Alyssa: “mom, why are you crying? “Are you ok”

Me: “I’m sad.”

Alyssa: “Why? Are you ok?”

Me: “An email from Courtney’s school made me sad.”

Alyssa: “What did they say?”

Me: “I’m sad because I don’t think they understand Courtney and know how to teach her. I don’t want her to go there anymore”

Alyssa: “I don’t either”

Alyssa then leaves and immediately comes back with her iPad, water, and activity she was working on. She sat on the couch really close to me.

I knew what she was doing. She wanted to be really close to me to make me feel better. She wanted to take my sadness away. My little “almost” 9 year old wanted to make it all better. She wanted to do for me what I can only wish I could do for Courtney.

I think what I’m struggling with the most right now is that as Courtney’s mom, I can’t fix things right now. I can’t find that magic wand and make it all better. The “fix” isn’t easy.

In fact, all I can do is keep sending her to the place that can’t see how amazing she is.

They can’t see that behind those bruises on her wrists from self biting is a girl who loves asking for “big hugs”.

They can’t see that maybe, just maybe the answer isn’t isolating her more. Maybe it’s just loving and caring for her more.

Maybe we made our bed when we decided to get help to fight what we feel is best for her. But we are only doing it because we owe it to her. Because we love her.

I wish that for one moment, her team, her district, would take one minute to sit nice and close to her like Alyssa did with me to just showed her they care.

This shirt game home today. It came home today on a day where she shut down the 5th grade wing because something triggered her and she refused to move.

This shirt came home after a few emails were sent through attorneys on how she is a danger to self and others.

This shirt comes from the school who can’t meet her needs.

This shirt comes from the district who wants to out place her before she finishes the 5th grade.

This shirt means the world to so many families.

To me…this shirt stings.

Maybe I shouldn’t let it sting like it does. it is just a shirt.

Unfortunately, it came home on a day that was rough.

So this shirt caused me a great deal of emotions.

It may be just a shirt. But to me…it’s so much more.

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!