“Black Day: The Monster Rock Band” Author, Marcus Sikora, Is A Storyteller who Happens to Have Down Syndrome

“Black Day: The Monster Rock Band” by Marcus Sikora with Mardra Sikora is the bee’s knees. Please follow this link to Huffington Post Books where I will tell you more.

Bubba in the House –

My mother, Thorin’s Bubba is living with us following a hospital stay. She was with us for a month in February after she passed out in a restaurant. Bubba has not had a great 2015: she has been hospitalized 7 times arriving each time in an ambulance. Most stays were for congestive heart failure and the remaining from a broken rib from a fall and a surgery to have a defibrillator implanted. She has also had 3 separate stays at a rehabilitation facility. There have been countless doctors visits.



When I reminded her she has not had a great year her response, demonstrated her indomitable Midwestern spirit: “Think of it this way, I pulled through all those times.”

Bubba moved here to Maine in August, 2012 to be near Thorin, her only grandchild. She was 81 years-old and had lived in her small city in Wisconsin since birth.

Thorin and Bubba are grandmother and grandson but they are also friends. For more on that: The Thing With Two Heads and Sea Change.

Since Saturday, Thorin has kept a close eye on her. I found him sleeping with her when I went to check on him during the night.

Thorin directs Bubba

Thorin directs Bubba

Upon waking to her stirring he told her: “Bubba, walker!” He wanted to make sure she didn’t just walk out into the kitchen.

He is her quasi-physical therapist demanding she walk around the apartment based on instructions from the actual PT : “Bubba, come on!”

I told him it was up to him, she would not listen to me. He said: “Right.”

This afternoon we all sat outside reading. It was so beautiful and nice and regular. We need regular right now.

The Marcy’s Diner Debacle Part 2: Well, someone went THERE

Yesterday, I blogged about an emotionally charged and highly debated incident at Marcy’s Diner in the city we reside. The upshot: I was thrilled the child in question was not a “special needs child” or a “Down syndrome child”. Long story short of that post: I am sick of children with cognitive challenges being examined ad nauseam on social media with regard to appropriate restaurant demeanor. Rest assured I am not alone HERE.

Then, today I read this:

marcy's diner

The Bangor Daily News is reporting this is not in fact the handiwork of one, Darla Neugebauer, owner of Marcy’s, but in fact the work of unknown parties who hacked her account.

Regardless, someone felt the need to go THERE. What is it with the narrative surrounding restaurants and children who have cognitive challenges? Where is *this* coming from? Who benefits from this narrative? Who doesn’t?

The redundant paring of untalented celebrities sans underpants who make sex tapes I get. Innocent children not so much.

Sure, I could brag that I was prescient in my concern’s of the event that unfolded in a small diner in the city I live but I wish I had been wrong.

Why the Marcy’s Diner Debacle Delights Me —

We live in Portland, Maine home to the much debated encounter on social media surrounding something that happened on July 18th between Darla Neugebauer, the owner of Marcy’s Diner, who may or may not have a anger management problem and customers, Tara Carson and her husband, who may or may not be horrible parents to a toddler who may have been either “screaming” or “crying”.

photo by author

photo by author

Both sides have weighed in: Carson on Marcy’s Facebook page to which Neugebauer responded in a profanity ladened post which has since been removed. Then Neugebauer was interviewed by our local NBC affiliate station which was soon after shown on The Today Show among other programming. Not to be outdone Carson just hours ago published a rebuttal post on the Washington Post no less.

What I know for sure is the truth of the matter is murky and unreliable. I know that the debate ignited a powder keg of animosity on the duties and responsibilities of parenting, the nature of children and ladies who yell at other people’s children. More locally– the comment section of The Portland Press Herald’s story regarding Neugebauer’s assessment of the incident reveals the simmering class resentment that pervades some Mainer’s view of tourists in general. Carson is not helping “people from away” by being from New York or publishing on the Washington Post. The only thing that could have made it worst was publishing it on The New York Times. Vacationland Be Damned!

And, honestly, I could care less about all of it save one thing. I am delighted to no end the toddler in question was not a “special needs child” or a “Down syndrome child”. Children with disabilities particularity cognitive challenges take a real hit on social media when it comes to scrutinizing their behavior in restaurants– and everywhere else in the world for that matter. These stories often go viral along with all the ugly comments written by haters as if they were facts about children with disabilities rather than the disseminating of repugnant stereotypes.

I am confident Darla Neugebauer will weather this storm as a business owner, Tara Carson will be on The Today Show by next week, her toddler will not be scarred in the least by this incident and “people from away” will not be dissuaded from coming to Maine in the summer.

The same could not be said if at center stage the child in question had a cognitive disability. It would be one more instance of punishing judgement for that child which would translate to the whole contributing to the ignorance, discrimination and exclusion of children like my son.