What Does Community Mean?
The vision for my caregiver community is to harness a group of people who share a common experience in caring for a loved one. Based on this, we can support one another.
The challenge sometimes is being part of a community while staying true to yourself.
As we all know, caregiving doesn’t discriminate against age, race, religion or sexual orientation. Therefore, there are lots of opinions, ideas, experiences and perspectives that come to the caregiver table.
I have sometimes found that caregivers believe that everyone should have the same approach to parenting and the sacrifices that one should make related to the care of a loved one.
Personally, I’ve been inflicted with one such incident that stays with me and makes me feel guilty from time to time. It’s related to the decision of whether or not to re-mortgage our house to pay for the therapies for my daughter. We made a very conscious decision that we would not go into debt to pay for additional therapies for Summer.
Even sharing this example I feel the need to defend my position and explain that financial stability is important to me - and that the opposite brings me great anxiety.
It was a personal decision. I try so hard not to compare myself with others.
Even though I tried to keep my guilt at bay when reading all of the media articles about the sacrifices that other families were making to ensure that their children with autism had the therapies and support they needed. The mothers being quoted would say, “What mother wouldn’t refinance her home for her kids?”
It was reinforced when I had traveled to Toronto to protest the provincial government on its lack of autism programs and services. A reporter approached me at the protest and asked, “Have you re-financed your home to pay for your child’s therapy?”
And when I responded, “No”, he simply walked away to find another family that had. This made me feel very inadequate. Made me feel as if I was a bad parent.
Because getting up at 4:30 a.m. to catch a bus to drive for 5 hours to Toronto, protest for 2 hours and then return home wasn’t enough to demonstrate my love for my child.
I share this experience as an example of how being part of a community can sometimes feel confusing.
Especially now with the return to school. In my home province, parents can choose whether to keep their kids home for online learning or have them return to the classroom.
This is a very personal decision based on the unique circumstances of each family.
Ultimately, the question is whether we are able to simply respect everyone’s opinions and decisions - even when we don’t agree with them?
Keeping in mind as well, that being part of an online community is voluntary.
Regarding self-care, I promote a safe space for caregivers to share ideas, tips and experiences. I say that I share my self-care activities as inspiration to others - not as the holy grail of how self-care should be done.
My goal is to remove the barriers that some people have created such as cost, time, location, etc.
It is accessible to us all.
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I am grateful that I get to spend this time with her and her brother. I will honour this time of a more relaxed schedule.
Whichever route a family chooses, what matters is knowing when to ask for help and how to get the right help to care for any family member that needs an additional helping hand.