Like anything in life, it’s hard to imagine something when you haven’t experienced it yourself.
- A fighter pilot hitting g-force
- A woman giving birth
- A person receiving a cancer diagnosis
- A soldier fighting in combat
That is why caregivers need to remember that most people will never fully appreciate the daily struggles, challenges and emotional upheaval that we experience in raising a child with special needs.
Sometimes, when I visit family or spend long periods of time with friends, I find myself in awe of how simple their day-to-day parenting life is.
For example, the other kids get up and get their own breakfast. The other kids get dressed on their own. The other kids go outside to play by themselves. The parents know where their kids are and what they’re doing - and that’s it. No supervision is required. No engagement is required. And, there is no worrying.
The parents are then free to what they want.
Then I wonder to myself, “they have no idea how easy they have it.”
These are subtle examples of how everyday life differs for parents who do not have children with special needs.
And then we caregivers have the therapy sessions, medical appointments, toileting, respite, paperwork and the worry about the future on top of the everyday normal.
Have we even spoken about behaviour yet?
I was recently reminded of this when having dinner with my best friends. I was late because Summer had been fighting with me while I was trying to change her soiled pull-up. Therefore, when I finally arrived at dinner, I was a little frazzled and made the comment that I had had a stressful day because Summer had started to fight me when changing her.
Their reaction - my three best friends - was, “Summer is still in pull-ups?”
And my reaction was, “Yeah!! I’ve been changing dirty diapers for 10 years!”
They were in shock as they responded, “OMG! Nic, we had no idea.”
Once I thought about, I realized how would they know what my everyday normal looks like?”
It was my normal - my 10-yr-old daughter in pull-ups and me changing her daily. It had never really crossed my mind
When I think of stresses and challenges, the mundane daily activities rarely come to mind.
We as caregivers do not give ourselves enough credit, grace, compassion and love for all of the little extra things that we do every day for our loved ones. This is more reason why we need to take time for ourselves. We so deserve it.
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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.