There are things in life that scare me, for instance, clowns. I am completely terrified of them and have been known to hide behind my husband after seeing one. I do not really like spiders that much and would be happier if the centipedes which show up in my bathtub every summer went someplace else. In general, we as humans are scared of the unpredictable and the things which we cannot control. I am not, however, scared of autism. I don’t think autism is scary or a reason for pity. It is not a bug in the system but a different operating system. People, unfortunately, have told me that Boo Bear is “wired wrong”. I take umbrage at such a statement. Boo Bear is not “wired wrong” he is wired differently. As I said, autism is a different operating system, and it is not scary once you get to know it. Familiarity takes away fear. So, besides clowns with funny face paint and multi legged insects in my bathtub, what does scare me? Easy, epilepsy.
Epilepsy crashed into our lives with a phone call last February from Ravi’s teacher. He had had a two minute clonic tonic seizure and had stopped breathing. As she spoke, he was en route to the ER. A nurse at the ER told me that I now was experiencing a “new normal”. Even if I always slept with one ear open, I would do so even more now. She was correct. Over the past 10 months we are lucky to have had only a handful of seizures. The space in between them is sometimes long enough to lull me into a sense of partial complacency. Maybe we had Boo Bear on the right drug, maybe the cannabis really was the magic bullet, maybe the seizures were just a fluke of adolescence. Or, maybe not. In the last three weeks he has had two seizures. These two seizure seemingly came out of nowhere. The unknown is scary. Seizures are scary.
Christmas dinner was a quiet affair. It was just the immediate family and a dear friend. Boo Bear is not one to sit at the table, so he was happy to flit back and forth between the table and his room, snitching bits of food as he went. At one point, he came back in and sat down for a brief nibble. Suddenly, he leaned over from his chair and put his head in my lap. He was quiet for a moment, then let out a deep guttural groan and began convulsing. His lips turned a vivid shade of purple as all the color seeped from his face. I lowered him onto the floor, turned him on his side and did a finger sweep of his mouth to get rid of any food. Robert and I were both holding his head and talking to him in low tones. His face turned blue and I could not tell if he had aspirated. I grabbed my phone and dialed 911. Fortunately, we live five blocks from the fire station and paramedics were on hand within three or four minutes. By that time the convulsions had ceased and he was breathing again. We moved him into his bedroom and the EMTs checked him over. His oxygen saturation was normal as were his blood sugar levels. The EMTs left, telling us to call back if anything else happened. Outside his bedroom life was returning to normal. Myra was engaging Mouse in a game of Scrabble. The dogs quieted down. The hedgehogs returned to their slumbers. In his bed, Boo was breathing deeply but rhythmically. He was soundly asleep but a smile would play across his lips as I help his hand and whispered his name in his ear. Fear had retreated from the room.
Seizures have been around since the dawn of man. Reports of demonic possession in the Bible were probably accounts of seizures. Throughout history, epileptics have been seen as everything from mystics and holy people to those who have been touched by the devil. Now we know that seizures are an electrical storm in the brain. A very tiring electrical storm. As Boo Bear was sleeping after the last round, I commented to the EMT that he would probably need to sleep at least eight hours to reset his brain. The paramedic agreed. He said that Boo Bear was as tired as if he had run ten marathons back to back. The best thing for him was sleep, and sleep he did. He woke up ten hours later, incredibly thirsty, ravenously hungry and with a very noticeable tremor in his right hand which went away as the day progressed.
So, things that are scary and things that are not. We fear what we cannot control and what we cannot predict. Autism is not scary. Autism is not always noticeable, either. You may be surrounded by people on the spectrum and not know it, as many autistics are very adept at masking their symptoms. Epilepsy is a different story. One cannot mask epilepsy or control it. I can make sure that Boo Bear eats the right foods, takes his meds and gets enough sleep. To a degree I can control his environment. When I do these things, the fear recedes. But, lurking beneath this calm veneer is the epilepsy, popping up occasionally to show me that I am really not in control at all.
Boo Bear, if I had a magic wand I would not take away your autism because there is no place where a part of you ends and the autism begins. The fact that you are autistic brings me no fear. But, you are also epileptic and that does scare me. I would wave my magic wand in a heartbeat it I could chase this demon from your neurology. But, I lost my magic wand in Diagon Alley. Maybe someday science will find the right drug to help you. In the meantime, I will catch you when you fall, hold you as you convulse, tell you that I will always love you as you come out the other end of another seizure. I will hold your hand when he sleep and sing to you the old, familiar lullabies. And, in the morning when you wake up, we will face the day together.
Harriet's Hedgehogs and Autism Advocacy 