1. Instructor: Diana Shultz, MS, LCSW
Welcome group and cover housekeeping issues: break, connectivity issues, passing the floor, text chat, etc.
Bridge to agenda and move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

2. Agenda
Introductions
Stress in raising children with developmental disabilities
Signs of stress
Stress management techniques
Importance of Networking
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Review agenda.
Complete introductions.
Bridge to handout material and ask if participants received their’s.
Move to next slide that outlines material that should’ve been shipped to participants.

3. Material Shipped
Handout Book: Developmental Disabilities: Web Based Training for Foster/Adoptive Parents – Raising Children with Developmental Disabilities: The Impact on Family Life
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Clarify that participants can also access the handout material via the web (and that it can be accessed within this class) at
Bridge to course rationale and move to next slide.

4. Course Rationale
Caring for a child with DD can be most taxing on caretakers, and the rest of the family.
The child with DD can become the life project of one or both of the caretakers, at the expense of the rest of the family.
About 70% of families with a child with a disability end up splitting.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Review bulleted items.
Highlight the stress associated with parenting children with DD and move to next slide.

5. Families and Stress Parallels to Relationship Family families to
characteristics
Parallels to
families
caring
for
children
with DD
Relationship to
stress
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Poll group to see who went thru 10 weeks of MAPP or 7 weeks of Deciding Together – remind those who did that they talked about family characteristics in those programs.
Ask group, “What characteristics of a family system do you remember?” i.e., rules, roles, boundaries, communication patterns, decision-making/power structure, homeostasis.
Explain that we’ll look at each characteristic, how things change while parenting a child with DD and consider how these shifts relate to our relationship with stress.
Ask group to define STRESS. Note responses on pwrbd and validate responses.
Move to next slide that defines it.

6. Stress Review the above.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Review the above.
Note that stress is predictable. Stress is a sign of life. Some levels are healthy. Stress can be a wonderful motivator. Extreme levels of stress are toxic, with both a physical and an emotional impact.
New events, new feelings bring stress.
Its predictable so we can plan strategies. Explain that we’ll look at strategies that will help families maintain balance.
Bridge to the list of family system characteristics and move to next slide.

7. Family Systems Characteristics
Homeostasis
Boundaries
Rules
Roles
Decision Making/Power Distribution
Communication
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Remiind group that they may be familiiar with these characteristics; they were introduced in MAPP.
Briefly review each the above and bridge to discussion of homeostasis.
Move to next slide.

8. Homeostasis
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Use the mobile and the water-bed to illustrate what happens to the family’s balance when a new person enters the system, i.e., adding/removing something from the mobile or someone from the waterbed has the same result: the system is knocked off balance temporarily.
Self-disclose experience with own family being knocked off balance.
Ask participants, “In what ways was your family system knocked off balance once becoming a foster family to a child with a DD?”
Validate responses.
Ask participants, “What helps your family system find and maintain a healthy balance?” Note responses on pwrbd.
Summarize discussion on homeostasis and its relationship to stress.
Bridge to brief comments about the service delivery system.
Move to next slide

9. Department of Health Medical
Community of Services
Department of Health Medical
Therapeutic
Early Intervention
Early Childhood
Direction Centers
Appro
ved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
DSS/ACS
OPWDD
DDSO
DSO
Note the stress that ‘s presented by trying to negotiate the service delivery system.
Ask participants, “In what ways can the DD service delivery system knock a family off balance?” Validate responses.
Note the child serves as a “thermostat” for the family. Some may second-guess decision to foster/adopt.
Ask participants, “How can your family better maintain balance while negotiating this community of services?”
Summarize this discussion on homeostasis and bridge to one about boundaries, another characteristic of the family sytem.
Move to next slide.
SSI/SS
Medicaid
Education Department

10. Boundaries
Self-disclose experiences with changing boundaries.
Explain that a family’s boundaries clarify who belongs in the family and who doesn’t. Boundaries help determine what information about the family is allowed “out” and what people/things/information are allowed “in.”
Note that healthy boundaries are permeable, allowing appropriate movement of people and information back and forth. They are distinct, clearly delineating who and what’s part of the family.
Illustrate very open boundaries on the pwrbd.
Ask group, “What risks does the family run that has very open boundaries?”
Validate responses.
Illustrate very closed boundaries on the pwrbd.
Ask group, “What risks does the family run that has very closed boundaries?”
Ask group, “In what ways can a family’s boundaries change after parenting a child with DD?” Validate responses.
Ask group, “How can families fostering children with DD maintain healthy boundaries?” Post responses on pwrbd (i.e., screen phone calls, use answering machine, child-proof access to technology, private phone listing, relocate to different neighborhood, etc.)
Summarize discussion on boundaries and bridge to one on rules.
Move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

