12 days of Christmas rendition brought to you by.,,

(I do not earn the rights to this song.)

The other day the girls were actually sitting next to each other and Courtney was rubbing Alyssa’s hands, Alyssa out of nowhere says, “this is how Courtney tells me she loves me”. I actually had to gasp for air as that beautiful and mature statement hit me. I then responded to her that yes that is her way of saying she loves you. I reminded Alyssa that it has been her way to show her love since she was born. Courtney has always loved rubbing Alyssa’s hands. I then said, “Alyssa, Courtney then knows you love her because you let her do that sometimes.

These moments are brief but beautiful. It is their way to remind me that though they have their tough moments, they certainly do love each other.

I love the moments where Courtney does something that is typical of an 8 year old. We were getting ready for speech therapy via telehealth. I put my the iPad and my phone in the room we were going to work in and I told her we were about to get on for therapy. I went downstairs to get something, came back to the room and the phone and iPad were missing. SHE HID THE DEVICES!!!! She decided she didn’t want to do therapy so she did something about that. How typical is that?! Yes, I found the devices and yes she still did therapy.

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.