Mac is an Official Teenager

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.

Overall Happiness!

Mac is Excited and Genuinely Happy!

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!

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 ❤️.

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

Autism Awareness

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 ☺️🧩

Autism Awareness

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.