What We Need
A recent conference here in Toronto featured the outstanding FASD communicator, Teresa Kellerman of Tucson, AZ with her innovative workshop, Magical Mystery Tour of FASD. The overflow attendees brought many of their own insights to this event and we decided to follow-up with them so they could put their concerns out for all of us.
Contents
Executive Summary
The feedback we received in the post-event survey, which had an unusually high sixty-two percent response rate, gave us invaluable insight into the needs and concerns of parents and caregivers dealing with FASD, either suspected or diagnosed.
The objective of the workshop was to target caregivers and almost eighty-six percent (85.8%) identified themselves as either a parent/caregiver or family member with the remaining being professionals. We were delighted that eighty-eight percent (88%) of respondents felt that the workshop content met or exceeded their expectations and forty-six percent (46%) felt that the presentation content was good to excellent with the majority of those stating that the presentation was excellent.
The survey indicated that the workshop was a resounding success with extremely positive comments and feedback. Comments included:
“Grateful to have had the opportunity to come! And nice to see that the cost was not a prohibitive factor for whomever wanted to attend...”
“Thank you so much for organizing this. We need to have more professionals hear this, too…”
“… I loved that the day had a heart, a soul. I felt like I had found my home - where all the pieces came together and fit…. Home at last.”
“…still informative for those of us already in the know.”
“… very informative and inspiring to hear her story and see how much she has put into developing strategies that others can use as well.”
“Teresa Kellerman is an excellent speaker and advocate for FAS. She really understands the challenges that parents face on a daily basis.”
“… As parents, we need more of the positive but realistic style of presentation. Just like this was. Thank you for an amazing day, that did not see me yawn even once. It was full and fun, informative and very real.”
“The day was fabulous. Teresa knows how to give the facts of FASD and have an audience leave and be happy...”
Clearly there is a need for this kind of workshop as the large space was filled to capacity. Offering the event at no cost to families made the day affordable for everyone. Although many families had seemingly high incomes, the costs of raising a child with FASD can be prohibitive. The financial support of sponsors is critical and very much appreciated.
We were extremely grateful to have had the spacious Paul Marshall lecture theatre in St. Michael's Hospital at no charge; to have had coffee, juice and snacks provided; and to have been able to offer reduced prices from Second Cup for lunch.
Evaluation Results
Workshop Content
A resounding eighty-eight percent (88%) of respondents felt that the workshop content met their expectations. Ten percent (10%) disagreed and two percent were unsure.
In addition, participants were asked if they would recommend the workshop and/or speaker to friends, family or colleagues and ninety-six percent (96%) stated yes. The remainder said they would consider it.
Connection to FASD
The objective of the workshop was to target caregivers and almost eighty-six percent (85.8%) identified themselves as either a parent/caregiver or family member. The remainder were professionals.
Of those who identified as parents and caregivers we were able to ascertain their relationship to the children in their care who are diagnosed with a fetal alcohol disorder or suspected of having FAS or ARND.
Just over six percent (6.1%) identified themselves as the biological parent or a foster parent while almost eighty-eight percent (87.9%) were adoptive parents.
Of those who identified themselves as adoptive parents, seventy-one percent (71%) had one child, almost twenty-six percent (25.8%) had two children and just over three percent (3.2%)had five or more children in their care diagnosed with a fetal alcohol disorder, or having symptoms of FASD. Ages ranged from three years of age to eighteen, but the majority were between four to seven year of age, or twelve to fifteen.
Over seventy-two percent (72.4%) were not the sole caregivers. Almost twenty-eight percent (27.6%) were caring for their children (adoptive, biological or foster) on their own.
We also asked caregivers to rate their network of support in caring for their children with diagnosed or suspected diagnosis of a fetal alcohol disorder.
Almost thirty-five percent (34.5%) felt that their support network was non-existent. Twenty-seven percent (27.6%) felt that their network was OK and thirty-one percent felt it was good. Nearly seven percent (7%) felt their network was excellent.
Seventy percent of the caregivers (adoptive, biological or foster) currently access the services of a support group for information or guidance. Almost forty-three percent (42.9%) accessed their support group on a monthly basis and over twenty-eight percent (28.6%). A small percentage (4.8%) accessed their support group daily and fourteen percent (14.3%) accessed weekly. Less than ten percent (9.5%) sought advice or support on an annual basis.
Almost eight-seven percent (86.7%) expressed interest in being part of a provincial family support network, similar to those in Saskatchewan and Manitoba, and almost eighty-nine percent (88.5%) were willing to pay a nominal membership fee.
In addition, all respondents (including professionals) were interested in participating in some form of online communication with other families in Ontario. Specifically:
•65.6% expressed interest in an online discussion group;
•46.9% were interested in an online listserv; and
•40.6% expressed interest in scheduled online audio conferences.
Professional Attendees
Over fourteen percent (14.4%) of the attendees who responded to our survey were professionals. A small number of attendees were both professionals and caregivers, but for the purpose of our survey, they were included in the caregiver statistics. Professionals worked in the following categories:
•Social Work - 57.2%
•Disabilities - 28.6%
•Counseling - 14.3%
•Addictions - 14.3%
Almost forty-three percent (42.9%) reported they come into contact with one to twenty-four families each year were dealing with FASD or ARND on an annual basis. Over twenty-eight percent (28.6%) reported they come into contact with less than fifty families per year and the same percentage reported fifty or more families.
