Caregivers
Caregivers
Caring for People With FASD
As a caregiver, you play a vital part in supporting your loved one—by learning about mental health services, connecting with providers, and helping them get the care they need. Working with others can be easier when we have some tools. Just as a hammer is important to getting a nail secured in a board, and a map can help you find a destination, these tools were created to help you navigate the mental health system with your loved one.
We invite you to use these tools in whatever way works best for you and the person you care for. You know their needs—and your own—better than anyone. Our goal is to offer helpful options as you support them and navigate the mental health system together.
Learning From Caregivers
This video is currently under development! Please check back soon.
Using the Tools
The majority of the IMPACT tools are designed to support service providers to confidently and effectively offer FASD-informed mental health care to your loved one(s). You know their needs, and your own, better than anyone. As such, our goal is to offer helpful options that allow you to navigate the mental health system together and collaborate with service providers. You may wish to share this website with service providers so they can explore the service providers tools and resources. Other tools may be used together with the person in your care.
Some of the tools below have a User Guide document, which provides further background information in addition to the Tool version. The User Guides are intended to facilitate the use of the Tools. If a Tool includes both a User Guide and Tool version, we recommend looking at both to ensure you review all the relevant information to see how each Tool may be useful to you
Collaborative Tools:
Person With FASD
These tools can be used in collaboration with the person in your care.
PREPARING FOR THERAPY
Makes common therapy processes and practices easier to understand. It helps outline common experiences and questions throughout the therapeutic process. You can review it together with the person in your care and help them fill it out or discuss the questions within it.
Collaborative Tools:
Service Providers
These tools can be used in collaboration with service providers to assist the person in your care.
RELATIONAL CLARITY AGREEMENT
Shows the roles and responsibilities of everyone in therapy, like the person with FASD, caregivers, and providers. It can be used as a fillable agreement to have clear conversations about everyone's roles and responsibilities throughout the therapeutic process.
UNDERSTANDING AND SUPPORTING BRAIN-BASED DIFFERENCES
Explains behaviours by linking them to underlying neurodevelopmental differences. It can be shared with service providers to increase understanding of FASD and guide FASD-informed support and adaptations to care.
THERAPEUTIC GOAL PLANNING AND OUTCOME MONITORING
Helps service providers engage in collaborative goal setting with people with FASD and their support people. These tools can be shared with service providers to encourage open conversations, help track progress, and strengthen the partnership between everyone involved in the therapeutic process.
Invisible Mental Load & Cognitive/Emotional Labour
Caring for someone with FASD can be rewarding and meaningful, but it can also be challenging. Many caregivers take on a lot of mental and emotional work that others may not see or fully understand.
Caregivers often spend a lot of time helping the person they support and managing different systems, such as healthcare, school, and community services. They may also need to plan ahead for challenges and help prevent crises. Over time, this can lead to stress, worry, and emotional exhaustion.
Caregivers of people with FASD often put a lot of time, energy, and care into supporting their loved ones. They may worry about their loved one’s future and feel a strong responsibility to meet their daily and long-term needs.
Some caregivers may also experience feelings of guilt, judgment from others, or loneliness. These challenges can be even greater for biological and Indigenous caregivers, who may face additional barriers and discrimination.
Many caregivers told us that finding mental health support for a loved one with FASD can be difficult. They often need to search for the right services, help manage appointments and treatment, and explain FASD to service providers. At the same time, they continue to support their loved one’s mental health at home. Over time, this level of support and advocacy can lead to stress, exhaustion, and caregiver burnout.
Caregivers as Persistent Advocates
"It's watching those caregivers and those parents, it's just how much [they] have to fight and that no one else is doing it for them."
-Service Provider
Because many professionals do not fully understand FASD, caregivers often need to speak up and advocate for their loved ones. They may spend time teaching teachers, healthcare providers, and other service providers about FASD. They also work to get the services, supports, and accommodations their loved one needs.
This advocacy can take a lot of time and energy. It can be stressful and emotionally challenging, but the effort caregivers put in is not always recognized by the systems they work with.
Systemic Barriers & Financial Strain
Many caregivers face financial challenges when trying to find and access mental health supports for the person they care for. They may have extra expenses related to caregiving, need to reduce their work hours, or lose income while supporting their loved one.
Mental health services can be expensive, and many families do not receive enough financial support. This can make it harder to access the services and supports they need.
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The stress of caregiving, combined with a lack of support from systems and services, can also affect caregivers’ mental and physical health.
Need for Recognition and Support
Even with the challenges of caregiving, many caregivers describe feeling deep love, pride, and joy in supporting their loved one with FASD. Research shows that caregiver well-being plays an important role in the health and success of people with FASD.
Taking care of yourself is an important part of staying healthy and managing stress. Caregivers who make time for self-care often report lower stress, greater confidence, and better overall family well-being.
However, many caregivers find self-care difficult because of limited time, financial pressures, and the ongoing need to advocate for their loved one.
Caregiving is an important role that requires a great deal of time, energy, and emotional support. Caregivers need access to services and supports that understand trauma and FASD. These supports are important not only for people with FASD, but also for the mental health and well-being of caregivers.
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Think about the safety instructions on an airplane: you are told to put on your own oxygen mask before helping someone else. Caregivers also need support and time to care for themselves.
When caregivers take care of their own well-being, they are better able to support and advocate for the person with FASD in their care. Self-care is not selfish - it is necessary.