11. Rules
Lecturette:
Note that all families have rules, albeit many different kinds of rules. Some are stated and formal. Some unstated and informal. Some are negotiable, some non-negotiable. Rules that are well ingrained become routines.
Ask group, “How can a family’s rules change once it’s a foster family for a child with DD?” Validate responses (i.e., new rules, discard old rules, post routines).
Summarize discussion on rules and bridge to one on roles, another characteristic of the family system.
Move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

12. Roles Introduce discussion on family roles:
Each family member has a role in that family. All the roles, taken together, help maintain the family’s homeostasis.
A parent carries many roles, all at once: chief cook and bottle washer, cab driver, nurse, coach, disciplinarian, etc.
Children also carry roles: the sensitive one, the clown, the risk-taker, the oldest, youngest, middle child, the worker, the studious one, Daddy’s little girl, etc.
Ask group, “How might roles be affected with the placement of a child with DD into the family?” Validate responses.
Ask group, “How can the foster family manage the impact of changing roles that comes with this placement?” Note responses on pwrbd.
Emphasize the need to be flexible, sharing additional roles and responsibilities, as these “ripple effects” of changing family systems.
Summarize discussion on roles and bridge to one on Decision-Making/Power Distributions, another characteristic of the family system.
Move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

13. Decision Making/Power Distributions
Ask the group, “How had decision-making changed in your family system since it included a child with DD?”
Validate responses.
Ask the group, “How has the distribution of power changed since your family system included a child with DD?”
If not mentioned, note the that the community of services shares decision making and power, along with the child’s family.
This redistribution of power results in more stress on the family system.
Ask the group, “What can the foster family do to make this a smoother, less stressful transition for everyone concerned?”
If not mentioned, emphasize the importance of family meetings and partnership efforts.
Summarize discussion on decision-making/power distributions and bridge to one on communication.
Move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

14. Communication
Ask group, “What may be some barriers to clear communication in families that include a child with DD?”
Validate responses. (e.g., child’s communication level, child’s cognitive level, “taboo” issues like talking about DD, etc.)
Note that the child needs a lot of information. Ask group, “What kinds of information does the child need?”
Validate responses. (i.e., any and all info pertaining to his life that’s developmentally appropriate)
Note that its important to share any test results with the child.
Emphasize how important it is to be descriptive, open and honest with the child, the child’s family and the treatment team.
Bridge from discussion on communication in family systems to one of managing relationships in famiy systems.
Move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

15. Relationships to Manage
Introduce this activity by asking the group, “Do you agree that the relationship I have with you is different from the one you have with me?” Once there’s a consensus, illustrate the point on the pwrbd.
Using the highlighter, illustrate with arrows how each person in a couple has to manage 2 relationships, i.e., the relationship she has with him and one he has with her, and visa versa.
Let’s see what happens when we add 2 children to this couple’s family.
Move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

16. Relationships to Manage
Continue the illustration by adding the additional arrows to illustrate the 2-way relationship between each and every pair n the system.
2 arrows (i.e., relationships to be managed) from the previous illustration become 12 arrows with the addition of 2 people.
Move to next slide to illustrate how many relationships need managing in a family of 5 (i.e., 20 relationships).
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

17. Relationships to Manage
Ask the group, “How many here have more than 5 in their current household?”
Note the increase in relationship when one considers the therapist, birth family members, the teacher(s), etc.
Move to next slide of the community of services to drive the point home:
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

18. Department of Health Medical
Community of Services
Department of Health Medical
Therapeutic
Early Intervention
Early Childhood
Direction Centers
DSS/ACS
OPWDD
DDSO
DSO
SSI/SS
Medicaid
Education Department
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

19. Family System Characteristics
Homeostasis
Boundaries
Rules
Roles
Decision Making/Power Distribution
Communication
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Summarize discussion of the characteristics of family system.
Note that the family with a child with DD have a lot to manage, a lot of stress; approximately 70 % of families with a child with DD dissolve.
Move to next slide.

