Mask Mandates

by jphilo | Jun 15, 2021 | Different Dream, Uncategorized

Mask Mandates

Mask mandates has been tough, but for the special needs community, it’s nothing new. Today guest blogger Stephanie Ballard writes about a different kind of mask mandate she’s decided it’s time for her to end.

“I’m sorry but I don’t feel safe taking care of Braden any longer.” I gasped when I received that text from my sister just about a year ago.

She had been my son’s respite worker for five years. Sleep overs, weekend visits and the occasional run to the emergency room were part of our normal.

Her text sent me into a panic. “How will I be able to do this alone?”Braden has kabuki syndrome, along with half a heart, known as hypoplastic left heart syndrome. His recent diagnosis of autism explains, but doesn’t help improve his chaotic behavior and ongoing rage that seems to come with no cause.

The same week as the text from my sister, Braden’s special needs school called with the message, “We are sorry to inform you the school will be closed again.” The news came without warning.

It’s been a year since my sister’s text and the message from the school. Braeden’s hanging in there. Mask mandates have been hard on him. This past Monday before school, he squawked, “No mask. No mask. I no breathe.”

Later, I cupped the Sponge Bob mask over his face while the bus driver pressed the thermometer up to his forehead. Braden has not gotten used to the morning drill, his new normal.

The yellow bus pulled away and melted into the distance. I sipped my second cup of coffee and pondered about the mask mandate. It reminded me of the mask I, and other parents of kids with special needs, have been wearing for years. This past March was the two year anniversary of removing that kind of mask mandate.

It started out with a text.“Hey honey when you ask me ‘Will you have me just as I am?’ I will always say ‘of course.’”

I texted back to Scott, my boyfriend. “I’m so lucky to have you in my life.”

“Can you repeat that 100 times before I see you today.”

“Yes.”

“I will always be an audience of one for you, Stephanie.”

Scott knows what masks look like. His son, died Evan had a lethal heart disease and spent his whole life technically in pediatric hospice and palliative care.

This morning Scott and I talked about the last year of pandemic and the mask mandate.

“If only we could share our stories about new normals and mask mandates and social distancing within the special needs community,” he said.

“Yeah, we’ve been living with those mandates for years. Wouldn’t it be great if we could tell some of those experiences on how to survive and even blossom?”

“Let’s just not wait too long.”

We talked more about our hope in a new normal and future for us. We talked about divorce, death, and sick kids–things we both know so well–knowing that one day Scott will help me with the “death-of-a-child normal.”

I’m not sure how that’ll work out, but I’m willing to go the distance. I’m getting better at navigating new normals instead of saying “I can’t do that any longer” like my sister did.

“Now, let’s just do away with mask mandates when we’re together.” I said.

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Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.

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Expectation Versus Reality TV

Expectation versus reality TV came into focus for guest blogger Trish Shaeffer during the pandemic. She found the gap between the portrayal of individuals with disabilities on television and what life is like for them to be wide and unrealistic. What she saw resulted in several questions she’s sharing today.

While stuck at home more for the last year due to Covid-19, I caught up on a lot of TV. As I scrolled through countless options for scripted and reality shows, questions began to form in my mind.

Why aren’t there reality shows about parents with special needs kids?
Why aren’t there reality shows about people living with disabilities?

In today’s world people are fighting for change and protesting for the rights of many individuals. But it seems that the disabled population had been forgotten and put into the background of rights, understanding, and love.

Are they not people too?When did disability rights become a touchy subject?
Why does it seem the world has forgotten about them?
Why is there a stigma about how we title people with disabilities?

I did a poll online to get a better understanding of how and why people have different opinions on how to address the issue. I got feedback. For sure. It turned into a heated debate. My question at the end of the poll was this simple. Why don’t we give people with disabilities their own individuality?

Why don’t we begin by addressing adults with disabilities by their name?
Once we know their names, why don’t we ask the person how to address them?
Why don’t we ask a child or the child’s parents their names, address the child by name, and ask the parent or child how they prefer to be addressed?
It is that simple.

I keep going back to my original question about the lack of reality shows about someone living with a disability or about parents raising a child with a disability. If there was such a show, maybe the stigma about those with disabilities would stop.

Maybe the world would understand how to address a person with disabilities.
Maybe those shows would increase compassion and love toward the disabled community.
Maybe people wouldn’t feel awkward when they encounter a person in a wheelchair because they will know how to start a conversation.
Maybe parents of typical kids will understand the daily struggles of special needs parents instead of judging and staring.
The possibilities are endless.

Being a special needs parent is full of ups and downs. It is hard but full of reward as well. Being a person disabilities is also full of ups and downs. Success and struggles. It’s a world no one will truly understand unless they live it. But, a show about it will open doors, possibilities, compassion, and give people and insight. My son would benefit from seeing someone like him overcome or deal with a disability. Some one he could relate to.

So I ask you as the reader, would you like expectation versus reality TV to come into focus for you?
Would you like to see a reality show about being a special needs parent?
What about a show about someone living with a disability?

Let’s end the stigma about the disability community.

Let’s spread love, acceptance, and understanding.
Let’s talk about disability rights.
Let’s end the expectation versus reality TV disconnect.
Let’s use reality television to do it. Come on TLC or Discovery!
Let’s make a show happen!

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Trish Shaeffer is the mom of 3 active boys with special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Schaeffer.