After more than a decade of trying to explain her son’s behavior, Rachel Nemhauser had come up with her own diagnosis. He was unique. He had “Nate syndrome.”Rachel Nemhauser
As Rachel told Dearly, their family struggled for years, searching for an explanation for the issues that have affected their 13-year-old since he was a baby:
“Nate has been significantly impacted by a developmental disability and ADHD since he was an infant. He’s very limited verbally, has severe learning challenges, and significantly difficult behavior.
In a blog entry on her site Nemhouse, Rachel described the years she spent going to doctors:
And thus began the very long and expensive quest to find a name, an explanation, a reason, for why Nate was the way he was. We had doctors visits, neurodevelopmental evaluations, brain scans, genetic screenings, blood tests, more doctors appointments, medical consultations and more doctors appointments.
And after all of the tests, the answer came back: nothing. Rachel wrote:
We found out … nothing. Hours of appointments, tests, and conversations, and the overwhelming consensus was that there was no explanation for why Nate was the way he was. He’s too socially connected to be autistic. His genes look normal.
And so, Rachel resigned herself to never having a diagnosis for her son. She accepted he was unique, and she looked at the bright side: Nate would be treated as an individual, not a disability.
But then came the day when he swallowed a button battery at school.
As Rachel wrote on her blog, in April, then-12-year-old Nate was left unsupervised for a few minutes. In that time, he managed to fish the button battery out of an electric timer and swallowed it “like a shiny piece of acid-filled candy.” She wrote:
Like so many times before, he was being silly and unpredictable. Stirring up trouble and keeping things interesting. Pulling a Nate, if you will. This time was different though, because this time he ended up in the emergency room.
A trip to the hospital confirmed Nate had a battery in his digestive tract. Luckily, a follow-up X-ray found the battery had passed through without doing any harm. Even better was the fact that Nate’s impulsive and dangerous behavior prompted an urgent referral to a specialist.
As Rachel told Dearly, she was concerned Nate’s behaviors were getting worse. The battery incident confirmed her fears, but it also helped her get the referral she wanted:
The same day he swallowed the battery he had a previously scheduled appointment with his psychiatrist later in the afternoon. I expressed to the doctor at that appointment my belief that Nate’s behaviors were escalating and becoming more dangerous, and that he really needed more help than he was getting. I wasn’t pushing for a diagnosis or anything like that, but just advocating for therapy to help his behaviors.
Of course, this plunged Rachel back into the world of forms and waiting lists. And worst of all, watching her son display his worst side to a woman taking notes on their family. The April referral didn’t turn into a meeting with a behavioral specialist until September. Then came the evaluation:
Showcasing Nate’s worst behaviors to a beautifully dressed stranger furiously jotting down notes in my living room felt a little like the nightmare you have when you walk into a crowded room and realize you have no pants on. I felt exposed, embarrassed and judged. […] I sat through the assessment wanting desperately for Nate to keep his composure, but also weak with relief that someone was seeing, really seeing, how much help he needed.
All of that uncertainty fell away when the specialist solved the mystery Rachel had nearly given up on. Nate might not be a standard case, but he fit all the requirements for an autism diagnosis. All of a sudden, there was a path forward, and the therapist was ready to help their family. Rachel wrote:
[S]he said that with intensive therapy and the right therapist, we could expect things to get much better. She dropped hope on me like a bomb, and it had been so long that it took me a few minutes to even recognize it.
Accepting that Nate is autistic wasn’t difficult for Rachel — although it did mean adjusting to a different outlook. The hardest part might have been letting go of the benefits that came with no diagnosis, especially the way it emphasized Nate’s individuality.
Still, Rachel couldn’t deny how the diagnosis changed her. And she has a near-disaster with a battery to thank for it. She wrote:
In April Nate swallowed a battery, and six months later I find myself armed with a new diagnosis, a more than modest dose of hope, and a renewed passion for helping Nate live the happiest, safest, most self-determined life he can live.
And that makes her happy to forgive the school for leaving him unsupervised. She’s even grateful for the battery:
[S]alvation takes surprising forms. This time it was a shiny piece of metal no bigger than a thumbnail.
Rachel hopes other parents in the same situation understand that a diagnosis can be helpful, but it can’t be allowed to limit your child. She told Dearly:
A diagnosis doesn’t define your son or daughter. It can be a useful tool to get more help or more understanding from the people around you, but as a parent you know your child better than anyone. Putting a name to their condition will never change that.
On the other hand, if you don’t have a diagnosis for your child, find the benefit in that too. Challenge the world to see the uniqueness in him or her without a diagnosis to create incorrect assumptions. Be inspired by his unlimited potential, and find joy in his utter uniqueness.
The most important thing, however, is to remember that parents need to speak for their children and trust their instincts. As Rachel told Dearly: “You are your child’s biggest advocate. Trust your gut when more help is needed, and keep asking until you get it.”