For those of us who remember life pre-internet, we can’t forget the impulse buying section at grocery stores filled with The Sun, The Examiner, The Weekly World News and The National Inquirer. Bold headlines; Bat Boy Found in Cave and Elvis is Alive just to name a few.
Even at a young age, I knew it was lies because my parents scoffed at the stories and the readership believers.
As I try to make sense of life in America today, the behaviors of those in high offices and their followers, I discovered a possible explanation.
The internet has become the Mecca of tabloids and there are no laws or policies to disclose what is blatant entertainment. This has created millions of disciples believing conspiracy theories and untruths amidst a global pandemic.
For all those years we saw print headlines “The Anti-Christ has Arrived” and “The End of Times is Here,” we are now living in a cesspool of believers endangering our species because they are failing to discern fact from entertainment on the internet.
Yesterday Damon cited an NPR report that suggested we should be setting the example and sharing photos of people being socially responsible by wearing mask. The report claimed that psychologically showing people wearing mask as the norm will encourage others to follow suit. At first I called BS because we live in such a divided volatile time in our country. I thought there was nothing that would convince those who deny science believe that they could help save the lives of others.
Then I thought about the people I associate with and I got this overwhelming sense of pride and gratitude. The people I call friend care. The people I call friend love their children, care about the elderly and their extended family. The people I call friend believe in science. The people I call friend are socially responsible. The people I call friend wear mask.
Friends, you make me proud, grateful and hopeful that our species will continue to thrive because you WANT TO LIVE.
Mac LOVED our trip to NYC in 2016. Now he has a special fondness for Lady Liberty. We were so thankful for planning ahead so we could give him a special day today!
There are so many things to celebrate this year as Mac turns 13!
On track for growth and development.
Making great progress in his academics.
Adjusting to Virtual Learning like a champ.
An amazing trustworthy and loving team of educators and aides.
Seizures are under control with medication sans any side effects.
Like most moms, I was overwhelmed how QUICKLY we transitioned to virtual learning. I was filled with anxiety realizing my parenting skills will be on full display, literally, in a video classroom. It took a couple of days to get my bearings, laying out assignments and expectations. I’m an online student myself, but this is a completely different ballgame, folks.
Thankfully, we are blessed with an amazing tech savvy teacher who knows her way around curriculum and Google supplements for learning. We are also blessed with advanced technology and access through Department of Defense Education Activity schools.
We decided routine is key for Mac, so that was our first priority. We could push wake up time later, but we would keep all our steps the same. We used the same language, prompts, get ready steps and even wearing our school uniform. We called it school at home. Had an organized area with our desktop computer and familiar items, digital clock, pencils and log on information. Using a Velcro tab schedule, we moved from subject to website, which was beneficial as Mac pulled each tab once it was completed.
Mac’s daily team meetings with his teacher, aides and classmates, kept familiarity and he is so excited to see everyone each day.
He has daily Show and Tell with his one on one aide. They are able to share things from home with each other and stay connected.
We use Mac’s favorite item, his treadmill, as morning movement and for break times. It was a great way to keep him active and engaged.
For lunch, we drive to Sonic. Mac requests French fries and drink on his voice (AAC device) just like he does in the cafeteria line at school. He has 45 minutes for lunch in his room as a little reprieve.
After lunch, we do another round of academics at the desk and finish our day with PE. Outdoor activities; bike riding, walking the dog, trash clean up and sometimes exercise equipment inside on rainy days.
Mac has been a champ and doing great with his new virtual school from home.
To all my fellow special needs moms out there, we know it takes a village to raise a child. Although it may feel like it right now, you are not alone. Your village is one text, email and video chat away. Reach out!
I met Tonya Galle and Chuck Latham in 1980 in Ms Richard’s class at Our Lady of Perpetual Help School in Belle Chasse, Louisiana. Tonya and I were immediate best friends. And Chuckie…..well, he is my first love. Lura Menard and I clicked in 1990 in Coach Lewis’ PE class at Belle Chasse High School sophomore year, we’ve been inseparable since.
Although we’ve lived in different states and towns for the last thirty years, these are the friends who’d help you bury a body and take the secret to their own grave. The friends who’d drop everything and fly to your rescue. The friends who would raise your children if anything ever happened to you.
There is no one on the planet I’d rather have than these roll dawgs.
Rosebud aka Stew
Mac Medical Update:
In November, we were optimistic that Mac’s EEG only showed one brief absence seizure trigger by photosensitive (flashing) lights. Unfortunately, on our way back from Louisiana (Dec 30th), Mac had tonic-clonic (grand mal) seizure. It was very scary and he was treated at the ER. We believe, and his neurologist agreed, it was likely triggered by the bright sun flashing through the tree line on the interstate while we were driving.
Today we saw his neurologist for a prognosis & treatment. Statically speaking, tonic clonic seizures are a common phase of generalized epilepsy once a person with absence seizures reaches puberty. Mac started puberty in January 2019. At this time, you will slowly see a decrease in absence seizures and tonic clonic seizures will start to manifest.
His neurologist reassured us tonic clonic seizures were treatable with medication and we had lots of options to choose from to find the right cocktail for Mac. He was hopeful that Mac only had one tonic clonic since the 30th. Also, that we immediately took measures (blue tinted glasses inside and dark sunglasses outside) to eliminate triggers and prevention.
Mac will be starting Zonegran today for the tonic clonics and maintaining all his other medications at present levels. We are continuing the Charlotte’s Web CBD oil because the benefits outweigh the cost. Hopefully one day the FDA will change the required diagnosis for Epidiolex and we can finally get that prescription filled 🤷🏻♀️.
In a nutshell, Mac is in the next phase of generalized epilepsy and our mission is to medicate, treat and take all measures to prevent anymore seizures.
Thanks for the continued support, thoughts and prayers for Mac and our family ❤️.
Elizabeth Wurtzel died of breast cancer yesterday. Her book Prozac Nation blew my mind at 20. Through her writing, I realized I too suffered from depression. One of her essays was re-published in honor of her work. I thought it was worth sharing.
“The best people are the ones you have to forgive for everything. You have no choice; it would be worse to live without them.” -Elizabeth Wurtzel
Outside our front door.