Demographics
The attendees were predominantly Caucasian (92.1%) female (78%) between the ages of 45 to 54 (44.7%). Almost eighty percent were educated beyond a high school diploma with over seventy percent (76.3%) holding a degree. Almost half were employed full time and over thirty percent employed part time. Almost eight percent were retired. Gross family incomes exceeded one hundred thousand dollars per year (26.3%).
A detailed breakdown is as follows:
Age:
•19 to 25 - 2.6%
•25 to 34 - 13.2%
•35 to 44 - 10.5%
•45 to 54 - 44.7%
•55 to 64 - 23.7%
•65 to 74 - 5.3%
Ethnicity:
•Caucasian / White - 92.1%
•Aboriginal - 5.3%
•Asian - 2.6%
Education:
•Some High School - 2.6%
•High School - 13.2%
•Technical School - 5.3%
•Graduate Student - 2.6%
•Associate Degree - 2.6%
•Professional Degree - 21.1%
•Bachelor Degree - 26.3%
•Masters Degree - 18.4%
•Ph.D. or other doctorate - 2.6%
Employment:
•Employed full-time - 47.4%
•Employed part-time - 31.6%
•Student - 2.6%
•Unemployed - 10.5%
•Retired - 7.9%
Gross Family Income:
•Less than $25,0005.3%
•$25,000-$44,99913.2%
•$45,000-$64,99910.5%
•$65,000-$84,99913.2%
•$85,000-$99,9995.3%
Conclusion and Next Steps
There was a feeling of excitement and energy in the lecture theatre throughout the day, promoted by Teresa’s fast-paced, jam-packed presentation, its solid information lightened by graphics, videos, and occasional sing-alongs of Beatles songs with lyrics "slightly" rewritten to reflect the lives of parents with FASD. The palpable energy was also the result of being in a room with more than a hundred people who shared similar dreams and disappointments, fears and hopes for our alcohol-affected children. In some respects, it was like a giant sixties’ love-in!
Key Outcome: Participants asked for and we created an Ontario Listserv for parents, caregivers and concerned professionals: FASDO. Click here to join FASDO
Topics attendees were interested in learning more about
1.I … expected more from the topics on the registration sheet like how to take care of the caretaker or nutritional recommendations.
2.Canadian experience - re post secondary education as well as employment opportunities - how best to handle in regards to parental involvement - legalities re $, power of attorney etc
3. I would love a seminar specifically on dealing with the Ontario education system and IEP's in regards to our kids. It would also be very helpful to have information on what services are available in our province.
4.I would like to learn how to deal with my son better. I understand that he cannot always control the things he does and he doesn't understand consequences. But I don't think keeping him away from life like Teresa does is the answer either. Teresa seemed to keep her son in a total safety net but then he misses out on life’s adventures. I know that they can get in trouble as my son does but there must be a better way.
5.I would like to see a full day seminar about FASD adults.
6.Areas of the brain etc. affected by the alcohol, symptoms, and how to manage subsequent challenges in behavior, thought processes, learning styles.
7.Grief work for FASD caregivers strategies for FASD adults & adolescents Difference between the variations / degrees of the disorder.
8.Sexuality seminar.
9.Divide the sessions by age group: school age, teens, adults: strategies and resources.
10.How to build support for adult ARND children who have left home and are resisting our help in their lives, but who clearly need it. How to do that in smaller communities where the resources are not the same as in larger cities. Moving to another community is not an option for many of them as they are not use to the stimulation and busyness in the city. Our 19 year old is exhausted after a day in the city for doctor visits and needs a least a day to recover.
11.How do parents provide 24/7 supervision? Especially those who have to work.
12.How to get all of the systems (legal/school/shelters, etc) on board collectively with this information: i.e. information sharing/advocacy/changing how we provide services.
13.How do we, as a large group, i.e. provincial, municipal, parent support group start to lobby for change in education, recognition, supports and diagnostic centres for this (wow, that would be very interesting!!!!)
14.When Teresa turned to the audience at the end and pointed out their responsibility, I realized I do not know how to get society involved. I would love to attend a full day workshop which would help me involve more people. (Please take into consideration that not all of us are out-going and not born leaders. How can ordinary people, (or even introverts) lead others?)
Sponsors
Signage at the event clearly identified the Ministry of Children and Youth as a sponsor. Also, a key partner in this event was the Children's Aid Society of Toronto.
Where Do We Go From Here?
Many of the attendees expressed the desire to carry the connection forward. People made new friends during lunch and breaks. With Teresa’s assistance we have set up a new e-group for Ontario families dealing with children with FASD. Our original intent had been to limit the group to the Toronto area, but there is much expertise across the province and we all have much to share. The e-group is named “FASDO” and we will shortly be inviting all participants to join it, so we can continue to share ideas. We will also be inviting other Ontario parents who were unable to attend. Our goal is that eventually a provincial network of FASD family support groups will emerge, as we identified several potential leaders among the participants.
How Can We Keep FASD Families Intact?
•The Ministry could fund one day of respite per month for all adoptive, foster, and kinship families (including step-parents) of children with FASD, thus avoiding home breakdown.
•The Ministry could assist FASworld Toronto in organizing further family-oriented workshops as identified in workshop survey.
•The Ministry could assist FASworld Toronto in better accessing new online technology, to develop a regular e-newsletter for families and other interested parties.
•The Ministry could assist FASworld Toronto and other support groups, in building a provincial FASD family support network similar to those in Saskatchewan and Manitoba.
•The Ministry could assist us in accessing skills of professionals to sustain FASworld Toronto.
Contact us: Let us know your thoughts & suggestions on this issue.
