Mac LOVED our trip to NYC in 2016. Now he has a particular fondness for Lady Liberty. We were so thankful for planning 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 by how QUICKLY we transitioned to virtual learning. Realizing my parenting skills will be on full display, literally, in a video classroom, anxiety kicked in. It took a couple of days to get my bearings, laying out assignments and expectations. I’m an online student myself, but this is an entirely different ballgame, folks.
Thankfully, Mac has a great tech-savvy teacher who knows her way around the curriculum and Google supplements for learning. Also, we have advanced technology and access through the Department of Defense Education Activity schools.
We decided routine is vital for Mac, so that was our priority. We could push wake up time later, but we would keep all our steps the same. We used the same language, prompts, and even wearing our school uniform. We called it “school at home.” Created an organized area with a desktop computer and familiar items; digital clock, pencils, and log on information. Using a Velcro tab schedule, we moved from subject to the website, pulling the tab completing each assignment.
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 Tells with his one on one aide. They can 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 drinks 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 immediately 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
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 terrifying and treated at the ER. We believe, and his neurologist agreed, the bright sun flashing through the tree line on the interstate triggered the seizure while we were driving.
Today we saw his neurologist for prognosis & treatment. Statically speaking, tonic-clonic seizures are a typical 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 episodes will begin 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. 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-clonic seizures 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 any more 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.
Last week Mac’s teacher text me because he was having a rough morning.
I immediately knew the culprit because I questioned the red shirt I chose for him that morning.
Thankfully 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.