Every autism journey is different. This is our story.

Alison and Leah Hamilton

By Alison Hamilton – TACA Maryland Co-coordinator

 

I have a complicated, funny, priceless girl named Leah, who will be 15 this summer. She was diagnosed just before her third birthday, a week after the birth of her sisters, Lauren and Maddie, both neuro-typical. The twins can’t remember a world without autism in it; only recently, when we decided they were old enough to stay behind, have they gotten a taste of life without killing time in waiting rooms.

Leah’s life has been marked by moments of both joy and stress. I haven’t found anything that ties my insides in knots as completely as an unexplained meltdown. Leah’s weapons include tears, shouting, turning favorite things into projectiles, and even self-injury. A meltdown can be one event that lasts an hour or several, or a series of outbursts spanning days. Leah’s early years were marked by a lot of them, accompanied by plenty of angst and feelings of helplessness, and one thought, never far from the surface: How can we make this stop?

Almost a dozen years in, we’re savvier parents who anticipate and solve problems more effectively. Treating underlying medical issues, including celiac disease and mitochondrial dysfunction, has also helped to smooth our journey. That’s not to say Leah never gets upset. We’re now subject to teenage crankiness which, while irritating, also feels somewhat typical. Out-of-nowhere disasters have become pretty rare, but when they happen, they can knock us over just as effectively as they did when Leah was three.

I was reminded of this a couple of months ago as the twins and I were hunting for seats in a movie theater on an unexpected day off for the three of us. A call came from Leah’s school.

When your child has autism, you ignore calls from school at your own risk. I took the call, and ended up taking the highway to school, instead of taking Lauren and Maddie to the movies.

Leah had been unusually testy off and on for about a week, at home and school, her temper flaring over requests she usually met without hesitation. That morning, she refused to get off the bus (a first) and spiraled into destructive and self-injurious behavior. The school staff, on most days capable of meeting any challenge, couldn’t stop her from falling apart.

That’s another problem with mega-meltdowns. They’re like tornadoes, absorbing the energy of everyone in their way – parents, siblings, even a building of highly trained professionals.

When Leah’s behavior nosedives completely, something is very wrong, beyond the day-to-day challenges of living life with a developmental disability. Although Leah is verbal, she is not a reliable reporter. I can’t assume something (or even scarier, someone) isn’t hurting her just because she doesn’t mention it, which means she doesn’t just need a parent, she needs a detective. Over the next few days, Leah continued to spiral, and I quizzed school staff, took Leah to two medical providers, and retraced our steps over the previous few weeks, searching for the origin of the crisis.

One of the first places I look when we see any changes – good or bad – is her medication/supplement regimen. I’d already dropped the newest addition when the testiness first surfaced, to rule out side effects. I also looked at other physical symptoms for clues, but didn’t find much. Leah’s arms and legs had been itchy, but with no visible rash. I’d attributed it to dry skin, but I began to wonder whether it indicated an allergic reaction. The only other noticeable symptom was occasional fatigue, but she’s an adolescent with a long bus ride every day, so I couldn’t be sure that meant anything.

Truthfully, I wanted the problem to be medical, something we could treat and move on, because the other possibility — that the crisis originated from the school we’d fought hard to get Leah into — was disturbing. I did ask some pointed (and sometimes tearful) questions of the principal about her interactions with school staff.

I wish I’d taken Leah to see her pediatrician right away. Instead I made do with a walk-in clinic on the day I picked her up at school, since it was already midafternoon. I was trying to stop a nosedive; waiting for the next day felt impossible. I reasoned that anyone could check her for common ailments or signs of the flu. The physician’s assistant found nothing, other than the irritated skin, and agreed with me that it might signal an allergic reaction.

She also suggested a psychiatrist.

Not rolling my eyes when she said it required a lot of effort. I wasn’t surprised; too many medical providers still approach autism as a mental illness they can address with medication, and miss any number of physical problems. My goal is a healthy, pain-free daughter, not one whose meds make her happier about feeling sick.

Our pediatrician helped us find the answer. We are fortunate – she’s thorough and she understands a lot of the medical issues that accompany autism. We agreed to run a throat culture we both thought would be negative (Leah’s throat looked fine), just to eliminate another possibility. We were so sure of ourselves that I didn’t bother to wait for the results. I was a block away when the nurse called me: Strep.

I was thrilled.

When autism is involved, any time a problem has a straightforward explanation, I’m ready to celebrate. Although I’ll admit I also smacked my forehead a few times for not considering strep and not seeing Leah’s doctor right away. Strep makes Leah volatile, but every other time she’d had it, it had appeared with at least one classic sign: a fever, redness in her throat, or an upset stomach.

Most importantly, I was reminded again that detective work can be one of the most important things I do for Leah. And that behind every great meltdown, there is often a medical explanation.

The mega-meltdown ended when we treated the strep. Leah’s back to normal at school, and she’s found her sense of humor again. She’s teasing her sisters, which (believe it or not) is a welcome occurrence in our house.

I still owe them a movie.

Hamilton Family

Photo credits Sarah Keenan www.sarahkeenancreative.com

 

Love my Super hero ALison and Leah MD

Editors Note: During #AutismActionMonth our goal is to provide a variety of Autism Journey stories. Every story is different. Every person living with autism is unique. Our goal is to provide an autism education one family at a time.  ~ Lisa

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