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.
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.
I love hearing her talk. I love that she can express her desires. I love the sound of her voice. But the words “gray pants” have become the most frustrating phrase I hear repeatedly throughout the day.
When she mentions “gray pants,” she’s referring to my comfy gray sweatpants that I usually change into at the end of the day. (No need to worry, I have a few pairs, so it’s not the same one every night.) But these pants are more than just that…
They symbolize that Mom is home for the day. They signify that Mom won’t be stepping out of the house. They indicate that Mom will be by her side constantly.
As soon as I step inside the house, “gray pants” is the first thing she says, and she keeps saying it until I put them on. She even hides any other clothes I lay out for the next day, including my workout gear. In the morning, it’s the first thing she mentions when I wake up. These pants, once so comfortable, now feel like a burden because they’ve become a symbol of intense separation anxiety.
Both my girls have faced separation anxiety at different times. Since I am a working mom and both girls are in therapies and other activities, they’ve learned that there are moments when mommy can’t be right there with them. However, over the past year, Courtney’s separation anxiety has worsened significantly, making it a challenging phase for us to navigate.
In the midst of this challenging phase of heightened separation anxiety, I hold on to the hope that with time, patience, and understanding, we will find our way through. As a mom, I will continue to reassure Courtney, provide her with love and support, and work towards helping her navigate her emotions. While “gray pants” may currently symbolize this struggle, I believe that eventually, they will represent a journey of growth and resilience. Until then, I should go put on my gray pants before she gets home.
A year ago today we sat around a table with Courtney’s team hoping we could find a way to convince them not to move her to a new school. We were devastated when we learned it just wasn’t possible to keep her at that school. But they were optimistic and felt Courtney would do fine with the change and thrive. Here we are 1 year later. Fighting for Courtney again. No, she didn’t do fine with the change. In fact, it has been her hardest year yet. Did I not fight hard enough? What if she didn’t move? What’s going to happen next? What is best for her now? Courtney, you are my world and I will keep being your voice in the loudest way possible.
We had Courtney’s IEP meeting this week. One of my hardest meetings as a mom of a special needs child. So much data was shared. Data that shows aggression, data that shows regression, data that shows a girl who needs nothing more than love, guidance and consistency.
The meeting went as expected. The recommendation that we expected was made. Outplacement.
My head and heart are both sad and confused. I wish I knew the right answer. All we have wanted is her to finally have some continuity in her education and this was supposed to be the year for that. Apparently that is not the case.
I’m sad that we are at this point.
I’m sad that her home district failed her.
I’m sad that no matter how much I advocated for her I couldn’t get her what she needed.
The advocating doesn’t stop here though. We will not stop until we know she is getting the education she deserves.
Oh Courtney, if only you could tell us. If only you could tell us what to advocate for. If only we knew your thoughts.
Are you happy at this school?
Are they meeting your needs?
Should we fight for you to stay?
I know as your mom, I’m supposed to know what’s best for you, but I’m at a loss.
I’ve been asked what my gut feels. In all honesty, Courtney, I don’t know.
I’ve watched you struggle.
I see the bruises on your arms.
I see the scars on my body.
I’ve seen the data and I’ve heard the concerns.
But, Courtney, I wish you could tell me. Because later this week, when we meet with your team and we get to the part of the meeting where they are going to bring up placement considerations, where they are going to tell us what they think is best. I want to know that we are fighting for what you want.
I had full intention to post something about our autism every day during this autism awareness and acceptance month, but as always, things have been a little crazy. I did want to make sure I did one more post before this month ended since I feel no better time to share this than now.
Over the last few years, Alyssa has had struggles with emotional regulation due to sensory issues and anxiety. We have seen therapists, gone for official medical diagnosis and more. She has been given the diagnosis of Attention Deficit Disorder with Hyperactivity (ADHD), Anxiety (GAD), Sensory Processing Disorder (SPD), Executive Functioning Disorder (EFD), Oppositional Defiance Disorder (ODD)…so many acronyms that it became just that to me. Just acronyms. None of which were fully sitting right with Joe and me or even some of the therapists that work with Alyssa. I kinda just went with it though because honestly, this year has been better than previous years and she was getting the outside support that I felt she needed. In the end, does the label really matter as long as the support is being given?
