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.

Oh Courtney, if only you could tell us.

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.”

Here I sit…

“gray pants”

“shirt”

“socks off”

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.

So here I sit.

Just as she demands.

Gray pants.

Shirt.

Socks off.

I’m struggling with blogging lately. I’m struggling finding the words that explain what has been going on lately. I’m struggling finding the words that explain how I feel.

Part of it is because so much of what is going on is not my story to share. Part of it is because some of it is so deeply personal. Part of it is because I just can’t find the words.

I hate that blogging is a struggle because it is usually my outlet. It’s usually my way of dealing with the stress. But right now…I can’t find the words.

January and February were so hard. Actually, they were traumatic. I welcomed March with open arms even though it comes with some big changes. But after a meeting with Courtney’s school today, not feeling confident March will be much better.

I’m hoping things calm down soon. I’m hoping things become more manageable. I need things to turn around.

In the meantime, I’ll just remind myself that sometimes it’s ok not to be ok.

Courtney actually doesn’t like swings. Why? Because she doesn’t feel grounded on a swing. This may come as a surprise since she is such a climber, but Courtney hates anything that involves her feet not being grounded. You feet are still “grounded” when climbing.

She didn’t like aqua therapy when little because she couldn’t touch the bottom. Couldn’t even hold her in the pool.

She struggled with horse therapy because her feet were dangling.

She’s always had an interest in swings though. You could tell she was intrigued. As she grew taller she would sit on a swing as long as her feet could touch the ground.

Since we could tell there was an interest, her therapists made it a goal for her to tolerate swings. We made it a goal because that vestibular motion is so regulating for her.

I’m loving watching the progress. She’s even exploring the new swing the girls got from Santa!

Oh girls, some days are just hard. Sometimes… very hard.

So hard that sometimes I end up not being the best mommy I could be.

So hard that you even notice that mommy has hit her limit.

I need you to know though.

That on the hardest of moments, the hardest of days, i still love you with all my heart.

Friday we had an IEP meeting for Courtney. It wasn’t her annual meeting. This was a meeting mutually called by both her school team and Joe and me. We all decided it was time to meet as a team to discuss what we can do to help turn things around.

Unfortunately there isn’t an overnight fix to the phase we are in right now. I’m not expecting one.

I also wasn’t expecting the emotions I felt when sitting at the table and seeing all who support Courtney gather together. Since we have seen an increase in behaviors across all settings I also made sure as much of her home team was involved in this discussion too. This included her BCBA, her private speech therapist, Savannah and our advocate. 12 people in one room (this does not include all the private therapists and para professionals that support her). 12 people who had one goal. Helping Courtney make progress in the safest way possible. I was so moved.

Joe and I did not want her to change schools going into this year in fear of exactly what is happening. We have had many moments lately where we have felt angry as hell that the district put her in this spot. But this meeting told us something. Her new team loves her and will do everything in their power to make sure things turn around.

I wish there was an overnight fix. BUT…there is a plan. In the meantime we are comforted knowing she has quite the team helping to support her along the way.