Yesterday was a brilliantly blue, almost hot, late spring day. My day job, when I am not yammering about the importance of autism awareness, is a nanny. It is a pretty sweet gig. I get to be the caretaker of two awesome little girls who are just starting to figure out the world. On Thursday, I only have one of the toddlers and she has dubbed this day, “Adventure Day”. At 7:20 in the morning she met me at the front door, wearing nothing from the waist down, and decreed that it was time to go to the zoo. I convinced her that pants were the better part of valor and maybe breakfast would be a good idea, too. With those two minor items taken care of, we set off for the zoo. It seemed every elementary school in the world was at the zoo. To L, it must have looked like a sea of legs. She was happy to either stay in the safety of her stroller or view the world from my shoulders. After about an hour we decided we had had enough of humanity and heat, bid farewell to the California sea lions and the penguins and headed home. In her back yard, I watched her zip around on her play structure while I had some tea, and decided that life was not bad at all. At that precise moment my phone rang. It was Sonia, Boo’s teacher. He had had another tonic clonic seizure, the paramedics were on the way and she would meet me at the ER. I hastily phoned Robert and then my employer and spent a few fraught moments trying not to pace the floor and alarm my toddler charge. Her parents arrived and I bolted for Children’s Hospital.
In the ER I found a very pale, sleeping Boo, surrounded by Sonia, his beloved teacher and Robert. The ER was pretty slow right then, not a lot happening. They kept Boo a few hours for observation, loaded him up with Keppra and told us we could go home. He was not able to stand, so we basically poured him into a wheelchair, out the door, up the ramp, and into my car. Once home, I half guided /half carried him into the house where he collapsed on our bed, not to move for another 6 hours.
May 31 was also our Kung Fu belt test night. Mouse and I have been studying Kung Fu for about three years, Robert a little bit less. Tonight she and I were supposed to be taking our first solo test for our red belt, Robert was supposed to take his final group test for his third purple belt. By 5:00 pm, Boo seemed comfortable and soundly asleep. One of his beloved PCAs, J, offered to come over and sit with him while we tested. I gave her the remote control, free reign to the refrigerator and we headed out. Despite the stress of the day, all three of us passed our tests with flying colors. We returned home to find Boo still sleeping under J’s watchful eye. We settled in to a late dinner and slowly began to wind down for the night. I was hoping for a peaceful few hours, as Boo had not slept either of the two previous nights.
Around midnight I went to bed. No sooner had I started to relax when I heard a combination screech/wail that sounded like a wounded cat that came out of Boo’s room. I ran to him and he was sitting on his loft looking a bit confused. He climbed down and indicated he was thirsty. I wondered if thirstiness was one of the side effects of Keppra as I watched my son gulp down literally a gallon of water. He then proceeded to the fridge, found a sandwich from Jimmy John’s and began to eat like a starving mad man. He followed that up with an ice cream sandwich and then staggered back to bed. This became the pattern for the next few hours. He would doze for a bit, wake up, wail, and then proceed to eat and drink like he was famished. By around 4:30 am he finally seemed sated, but not sleepy. He grabbed his Ipad and took it back to his loft. He is lying there now, listening to his favorite tunes, flipping through his photo albums, seemingly content.
So, it has been a long day, a stressful day, but not a day without blessings. When Boo had his seizure the staff at his school knew immediately what to do and jumped into action. My employers were able to relieve me from work in less than 15 minutes.The paramedics and the staff at the ER were lovely. Neurology at Gillette Children’s returned my calls immediately and said that we definitely wanted to start him on Keppra. My dear autism mom friends online reached out with their love and support, telling me that Keppra and B6 was definitely the way to go. I will pick up some B6 at the pharmacy later today. Apparently, there is such a thing called “Keppra rages” that affects some users and B6 can help combat that. Boo, by nature, is a very gentle soul, so I have a hard time seeing him going into a rage, but one never knows. I was planning on keeping him home from school today to give his brain a chance to reset. Boo, however, has other plans. I can hear him in the other room, making his Ipad talk about school and a possibly bowling play date with A, his other beloved PCA. So, I will follow his lead. If he want to go to school, I will send him to school, where I know he is loved and cared for. On my end, I will give thanks for the myriad blessings in my life and drink another pot of coffee, in the vain attempt to keep up with Boo.
Harriet's Hedgehogs and Autism Advocacy 