Growing Support for Children and Families Living with FASD
For eight years, the Lyle S. Hallman Foundation has allowed Lutherwood to launch and sustain programs that support families of children living with Fetal Alcohol Spectrum Disorder (FASD). As our FASD Coordinator, Karen Huber worked closely with many community partners to lead the development of local FASD programming and activities, deliver services, and create a wealth of information through the www.fasdwaterlooregion.ca website to help parents and caregivers better support their children.
While Lutherwood has championed the FASD cause, it is not a mental health disorder. It is a pre-natal brain injury and it better fits within the mandate of the Developmental Services Resource Centre (DSRC). As a result, DSRC is now leading this important work and after 21 years at Lutherwood, Huber is joining DSRC to follow her passion of working with children with FASD, continue growing the FASD program in Waterloo Region, and support similar efforts across Ontario.
“When I first started, very little was known about how to support people with FASD. Kids experiencing FASD symptoms struggle and their families can have difficulty coping,” Huber said. “These kids feel like they aren’t successful and adults may see them as badly behaved kids rather than kids with a brain injury. So a diagnosis is important.”
Yet getting an FASD diagnosis is a very expensive because you need a physician, pediatrician, speech and language pathologist, psychologist and occupational therapist involved to measure all the different areas of brain function. Traditionally, this process was not funded by the government.
“Our health care system is designed to support people in either a mental health or a developmental services stream,” Karen added. “Kids diagnosed with FASD live in the grey area between these two. My role has always been as a bridge between these two streams.”
At Lutherwood, Karen worked with other community agencies to pool resources and provide services in-kind to provide much needed assessments. Lutherwood covered Karen’s time as program manager, DSRC provided assessments, KidsAbility provided occupational therapy and the Waterloo Region District School Board provided psychology and speech language pathology.
“It's really a collaborative of agencies that have come together to help kids and families, and as a community, we can be really proud of this model,” added Karen.
Through this collaboration, Lutherwood hosted a group called Fast Friends that gave teens living with FASD an opportunity to learn about their disability. The team also hosted a social thinking group with children, as well as a series of summer camps. These initiatives allowed Huber to build research and explore practical ideas around what works and what doesn’t in terms of support and intervention. In her new role, she will be able to share her findings on a larger platform.
“I really appreciate the trust and freedom that Lutherwood gave me and the funds provided by donors to start the FASD program,” Huber concluded. “With the continuing collaboration and support of service providers and the added support of permanent funding from the government, I am really looking forward to building on the supports that will help families and caregivers of children living with FASD across Ontario.”
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"Change does not come easily or immediately for our youth. But there is nothing more gratifying than to see them months and years later and hear the positive impact we had on their lives."