Autism Moms: Surviving Virtual Learning during a Pandemic.

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!

Oldest and Dearest

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.

Eternally yours,

Rosebud aka Stew

Oldest and Dearest

Mac Medical Update

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 ❤️.

Thank You.

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

https://www.google.com/amp/s/www.thecut.com/amp/2018/12/elizabeth-wurtzel-on-discovering-the-truth-about-her-parents.html

Autism Awareness

Last week Mac’s teacher text me because Mac was having a rough morning.

I immediately knew what the culprit was because I questioned the red shirt that morning.

I’m thankful all those color theory classes I took are still paying off. Especially as a mom to an Autistic child who senses and experiences things 900 times more than neurotypical children.

Mom’s are the Subject Matter Experts

Mr Sonnier Goes to Washington

Mac on Capitol Hill
Mac and Daddy Steven Udvar-Hazy Air and Space Smithsonian Discovery Space Shuttle


Mac and Daddy Space Shuttle Discovery
Mac’s DC favorite……the Metro Blue Line
Mac and Daddy Riding the Metro Blue Line in DC
Waiting for the Blue Line DC Metro

For my Sweet Arya

My BFF from college, Anita, recently had a baby girl. Anita is an incredible, compassionate woman who loves all living things and is respectful of Mother Earth. She makes such an impression on everyone, that all those she touches wants to be a better human being.

Anita and her husband James are first generation Americans. Their McDesi union created this amazing little girl. I wanted to make something for her that represented and honored the heritage of her mom and dad. The design is an Irish Chain with the green representing James’ Irish lineage and the purple represents Anita’s Indian lineage.

I hope Arya will treasure it, because it is the only quilt I will ever make.

For My Sweet Arya, Made with love by Rosie Masi