The National Organization on Fetal Alcohol Syndrome Washington State FASD Family Summer Camp

1. The National Organization on Fetal Alcohol Syndrome Washington StateFASD Family Summer Camp Julie Gelo, Executive Director NOFAS Washington State

2. NOFAS Washington Mission Statement • The National Organization on Fetal Alcohol Syndrome Washington State, a nonprofit 501 (c) (3), is an alliance of families and professionals supporting individuals with Fetal Alcohol Spectrum Disorders, the families that care for them, and the systems that serve them by way of: • prevention • education • intervention • advocacy

3. Summer Camp Objectives • To increase individual protective factors for children with FASD by providing access to services and support systems focused on the prevention of the secondary disabilities of FASD. • To increase family protective factors by providing an opportunity for families of children with FASD to gather in a supportive environment to develop and enhance their network of supports. • To increase family protective factors by providing parents and caregivers with an opportunity for respite, education and networking. • To increase individual protective factors by providing opportunities for children with FASD to develop healthy peer relationships and to interact with other children in developmentally supportive and well supervised recreational and social activities. • To decrease the incidents of FASD through prevention and education.

4. Summer Camp Objectives • Opportunities for families of children with FASD to develop a network of family supports. • Respite, educational sessions, networking, and pampering for parents. • Opportunities for children and youth with FASD to interact with other children in supported and well-supervised recreational and social activities. • Opportunities for siblings to meet and interact with other siblings of affected individuals. • Social and recreational activities for adults and children to enjoy time together, e.g., walks, cooperative games, yoga, etc., as well as story time, crafts, music, and nature talks for the children.

5. Model • 5 day overnight camp • Wednesday through Sunday • Children in groups with volunteers and counselors in morning and afternoon • Meals eaten family style in the A-frame • Parents attended trainings during the day • Short respite opportunities for parents

6. Model • Family activities in the evening • Magician, Bubbleman, camp songs and skits led by counselors, Reptileman, informal activities • 18 to 24 families attended each camp • 125 to 150 participants including families, staff, and volunteers

7. Funding • First year-SAMHSA • Subsequent years-collaborative effort • SAMHSA, DASA, NOFAS, NOFAS Washington, Washington State DOH, donations from stores, donations from community providers, registrations from families

8. Facility • Camp Volasuca • Volunteers of America camp • Sultan, Washington (foothills of the Cascade Mountains) • Tent cabins for families • Cabins held between six to sixteen beds • Single parent families often shared a cabin • Electricity but no plumbing or heat • Allowed a few RVs

9. Facility • Male and female shower/bathroom building • Swimming pool/wading pool • A-frame building for meals and kitchen • Craft building • Ball field, basketball court, in-ground trampoline, swings, campfire area with stage • Community resource building-parent training • Miniature golf, volleyball, and ropes course

10. Participants • Identified clients • Birth families • Foster families • Adoptive families • Relative placements • Aunts and uncles, grandparents and great-grandparents raising grandchildren • Siblings • Respite providers/community providers

11. Counselors and Volunteers • Camp provided-5 to 8 counselors, kitchen staff/cook, lifeguard, maintenance man, craft leader, lead staff person • Volunteers-FASD diagnostic clinic staff, special education teachers, doctoral psychology students, social workers, special Olympics coaches, NOFAS Washington board members. • Ratio of 3 campers to 1 adult with 1:1 supervision provided if needed.

12. Families • Wide range of families • Single parents, same sex couples, birth mothers, two parent families, adoptive/foster/kinship families, different ethnic/cultural groups • Family size range-single parent and one child to families with eleven children • Families may include multiple generations • Some families came all six years

13. Identified Clients • Age range– 11 days old to 24 years old • First year • Documented alcohol exposure • FASD diagnosis with documented evidence of learning and behavioral differences • Age range 6 to 11 years old • Subsequent years • Documented alcohol exposure

14. Groups • Children assigned to groups based on age/development • Rabbits—0 to 3 year olds • Foxes—4 and 5 year olds • Bears—6 and 7 year olds • Wolves—8 and 9 year olds • Hawks—10 to 12 year olds • Deer—13 to 15 year olds • Eagles—16 and older (junior volunteers in training)

15. Agenda • 8am-- breakfast • 9am to noon– group activities for children and training for parents • Noon– lunch • 1pm to 4pm– group activities for children and training for parents • 4pm to 5:30pm—family activities (swimming, bubbles, nature walks, miniature golf) • 5:30pm—dinner • 6:30pm to 8pm—campfire/family activity • 8pm—bedtime snack • 8:30 to 9pm--bedtime

