My daughter Indy was born at 34 weeks and after a painful labor she was admitted to the NICU. I immediately went into high alert mode, gathering all the information, following every instruction, and taking whatever steps were necessary to help her recover. After she was discharged from the hospital, I was receiving treatment for postpartum PTSD, and my therapist at the time assured me that my daughter was safe and that I no longer needed to be on constant alert. But she was wrong.
As she’s grown, Indy has been behind on her milestones (even if you take into account her adjusted age as a preemie). When she was one year old, my husband and I suspected she had autism spectrum disorder. Her outward symptoms were mild and you could easily miss them if you weren’t specifically looking for them. From then until she was young, every time we raised our concerns, the pediatrician ignored us. I remember every time we left an appointment, I would be filled with anger and wonder why no one listened to us.
It felt like I was screaming into the void, but I knew deep down that I wasn’t overreacting, so I kept going until someone would listen to me, refusing to be exhausted. What I didn’t realize at the time was that this level of persistence wouldn’t be temporary, or how much it would set the tone for my entire parenting experience going forward.
Undeterred, we had Indy evaluated through our state’s early intervention program, but her score was slightly below the threshold for receiving services. As her tantrums grew and her speech development lagged behind her peers, I took her to private therapy clinics and begged the speech and occupational therapists to accept her as a patient. After they said her evaluation scores weren’t high enough to accept her, I showed up six months later and asked them to evaluate her again. It took three attempts before they agreed she needed some help. I was equally recognized and angry, and even though we won this win, I couldn’t relax because I knew we still had a lot of work to do.
When she was three, her pediatrician finally agreed that she should be evaluated for autism, but by then, the victory felt anticlimactic as we were put on a nine-month waiting list for an appointment with a developmental pediatrician. Doctor’s Appointment. I’m outraged that we won’t have a formal evaluation of Indy for nearly another year. By then, I was used to constantly defending Indy, so taking nine months off didn’t seem like an option. So, instead of waiting any longer, my husband and I began working to provide her with a preschool Individualized Education Program through the public school system.
The Individualized Education Plan (IEP) process took months and required us to take significant time off work, but we were successful in getting Indy the services she needed. Then, when we finally saw the developmental pediatrician and she was officially diagnosed with autism, we asked what we should do to support her. The doctor looked at us and said, “Nothing, you’ve already done it.” Keep doing what you’re doing. I should have felt relieved and reassured, but by then I was so tired that I felt nothing.
Now, Indy is 5 years old and has 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 ensure her services could continue, and we took extra steps to give her private tours of the school, classrooms, and opening of school One-on-one meet and greets with teachers before class. It’s been six weeks since school started and I’m very, very tired.
I was hoping after Indy we could get into a routine so I could have a chance to catch my breath. But, I’m so tired. I’ve been struggling for so long that at this point, the thought of a chance to relax, let alone truly rest, seems like a pipe dream.
I’d be lying if I said I didn’t envy parents who don’t have to go through all this trouble for their kids. I can’t help but feel sad as the fatigue mounts, because I love nothing more than being able to sit back and enjoy her childhood a little more. But at this moment, I can’t seem to figure out how to turn off my constant state of alertness.
Nonetheless, I consider it a privilege to be Indy’s mom and no matter how tired I am, I will continue to fight for her as long as she needs me. Even when she is old enough to advocate for herself, I will be there for her, amplifying her voice to make sure her voice is heard.
Ashley Ziegler is a freelance writer who lives outside of Raleigh, North Carolina, with her two young daughters and husband. She has written on a range of topics throughout her career, but particularly enjoys covering all things pregnancy, parenting, lifestyle, advocacy and maternal health.
