One thing that keeps me up as a special needs parent is thinking about our child's future.
My workplace is developing its next multi-year strategic plan. Participating in the process made me think about T's next few years.
Any special needs parent will tell you we just want to make it to the end of the week, so where do we find time to think years into the future.
Organizations that invest the time to executive effective strategic plans thrive and withstand whatever lies ahead.
I believe that special needs families can thrive and weather storms with advanced planning, as exhausting as it seems.
I'm not an expert in strategic planning, but there are common steps that include research, SWOT analysis and scenario planning.
The hubby and I are honest about the strengths, weaknesses, opportunities and threats (SWOT) within T and surrounding him.
We find ways to stay informed about FASD and connected with communities of caregivers, experts and service providers.
Our pragmatic nature guide us to hope for the best and to plan for worst case scenarios.
I've been thinking about the priorities in a strategic plan for our family in the next five years.
T will enter his teen years during this period and I am nervous of these years from the experiences I've read from other FASD caregivers.
Instead of letting myself be paralyzed with worry, I try to channel it into something productive.
These are what I consider our family's five priorities for the next few years, along with expected actions to bring this plan to life.
Build Skills, Connections and Wellbeing
- Advocate and identify school supports to maximize T's academic outcomes.
- Identify positive social connections for T within at school and in the community.
- Build pragmatic skills - e.g. print, digital and financial literacies, self-care, chores - to support independence.
Navigate Adolescene
- Have conversations with T about bullying, online safety, drugs, sexual health and consent.
- Identify positive mentor relationships.
- Find productive activities - e.g. sports, part-time work, internships, etc. - to keep him out of trouble.
Maintain and Increase Personal Capacity
- Prioritize our self care through exercise, diet and alone time.
- Identify respite services to give ourselves regular ongoing breaks.
- Protect and maintain work life balance.
Raise awareness and advocacy
- Support T in his continued exploration and understanding of his FASD diagnoses.
- Participate in activities - e.g. blogging, caregiver groups, political activities - that raise awareness of FASD.
- Explore starting a podcast with T as both an advocacy tool and Papa-and-T bonding time.
Enjoy life to the fullest as a family
- Maximize family time on weekends.
- Save for and enjoy family vacations.
- Always focus on the big picture: FASD is part of our family but it does not define us.
T is also thinking about the future, specifically the planet's future.
During a recent bike ride around the neighbourhood, we noticed an unusually large amount of water bottles littered at the park.
T got quite angry and said people are destroying the planet. His exact words, "People are assholes!" 😆
So T took it upon himself to do a park clean up and I helped him. We picked up nearly 30 bottles.
During a recent morning at the office, I received a lovely photo from T's drive to school, along with a sweet text message: "I love the world. But I love you more papa. You are the best papa in the world."
We don't always have great days and some moments are so hard. But I always believe in staying hopeful for T's future.
Having a high-level plan will guide our family over the next few years and allow us to embrace the opportunities that emerge, while feeling better prepared for the storms that lie ahead.
Image at top: Enjoying the view of Thunder Bay during a family roadtrip in summer 2020.
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