You often hear “buzz” words when talking about autism and disabled communities. There are a myriad of terms, and I won’t pretend I know everything about all of them.
One word I’d like to discuss is the term “caregiver.”
A caregiver can fill a number of roles, but it mostly boils down to providing help and assistance to those who need it. Seniors often use caregivers to help with cleaning, cooking and running errands. Nannies help with childcare. Doulas help new mothers give birth and offer post-birth care. In the autism community a caregiver can be someone who is hired, or it can be a parent or guardian.
What happens when you are the caregiver, but sometimes you also need care? This is my life. I am autistic and I have three daughters. Two of my children are on the spectrum and one has ADHD and a Tic Disorder. Obviously, we were born this way. However, I wasn’t diagnosed until my mid-thirties. I learned how to navigate the typical world the hard way, through trial and error.
I did not grow up with a caregiver.
My parents were abusive. If I “acted” in any way that wasn’t considered “normal”, I was ridiculed and punished. There was definitely no “care” in my childhood. When my daughters were diagnosed, I wanted them to have a different upbringing.
“I wanted to be the caregiver. I wanted them to know they were outstanding and unique people.”
I wanted them to embrace and be embraced because of their differences. I have been doing the best I can as a mother, to be the caregiver that I never had growing up. I have tried to let them grow into their own interests, ambitions and life choices. I have praised their uniqueness and challenged them to follow their passions.
I am not the mother of the year. I make mistakes, but I have learned to celebrate my daughters as individuals. That’s not to say that we are problem free. I mean let’s be serious. I’m raising three daughters who are now three teenagers. There is a constant tornado of hormones swirling around my house. When you add autism and ADHD to the mix, it can be downright terrifying. Being the main caregiver can be exhausting.
Of course, my husband helps when he is home, but I’m the ringleader. More than once since my daughters were born, people have asked me when I take a break. People often wonder how I manage to keep all my plates spinning. To be honest, I don’t. I have become overwhelmed more times than I care to remember.
I have household duties, child rearing duties and a million other tasks on my plate on any given day. I also attend all my daughters’ IEP and 504 meetings whenever it is necessary. I have been their biggest fan and advocate. I know my official title is mom and caregiver, but I have never thought about it as a difficult job. In fact, I have never thought of it as job.
Being caregiver for my daughters has been my greatest passion in life.
Soon they will leave my nest and start their journey into adulthood. I will miss my role as their daily caregiver. On days when I feel overwhelmed, I remind myself that my time with my daughters is slowly fading away. I hope to relish every moment so I can be there for them before they fly away.
Megan Amodeo
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