We tried to finally get out of the house finally after 12 days of being quarantined. We tried to do what we love doing most on Sundays. We tried visiting my parents, my sister and kids. We were so excited. We tried….but anxiety (and car sickness) won. The uncontrollable shaking in a gas station bathroom said it all. When my little 6 year old, who was dying to play Roblocks with her cousin in person, looked at me in full panic attack and said, “I need to go home”, I knew that’s what we had to do. So here we are back home.

We were kinda struggling with our Thanksgiving stick at home with Covid so our elves decided to brighten our spirits! I don’t think our elves have ever made it on the blog. Meet Twink (top left), Elfa (top right), Sparkie (bottom left) and Sparkles (bottom right). Twink is our original elf. He was CBmy “elf” as a kid. Long story how the other 3 joined us. Our elves aren’t like elf on the shelf. They stick around all year and they can play with them. During the holiday season they help add some fun to our days.
Alyssa loves these 4. Courtney could care less about them. The idea of elves and Santa visiting is a little too abstract. They still include her I all the fun though. Hoping that one day she will understand it all.
Our family and our elves wish you all a very Happy Thanksgiving and here’s to a fun filled holiday season!

I’ve mentioned it before that my girls really struggle being on the same level of the house together. Basically my girls can’t tolerate each other. I’m not talking about sibling rivalry. I’m talking their sensory systems literally can’t tolerate the other one.

Both of my girls have sensory processing difficulties and anxiety. They are both very sensitive to noises. They both can be loud and even unpredictable in their behaviors. This heightens both of their anxiety.. So how have they learned to cope with this? They hang out on different levels of the house. Alyssa stays on the main level and Courtney is upstairs. This is ALL the time. Courtney basically only comes downstairs to eat.

Alyssa was out of the house and guess who made it downstairs. She has a different demeanor when Alyssa is out of the house. She’s calm. It really hit me who little she is downstairs when I saw her playing with the Christmas decorations. The decorations have been up for more than 24 hours and tonight was the first time she saw them.

They love each other. I know that. I don’t doubt it. Their sensory systems just can’t handle each other.

We’ve been working hard on trying to increase Courtney’s length of utterances with her talker. She’s been stuck at using 2 word utterances for a while now. With prompting we’ve been able to get more but not independently.

I was down in the basement working out and I suddenly heard her talker say something, I went to go check and on her talker was, “I want blanket yellow”! The yellow blanket is her comfort item. Has been since she was a baby. Though a favorite item it took her a while to learn how to request it. She usually just calls it “yellow”. Now she knows how to request it so anyone knows exactly what she wants. So proud!

We’ve been here before. We seem to have to go through it at least once a year. It never gets easier. It’s the cycle where Courtney gets super constipated to the point that it also causes similar symptoms to a UTI. It causes her to have fits of rage that are inconsolable. A mother’s hug doesn’t come close to helping. In fact, me hugging her just puts me in danger of being scratched, pinched or bit. It’s a meltdown that wakes up the entire house in the middle of the night and keeps us up for hours. It leaves me feeling useless as a mother. I’m supposed to be able to help her but when this happens, I can’t. All I can do is let her know I’m here for her and love her. This is when autism is super hard.

Six years ago tonight, joe and I went in to labor and delivery for me to be induced. A week overdue and we were anxiously awaiting for Alyssa to join our family. Little did we know what at first seemed to be a simple easy delivery super early on November 6th would just as quickly turn in to the scariest day of our lives.

I wish I could do nothing but celebrate Alyssa’s birth on her birthday. And trust me, we do, because it’s more than just her birthday, it’s the day I was given the second chance to live. But like every mother on the day of their child’s birthday, you take time to reflect on that day and that day was nothing but scary. It’s the day that Alyssa ALMOST spent just an hour knowing her mom. It’s the day Courtney ALMOST lost her biggest advocate, it’s the day my husband ALMOST lost the love of his life. It’s the day I ALMOST died.

The amniotic fluid embolism that I had immediately after Alyssa was born took a part of me even though it didn’t take my life. It took away my ability to breast feed her. It took away hours of bonding time with her as I recovered in ICU. It took away my ability to just celebrate the day. It took away my ability to have more children which was definitely in the plans.

