Jumping Into the Rabbit Hole

It was 2016 and we were feeling pretty good about things. The psychiatrist recommended an occupational therapist to use as a way to address our son’s up tick in outbursts. Within the last year the explosive tantrums were not occurring with the same frequency (yay), but when they did, they were fierce (nay).

And when they were fierce there were times I would get sad and sink into what I call the rabbit hole.

I would feel sorry for myself and lament that other families did not have to deal with this. I would allow myself 20 minutes in that hole. I personally think it’s OK and therapeutic. But, more than 20 minutes can get you lost in that darkness.

So that is my rule….20 minutes. (Grumpiness is not the same thing as the rabbit hole by the way)

After a full private OT evaluation we learned that our son’s internal make up was in total distress and his outbursts resulted from the chaos occurring inside his little body. We spoke with the occupational therapist, laid out a plan, began therapy and we immediately saw a difference in our boy. He was less anxious, more regulated and his moods were paced.

Sure, we would see a slight outburst, but each one came on less abruptly and we could talk him off the cliff…most times. So, we added another therapy to our weekly schedule (during intense periods these appointments are five days a week) and prayed that we would continue to see improvements. A huge sigh of relief…

Then I received a call one morning. Late morning. Daniel had a seizure. The news was so out of the spectrum of what I thought it could be that I just went into autopilot and drove to the school.

Our boy was still on the ground in his ninja costume when I arrived. Medics were around him as I approached. He was disoriented and confused. I knelt beside him and well…he started hitting me….a lot.

In addition to being scared, he saw me and believed that he would not be able to participate in the Halloween parade. That made him mad.

So, boarding the ambulance was great. Spending four hours in a hospital that did not provide pediatric care was better. Taking a second ambulance to Children’s Hospital was amazing. And waiting for a neurologist to tell us nothing was awesome.

We got to do it again when the second seizure occurred a week later. And the next one a couple days later until we were hitting five seizures a day. That was the start of our journey with epilepsy.

We are now eighteen months in and we are grateful to be seizure free for 30 days. We had a lot of appointments, EEGs, and an overnight stay in the hospital. We changed neurologists, and we were assigned a nurse to accompany our son to school. A lot of logistics, a lot of ups and downs.

Admittedly, I visited the rabbit hole…once or twice…maybe more. And that’s OK. We are on our sixth seizure medication and this one seems to be doing the trick. For now.

Behavior…check. Epilepsy…check. A huge sigh of relief….

And then it was onto the next thing.

It began with him not wanting to eat cheese, then yogurt. Both were staples in his diet, but we figured kids can become picky and decide to not like things – autism or not. Soon it was hot dogs, then pizza, chicken fingers and raisins. Dinners were spent crying or following our boy to the bathroom as he was gagging.

Finally, we were left with only four foods that did not prompt a negative reaction – waffles, rice, strawberries and Cheerios. It all happened so quickly. We interviewed sites for food therapy and decided on a program that would work for our son and our family.

So, we added five more therapies per week to our schedule. I felt defeated again and overwhelmed and it prompted a visit to the rabbit hole quite unexpectedly. I felt bad for me, for our family but most especially for our boy, who has to overcome ANOTHER obstacle.

Like really? When will it end? And I realized that it won’t. This is what a disability is…

Disabilities are permanent and challenges will occur unexpectedly and often. There will always be issues for our boy and once we tackle one, another will one will pop up. Truly recognizing and absorbing that reality for the first time was sad.

I think I am pretty late in the game to realize all this, but there is a huge learning curve with this autism thing.

So, that old rabbit hole got its 20 minutes early on this time so I could move on and help our boy tackle this new issue.

But, in full disclosure, I reserve the right to be grumpy…on occasion.

Written by, Kelly Colvin

Kelly is the mom of two fabulous children, one of whom is learning to adapt to life with autism and epilepsy. Kelly has extensive experience in the public, private and advocacy sectors in education that includes the U.S. Department of Education as well as the school districts of Philadelphia and Upper Darby.  Professional as well as community work has led to established relationships with municipal, state and federal government leaders. You can follow her blog and learn more by visiting her website at SpecEd.

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