As I sit down to write this, I notice myself getting into avoidance activities. I scroll through my phone, sit and stare off… pretty much anything to avoid reliving the emotions of the past year. It’s amazing how quickly those feelings come back to our bodies. Like they’ve been living there for months undetected. “Unpacking” all those experiences, thoughts, fears and feelings is literally the last thing I feel like doing today, but I also worry that each day passing they will continue to fade before I can accurately pour them out of me. So here we go.
In January of 2019 my oldest son Gavin started having a hard time in school, really it had started a long before that, but we had no idea. Let’s do a quick catch up for those who are new around here.
- 18 months old Gavin started in clinical Speech and Occupational Therapy for delays. He wasn’t talking at this point.
- 3 years old his case was turned over to the school district for services. He was barely stringing 2 words together and began special day preschool.
- 5 Years old placed in a “typical” TK class with a 1:1 aide
- 6 Years old placed in a “self contained” special needs class for K-2nd grade.
- 8 Years old started in General Education class when we moved to Arizona
- Hadn’t received an official diagnosis at this point.
When we moved here to Arizona it felt like a welcome change, a place where we could all have a fresh start. Gavin was transitioning into General Education from a self contained special needs classroom back in California. Everything was going great… until it wasn’t.
Before we get into details, I wanted try and explain the very real and very physical feelings of raising a special needs child. The beach seemed to be the most universal setting, so I’m going to ask that you walk through this with me in your mind.
It’s like standing at the edge of the ocean and having the stability of the sand suddenly slip out from under you, forcing you into the crashing waves. Your only choice is to try your best to wade slowing into the chaotic waters, knowing that the safety you once knew is a place that no longer even exists.
You do your best to take it step by step, getting your footing steady before each step forward. Just when you feel like you can handle the force of the waves coming your way, a tidal wave crashes over you out of nowhere and sends you under the churning waters before you can even catch a breath.
Panic sets in as you try to navigate this underwater world where you can’t tell if you’re swimming deeper into nothingness or if you’re just one more arms reach to the surface and access to life saving oxygen. The moment you think you’ve recognized the sun peeking through the murky water another one hits spinning you into complete and utter disorientation.
So you start the process all over again, but this time you feel so out of breath you wonder if you will make it to the surface before you lose all hope. This is exactly what every phone call from school, every meltdown, basically every moment felt like in 2019.
From January to August of 2019 I lived in a constant state of panic every time the phone rang. I couldn’t be farther than 15 minutes from the school or my heart would start to race and my breath would begin to escape me. It was like I was always trying to get my face above the surface of the water long enough to catch a breath, but every email, every phone call, every meeting would pull me back under and toss me into the darkness.
I remember one instance very clearly. I was sitting in my office which opens to the kitchen where my husband was standing. The kids’ school showed up on the caller ID of my cell phone and I knew it couldn’t be good. The principal told me that I needed to come get my son because he had thrown a desk and ran through the hallway tearing papers off the walls, screaming curse words. She said that he would need to stay at home the following day as a suspension and we should talk about what would happen the “next time”. Then she went on about a disciplinary school and I kind of stopped listening.
All I could do was say okay and try to get off the phone as quick as possible.
I began to sob uncontrollably. Not the voiceless cry where you can’t catch your breath, but the one where you wail in emotional and physical anguish. I just collapsed into Lennie’s arms as he came over to me. I am a do-er and a fix-er so I had been trying my best to just manage it all myself. I didn’t really share all the details of what had been going on. He knew the gist of it and the emotional toll it had been taking, but this was the first time he really saw the raw pain it was causing me.
I had never felt more lost or alone in my life than I did in that moment. I felt like no one was willing to look outside the box that they thought my son should fit in. They basically threw up their hands and said we’ve done all we can do. We will continue to suspend him for his behavior (and ultimately expel him) or you can move him to a special needs class. It was at that point that I chose to stop feeling sorry and defeated and lost and decided to take back my power.
One of life’s undeniable truths is that “Knowledge is Power”. The reason I felt helpless and powerless is because I simply did not know. I didn’t know the laws, I didn’t know the state, I didn’t know our rights, I didn’t know the other placement options, I didn’t know the process. So I got to work.
… to be continued.