National Autism Awareness Month (every April) raises awareness for autism and Asperger’s syndrome. Autism is a complex brain disorder that often inhibits a person’s ability to communicate, respond to surroundings, and form relationships with others.
Impacting 1 in every 270 people in the world, autism challenges many areas of one’s life. Some of the profoundly affected areas include social, communication, and behavior. Children with Autism Spectrum Disorder are usually nonverbal, or they have restricted or repetitive behaviors. ASD also affects people of all racial, ethnic, and socioeconomic backgrounds.
In Pensacola, there are many champions of education and awareness of ASD, one of them being Rocky Parra. She is the author of the book “Embracing Mrs. Mommy” and curates the Facebook blog, Mrs. Mommy Writes.
It is an effort on her part to provide snapshots of daily life raising a child on the autism spectrum, showing that there is a way forward and making sure parents realize they are not alone.
Our series with Rocky will include five of her favorite blog posts introducing you to her as a resource, an understanding and compassionate friend that you have never met in person, and an advocate for your child and family.
Note from Rocky: I work to frame my posts in a positive light, I want to offer our perspective on autism, raise awareness and encourage acceptance. To be transparent, today’s post covers some of the difficulties that accompany caregiving. Please remember though, you are not alone. Rocky
Originally posted April 24, 2022
Dear Moms, Dads, Grandparents, Siblings, et al,
I see you.
I see you when we exchange glances of understanding while waiting to check out at the grocery store.
I see you when your loved one is melting down at the amusement park.
I see when you are trying to just get through the day after a series of sleepless nights.
I see you as you are walking out of the IEP meeting in tears, and I am walking in on the verge of tears knowing the difficult conversation that awaits me.
I see you in the cry room at church with a child who is older than the infants the room is designed for, but it’s the only way you can attend, and you refuse to give up your faith.
I see you in the waiting room at therapy when you are trying to either take a minute for yourself or give your other child (children) some undivided attention while you can.
I see you trying to make a quiet escape from the sporting event or dance recital because your loved one is so overstimulated that neither of you can enjoy it.
I see you.
Caregiving for a special needs individual demands a lot from a person, a marriage, a family. It can be exhausting–both mentally and physically. It can feel lonely, isolating, but you are not alone. Though you may feel alone, you are not alone.
According to the CDC, about 1 in 6 families in the United States have a family member with a developmental disability.
So while you may not know other families like your own, they are out there. If you can, find a friend. Look for them in a local support group, at school, or at church. Even if their loved one is older or younger than yours or lives with a different disability and cultivate the friendship.
Though you may not understand the specifics of the other’s loved one’s diagnosis, you certainly understand the exhaustion, worry, and fear that accompany this caregiving role.
Worry creeps into so many moments, worry about phone calls from school, doctors, and other caregivers. Constant questions arise.
Am I doing enough? Providing the right treatments? Taking the right medications? Working with the right therapists? Attending the right school? Spending too much time on screens? Indoors? Eating the right diet? Properly preparing for the future? Endless questions, endless answers.
All parents worry, it’s part of the parenting DNA.
This worry feels different, heavier.
I see you trying to balance it along with the rest of life’s demands. You cannot rid yourself of it, but you can lay it down for a moment. No one is going to take it from you. Maybe you watch a thirty-minute sitcom, say a rosary, read a chapter of a book, take a bath, or call a friend. Just make a pact with yourself to set the worry down, each day, for a minute or two, even fifteen.
That break, however, small provides your mind and body the rest needed to pick the worry back up. You have to pick it up again, it does not magically disappear.
However, when I pick it back up, I find it weighs just a little less than when I laid it down and I am ready to continue the work.
Remember that you are seen and that you are not alone.
Follow Rocky Parra on Facebook at @Mrs. Mommy Writes