Guest Blog: What to Do when you are at the end of your rope, but there is no rope left to tie a knot and hang on longer?

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Elaine Bolt lives in Calgary and is the mother of her 27-year old son, diagnosed with FASD. Elaine also worked for 37 years for the Calgary Board of Education, the last 10 years as a strategist working with schools and teachers to assist students with special needs have an increased opportunity for success in the classroom. Elaine is also an active member with the Calgary Fetal Alcohol Network and she serves on the board of Inclusion Calgary. Currently, Elaine serves as co-chair of the Alberta FASD Family Advisory Council. Elaine gets great joy when she is able to help individuals and families move along their journey of reaching their goals and dreams. Allyson Dann is the Network Engagement Facilitator with the Calgary Fetal Alcohol Network, and  facilitator of the Collaborative Solutions table, part of the Calgary FASD Collective. Allyson is also the parent to an 18-year old son who is impacted by FASD.

Recently, I was invited to attend the monthly meeting of the Collaborative Solutions Action Group, part of the FASD Collective in Calgary. The topic of discussion this day was the experiences of some families in their efforts to find appropriate services for their loved ones affected by FASD.

Most of the experiences shared revolved around youth aged 14 – 20; the intersection of FASD and adolescence at full speed.  Many are finding that when these youth begin to experience clashes between more authority, safety, or independence within the family, there is often increased conflict, not just with parents / caregivers, but with other family members.  It can escalate to the point where safety of one or more members is at risk.

Families seem to be offered one of three strategies in this situation:

  1. First, families are expected to develop / arrange their own respite resources, but this is increasingly difficult especially in rural or remote areas, and it is becoming more difficult to find respite homes where the expectations / rules are similar to the original home. At this age, a temporary child welfare group home placement may be offered, but these group homes are not set up to address the vulnerability of those diagnosed with FASD.  Would any youth agree to daily care support at this age?  There is great complexity in the needs of the youth and family.  Most often respite is not an option.
  2. Second, as there is a lack of support and understanding of FASD within a community (school, mental health, disability services, health, etc.), families are advised to take the youth to the hospital, or to contact police based upon safety of either themselves or other members of the family. If, If, the family is able to gain a hospital admission,  initially things seem to calm, but the moment the youth returns home to the family situation AND the other triggers of the family, the risk / violence can escalate very quickly.  Some agencies report that individuals / families have had the revolving door of service from home to the hospital, going on two years with little or no change to outcomes within the home.
  3. Finally, most recently, some families have been advised to surrender their youth to the government (either temporarily or permanently), in order to access some level of service. Many parents cannot fathom the thought of removing the youth from their hearts or homes.  Difficult decisions such as this can leave the families traumatized.

The participants of the meeting acknowledge that currently most networks have supports for the parents / caregivers, but the support for the youth and other family members are sorely lacking.  The group also acknowledge that we need to find multi-disciplinary collaborative community strategies.

A number of questions and concerns remain based on the challenges addressed by families:

  • How can we renew hope for these individuals and families to combat the reoccurring trauma and promote the message that things can be different?
  • How can we positively respond when the adolescent becomes physical?
  • How can we work together (including governments, community agencies, and natural supports) to support the individuals and families to achieve their goals and dreams of living a fulfilled life and be a contributing member to society? The social and economic benefit of ensuring the right kind of supports is immeasurable.
  • When we are told they don’t have a placement – only a spot on a waitlist – parents are often forced to do things that are not helpful / beneficial, such as quitting their job to supervise their youth, creating new challenges, such as economic restraints.

Please share your thoughts and experiences with us regarding supporting individuals with FASD and their families in your region! Elaine and Allyson are both very interested to follow this post and to hear how others handle, cope, and strategize around this huge challenge.

3 Responses

  1. I am encouraged that this conversation is happening and urgently hope that strategies are developed to help families and individuals facing these very difficult and emotionally devastating situations. My son is now 25 and over the past 10 plus years has been angry, violent, paranoid, delusional, threatened to kill people, and carried weapons. At 20, he was committed for inpatient psychiatric care and was discharged to our care with no support whatsoever provided or available to our family. We are thankful that things are now reasonably stable but feel that the situation is tenuous. We were able to get PDD approval for Family Managed Services and he now has an excellent support worker. My son is mentally unstable. Fortunately we have a good relationship with him and I, his mother, am his main counselor. As I am at retirement age, I worry about what will happen to him when I am either gone or not able to manage his FMS and not available to talk him through his issues. Services available for people with FASD and mental illness are essentially non-existent. If ongoing stable support is not available for my son when I am not here, I fear for his well being and for the safety of both himself and others.

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