Jake's story: Navigating the Educational System

As mentioned before, I am the father of three amazing children living with FASD. Back in 2019, CBC introduced Skylar and Cassie https://www.cbc.ca/news/canada/ottawa/sisters-living-with-fasd-point-of-view-1.4970670 to the world but not Jake. At that time, Jake was still learning how to navigate life. Today, he represents a growing population of people living with FASD being accommodated in our educational system and finding success now. His story begins at age three when he first received language training. After two years of training, Language Express told us he was the first child they had ever had who did not progress at all. They raised questions if he would ever be able to read at that time. He went to kindergarten and primary school where he continued to make no gains in reading. However, he did learn work ethic and never giving up. In grade four, frustration reached a tipping point and he became violent. Eventually, it was discovered that the classroom environment was too noisy and stimulating for him. Accommodations were made by St. Francis School in Smiths Falls and he was able to cope throughout his day. At home, he discovered he understood ATV's and how they work and started teaching himself how to repair them at age 10. Grades 5-8 were spent in the learning commons, quiet corners and wearing headphones and hoodies to just manage the noise and stimulation. In Grade 9, things changed. CDSBEO decided to retest his langauge development and we did a private psy-ed. It was discovered even though he was still reading at a kindergarten level, he had a path on how he could learn how to read. While it is really unique, his SLP made foundational gains and got him to a grade 3 reading level. This uniqueness was seen in his driving test. He failed the driver's test seven times before they agreed to read the questions to him after which he got 100%. At the same time, he started seeing success in school through the support of his former elementary principal who serves as his personal tutor now and his FASD System Navigator from MCCSS and got all eight credits pushing through all the environmental challenges. He then got into OYAP in grade 10 as a truck and coach technician and is now flourishing. His placement boss put in all the accommodations he requires, he graduated from high school last year receiving four awards in leadership, mentoring, character and volunteering, got accepted into the apprenticeship program and is now preparing for his Red Seal Level 1 exam as a truck and coach technician at the age of 18. His boss recently shared his evaluation with us stated here: Have I ever told you what a remarkable young man your son is becoming…. He’s a treasure to carry on with. Thank you for all you and Shelley have done for him, and for society as well. He’s going to serve his maker well! All love Mike However, Jake's story is not unique in that when students are asked to do things they can't do, they fail and when asked to do things they can do, they succeed. While Jake's strengths do not include public speaking, Shannon Butt's strengths do. On Oct 21 at 3:15pm, Shannon will be sharing at the Canadian International FASD Conference at the Downtown Hilton Toronto her story of how she experienced life success once she was able to navigate our educational system and again Oct 23 at 12:15pm at Queen's Park. It is also why 870 students from both school boards in MPP Jordan's riding came together on June 2 to bring awareness to the type of successes children living with FASD can succeed when provided with the necessary but unique accommodations they require to succeed. In this final blog before Rural FASD's presentation at Queen's Park on Oct 23, we thank MPP Jordan of the PC Party, MPP Clancy of the Green Party and MPP Fairclough of the Liberal Party for coming as well and addressing our delegation. We look forward to seeing all of you through the day.

FASD Prevention and Support - CAHS Summary Report

Two years ago, the Canadian Academy on Health Sciences was commissioned by the Public Health Agency of Canada to determine the current status of FASD in Canada. This past June, CAHS released the final report after multiple consultation with all Canadian stakeholders with 28 recommendations. Two of those key findings as stated in both their main and summary report focused on FASD prevention through our educational system and supporting those in the child welfare system. While the report does find the general public awareness of FASD has greatly increased recently, there is still very little understanding of the risks of FASD. From an universal and broad-scale prevention strategy, they state: "School-based programs show promise in influencing alcohol consumption. Certain approaches such as programs that are interactive and focus on developing social resistance skills or targeted cognitive behavioural skills are associated with greater impact. For programs that try to raise awareness about FASD specifically, consideration of inclusiveness and respect, and the potential impacts on persons with FASD in the school population are important for any schoolbased programs seeking to raise awareness of FASD." This information comes from provinces that require health curriculum to include awareness on FASD unlike Ontario. In the fourth section of the summary report which looked at what tools, resources and supports are needed to improve outcomes for those with FASD across the life course, they also focused on individuals who grow up in the child welfare system. In 2013, meta-analysis research was done by Dr. Lange et al to determine the prevalence of FASD among children in the child welfare system and it was found to be 18% versus the general population of 4%. These individuals are also required to be discharged by MCCSS FASD System Navigators once they graduate from high school with no corresponding agency to transfer due to disability support ineligibility. These facts are part of the reason the Adoption Council of Ontario is bring a full delegation to FASD Awareness Day on Oct 23 as well. CAHS summary report captures all of these facts as follows: Access to timely and suitable interventions and supports can improve outcomes in relation to health and well-being, quality of life, education, employment, social relationships, and avoidance of problems with the justice system. A formal diagnosis is often not possible due to unconfirmed PAE or lack of diagnostic capacity, yet it is required for accessing many interventions and supports for people with FASD. Furthermore, people with FASD may be unable to access disability supports where they have an IQ above the cut-off point for eligibility despite experiencing significant challenges with adaptive functioning due to the symptoms of FASD. Across Canada, the siloed operation of social services and systems increases complexity for people with FASD and their families and makes the delivery of supports less efficient and effective. Mechanisms to address system fragmentation and complexity include efforts to integrate service provision and the use of system navigators or key workers. Stability and consistency of community supports can be enhanced by moving to a system of longer-term and sustainable funding for models that have demonstrated success, rather than relying on time-limited project-based funding. People with FASD are over-represented in the child welfare system, and involvement in the system is an additional risk factor affecting long-term outcomes. Supportive wraparound structures that aim to help and to preserve families are important. Other key elements to addressing this over-representation include ensuring that children and adolescents in the child welfare system are able to access diagnosis and supportive interventions as early as possible, and providing supports and training for kinship and foster care placements to enable continuity, stability and well-being. Youth with FASD transitioning out of the child welfare system benefit from stable supportive relationships and often need longer term, targeted supports that recognizes the slower pace with which the transition to adulthood occurs. We are pleased to be joined on Oct 23 by one of the 14 panel members for this report, Shannon Butt, who will be addressing attendees following MPP Jordan, MPP Clancy and MPP Fairclough at noon. This report clearly states while great gains have been made across Canada and Ontario in FASD prevention and support, there are still multiple areas of improvement. It should be noted all of the recommendation stated here do not require additional funding but rather shifting focus within our current systems to create a greater amount of positive outcomes for people living with FASD.