going through the motions
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.
Overall Happiness!
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!
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 ❤️.
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.
Because Autism parents rarely experience it, I wanted to share Mac’s recent neuro-typical 12 year old boy behavior. We put up a little family pool in the back for him to cool off in the afternoons. I’ve been getting in with him and practicing putting his head back to wet his hair to get him more comfortable with the water. 99% of the time all he wants to do is spit water at me and giggle. Obviously this isn’t appropriate behavior, so I am trying to curb it as much as I can. However, when I see his silliness and engaging in what I know typical 12 year old boys do, I can’t help but smile ☺️🧩
This evening I had the pleasure of hanging out with my cousin and some of my favorite fellas from high school. I love that geography and the passage of time hasn’t diminish us and we fall right back into place. You will always be home. And although I swore I’d never marry someone from Belle Chasse, you remind me why my people will always have my heart. You remind me why my senior year of high school was the best of times. In the transient life of a military spouse, it’s hard to find people who are trustworthy and reliable. Tonight was refreshing knowing if I needed anything, you would be there. #watereddownbarryquirk
It’s the little things. Mac has always struggled to blow out candles. While in PK, his teacher presented him with a birthday cake toy he loved. He would try to blow the plastic candles and it would play music. He worked very hard but still struggled.
Finally today on his 12th birthday, we encouraged him and Mac blew out his numbered candles all on his own.
Celebrating the little things on our Autism journey.
When you don’t have a compounding pharmacy and your child won’t swallow a pill….you wipe the plastic coating off the pill to compound it into a liquid.
Not all storms come to disrupt your life, some come to clear your path.
