“I’m home.”
“Tim and I are up in the playroom,” Heather says.
I set down my briefcase, take off my tie, and head for the stairs. Before I get there, I hear a dull “thud” sound from upstairs. It repeats every few seconds. I walk into the playroom to see my wife, tears streaming down her face, staring sadly at my son, Tim, who is rhythmically banging his head against the wall.
“What’s going on?” I ask.
“He’s been doing this all day,” Heather says, “and I can’t get him to stop.”
I walk over to Tim, kneel down, and put a hand on his tiny shoulder. He stops banging his head against the wall, looks at me, and smiles. He has a big red mark on his forehead, but doesn’t seem at all upset or in pain.
“What’s going on, buddy?” I ask him.
“Daddy, head,” he says and begins pounding his head against the wall again.
“What are we going to do?” I ask Heather. She looks at me through her tears and shakes her head sadly.
“Is it always going to be like this?” she asks. “Is he ok? Does he have hydrocephalus?”
“I don’t know babe,” I say.
“Let’s call the doctor,” she says.
“Who knows when we can get an appointment,” I say.
“Ok, what about Susan?” Heather asks. Susan was Tim’s OT at the time.
“Good idea,” I say, as Heather pulls out her phone.
When Tim was born, Heather and I decided that we were going to be as proactive about Tim’s diagnosis of ACC (read When They Tell You) as we could. We would do research, we would get therapies, we would join support groups, and we would never shy away from getting any information in regards to his health or development, regardless of how unpleasant the information might be. Because Tim was our first child, his growth and development became our baseline for what was typical in children and what was not.
And then we hit a snag. We started to come across issues in development and didn’t know if these issues were typical across all kids, or if these issues stemmed from Tim’s ACC. The problem of not knowing was that we didn’t know what course of action to take. One of the biggest issues we faced early on was Tim’s sleep habits. From about the age of five months onward, Tim, as all babies do, would wake up in the middle of the night, crying. But, unlike stories I’d heard from other parents, where the children could put themselves back to sleep, Tim was never able to return to sleep after he woke up.
Our friends with neurotypical children reassured us that Tim’s sleep would improve, and that soon, we wouldn’t be spending 5-6 hours every night rocking him back to sleep.On the other hand, when we checked in with the ACC support groups that we were members of, most responses indicated that ACC affected sleep rhythms, and that we just needed to get used to the idea that Tim would always struggle to sleep. So, we tried everything we could think of: we changed routines to make bedtime easier, we tried melatonin (under supervision of a pediatrician), we tried different blankets and temperatures and sound machines, and on, and on. Turns out, the ACC groups had it right—sleep was never going to be Tim’s best friend, and it is still something he struggles with today (albeit in a much less drastic fashion).
Another example of “is it typical behavior for a child?” raised its head when Tim was about fifteen months old. Between having ACC and hypotonia, Tim struggles with sensory issues—in particular, getting enough sensory input to allow him to process the world around him. Seeking this sensory input, Tim discovered that banging his head against the wall was a great source of input—it had a calming effect on him. But, there he was, banging his head against the wall for minutes at a time. We didn’t want to stop him from getting sensory input (if that’s what was happening), but we wanted to make sure he wasn’t banging his head against the wall for other reasons. And so, we reached out again to parent groups that we were part of, as well as the ACC groups we were part of. We consulted with Tim’s OT (read The Right Therapist), and she informed us that Tim’s behavior was outside of “typical” behavior for children his age. She worked with us to create a plan to get Tim the sensory input that he needed in ways that weren’t so visually distressing.
Now that Tim is six, and we like to consider ourselves as somewhat experienced in parenting young children, my wife helps run several online support groups for families who deal with ACC. While she is not a medical expert, her time learning about and advocating for ACC has given her enough knowledge to steer parents towards available resources. Most often, she spends time helping families who have received the diagnosis of ACC while the baby is still in utero, and helps support them as they come to terms with this difficult news. Heather also spends a lot of time answering the same kinds of questions that we struggled with: “Is this behavior typical? Is this delay ACC related? When can we expect to see this or that milestone?” From her experience when Tim was a baby, Heather has learned not to coach parents toward “typical or non-typical mindsets”, but instead coaches them to know their children, and when they are concerned, consult the appropriate specialist, even if it seems like it might be “silly” or “a waste of the specialist’s time”.
I’ve learned many things from watching Heather become a guide down the path that is ACC. The biggest lesson I’ve learned is that having the emotional support of others is tremendously valuable, especially because those same people likely have a thorough understanding of what is “typical” and what is not when it comes to special needs. I have learned that you will never stop worrying about your child, and you will probably always wonder if the current hurdle is typical or needs special attention. But in the end, just remember that your child is your baseline, and in that way, everything you experience is typical.
As the proud father of three children, as well as an MFA graduate and published author, John spends most of his time trying to balance the demands of being a writer and a parent all at once. Most of the time, it’s an uphill battle. As the parent of a child with special needs, John tries to use his talent for writing to bring inspiration and hope to his readers.
For more information about John Will you can visit his website at the Writing Dad, Here and Facebook page Here.
Cover Photo: Michael Wolf