But It didn’t take me, thanks to my amazing doctor and nurse. Six years later, I am here. I am here to share about advocating for Courtney. I am here to tell about all the amazing things Alyssa is doing. I am here to be the best mom, wife, sibling and daughter I could be. I am here to tell my story. So today I reflect because it’s natural. Tomorrow, we will celebrate.

Truth be told, the noises in my house now give me anxiety. Courtney majes vocalizations, Alyssa hates them so she screams snd then just like that, I feel my anxiety sky rocket. I can’t stop Courtney’s noises, it’s who she is. It’s not fair to Alyssa because her response is not just behavior. We have found she definitely has noise sensitivities. So how do I help my girls through these moments that happen ALL DAY LONG? So yes, the noises in my house cause me anxiety.

I was born into this amazing (and large) family. If you are close family and friends you know my family has been in a rough patch as my mom broke her hip and shattered her funny bone while on vacation. We’ve had to watch her and my dad from a far go through a very difficult time. As hard as this has been on us all, we were able to see the beauty in it all too. Us 10 kids have come together (mostly through texts) to make sure we were by their side through it all. We have worked together to make sure their house is ready for their return. We have found ways to be their rocks even though we couldn’t be next to them. It was hard but it was beautiful too.

While the ordeal with my parents was going on, other things in my family of 4 were going on. Minor compared to my mom’s health but none the less, things have been piling up and I have felt it. Today I felt the heaviness of it all. I was going to crack. But there’s no time to crack. I have to remain strong and keep plugging along.

Then somehow I got a timely message from my older brother. A simple picture of a page in a book that shared that it’s ok to not always have it together. It’s ok to lose control. It’s ok to crack. You don’t always have to pretend you are “ok”.

At first his text put me to tears but then it gave me relief. It reassured me that though I felt like I was going to crack at any minutes, it was ok to feel all of that. If I needed to cry, scream, or admit I was going to crack, it’s ok.

I’m fine. We are fine. We will get through these bumps. If my mom and dad can get through what they just got through 1000 miles away from home, I can get through this pile of little things we’ve got going on. But thank you, Jeff, for reminding me it’s ok to not be “ok” at times.

Picture is of a tea party with Alyssa who I stayed home with today. What I thought was possibly Covid because of recent exposures ended up being her having an anxiety attack. We got through that and enjoyed a fun day just the two of us,

I did a thing today. I applied for a handicap placard as a parent of a child with a disability. At first I wasn’t sure about it because Courtney is not physically handicapped. Other autism parents had shared that they had one so I decided to ask her pediatrician about her. Courtney’s pediatrician immediately said we should definitely have one for safety reasons.

Courtney is a runner. As the doctor stated on the form, “she’s a flight risk”. If you are walking in a parking lot and not holding on to her hand, she will likely take off running. She may even try to take off while holding her hand. Though it has gotten better after a lot of practice, there is still a chance at any given time, she will take off on us.

Courtney also struggles with transitions into places. If she is anxious about going into a building or store, she will fall to the ground. Now that she’s bigger, I can’t just carry her. I’ve learned ways to safely physically assist her but it is not easy.

So for these reasons, with her Pediatrician’s assistance, we have applied for a placard. so to other parents in my position, don’t hesitate. Do what you need to do to keep your child safe!

Courtney’s last few years….

Kindergarten: new school, new teacher, new nanny. Covid hits in March and “school” out for year.

1st grade: 1st nanny (Savannah) returns, remote learning, hybrid learning then full time in person.

2nd grade: New nanny. She’s finally in person all day and every day then….nanny quits, and Courtney also has a sub at school for 3 weeks only to find out her teacher resigned so now a new teacher. Savannah returns!

Alyssa’s last few years…

Preschool: new school, new teacher, new nanny. Covid hits in March and “school” out for year.

Pre-K: Savannah returns. Remote learning with teacher from 1st year. Remote learning with new teacher . Hybrid learning. Full time back in school.

Kindergarten: new school, new teacher, all day school. New Nanny. Nanny quits. Savannah returns!

My family thrives on routine. We thrive on consistency. I feel like the last three years have been all but that. No wonder Courtney’s behaviors are all over the place. No wonder Alyssa’s anxiety is bad. No wonder I’m losing my mind!

We will just keep plugging along and enjoy every moment of those calm and happy moments.