Working with FamiliesActivityTake out a scrap piece of paper. Imagine

you just found out that you were going to have a child. Take a minute to think about what you would want for that child.

Now, write down 5 goals that you might have for the child when he/she grows up.

Imagine that you were just told that your child has a disability. (For example- Down Syndrome, Autism, etc…)

Think about how your goals for that child would be different.

Write 5 goals on your paper that you would have for a child with disabilities.

Welcome to Hollandby Emily Perl KingsleyI am often asked to describe the experience of raising a

child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

Welcome to Holland(continued)But there's been a change in the flight plan. They've

landed in Holland and there you must stay.The important thing is that they haven't taken you to a

horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

Welcome to Holland(continued)

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Some Common Fears of Parents Related to Child Care

◦ Center won’t accept child◦ Center will kick child out of program◦ If problems arise, parent may have to leave work to come to

center◦ Will they be able to care for my child◦ What will other parents and children think

Other concerns◦ Fear of being labeled◦ Social rejection◦ Scared for the future◦ Divorce common among families with children with special

needs◦ Don’t know what to do◦ How bad will it be◦ Did I cause this?◦ Will family members still love the child?

Common Parent Reactions

Denial “This cannot be happening to me, to my child,

to our family”◦ Denial can merge with anger. This anger might be

directed toward the person involved in providing information about their child.

◦ Anger might also occur between husband and wife or with grandparents.

◦ This anger can become intense because it is triggered by feelings of grief and inexplicable loss that the parent may not know how to explain or deal with.

Common Parent Reactions

Fear “Will he ever learn? What is going to happen

when he is 5, 12, 21…? Will the condition get worse?”◦ Fear can also be an immediate response.◦ There can be a lot of uncertainty that creates fear-

about the future, outlook for the child, diagnosis, etc…

◦ Some parents expect the worst◦ There can be fear about society’s rejection, how

siblings will be affected, or will everyone love this child.

◦ The fear can almost immobilize some parents

Common Parent Reactions

Guilt “Why me?” “What did I do to deserve

this?”◦ Guilt may be manifested in spiritual or

religious interpretations of blame or punishment. “Why has God done this to me?”

◦ Parent may think they did something to cause the problems with their child

Common Parent Reactions

Confusion◦ Parents may not fully understand what is

happening or what will happen.◦ Sometimes confusion reveals itself as

sleeplessness, inability to make decisions, or mental overload

◦ Parents hear new words they have never heard before and terms describing things they don’t understand.

◦ They may want to find out what it is all about but just can’t make sense of all the information they are receiving.

Common Parent Reactions

Powerlessness◦ Parents have a hard time accepting what is

happening and the fact that they can’t change it.◦ Parents want to feel competent and capable of

handling their own life situations yet they are forced to rely on judgments, opinions, and recommendations of others.

◦ Often the people providing parents with this recommendations are strangers to the parents. The family may not have any bond or trust established with the professional yet.

Common Parent Reactions

Disappointment◦ Parents egos may be threatened by the idea

that their child is not perfect.◦ The jolt to parent’s previous expectations can

create reluctance to accept the child’s needs.

Common Parent Reactions

Rejection◦ Rejection might be directed toward the child,

the professional, or a family member.◦ Some parents have more serious forms of

rejection and may have a “death wish” for the child. This is a time that many parents report as their deepest point of depression.

Anticipate Potential ReactionsNever judge a parent’s reactionAcknowledge emotions and allow

parents to express themPut yourself in the parent’s shoes

◦ What the parent may be feeling: “I don’t care how much you know until I know how much you care [about my child and about me]”

Expect different reactions from parents

14

Preparing to Talk to ParentsKeep a record of the child’s behavior

◦ Write down the things you notice that make you think there is a problem including date, time, place, etc…

◦ Complete screenings and/or assessments and have results for the parents

Try to get a sense of how easy it might be to talk to the parents. Some parents will not be surprised to hear there are concerns. Other parents may have never thought about it and will need some time to get used to the idea.

Setting Up a Meeting with ParentsIdeally, you want to invite both parents and

any other significant family members.Find a time that is convenient for the parents.

You don’t want to have to rush the meeting so you can get back to the classroom or so the parents can make it to work on time.

Tell the parents the topic of the meetingThink about what staff need to be at the

meeting. Let the parents know ahead of time who will be there.

Have a plan if the parents bring the child or other children to the meeting.

Setting the Stage for the MeetingPrivate placeProtected, uninterrupted timeSeats for everyoneSame seats for everyoneStay at eye levelDon’t sit behind a desk

Be preparedHave 3-4 key pointsDon’t tell the parents a diagnosisRehearse the beginning sentence or twoKnow the “tool(s)” and what the results meanBe prepared to discuss next stepsHave information to send homeAnticipate your own reactionsThink about what you are going to say. Think

about what those words will mean to the parents.