16. Training Opportunities • Sensory Processing Disorder • Positive Behavior Supports • Home and Classroom Modifications • Educational Advocacy • Psychopharmacology • Brain Function • Post Adoption Support • Social Skills Training • Nurtured Heart Approach

17. Agenda Special Activities • Fathers group • Mothers group/craft activity • Bubbleman, Reptileman, Magician, Native American storyteller, harmonica lessons • Carnival • Slumber party/movie night • Parents massages, foot/leg massages, dancing/music, snacks, networking

18. 2007 Washington State FASD Summer Camp: Evaluation Results

19. 4.7 4.6 5 4.5 4.5 4.4 4.4 4.5 4 3.5 3 2.5 2 1.5 1 Fun Family Time Emotional Physical Safety with Staff Figure 1 – Parent Feedback (n=28)Children's Needs Met? Average Rating Comfort Needs

20. Figure 2 – Parent Feedback (n=26)Satisfaction with amount of time spent in parent training.

21. Figure 3 – Parent Feedback (n=26)Satisfaction with amount of time spent with children’s activities.

22. Figure 4 – Parent Feedback (n=26)Satisfaction with amount of time spent in family activities.

23. Figure 5 – Parent Feedback (n=26)Satisfaction with amount of parental respite and pampering.

24. Figure 6 – Parent Feedback (n=26)Willing to attend a similar camp in the future?

25. Figure 7 – Parent Feedback (n=26)Willing to attend a weekend camp during the school year?

26. Figure 8 – Parent Feedback (n=26)Willing to pay for the camp?

27. Figure 9 – Parent Feedback (n=17)Amount willing to pay?

28. Figure 10 – Parent Feedback (n=26)Satisfaction with camp length.

29. Figure 11 – Counselor Feedback (n=10)Satisfaction with camp length.

30. 77% 80% 70% 60% 50% Percentage 40% 23% 30% 20% 10% 0% Good Needed Improvement Figure 12 – Parent Feedback (n=26)Organization, supervision and facility.

31. Figure 13 – Counselor Feedback (n=8)Organization, supervision and facility.

32. Figure 14 – Parent Feedback (n=27)Most valuable part of the camp?

33. Figure 15 – Parent Feedback (n=28)Importance of parent networking, respite, and pampering?

34. Figure 16 – Parent Feedback (n=28)Met new families to maintain contact?

35. Figure 17 – Parent Feedback (n=28)Would you recommend this camp to other parents?

36. Figure 18 – Counselor Feedback (n=10)Would you recommend this camp to other parents?

37. 54% 60% 50% 40% 25% Percentage 30% 13% 20% 8% 10% 0% Scheduling Changes Topics Sessions Activities or Resources *Percentages are calculated against the total number of suggestions. Figure 19 – Parent Feedback (n=19)Suggestions for future summer camps (n=24*).

38. Figure 20 – Parent Follow-up to the 2006 Camp (n=18)Maintained contact with families they met last year?

39. Figure 21 – Parent Follow-up to the 2006 Camp (n=18)Recommended the Family Summer Camps to other parents?

40. Figure 22 – Parent Follow-up to the 2006 Camp (n=18)Comparison of 2007 camp with the 2006 camp.

41. Figure 23 – Parent Follow-up to the 2006 Camp (n=18)Improved knowledge/access to different services?

42. Figure 24 – Parent Follow-up to the 2006 Camp (n=18)Better knowledge/access to parent/community supports and networking?

43. Figure 25 – Parent Follow-up to the 2006 Camp (n=18)Feel less stress and more competent, resilient, and hopeful?

44. Figure 26 – Parent Follow-up to the 2006 Camp (n=18)Positive changes due to 2006 camp experience?

45. Figure 27 – Parent Follow-up to the 2006 Camp (n=18)Maintained contact with families they met at the camp?

46. Figure 28 – Parent Follow-up to the 2007 Camp (n=23)Would recommend the Family Summer Camp to other parents?

47. Figure 29 – Parent Follow-up to the 2007 Camp (n=23)Interested in attending similar summer camp in 2008?

48. Washington StateFASD Family Summer Camp Parent Narrative Results

49. Decreased stress/increased competence, resiliency, hope & healing • …made me realize I am not alone in the struggle… • …we have been heard and seen, and therefore feel validated and less desperate… • …easier to persevere…if others are giving you encouragement… • …our child is not only healthier but doing better in school….I don’t feel as hopeless…

50. Better Parenting: Attitudes and Techniques • …see my daughter in a different light, accept her the way she is… • …more compassion for our son and patience with ourselves… • …much less fear of the unknown and the future…. • …learned different ways of coping….