At 11:30 pm she started tossing, turning and moaning in her sleep. I knew right away that she wasn’t feeling well. I knew right away I was in for a long night. I knew right away that her and I would be staying home from school. I didn’t know what was wrong at that moment but as a mom of a child who is minimally verbal, I’ve learned to read every little sign and I knew just from her tossing and turning, she was sick.

My anxiety sky rocketed. I hate when she’s sick. First, it’s me having to guess what is wrong. What hurts? Does she need to see a dr? What meds should I give her? Such a guessing game.

I didn’t have to guess this time though! Courtney’s tossing and turning quickly turned in to her being awake. Once awake she grabbed my hand and put it on her right ear and verbalized, “ear”.

The CONVERSATION then went like this…

Me: “Does your ear hurt?”

Courtney: “ear hurt”

Hmmm…but is she just repeating me?

Me: “Do your feet hurt?”

Courtney: “no”

Me: “does your tummy hurt”

Courtney: “no”

Me: “Does your ear hurt?”

Courtney: “yes”

No guessing. No playing detective. No trying to read in to every sign. She told me. Her ear hurt!

I have never been so excited to hear her say she has an ear ache!

Now for her to start feeling better.

Eleven years ago tonight, joe and I went to our favorite Mexican restaurant. That night we were just a married couple enjoying our last night as a family of 2. The next day we became parents. Parents of our beautiful Courtney.

I remember that night well as we talked about what we were about to become.

Eleven years ago we knew we were about to start an amazing adventure but there was no preparing us for the adventure we were truly about to embark.

Eleven years ago we knew we were about to be parents but we had no idea we were about to become autism parents.

Eleven years ago we were about to become mommy and daddy but we didn’t know the effort it would take for her to say mommy or daddy.

Eleven years ago we were prepared for the ups and downs of parenting but we were not prepared for the ups and downs, the struggles and celebrations, the laughter and tears and the complete joy of parenting a child with autism.

Oh Courtney, as we celebrate you and the past 11 years, as unprepared as we were that night, we wouldn’t trade the journey you have brought us on and continue to take us on for the world. We love you, Courtney Cathryn! Happy night before your birthday!

Well, that’s a wrap. Summer 2024 has come to an end.

I typically am not the teacher who says, “Wow, that flew by.” Instead, I often find myself, as a special needs parent, asking, “Is it time for them to go back?” Not because I don’t cherish our summer moments together, but because my family thrives on routine, and maintaining that can be challenging during breaks.

This summer, I find myself feeling ready for it to end, yet scared to death at the thought of the school year starting.

In many ways, this summer, more than ever, autism took center stage in our lives.

As we approach the end of this season, I bear more scratches and bruises than usual. I watch as Courtney grapples with severe bruising on her wrist from self-biting. Uncertainty looms over us as we ponder what the upcoming school year will look like. Will she remain at her current school? Will there be more transitions? Are we entering the world of therapeutic schools?

So many questions swirl in my mind, and the uncertainty is overwhelming.

This summer has concluded with tears of desperation as we seek help for Courtney. We have come to the difficult decision to place our trust in the medical profession and explore medication options for her.

Let me not forget to celebrate the amazing summer Alyssa had. I am so proud of the growth she is making every day.

As summer gives way to fall, we embrace the transition back to routine and structure.

Here’s to this year being much better than last year. Together, we will navigate the challenges and celebrate the victories, no matter how small. Let’s approach this new year with hope and resilience!

Sleep.

It’s always what is disrupted most when we are away from home.

Not that sleep is great at home these days but when away, it’s worse.

I’ve mentioned recently that Courtney’s separation anxiety is through the roof recently. One area it’s really effecting is sleep.

Courtney and I share a bed at home. In our king size bed, she is as close as you can get to me. Through most of the night, her body is touching me in some way. If I’m not there, she ends up waking up at some point and come searches for me.

This became an issue at our stay at the cottage. Courtney won’t sleep in the bedrooms whenever we stay at the cottage. Hasn’t for a few years. She chooses to sleep on the couch. This year, I had to sleep on the other couch. Here’s the problem…the other couch is not right next to her. So, during this vacation, Courtney would wake up in the middle of the night and come join me on my couch. We would both find an awkward position to sleep and then once she was sound asleep I would move. Then…repeat.

This exhausting routine opened my eyes to just how bad her separation anxiety is right now. It’s intense. Honestly, it’s almost suffocating. And obviously quite exhausting.

The first time she said it I was so excited! I celebrated! But it didn’t take me long to realize we wouldn’t be celebrating long.

We got to a red light and Courtney shouted, “red go”. Alyssa and I both cheered on her great words but then told her that green means go. She then repeated, “green go”. Hooray, we love your voice, Courtney!!!!

The next red light we got to she said “green go” but this time there was the sound of agitation in her voice and she unbuckled her seat belt.

This new behavior has continued over time so I bought a cover to go over the buckle.

Oh Courtney, mommy is still smarter.

WRONG!!!!

Courtney figured out how to climb out of the belt.

Almost 3 weeks ago we were driving home from Mackinac Island. We were stuck in horrible traffic. No traffic lights but a lot of brake lights.

“Green go” was shouted over and over again with increased agitation which lead to aggression towards Alyssa which lead to her having an anxiety attack.

Over the years, car rides have usually been on of strategies to calm her down. In fact, we went through many phases where taking her for a car ride is what would get her to sleep.

This new behavior scares me. It puts anyone in the car at risk for being hurt and in return it puts other drivers on the road at risk.

What was a hard pill to swallow was Alyssa saying she didn’t want to go somewhere because it’s scary to go in the car with Courtney. Do I blame her? No.

