boulevard, Austin, TX 78758. Telephone: (512) 451-3246.

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News Digest is published three times each year. Individual subscriptions in the United States are free. In addition,

NICHCY disseminates other materials and can respond to individual requests. Single copies of NICHCY materials and

information services are provided free of charge. For further information and assistance, or to receive a NICHCY Publi-

cations List, contact NICHCY, P.O. Box 1492, Washington, DC 20013, or call 1-800-999-5599 (Toll-free, except in the

DC Area); (703) 893-6061 (in the DC Area); (703) 893-8614 (TT).NICHCY thanks our Project Officer, Dr. Sara Conlon, at the Office of Special Education Programs, U.S. Depart-

ment of Education, for her time in reading and reviewing this document. We also thank the following individuals fortheir thoughtful review and valuable insights on drafts of this News Digest: Susan Duffy, Parent, Writer, and Advocate,

Missoula, MT; Theresa Rebhom, Parent Educational Advocacy Training Center (PEATC), Alexandria, VA; and Ann Gor-

don, Child Find, Falls Church, VA.PROJECT STAFF

Project Director Susan Elting

Deputy Director Suzanne Ripley

Editor Lisa Upper

AUTHORS

You Are Not Alone Patricia McGill SmithNational Parent Network on Disabilities

Alexandria, Virginia

The Unplanned Journey Carole Brown. Ph.D.The George Washington University, Washington, DC

Samara Goodman, M.A.Fairfax County Schools, Fairfax, Virginia

Lisa KiipperNICHCY, Washington, DC

This document was developed by Interstate Research Associates. Inc., pursuant to Cooperative Agreement #H030A00002 with the

Office of Special Education Programs of the United States Department of Education. The contents of this document do not necessarily

reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products. or organizations imply

endorsement by the U.S. Government.This information is in the public domain unless otherwise indicated. Readers are encouraged to copy and share it, but please credit the

National Information Center for Children and Youth with Disabilities. Your comments and suggestions for News Digest are welcomed.

Please share your ideas and feedback with our staff by writing to the Editor.

IMPORTANT: If this newsletter is no longer being read at this address or if more than one copy is being delivered, please let

us know by calling 1-800-999-5599. Please do not return unwanted newsletter& share them with others.

Interstate Research Associates

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