It wasn’t until a few issues occurred at school and then two amazing people on “Team Cranston” started to speak up on Alyssa’s behalf by sharing with me that something wasn’t adding up with her most recent evaluation. So we decided to dig a little deeper.
The digging deeper lead us to having the recent evaluation re-looked at. The practice we used for the evaluation agreed further testing was warranted (I won’t go into the whole story of why). They did some additional testing and scales and sure enough, this little feeling that I have had in my gut for a few years now was finally validated. Someone finally said what I have been thinking.
As I have shared over the years, Autism Spectrum Disorder is exactly that…A SPECTRUM. No two children with autism look the same. Even siblings can be on two completely different sides of the spectrum. How can I say this with such certainty? I am a mother of two children with Autism Spectrum Disorder. One considered Level 3 (servere, low functioning, whatever you want to call it) and one considered Level 1 (high functioning, lower needs, aspergers, whatever you want to call it).
There you have it.
This is OUR Autism! It’s not easy, it’s messy, it’s exhausting, it’s also beautiful and I love it (well at least most of the time).
As Autism Awareness and Acceptance month comes to an end, please remember it’s not the end for many parents. It’s not just a month. It’s everyday. So let’s spread acceptance and awareness everyday!
April is autism awareness and acceptance month. Through out this month I will share different parts of this journey. To kick off the month, it’s only right for me to start from the beginning.
For any new followers, my husband and I have two beautiful girls. Courtney is 10 years old and has autism. Alyssa is 8 years old and has anxiety, ADHD and sensory issues and severe food allergies. Unlike many, autism was a part of my life way before my daughter was diagnosed with it. I started working with children with autism when I was in college. A few of these kiddos is why I decided to get a masters on special education. I became determined to learn everything I could about autism.
After 10 years of teaching preschoolers with autism, my oldest daughter (at that point 2 years old) was diagnosed with autism. I remember the beginning of the school year after she was diagnosed, standing in the front of a room full of parents who were about to entrust me with their children. For the first time in my teaching career I could completely relate to how they were feeling. I debated on if I wanted to share my story but as I looked at these parents, I knew I needed to tell them that I get it. I needed to tell them that I too was about to leave my daughter who couldn’t talk, who had no way to express her basic wants and needs in the hands of a complete stranger. I needed to tell them that I’m feeling all the same emotions.
Here i am over 8 years later. Still teaching preschoolers with autism while raising my beautiful girls. Autism has taken us on quite the journey. It’s been a rollercoaster for sure. There have been good days and bad days. There has been laughter and tears. It’s a little wild at times.
Come join me for the month as I share more about this crazy journey.
I was having a moment where I was hating autism. I was looking at the scratches and bruises on my arm from recent moments of frustration Courtney has had.
I was thinking about a bad meltdown Alyssa had yesterday.
I wanted to turn in my parenting card because obviously, I’m doing something wrong.
But then Courtney said, “Do” when driving home from a family party. I knew what she wanted. I turned on the Sound of Music Soundtrack and turned on “Do Re Mi”.
I smiled as I listened to Alyssa sing along to that song and the 2 songs following it.
I smiled as I heard little sounds coming from Courtney that sound like she is trying to sing along.
Sound of Music, my absolute favorite musical. (I won’t go in to the embarrassing story of when I was little and this musical became my favorite.) listening to their joy as the songs played brought a smile to my face. Maybe I don’t need to turn on my parenting card. Maybe, just maybe, I must be doing something right.I
Or as it is said in the musical, “I must have done something good.”
These are the demands I get from Courtney whenever I’m in the house.
This attire means I’m home for the night.
This attire means she’s home for the night.
This attire gives her comfort.
It was cute at the beginning that she would make these requests as soon as I stepped in the house. I would laugh. Some people get greeted by a hello, I get greeted by demands on what to wear.
But now it feels controlling. Almost suffocating. It’s a huge reminder that her separation anxiety is out of control. It’s a reminder that she doesn’t like leaving the house. It’s a reminder of the difficult stage we are in.
Autism: A Little Wild 