A new care coordinator was assigned to Ronan a few weeks ago. Wanting to meet us so she could explain her role and how her company can assist families like ours, I really wasn’t looking forward to meeting her. She’s straight out of mainstream medicine, an area of medicine that doesn’t usually go out of their way for moms like me. Moms like me question, doubt, fear, and don’t appreciate everything being offered. What they say is preventative really isn’t. What mainstream med says is safe and effective really hasn’t been. What they say is mandatory really shouldn’t be. Feeling apprehensive, but knowing that this meet up was an inevitability because of the type of program Ronan was in, I made plans for us to get together on Monday of last week.
During the meeting, I believe that I gave her enough information to satisfy her questions. Ronan has this diagnosis and that diagnosis. He uses this equipment and is on that prescription. We see this doctor, that doctor and those therapists over there. He requires this amount of assistance and that amount of support. Getting more personal, I was able to share that oh, yes, he is well taken care of and well loved. He enjoys watching movies, playing Wii, and oh...no, he did not get this year’s flu shot or that pneumonia vaccine...but thanks for asking!
Waiting for the next round of questions, I watched the young nurse fill out Ronan’s forms. Checking this box, crossing out that wording, circling this option and x-ing out that answer, she remained silent. I did, too. She didn’t get to know everything. Part of being the kind of mom mainstream medicine tends to loathe, I’ve learned when to speak. I’ve also learned when to shut up and just listen. I don’t always like to do that, but it’s part of what moms like me have had to do.
An hour had passed. The last part of the meeting with the care coordinator was talking about and making goals. Goals? Medical goals? In all the years Ronan’s been seen, evaluated, and treated, no medical person has ever asked me about making medical goals for Ronan. Even so, I blurted out two as quickly as she’d asked:
#1 To make the seizures stop
#2 To restore Ronan’s speech
Without making a comment, or showing any emotion, she wrote down what I had said. Then, I waited. I waited for some advice.
But, I got none in reply.
I’d hoped she could at least answer some questions, ones that I sometimes ask myself daily - What more can we do? We’ve done everything. What else could we try? We’ve tried everything. Who else should we see? That we can trust. What else should we ask? That hasn’t been asked already. The goal section on the form wasn’t that detailed though. It was much simpler. Write a couple of goal. Hope they happen! If only making the seizures stop and the language begin to flow again was that easy.
We wrapped up the visit and promised to keep in touch. Then Tuesday happened.
Tuesday, while I was driving the high school carpool kids, Ronan had a seizure. Then, he had more. With big sister sitting next to him in the back seat, she knew to count them. “Mom, he’s had 2. Now three more. Mom... more. Mom!”
Ronan didn’t want to get up that morning. Waking him from a dead sleep, he couldn’t tell me anything verbally so he signed, “No, no, no, all done, no,” as I tried to get him up and into the car. Once buckled, he sat and rubbed the back of his head on the seatbelt all the way to the carpool pick up point. He continued to rub it as we headed down the road with a carfull of teenagers.
When the seizures started, I was more sad than worried. Poor kid. Will he ever catch a break?
One seizure is not unusual. Clusters of 3 or 4 are not uncommon as well. But these were different. Fiona knew it. As I stole glances of her and Ronan while keeping my eyes on the road, I knew it, too. For these kinds of there-and-back sort of drives, I don’t bring Ronan’s backpack--it has a change of clothes, a favorite book, and a stash of his emergency medication. I regretted not having it the instant I looked in the mirror. Ronan’s back arched, and he began to have a grand mal seizure.
“Fiona, honey. You’re doing great. Watch his head, okay?” I said to my daughter as calmly as I could. We could pull over in less than a quarter of a mile. If I could just get us off the road, I could try to help her. “Hang on, kiddo.” But what do I do? What do I do??
The last time Ronan had a seizure this big, he was in the hospital. His doctor was right there. She got him stable, but now? It was me and 5 teenagers in a car with none of capable of stopping a grand mal. Think! Emergency meds. He needs his emergency meds! Oh, my gosh, they’re back at home. But, wait. Maybe I had one dose in the car. Yes! I knew I had put one in the car months and months ago. It was now just a matter of pulling over and finding it.
Mere seconds had past, but it felt like hours. Ronan was still seizing, so I continued, “Hey, kids? I have to pull over. Ronan’s having some seizures. He usually doesn’t have this many, but I need to check him.” They understood and when I had to unzip Ronan’s pajamas, pull off his diaper, and insert the suppository medication in, they remained quiet, calm, and incredibly respectful.
Within seconds, the seizures stopped. It felt like a lifetime, but in a few short minutes he was stable. I, on the other hand, was crying on the inside. A grand mal! Why? Damn it! We’ve never had to deal with these. I hope to never again.
Dropping the crew off to the school, and only five minutes later than usual, I tilted the rearview mirror down so I could watch Ronan unobstructed as we drove home. Looking so tired but so beautiful, I couldn’t help but think about that goal I’d made for us less than 24 hours before - to make the seizures stop. I laughed. Then I cried. When I got home, I cried again when I saw what Fiona had been looking up in between the smaller seizures. Damn the damn seizures and what they’ve done to my kids!
Thankfully, Ronan bounced back. He made it to his therapy appointments. He learned how to spell some new words. He laughed with his siblings, and with the encouragement of some of his brother’s classmates, Ronan went down the slide all by himself. That happened the day after the big seizure. Taking years for him to have the confidence to not just sit at the top of the slide but to go down it as well, Ronan finally slid down the slide. He went down three more times. The middle schoolers knew it was a big deal and cheered happy and hopeful cheers. It was a moment I won’t soon forget.
Life is full of ups and downs. I cling to the moments that raise me up and work through the ones that have brought me down. I do wish it was a tad easier sometimes. With all the work it takes to care for and attend to every medical need Ronan has had, including that terrifying seizure in the car, it’s comforting to know that I can tap into new services reserved just for parents like me. For the last two months, we’ve had major issues with filling Ronan’s medication. Behind-the-scenes issues and loads of red tape cost us time and caused an increase in seizure activity in January. I can’t help but wonder if those prescription issues contributed to the seizures we saw this month, too.
Seizures are no picnic. The grand mal Ronan had last week proved just that. I tried in vain but have not been able to fix the medication problem on my own. Ronan’s meds are due to be filled next week. Our new care coordinator, who just met us and who barely knows us, says she can help. This gal has made resolving Ronan’s medication blunders a first priority. I pray she comes through with her promise. I really, really do.
Cathy Jameson is a Contributing Editor for Age of Autism.