I'm finally ready to talk about my son with autism's epilepsy

This guest blog post is by Lisa Vaillancourt. She is the proud mother of two adult sons. Alex, 22, was diagnosed with autism in 1998 and epilepsy in 2014. Lisa is his daily sidekick, but is fully aware that he’s the one who teaches her every day.

Our son was diagnosed with autism twenty years ago. Before he acquired language, he made noises all day, every day.  When he started to speak around the age of three, a lot of it was echolalia – repetition of things we had read to him or he had seen on a video.  It’s also called scripting. I want to be clear - we NEVER took for granted his spoken words, but let me tell you that his constant repetition of the same words, phrases, and sounds every minute of every day, was overwhelming.

Fast forward to now and Alex’s vocabulary is professorial, his language spontaneous and entertaining.  He also still scripts a lot.  However, this has now become a great source of comfort since he was diagnosed with epilepsy three and a half years ago, because I know that if I hear him talking, he’s not having a seizure.  These days I am so very grateful for echolalia.

In 1998, I knew nothing about autism so I started reading.  In twenty years I’ve studied a LOT. You can’t really read about autism without once in a while coming across the statistic that up to one third of individuals with autism will also eventually be diagnosed with epilepsy. I never dismissed it, but I never dwelled on it, either. To me, epilepsy was scary. REALLY scary.  And, our kid had also had to deal with overwhelming anxiety and Tourette Syndrome.  In my mom mind, there was just no way he would be hit with anything else.

Plus, we felt like we had done our due diligence, getting EEGs for him when he was little.  EEGs plural because, yes, it took three tries to get it done successfully. Anyone who knows anything about autism is well-versed in how tough it is to get our kids to sleep every night, never mind during the day, with probes stuck on his head, and in a clinical setting.  The first try was a total bust, even after keeping my five-year-old up a good part of the night before the test.  On our second try, the technician had literally attached the last probe to his head and he woke up, and he was having NO part of it.

When I insisted to the neurologist that I wanted to try again because I really needed to make sure there were no seizures going on in his little brain, he basically scoffed at me over the phone and said, “He’ll never fall asleep for this.” I took it as a challenge and told him, “Order the test. I’ll keep him up all night if I have to.”  Never underestimate a mom’s determination.  The third test was completed successfully and no seizures were detected. Phew. We really thought our little guy was in the clear.

But, then, fourteen years later - out of nowhere - epilepsy barged into our son’s life.  It was loud. It was bloody. It was horrifying. If I want to put my anxiety into overdrive, I can wonder whether I would have responded as quickly (or even heard Alex at all) if I had been in another room of the house.  I really melt down if I even let my brain imagine what would have happened if we were already at what was supposed to be our afternoon destination that day.

It was the summer of 2014. Alex had been doing so great. He’d graduated from high school the year before, was a volunteer at our local library and his high school library, and cleaned at his dad’s office three days a week. That morning, the next to last day of July, was a low key one with plans to go to a local fair – and go on many rides - in the afternoon.  Alex was upstairs in his room hanging out.  I was on the phone with my older son, Patrick, who was working several towns over.  He needed me to find some customer information on his laptop, and so I had gone upstairs to work at his desk.  Alex’s room is literally five steps away.  In the middle of my conversation with Patrick, I heard a crash in Alex’s room. I also heard Legos falling to the floor. I have learned to wait before immediately asking Alex if he needs help, because he’s very independent and gets mad when he makes a mistake. I thought he had simply dropped one of his new Lego projects.I’m glad I only waited about two seconds because when I called his name, he didn’t answer. I put the phone down, rushed into Alex’s room, and found him unconscious, seizing on the floor. There was blood everywhere from a gash on his head. To say I freaked out is an understatement. I RAN back to the phone and was just screaming and told Patrick to hang up.  I only knew that I needed to call 9-1-1 and could not even relay to poor Patrick what was going on. I will regret that forever because he must have been so frightened for his little brother, not knowing what the heck was happening. 

Thank goodness I have calmed down a lot since that day when faced with a seizure. I also took a first aid course so that I feel more comfortable in any emergency situation. The two weeks following Alex’s tonic-clonic seizure were filled with many tests. I had insisted on a CAT scan at the ER that day which came back clear.  He went on to have an MRI as well as an EEG. We realized she had been the one who had administered Alex’s last EEG almost fifteen years prior! I had been so worried about Alex every second of every day since the seizure and that just brought me so much comfort.I knew he was in good hands.

After all of the testing, we were referred to a neurologist at a major medical center far from our home.  I didn’t care where we had to travel. We needed answers. Two weeks after Alex’s seizure, we were sitting in the doctor’s office and she told us that he had epilepsy, as the EEG had shown irritability on the right side of his brain. I waited until I got to the car before I cried. I HATED that he had epilepsy. I HATED that this young man who tried so hard at everything he did, had to deal with another hurdle in his young life.  However, we WERE glad to have an answer and medication that the doctor was confident would keep him seizure free. Except for the initial period of adjusting to that medicine, Alex did well on it for two years. Because of some of the other limitations Alex faces in his life due to his autism, controlling his epilepsy is truly a family effort.  While he is very articulate and certainly knows how he feels, it is up to us to make sure he gets enough sleep, help him manage his days to lessen his anxiety and keep him safe.

In February of 2017, however, he had another seizure. Patrick was at home that day and was his calm, professional self, speaking with the 911 dispatcher while I got Alex into a safe position, administered his rescue medicine, and held his head so it wouldn’t keep hitting the floor. Unfortunately, four months later another seizure occurred, followed by two more, each one month apart. It was a difficult summer for our guy who loves to swim and bike, because when you have a seizure those activities are put on hold for safety. In fact, since Alex had to go the entire summer without swimming, his doctor had agreed that as long as Dad was in the water with him and I was there as well, that she would allow him to swim underwater in the pool on August 17 which would have been one month after the last seizure.

When he seized on the morning of August 16, the first thing he said to the paramedic when he was coming out of his seizure was, “Oh great. I suppose this means I can’t swim underwater tomorrow!” He held his doctor to the one month swimming allowance, though, and got her to promise that he could swim on September 16.  In fact, he did, and it made him so happy.  The bike riding, however, will have to wait until the spring.  

Alex has now been seizure free since August 2017. Someone asked me if my daily worry for him has lessened at all. It hasn’t.  Seizures are just so unpredictable and sudden. I did ask him recently, though, if the possibility of having one worried him.  He matter-of-factly replied, “Well, no, because I know now that when I get that ‘heavy head’ or ‘abnormal dizziness’ feeling, I should lie down on the floor in a fetal position and I’ll be okay.” 

We truly find it a blessing that with his last seizure, Alex was able to determine that it was coming on and got himself to the couch. When he had his June seizure, he was already on the floor exercising, but all previous seizures had resulted in him falling to the floor.  In August, I was one room away from him and didn’t even see him beeline it into the next room to the couch.  I am amazed that he had the presence of mind and the time to get himself to a safe spot.  A day later, it also provided us the teaching opportunity to discuss an even safer option of immediately lying on the floor on his side if he felt one coming on.  Someone is with him all the time and we have monitors on in our home, so we assured him that he will always have someone who can help him.     

It wasn’t until this year that we felt comfortable enough talking about epilepsy. We had learned to do everything we needed to do for Alex, but just felt that it was private. However, we came to realize that just like educating others about autism has helped people better understand Alex, providing as much information about epilepsy and what his seizures look like can only help keep him safer if others aren’t afraid to help.