Implications on Me
As it was nearing my son’s first birthday, his teacher and trusted caregiver at his day school handed us the first of many to come, “Ages and Stages,” a form with questions about at what level the child is performing specific tasks. I had never seen this with my typical daughter. She kindly suggested I fill it out and take it with me to my son’s 1-year checkup that would be the next week. A few weeks before handing me that form, she mentioned to me that our son was behind the other children in her kind and never a direct way. Weeks before that she had said the same thing, but I always replied, “he’s on his own schedule, what’s the rush, he will get there.”
That night I started to fill out the form. That was the first time I realized he didn’t meet any of the milestones. A few were, “Sometimes,” but nothing was a “Yes.” I took the paper over to my husband, tears in my eyes, “he doesn’t do any of this. I’m a horrible mother!” My husband didn’t even seem to flinch. It was as if he already knew that I was living in denial.
At the pediatrician, armed with the forms of milestones we weren’t meeting, she didn’t even look at the papers. She calmly told me, as she had every appointment before that, I had a delightful laid-back little guy, but it was time to start pushing him out of his comfort zone. That was the first time I heard the term hypotonia, or maybe it was the first time I registered it.
In my mind, my child was a little laid back, and with the correct supports, we could reach our goals. Great news!
I contacted early childhood intervention services in our state. Having him tested was the first time in my life that I hoped for a failed test. He barely passed the threshold for occupational therapy, meaning he didn’t qualify at that point, and with that, I was nervous he might not be eligible for anything. He didn’t qualify for speech services at the time either, because it was too early developmentally to even know if he had an issue, they would reevaluate at 18 months both of these services. He failed with flying colors for physical therapy services, and they also offered a developmental therapist to add in his “global delays,” as they labeled him. Meaning, he was significantly delayed in more than one aspect of development for his age. I was relieved at the prospect of catching him up to his peers.
The process was slow, but there was progress. It was good to see, while also scary as a mother to watch as he fell farther and farther behind his peers. It reached the point that as I would pick him up for the day, I would have to tune out the room to keep from crying as the other children would scream, “momma,” or, “dadda,” as their parent walked in the room. Mine didn’t even open his mouth to make a sound.
By 18 months, he was now getting Occupational and Speech services as well. I started to feel thrilled that he was able to make progress and had delusions of grandeur with his development. That the added therapists and hours would speed up the momentum, and he would catch his peers any moment. Even though I still believed he would get there when he got there, and I was perfectly happy with that. I wanted more.
One evening, there was a note from one of his therapists. She wanted to speak that night. She asked me how I thought things were going. I told her well. He was beginning to walk, and wow, how huge was that at just shy of 20 months?! But she said something she probably shouldn’t have, but I needed to hear, “I have never met a child, like (your son), who only progressed in one thing at a time and didn’t have something else going on.” It was true. He had taken on the new skill of beginning to walk, but that had been almost two months prior, what had he done since? That next day I called up genetics and told them I did not want to wait anymore. Since he had begun to walk, neurology had scheduled out another six weeks follow up from our last visit for the next week, but we agreed to test at any point. I wanted the testing done that day, and we did.
That following summer, he regressed, losing not only his few ways to communicate with us but also a massive part of his charming personality. He lost the newly gained fine motor skills he had been working so hard on, along with his attention span, and massive amounts of mobility, including the ability to do stairs – which he has still not gained back two years later. Thankful to know why, but horrified that we were living this reality, I saw it all happening in slow motion. As in, I knew exactly what was happening, but I was powerless to stop it.
I wish there was a way to explain to someone the pain of losing a child who is still alive, but even if I could put into words the turmoil that brewed within me for the next weeks, months, and years, I would not do it justice. Since I lost my son that day, I don’t think anyone can even begin to understand the scope at which I fight and blame myself.
Here we are now, at age 4, and I am still dealing with the same sadness, frustration, and remorse as I fill out these kinds of forms. Presently, with a different pediatrician (from our many moves across the country), they handed me the questionnaire directly. I respond, “Not Yet,” over and over. My son does not meet even one milestone with “sometimes,” as he once had. This does not get easier. In previous years at least he might slightly be close where I might have to think about it, but not anymore. At times it doesn’t bother me as much. Others it bothers me more. The day I snapped the photo of the graphic for this post, I felt fortunate to be able to use it to share with others. You aren’t alone. Other parents need to respond “N” over and over too. And somehow we have to go back to our day as if nothing happened.
I blame myself for his syndrome. I went to a fertility specialist, paid the bill, took the medications. I told my husband this was the month we were going to try. I produced the eggs, and I forced the ovulation. So regardless of what any doctor, my husband, or friend has told me since, I blame myself. The only person who is entirely innocent of all of this is my son…That is my pain.