Seizures, Autism, and Our Family's New Normal
Leo hasn't been himself since coming home. It's difficult to know whether he is having his typical annual reaction of varying intensity to winter break's schedule disruption and reduced activity level, or if he really is different. But he is ... unsettled, and frequently unhappy. I'll give him another week of being back in school before ruling out the schedule factor.
He has EpiPens. At home. At school. In his backpack. His school, being awesome, responded instantly (even during the break) about their need for Leo to have a seizure protocol in place, and about getting Leo's class staff and bus driver informed and properly trained for both the seizures and the EpiPens.
We are taking turns sleeping with Leo, because his seizure happened during bedtime. I know an ASD child who had a second seizure while sleeping ... and never woke up. I know other autistics whose seizures happen after going to sleep. This makes for light sleeping from the parent perspective, though Leo himself is delighted at the nightly slumber party. He's not sleeping as much as he was before the incident, which is also different.
We can't travel outside of cell phone range or take Leo on flights longer than two hours, for now. After years of Leo getting used to loving traveling, and for a family who considers "together time" long hikes in the deep dark remote wilderness, this is going to take some getting used to if it turns out to be permanent. And of course, we will get used to it, if that's what we need to do. We're a family of adapters and accommodators, including Leo.
But I'm different, too. Grouchy, depressed, unable to think straight, declining work, declining company, crying at the least provocation or any time I can't block the image of my husband trying to call me as he sat alone with our seizing son and I did not pick up. Part of it is a variation on PTSD, part of it is being thrown back into the whirlwind of We Don't Know What's Wrong With Your Child.
I know it will get better, with time. It got better after Leo's autism diagnosis -- though that process took years, and it didn't have to be so awful, and I'm proud to be part of providing better resources for people and families with new autism diagnoses. We have been reassured by many friends who have, or have children with, multiple diagnoses -- this will become our new normal, whatever "this" turns out to be.
We haven't stopped looking for answers. I have an appointment with Leo's pediatrician tomorrow, to see if we can figure out the source of his allergic reaction, and to pursue more tests with a neurologist. I continue to talk with other parents, and with people who have seizure disorders themselves. Their friendship and advice is a priceless privilege, and helps us ask the right questions when we do talk with Leo's doctors.
We're forcing ourselves to keep moving, keep being ourselves. We decided to keep on hosting the family-friendly New Year's Eve party we'd planned, even though it happened two days after Leo was discharged (for us, the ball dropped at 7 PM, which was midnight in Nuuk, Greenland). Though I was sleepwalking, it seemed a success, and Leo and his sisters had fun. We took the kids hiking and mushroom foraging on New Year's Day. Leo and his sisters and I spend the rest of the winter break exploring all the playgrounds they would tolerate.
And ... my husband and I went on a date one week after Leo was discharged. We gave our sitter a form that gives her legal permission to take our kids in for medical treatment, copies of our kids' medical cards, a list of our cell numbers and numbers for places we'd be, and printed out our address, cross street, and home phone number. We didn't stay out late, but for the first time in a week we both left Leo's side. It was a healthy step in the right direction. Leo is certainly not going to stop living his life at full speed; we just need to re-learn how to follow his example.
More on autism and seizures:
Jo Ashline on her son's seizures and meds.
Self-advocate Kassiane Sibley, on What Epilepsy Is:
Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'...
...please read the rest of What Epilepsy Is.