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.

September was a very long and hard month. There was some good, some bad and well…some disgusting.

The good…we are all adjusting to being back to school. Alyssa is handling full day kindergarten beautifully! Our new nanny is managing the schedule well and we are very pleased! I’m one week away from completing my first class of 10 towards my BCBA! And we survived the month!

The bad…Courtney has had a rough start to school. Not awful but not great. Her behaviors have increased and avoiding work like a champ. We have seen some regression in some areas too. It’s been defeating to see reports of a lot of pinching and scratching day after day.

The other bad…Alyssa’s sensitivity noises had gotten better once school started. It definitely helped that she wasn’t home all day with Courtney. The last 2 weeks though it is coming back. School is starting to see it too. She talks about how the class is just too loud. This of course worries me. Fortunately the teacher seems to be very understanding and is helping her through these moments.

Then there’s the disgusting. The behavior that’s going to break me if it continues much longer. The behavior that makes me want to shout “Autism sucks” as loud as I can. As I’ve shared, Courtney is still not potty trained. We still have this major hurdle of her being scared of the bathroom. In some ways she’s ready, but yet we are so far. Her newest behavior is when she has a bowel movement it ends up everywhere. Let’s just say this beautiful Saturday morning started off with us pulling out the massive rug cleaner at 7 am.

September was tough but we survived. We are happy and healthy and sometimes that’s all you can ask for.

“Mommy?” Asked Alyssa from the back seat of the car who was sitting next to Courtney.

“My friend, ‘Rachel’ has an older sister who can talk. I don’t. That makes me sad. So does ‘Elise’.”

It was hard to hold back the tears but I needed to. While holding back the tears I also had to think of a response that would make it all better for this little 5 year old special need’s sibling. How do I explain to her that though she doesn’t have what her friends have she still has something special.

I know what triggered this conversation. We were at her school’s ice cream social tonight. She ran into her friend, ‘Rachel’. The two of them, along with Rachel’s sister, played on the playground together and ate their ice cream together. Courtney was there but Courtney was doing her own thing. Courtney didn’t even acknowledge that she was at the park with Alyssa.

I came up with a response and I think she was ok with the response. Meanwhile, my heart is still healing from the conversation.

The emotions a parent goes through on the day of their child with autism birthday is hard to explain. It’s definitely one of those moments that unless you have a child with autism, you will never understand. In fact, you may even question our emotions? I can almost hear the comment, “can’t you just enjoy their special day?”

That’s exactly it! We want to enjoy their special day! We want to enjoy just like everyone else gets to enjoy their child’s special day. But it’s hard to enjoy their special day when you don’t even know if they comprehend that it’s their special day.

Did we celebrate it the way Courtney wanted to celebrate it?

Did she have fun?

Did she get the presents she wanted?

Did she enjoy her cake?

Does she even know it’s her birthday?

She can’t answer these questions so I honestly don’t know.

So I’m left with basing it all on body language, her facial expressions, her mood, her noises, etc. Based on those? Well, she attacked me when I tried to put her penguin birthday shirt on her because it wasn’t pajamas (mind you she had pajama pants on, she seemed indifferent about her presents, and she barely even looked at the adorable polar bear and penguin cupcakes. Did she enjoy her birthday?

I forgot to mention the strongest emotion I feel on her birthday each year. The emotion of though she is another year older, she is still so far behind those her age,

I know, I should just enjoy her on her special day. Which I did. I just also think it’s healthy for us special needs moms to acknowledge all the emotions we feel.