Collaborating with Families and Professionals

Objectives Participants will consider what families experience when they learn their child has a special need. Participants will develop strategies for discussing concerns about a child’s development with families. Participants will identify strategies to successfully collaborate with families. Participants will identify strategies to successfully collaborate with other service providers. Participants will become familiar with the Individual Education Program (IEP) and Individual Family Service Plan (IFSP). Participants will develop a list of community resources and supports for children with special needs.

Definition of Families Think about the families you work with. What would you use as a definition of “families”?

Definition of Families created by The New Mexico Task Force on Young Children and Families “Families are big, extended, nuclear, multigenerational, with one parent, two parents, and grandparents. We live under one roof or many. A family can be as temporary as a few weeks, or as permanent as forever. We become a part of a family by birth, adoption, marriage, or from a desire for mutual support… A family is a culture unto itself, with different values and unique ways of realizing its dreams; together our families become the source of our rich cultural heritage and spiritual diversity… Our families create neighborhoods, communities, states, and nations.”

Aracelly and Elizabeth

Aracelly and Elizabeth Reflection What are your reactions to the video? What were some of Aracelly’s concerns? What would you identify as Aracelly’s priorities? What are some of the things that the family went through?

Working with Families Activity Take 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.

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?

Welcome to Holland by Emily Perl Kingsley I 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.

What do you say to parent when you have concerns about their child’s development? How might parents react?

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 Reactions Never judge a parent’s reaction Acknowledge emotions and allow parents to express them Put 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 21

Preparing to Talk to Parents Keep 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 Parents Ideally, 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 meeting Think 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 Meeting Private place Protected, uninterrupted time Seats for everyone Same seats for everyone Stay at eye level Don’t sit behind a desk

Be prepared Have 3-4 key points Don’t tell the parents a diagnosis Rehearse the beginning sentence or two Know the “tool(s)” and what the results mean Be prepared to discuss next steps Have information to send home Anticipate your own reactions Think about what you are going to say. Think about what those words will mean to the parents. 25

Use specific techniques Thank the parents for coming Start 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 silence 26

Tips to Remember Use common words and avoid jargon Talk positively Be calm but concerned Listen to the parents Let parents finish before you talk Be honest without being unkind Encourage the parents to talk Keep 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 29

Arrange to follow up All information may not be absorbed at first meeting Encourage family to write down questions If family desires, arrange a follow up meeting and clarify key points Find out what method of follow up communication work best for the parent(s): in- person, telephone, , journal, etc… 30

Take care of yourself You may experience feelings of sadness, anger, guilt or relief Pay attention to your own emotions Debriefing may be helpful Seek support and comfort from fellow staff Be confident that you’re doing the right thing 31

C ULTURE M ATTERS W HEN W E T ALK WITH F AMILIES

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).” “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 -- Anderson & Fenichel, 1989, Zero to Three 34

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,

For Example: Different Cultures May View Developmental Problems in Very Different Ways Some 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 Competence Do 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 Moore & Perez-Méndez, 2009

Sharing Results with Families: Each Family May Be Different Do 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? 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? MCETT, 2002

Tools to use with families: Routine Activity Based Programming

Tools to use with families: Routine Based Interview

ROUTINES-BASED INTERVIEW Child-Care Center Suggested Routines Arrival/Departure Snack/Mealtime Toileting Circle Time Gross Motor Time Nap/Wake-up Independent Play Table Activities Transitions Diapering/Dressing

Some examples of questions to ask What happens at arrival? What does Mom do? What does child do? Where does child sleep? Does he fall asleep on his own? How does he wake up? How does he let you know he’s awake; what does he want? picked up right away? Does child let you know when he needs changed? How? Is child still in diapers? What does he during diapering? Does he/she ever let you know he has to “go”? During meal, where does child sit; is he eating solids?; using a bottle, cup? How, and what kind? Does he finger feed or is he using utensils? How does he let you know he wants more, drink, bite, is finished, etc? Independent play – can he entertain himself? Does he observe others, engage with or otherwise interact with others? Will he choose and play with a toy or does he need modeling, verbal direction? Circle time – will he participate, observe, imitate what is going on? Does he engage with others? How independent is he during this time; does he need assistance? What kind of seating? Is he at the same level with peers? Does child like to play with a variety of sensory toys/materials? How does he react to soft, squishy, sticky, etc? What happens during gross motor time? How does child “get there”? How independent? What are the others doing that he is unable to or chooses not to do?

Small Group Activity Think of a child in your program that you currently or in the past have had concerns about. You can use one of their children that you filled out a routine based interview or routine based activity form on. As a group come up with some specific ideas about how you would talk to this parent about your concerns. Discuss the specifics about what you would say to parents to set up the meeting. Discuss a few phrases or language you might use at the meetings to talk to families about your concern. Think about how you might use the routine based tools in your discussion.

Ways to empower your families by using the RBI By using tools like the RBI you can give the family a better picture of what you see in their child’s daily routines. Suggest taking this to their next doctor appt. so that the doctor can see all that the child is doing Make available to them one for at home. You can change the routines up. (wake up, breakfast, bath time, neighborhood play, bedtime, etc..) this will help you see what their daily routine is like at home. Breaking it out by routine and not identifying an “issue” it becomes more family friendly. Every family has a routine