I recently finished participation in a six-month support and education group for “older” parents and caregivers of adults with FASD called the Ontario Senior Caregiver Action Network for FASD (OSCAN). It was an idea born from meetings between advocates Nancy Lockwood, Elspeth Ross and Barbara Sabourin. I was excited to be part because it focused not only on supporting adults but the specific needs of older (50+) caregivers – a unique demographic that I at least had not seen addressed.
We have a provincial FASD support worker program, but that ends as soon as a child turns 18. Both the maiden and I had support in several areas until she turned 18 then everything stopped. In fact, in the OSCAN group over half reported that they had no family, friends or front-line workers to provide support to themselves or their adults. A further 23% had only 1-2 people they could rely on. These stats do not surprise me, but they are alarming nonetheless.
We ranged in age from 55 – 85 and were supporting adults ranging in age from 18 – 48. We have a provincial organization that provides support to adults with disabilities, yet 70% of our small group said their adult was NOT receiving any support through that program.
Each of the monthly meetings focused on a broad area, including:
- The physical and mental health of both adults with FASD and ourselves as senior caregivers
- Grief for both adults with FASD and ourselves
- Relationships and Sexuality for our adults
- Filling their days
- Financial and Lifetime Planning, including building circles of support
I do belong to different support groups (prior to COVID a combination of in-person and online – now all online). There are people with older teens and young adults in these groups, and there are discussions specific to our unique challenges, but the majority of the discussions are geared toward children. I enjoy providing support to the ones coming up behind us … because I’m grateful for people that came before me and shared as I was raising the maiden – but to have a small dedicated group that was unique to not only my age group and situation but also to our Province was an amazing opportunity.
I often tell people, I am only the expert on our situation. With this group, I was going to have access to professionals who work with larger numbers of adults and can provide perspectives I have not considered, or offer resources I did not know existed. I was most looking forward to just hanging with people in a similar stage as myself.
While most of the information that is out there is not specific to FASD, there are services and supports that can be accessed. I wanted to share this information because the organizers of the group have provided a Resource Guide created from our group sessions. While some of it may not be applicable to your area, there are parts you can take to help create your own plans. Please keep in mind this Guide is the intellectual property of OSCAN-FASD. You can access the Guide below:
And if you are in Ontario (Canada), are over 50 years of age and are a parent/caregiver, kin or customary caregiver to an adult (18+) who has or may have FASD, the Ontario Adopt 4 Life Program has recruited Nancy Lockwood to run the group through their umbrella. It will take place monthly from May 2022 to March 2023. You can register here: Support and Education Group for Older Parents and Caregivers of Adults with FASD.
If you are simply curious and want to know more, Nancy did appear on an Adopt4Life Facebook Live Session: Snack ‘n’ Chat.
I would like to thank Nancy, Elspeth and Barbara for creating and offering the OSCAN project, Angela Geddes, a registered Social Worker (and author of A Complicated and Beautiful Brain), who helped facilitate the sessions and all the presenters and special guests. I would also like to thank Health Nexus who funded the program through our provincial FASD Family / Caregiver Support Group Project.
It seems up to now, adults with FASD and their caregivers are often forgotten about, are an afterthought or given minimal consideration when planning for service and support.
In fact, it was one of my 12 Wishes for My Daughter and FASD: FASD Wish #6: Timely Access to Adult Services. I also spoke of the need for adult services (as did an adult with FASD) when our former advocacy group met with our Provincial Minister responsible for Community Services: A Letter For Our Provincial Ministers.
Hopefully, the tide is turning. It’s a slow turn, but there is movement. Interestingly this morning in one of the online groups I’m in, there was a discussion about supporting an adult. If you are a “senior” who feels isolated, check out the resource for ideas, if in Ontario, join the new group, and if not local, seek out online support to find like-minded individuals, read about and talk with / listen to your adult and other adults with FASD for clues on how best to support them. And share information when you come across it to help others. Together we are stronger.
For some more information on supporting adults with FASD, check out: Day 67-73 of 99 Days to FASDay: 9 Lessons Learned Supporting Adults with FASD and FASD: Nothing About Us Without Us.