Fortunately over the last week it has gotten better. We find counting at a red light helps. There are other things we are looking at doing to also help with this since safety in the car is of upmost importance.

Cross your fingers that the 12 hour car ride we have to Connecticut in 2 days goes smoothly!

When my phone rang on my way to get Alyssa and it said our sitter’s name, I immediately thought the worse. Courtney has had enough struggles recently that I automatically think the worse.

On the other end of the phone I heard Courtney’s giggles so felt a little at ease. Our sitter quickly said all is great. She had a question for me though.

Courtney used her talker to say “penguins five slide ice” and the sitter wanted to know what she was asking for.

I knew exactly what that beautiful 4 word question on her device was asking for! “5 Little Penguins Sliding on the ice” video on her iPad!

I quickly bursted with pride. She communicated exactly what she wanted!

“She is not making progress.”

“She is regressing.”

“She is so anxious.”

“Unable to work towards goals.”

“Danger to self and others.”

These are just a few of the things I have heard people say about Courtney this week. These words come from individuals who are meant to support Courtney in her growth and development.

These comments have deeply affected me in various ways. Honestly, it feels like some have given up on her. I don’t place blame on those who made these remarks. Yes, we may be facing challenges. However, observing Courtney navigate through these challenges while others stand aside has left me feeling powerless.

But then, a beautiful moment happened.

Joe and I were leaving to go out for dinner. I said good bye and love you to Alyssa then said good bye and love you to Courtney. As I walked away from Courtney, I suddenly heard “love you” come from her beautiful voice.

It was more than just the words “love you.” It was a powerful reminder that she is flourishing. She is progressing. She is doing everything she needs to do.

We will continue to navigate through these challanges. Some may feel they need to step aside, but her family won’t. And like we have in the past, we will come out stronger on the other side.

Joe sent me an email on night 4 of our vacation with the subject line being “Best Vacation Ever”. At first I thought he was joking and being sarcastic. Wasn’t this vacation hell? Was he on a different one?

He was being honest.

Why did he feel it was the best?

Because we didn’t let autism ruin it. We adapted and we kept persevering. We still had a family vacation. We still did everything we planned to do. Did it look the same as last year? No. Were there smiles? Yes.

I have to say, Joe was definitely the strong one during this trip. I probably would have headed back home by the 2nd day.

I was honest to Joe in my reply back. I was not ready to say best vacation ever. I’m still emotionally recovering from the tough moments. The bruises and scratches are still healing.

But I do agree that we did not let autism ruin our fun and because of that memories were still made. Smiles were still seen. So it was definitely not a bad vacation.

This trip taught us how to divide and conquer. This trip taught us how to adapt on the go. It taught us to be flexible. It taught us that a “great” vacation can still have its challenges while still being fun.

This is not our last vacation. We will persevere. See you next time Mackinac Island!

I’ve never been one who would go see a movie alone or go to a restaurant alone. It always seemed like a lonely thing to do. To make this vacation work, we’ve had to divide on conquer. So one of us has been staying back in the room with Courtney while the other one eats. Then we switch. Typically Alyssa joins me. Not tonight.

We are making memories this trip. We are having fun and there are smiles in pictures to show it.

What I’ve been hiding from the pictures is the scratches, bruises and bite marks we each have on our bodies.

When tonight got tough again, Joe insisted that I take an hour break from the girls and go to dinner on my own.

It was out of my comfort zone but it was needed. I enjoyed my meal. No interruptions. Relaxing. I took time to enjoy both the food, drink and the sites around me.

Thank you, Joe, for not letting me back out.

She’s been asking for the trip for weeks. “Car”, “boat”, “horse”, “walk”. Her way of asking for our annual trip to Mackinac Island.

I wrote a social story, we looked at pictures. We were ready.

Sometimes all the preparation in the world isn’t enough though.

Day 1 of our trip was awful. Sometimes when things are bad, I try to find the positives.

The biggest positive was how awesome the girls were during the drive. I mean AWESOME!!!!

The struggle started getting her on the ferry that takes us to the island. The ferry that she has gone on every year, there and back, since she was 10 months old. As hard as it was, the staff was great. They were calm, they didn’t rush us, they even tried to find ways to accommodate our needs. Thank you to that staff!

Once at the room, things were looking up. We got a room with a bathtub versus one with just a shower. Huge win since Courtney hates showers!

Another win…a wonderful time on the big porch where we ran into our friends that we see here every year.

Dinner in the big dining room. Again, something we’ve done for years. Usually we start off great. Usually we can sit and enjoy at least part of the meal. Not today. Not for even a minute.

Anxiety took over. It took over with all its might. It was stronger than I could fight.

But the anxiety didn’t scare the lady who came up to us as I was trying to get her into the elevator. The lady who said, “how can I help you? I teach children with autism”. Even after Courtney pinched her she continued to calmly find a way to help. In the end, she was the calm person who Alyssa needed at the time.

Anxiety didn’t scare the mom and two daughters away who also offered to help us. They helped get Courtney’s stroller to our room since Courtney refused to take the elevator.

The servers who made sure we all still got our amazing food in our room were even amazing.

While I cried that I wanted the leave, Joe took charge of brainstorming ways we can make meals work the rest of the week.

My parents were a huge positive as they reminded me over phone that I am strong and I always find a way to power through.

Alyssa is probably who powered through the most. She became the protector. She calmed me down, she told me the strategies to use when I was upset. She was the strong one who helped Courtney get her pjs on. She is the one who reminded me that our vacation was not over. It can’t be over.

Today was tough but amongst the struggle, the positive moments still were there and helped us persevere.