How is it possible that I am still awake? I have knots in my stomach and a flutter in my chest. I think I’ve played out every worst-case scenario for Sienna’s future. I don’t know when it happened. When did I start spending so much time being anxious? I think it all began with school.
Sienna began preschool this fall. It’s a difficult transition for all parents. We have to learn to let go of our kids. As a mom of a child with special needs, I have found it more challenging this time around. We enrolled Sienna in a program called gentle separation. She struggles with detaching herself from me, so this seemed like a natural fit. I could be in the classroom until she gained her independence. I decided to start her out in the two-year-old program, because developmentally, she aligns with these children more.
Since school began, I find myself waking up in the middle of the night over and over. I wrestle with the fact that time is passing and no matter how hard I try, I can’t stop it. When Sienna began school, the bubble we’d been living in popped. I quickly realized that I’d been sheltering myself from reality. When forced to see her side by side with other children on a daily basis, the reality of her development hit me like a 2×4. I had to observe her side by side with peers much younger than her. I watched as they physically and developmentally did things with ease. I watched as her entire class walked to the playground and she fell behind. Her teacher was always by her side. But the visual image of children soaring past her while she slowly walked down the long hallway is one I play over and over in my mind. It’s a metaphor for this stage we find ourselves in. It’s the stage where the differences in her development between herself and her neuro-typical peers become glaring. There is no hiding from reality anymore.
Let’s start with the positives of the process. The gentle separation program involves a series of steps. The parents and I spend our time in the hallway and library. We are present in case our children have separation anxiety. This time also allows us to share parenting challenges with each other. It’s opened the doors to meaningful conversations. I was able to explain Sienna’s challenges. Every single parent in this classroom is welcoming and inclusive. I worried the parents might think Sienna was dominating the teacher’s attention. I couldn’t have been more wrong. This has been a nice surprise.
The biggest challenge involves the fulfillment of Sienna’s IEP. I never anticipated challenges this early on. I had heard the horror stories, but up until this point, we’ve had all positive experiences with therapists. Here is what I’ve learned. They don’t always show up. They don’t always tell you they aren’t going to show up. They don’t come at the time you’ve scheduled. They don’t communicate with me. They communicate with the school. Had I not been in the school, I might not have been able to confront them and demand they fulfill her plan in the way she deserves. There are points during the day when Sienna needs assistance -the physical demands of recess and during times of transition. This is why they’re scheduled at specific times. In my opinion, they view Sienna as a box they have to check off their list. This has led to many worries about her future. I cannot explain how much this wakes me up at night. What if she can’t communicate her needs in kindergarten? I opened up to other parents in the different abilities community during Special Olympics, and what I learned is this problem is all too common. A father shared a story about his son being placed in the special education classroom too often and the school did not communicate that. He was made aware because he knew someone inside the school.
It’s just another part of this journey that is new and scary. It’s a fear most parents don’t face. I am hands-on in every single therapy session. It’s always been that way. I am still able to play that role in outpatient therapies, but at some point we will need to rely solely on the school system. As I learn more, I realize the aides and therapists are underpaid and overworked. My plan is a charter school for Sienna, but it’s an extremely competitive lottery system, so there are no guarantees. When the walls of her nursery school are no longer there to protect myself and her, what will it look like? It’s terrifying and it’s out of my control.
This week, I left school. I went to two hot yoga classes. That’s my plan. I am fitting in self care to help direct my frustration and anger about my lack of control. Sienna’s transition has been seamless. She hasn’t asked for me once. The teachers share stories of her holding hands with friends. The kids love her and each other. This is a wonderful time in her education. For now, I can relax and celebrate the fact that inclusion does work. I can celebrate that there are parents that value it. But in the middle of the night, when I wake up, the future looms and my lack of control suffocates my rest. The image of Sienna falling behind in the hallway plays over and over in my mind.