18

Use specific techniquesThank the parents for comingStart with the parent

◦ Have parents share first◦ Listen and validate

Get to the point quickly◦ Start with strengths◦ Be factual

Have some resources for parents.It’s sometimes helpful to let parents know you

want them to take time to think about things before making decisions.

Finish the meeting on a positive way and with a plan

Be comfortable with silence19

Tips to RememberUse common words and avoid jargonTalk positivelyBe calm but concernedListen to the parentsLet parents finish before you talkBe honest without being unkindEncourage the parents to talkKeep an open mind. Think about the

“issue” not about how good the parents are. Work together for the child.

More Tips…Give parents feedback (I hear you

saying…. It sounds to me like you are worried about…)

Be aware of body language. Be sure your body language show friendliness.

When facing criticism, avoid being defensive. Show calmness and willingness to meet the parent’s needs.

Ask the parent questions that might help you understand their point of view or how they are feeling.

Negotiate future steps

Maintain optimism and hope◦Next steps (e.g., referral to the

school or Part C agency for evaluation, developmental evaluation)

◦Without evaluation and information, the child may fall even more behind

◦Intervention can make a difference◦Resources to read after you’ve

talked 22

Arrange to follow upAll information may not be absorbed

at first meetingEncourage family to write down

questionsIf family desires, arrange a follow up

meeting and clarify key pointsFind out what method of follow up

communication work best for the parent(s): in-person, telephone, e-mail, journal, etc… 23

Take care of yourselfYou may experience feelings of

sadness, anger, guilt or reliefPay attention to your own emotionsDebriefing may be helpfulSeek support and comfort from fellow

staffBe confident that you’re doing the

right thing24

CULTURE MATTERS WHEN WE TALK WITH FAMILIES

What is Culture?Culture is the frame through which we view our

world.• Culture is celebrations, dress, language, food and physical

characteristics . . . and values, assumptions, beliefs & history.

• Culture is also impacted by the process of “acculturation” (the

process through which the attitudes and/or behaviors of people from one culture are modified as a result of contact with a different culture).

• There are NO universal descriptions about particular cultures.• Culture is not static: it is dynamic and ever-changing.• In describing any culture or cultural practice, differences within that

culture are as great (sometimes greater) as differences between that culture and others.

“There exists no generic entity which may be dubbed the Southeast Asian family, the Native American family . . . each of these categories encompasses numerous cultures, and their individual members may share tendencies in some areas and not in others. Individuals and families will be found to lie along different points of their cultural continuum (from traditional, for example, to fully bicultural).”

-- Anderson & Fenichel, 1989, Zero to Three

27

Our Goal: Cultural Competence

• An ability to adapt activities, services, and programs to respond to the cultural and ethnic diversity of a particular community

• Requires an awareness of the cultures represented, learning about some of the general parameters of those cultures, and realizing that diversity will affect families’ participation in programs -- MCETT, 2002

28

For Example: Different Cultures May View Developmental Problems in Very Different WaysSome families may believe that . . .Disability is “scientific” (i.e., can be explained in

“scientific” ways, e.g., a genetic cause).Disability is chronic.Disability should be fixed as much as possible. Interventions are good. Independence is a goal.Disability is a government problem.Current development predicts the future.Parents should be active partners in intervention.Follow recommendations to the letter.

-- MCETT, 2002

For Example: Different Cultures May View Developmental Problems in Very Different Ways

Other families may believe that . . . Disability is “spiritual.” Disability is time-limited. Disability must be accepted. Change may create disharmony. Interdependence is the goal. Disability is a family issue. We cannot know what the future will bring. Professionals know better. They should interpret recommendations to fit

tradition and intuition.

-- MCETT, 2002

Developing Cultural CompetenceDo not make premature conclusions about the

state or status of culturally different families. Know when to generalize because the family’s

beliefs and values fit within a traditional cultural context.

Know when to individualize because the family’s beliefs and values do not fit within a traditional cultural context.

Recognize when cultural specific expertise is needed to facilitate communication and reciprocal understanding with families from cultures different from your own.

31-- Moore & Perez-Méndez, 2009

Sharing Results with Families: Each Family May Be DifferentDo I know how to find out more about

this particular community?Do I have access to someone who can

help me learn?Do I know what skills are required of a

quality interpreter for this community?Am I aware of the people with whom

the child spends time, and their level of acculturation?

32-- MCETT, 2002

Sharing Results with Families: Each Family May Be Different

What do I know about the child-rearing practices of this particular community? Of this particular family?

How are decisions made in this particular community? In this particular family?

Who speaks on behalf of this child and family?Now that I know the answers to these questions,

o Who should be included when we talk with this family about their child?

o How will we communicate our concerns about their child’s development to this family?

33-- MCETT, 2002