My daughter Indy was born at 34 weeks, and after a traumatic birth, she was admitted to the NICU. I immediately went into hyper-vigilance mode, gathering all of the information, following every direction, and taking whatever steps were needed to help her get healthy. After she was released from the hospital and I was in therapy for postpartum PTSD, my therapist at the time assured me that my daughter was safe and that I didn’t need to be on constant alert anymore. She was wrong, though.
As she developed, Indy was consistently behind on her milestones (even when you factored in her adjusted age as a preemie). By the time she was 1 year old, my husband and I suspected she was on the spectrum. Her outward symptoms were minimal, and if you weren’t specifically looking for them you could easily miss them. Between that and her young age, we were brushed off by pediatricians every time we brought up our concerns. I remember the rage bubbling inside me every time we’d leave an appointment, wondering why no one was listening to us.
It felt like I was screaming into a void, but I knew in my gut that I wasn’t overreacting, so I kept on going until someone would listen to me, refusing to tire out. What I didn’t realize at the time was that this level of persistence wasn’t temporary, or just how much it would set the tone for my entire parenting experience moving forward.
Undeterred, we had Indy evaluated by our state’s early intervention program, but she scored just below the threshold to receive services. As her temper tantrums ramped up and her speech development lagged behind her peers, I took her to a private therapy practice, begging the speech and occupational therapists to take her on as a patient. After they said she didn’t score high enough on their evaluations for them to take her on, I showed up six months later asking them to evaluate her again. It took three tries before they agreed that she could use some help. I was equally validated and infuriated, and even though we got this win, I couldn’t relax because I knew there was still a lot of work ahead of us.
When she was 3, her pediatrician finally agreed she should be evaluated for autism, but by then the victory felt anti-climactic because we were put on a nine-month waiting list to get an appointment with a developmental pediatrician. I felt enraged that we would have to wait nearly another year for Indy to be formally evaluated. By this point, I was so used to constantly advocating for Indy that taking a nine-month break didn’t feel like an option. So, instead of waiting around, my husband and I got to work on getting her a preschool IEP through the public school system.
The IEP process took months and required us to take a lot of time off work, but we successfully got Indy the services she needed. Then, by the time we were finally seen by the developmental pediatrician and she was formally diagnosed with autism, we asked what we should be doing to support her. The doctor looked at us and said, “Nothing, you’ve already done it all. Just keep doing what you’re doing.” I should have felt relieved and reassured, but by then, I was honestly too tired to feel anything.
Now, Indy is 5 years old, and she’s just started kindergarten. In the months leading up to the transition from preschool to elementary school, my husband and I worked with her IEP team to make sure her services would continue, and we took extra steps to get her a private tour of the school, her classroom, and a one-on-one meet and greet with her teachers before the year started. We’re six weeks into the school year, and already I’m just so, so tired.
I had hoped that once Indy was settled, we’d get into a routine and I’d get a chance to catch my breath. But, I’m already just so, so tired. I’ve been fighting for so long, and at this point, an opportunity to relax, let alone a real break, seems like a pipe dream.
I’d be lying if I said I wasn’t envious of parents who don’t have to jump through all of these hoops for their kids. When the weariness builds up, I can’t help but feel a sense of sadness because I’d love nothing more than to be able to sit back and enjoy her childhood a little more. But at this point, it’s like I don’t know how to shut off my constant state of alert.
Still, I consider it a privilege to be Indy’s mom, and no matter how tired I get, I will continue to fight for her for as long as she needs me to. And even when she’s old enough to advocate for herself, I will be right there beside her, amplifying her voice to ensure she’s heard.
Ashley Ziegler is a freelance writer living just outside of Raleigh, NC, with her two young daughters and husband. She’s written across a range of topics throughout her career but especially loves covering all things pregnancy, parenting, lifestyle, advocacy, and maternal health.