20. Grief Process Shock/Denial Disappointment (fears)
Anger (blaming others/self)
Depression (blaming others/self)
Acceptance/Understanding
Not only are these families dealing with stress related to what’s been discussed, these families are also dealing with issues related to grief.
Ask group, “What’s been lost for which these families grieve?” (i.e., the perfect child, a sense of normalcy, privacy, dreams, etc.)
Validate responses and move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

21. Handouts Developmental Disabilities and the Stages of Loss Pg. 1-2
Strategies for Dealing with Loss Pg. 3-4
Refer to handout material that covers issues related to grief and loss.
Bridge from this discussion of grief to a discussion of sibling relationships in families where a child has a DD.
Move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

22. Siblings Feelings
Brainstorm the feelings of those who are siblings to children with DD. Post responses on pwrbd.
Validate responses and move to next slide that indicates what the research says about these sibling relationships.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

23. Siblings Feelings Fearful Overprotective Embarrassed Confused
Shame Angry
Guilty Resentful
Overwhelmed Isolated
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Review the above.
Self-disclose an experience related to sibling issues in these famiies.
Ask group, “What do these siblings need?” Open pwrbd and note brainstorm.
Validate responses and bridge to next slide that reinforces the brain storm.

24. Siblings Need Information of child’s condition
Voice their surface and deep feelings and concerns
A place to ask questions
Get honest answers
Not to be judged
Be noticed, acknowledged, celebrated
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Review the above – what research in the field of DD tells us.
Move to next slide that also relates to what siblings need.
A chance to be children

25. To hear, ”You’re not responsible You’ll be ‘recruited’ to help
Siblings Need
To hear, ”You’re not responsible
for your sibling.
You’ll be ‘recruited’ to help
ONLY when necessary.”
Review the above.
Ask group, “ What positive effects might having a sibling with a DD present?” Open pwrbd and post responses.
Validate responses and move to next slide, outlining these positive effects.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

26. Positive Effects on Siblings
Practice “teaching”, empathy, caring, tolerance
Increased maturity
Practice conflict resolution
Increased interest in the helping professions
Review above.
Note that the sibling relationship is the most enduring family relationship and move to next slide that discusses this.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

27. Family Life Cycle - Siblings
Sibling relationship: longest, most enduring family relation
Cyclical relationship
Early childhood
School age
Adolescence
Adulthood
Old age
Review above.
Ask group, “ What can foster families do to ensure healthy sibling relationships within their household?”
Validate responses.
Bridge to handout material that summarizes content on sibling relationships and move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

28. Handouts
Common Concern of Children Who Have Siblings with Special Needs Pg. 6-7
Issues of Older Adolescents with Developmental Disabilities Pg. 8
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

29. Stress
OOOO
wxtxxx
Ask group, “How do you manage stress in your life?” List responses on pwrbd.
Validate responses.
Emphasize the need to take care of themselves and move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

30. Acknowledge/Accept Your Own Feelings
A. Anxious or Overwhelmed
B. Sad, Angry, Disappointed
C. Lonely & Isolated
D. Relieved
Note that these feelings, left unchecked over time, can take a heavy toll (e.g., over eating, drinking, smoking, self-medicating, missing work, etc.)
Brainstorm ways to relieve stress and meet needs in a healthy manner.
If not mentioned, note the importance of networking with others.
Refer to handout material and move to next slide.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

31. Handout
Parenting of Developmentally Disabled Children: Importance of NETWORKING Pg. 9
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS
Note the above.
Bridge to Guidelines for Parenting a Child with ADHD on next slide.

32. Guidelines for Parenting a Child with ADHD
Incentives before punishment
Immediate feedback
More frequent feedback
Immediate consequences
Bigger, more powerful consequences
Externalize time
Bridge time
Externalize important info
Externalize motivation
Make thinking/problem-solving more physical
Strive for consistency
Plan ahead for challenging situations
Keep a disability perspective
Don’t personalize issues
Practice forgiveness
Act, not yak!
Review above (and use separate handout material to expand on each)
Acknowledge that the above is adapted from Taking Charge of ADHD: the Complete Authoritative Guide for Parents by Russell A. Barkley, PhD
Summarize session – ask for key learning points.
Complete post test.
Adjourn.
Approved by the New York State Office of Children and Family Services 2005, through a training and administrative agreement with the Research Foundation for SUNY/BSC/CDHS

33. The End. Thank You!

34. Unregistered and want training credit?
Before class ends, enter the following into (private) text chat to Matthew Fildes (in his absence, to the instructor):
Full legal name
Male or female
Home address (no P.O. boxes)
Area code and phone number
address (2 on same computer must list 2 addresses)
Foster care agency address (e.g., Harlem Dowling, Westside Center, th Ave, NY, NY 10027)
Thank you.