Brenda’s Corner: OBIA Resources and Support for Pediatric Caregivers

Written by Brenda Agnew, Client Liaison

 

Caring for a loved one is both so rewarding, and yet so extremely challenging. When someone steps into a caregiver role, they can become very overwhelmed very quickly. 

Lack of support and funding, bouts of worry and uncertainty. Learning a job you didn’t apply for, navigating new systems and advocating for what your loved one needs. Often feeling alone, tired and fearful for the present and the future.

 

The realities of lifelong caregiving responsibilities.

As a caregiver to Maclain, I know firsthand all that comes with that role. It is so much more than just being his mom. Obviously being a parent means that you are a caregiver by default, but for me and for many others like me it involves being his everything. 

When my friends sigh relief once their kids are old enough to get themselves a snack, turn on the tv, get dressed, walk to school, meet up with friends, get a job and all of those amazingly independent things, I am envious that I can’t sigh that sigh. 

My son will always need someone to help him with all his daily living tasks, his schoolwork, his social life, and much more.  And even all these years later, I still struggle with being a caregiver in many ways, and so much can change as Maclain goes through different stages in his life. 

I have found myself sometimes feeling like I am back at the beginning of my caregiver journey when I hit a situation that we have not yet encountered. I find myself reaching out again to my fellow caregivers for their support as I approach burnout, their advice and ideas, strategies and sometimes shoulders so I can just cry it out when there isn’t another practical solution to fit my dilemma.

 

Support and resources can make all the difference in this journey. 

The Ontario  Brain Injury Association ( OBIA) recognized the need to do something to help people who are caring for children with a brain injury in a hands-on, practical way. Through the creation of a committee, comprised of parent caregivers, and in partnership with Holland Bloorview, a new workshop and accompanying materials have been developed to try and assist pediatric caregivers.  The pediatric caregiver workshop came out of the workshops that had been developed and offered for adult caregivers. Realizing that the needs and challenges in the pediatric world can be very different and involve many ages and stages throughout the life of the child with the brain injury.

I am very excited to be a part of this initiative and to be a contributor alongside some amazing fellow pediatric caregivers. We have spent many months creating the content and developing the format for the workshops. Trying to determine and prioritize what we think matters and what key aspects of the caregiver experience can be highlighted. Topics like family supports, coping strategies, advocacy, socialization, relationships and much more are covered during the workshop.

I am also grateful for the support of Gluckstein Lawyers in making these workshops a reality. We are always so focused on our clients and families and this is a perfect example of full-circle care. Finding ways to provide education and resources to caregivers whether they be new to the journey or have been in it for a while, but are feeling that they need more help and information to get through each day.

It is my hope that we fill those workshops and that every participant takes at least one thing home with them. That something resonates with them and they are impacted by an aspect of the discussion or activity and that they feel that they have a tool that they can pull out when they need it whether that be immediately or one day in the future.

Thank you for joining us for this edition of Brenda’s Corner. Please continue to follow her family journey for advice, insights and education related to parenting and empowering children of all abilities. Any questions? Contact Brenda directly at [email protected]

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