Where do you see yourself in the next 5 years?
It’s a question I’ve been asked more than a dozen times throughout my life in various situations – post college graduation and job interviews are among the most common scenarios.
Back then, I would answer confidently, sharing the goals and visions I had set for my family life and career – excited about the limitless possibilities.
I had everything planned out, as any organized control freak would do.
While climbing the corporate ladder, I would simultaneously manage the sports and social schedules of my children, ensure a homecooked meal was on the table every night, enjoy frequent date nights with my husband and stow away plenty of money in preparation for college tuitions and a glorious retirement as an empty nester.
However, the reality is that God had other plans. His would require some adjustments to my vision and force me to ask myself a slightly altered version of that question.
Where do I see our ‘forever party of 3’ in the next 5, 10 or 15 years?
As a lifelong caregiver and court appointed guardian to my 20-year-old son, Skyler, who is non-verbal autistic and completely dependent on his dad and me, this is a topic I must force myself to frequently address.
Due to Skyler’s age, traditional programs and services will abruptly end sooner than I’m ready to accept, forcing us into panic mode as we place his name on countless multi-year long waitlists while we try to remain patient.
The scarcity of day programs or other community groups within our home state is an embarrassment and will require us to make a choice between two extreme options… 1) I resign from my full-time job to create and administer a fulfilling daily schedule of activities for Skyler or 2) our family relocates to another state that has more services available for Skyler.
And by more services I mean one or two additional waitlists to add his name to.
And therein lies the issue. Both options are frightening and unfair to all of us.
I am not ready to quit a job and career that I love and have spent 25 years successfully building. But Skyler isn’t to blame for the broken system that will completely disregard him when he reaches the ripe old age of 22. So, if I must add therapist and program coordinator to my list of duties and responsibilities as his caregiver, I’ll do it because seeing the joy on his face is worth it.
I love our home and the friendships we’ve built throughout almost 30 years of living in this community. But, knowing that Skyler has the potential to live his best life with increased access to services and alternative living arrangements for when we’re no longer around to care for him, makes the decision to uproot our life and start over somewhere new worth the risk.
Perhaps I’m being selfish when I catch myself daydreaming back to what my younger self envisioned for my golden years and empty nesting. I always thought I’d be traveling the world with my husband and enjoying visits from our adult children and their families.
At times I feel a bit cheated, which pains me to admit, because I’ll never know a life that doesn’t revolve around caring for Skyler 24/7.
But more than that, I’m constantly sad about how the world has cheated Skyler and those like him.
Why aren’t adults on the spectrum valued throughout the entirety of their lives instead of being told, by way of discontinuing services, that once they reach a certain age, they are no longer important enough to prioritize.
Families like ours shouldn’t be forced into life-altering decisions like unemployment or relocation for their loved ones to have the opportunity to build a future of their choosing.
So, over the next year as we try to plan and strategize where our ‘forever party of 3’ will be living and what each of our daily lives will look like, I will continue to have faith.
God’s plan is always better than mine and I’m confident that everything will work out as it should… for Skyler and for us, his forever caregivers.
