About 3 weeks ago, Ronan’s little brother told me that he was having headaches while reading. Willem has been in glasses before. But that was back in 2nd and 3rd grade. He’s passed eye exams since then, but it was important for me to get him back to the eye doctor. I thought we may be revisiting his need for corrective lenses. I was right.
For Willem, it was a quick fix. For his big brother Ronan’s medical issues, many of which began post-vaccination, it’s been a complicated, trying, expensive, disheartening, and sometimes overwhelming process to get doctors to listen to us and to help us. I’m prepping for a slew of follow-up appointments for Ronan right now. Part of me is ready – I get to fight for Ronan! But the other part of me is dreading them – it’s work to do this, hard work!
With how many of his systems are affected, and with how many people it takes to oversee his medical care, I end up doing a lot of studying as I get ready to talk about Ronan’s health. I told a dear friend in a phone call last week that whenever I prep for these every 4- to 6-month appointments, I feel like I’m getting ready to take a final exam. Before I sit down and catch everyone up on what’s worked, what hasn’t, and also share what I’d like to see changed, I have a lot of reading and organizing to do. Right now, I’m reviewing recent lab test, therapy notes, Ronan’s seizure calendar, and other pertinent information that I believe is helpful to share. I’ll meet with the doctor’s individually, but some of what one doctor shared last time may need to be relayed to another doctor this time. Thankfully, some of Ronan’s team already communicates well with each other, but I don’t mind being the matchmaker for those who haven’t caught on that some of the medical problems we’re trying to tackle are related.
Since Ronan can’t chime in at his appointments like his siblings can, I make lots of notes. I won’t share everything that I write down, but I have found that mentioning things in date order, and including events that happened both before and after an episode we’ve been concerned about, helps. Four months ago, we noted …a change in behavior, sleep pattern, decreased ability to complete an already achieved milestone. Right before that time, we saw these changes … his appetite, his sleeping schedule, his behavior. Then, 2 weeks later we saw a rash of seizures right before …a fever, a change in the season, an increase in aggressive behavior…
Willem must have picked up on that method because the other day, when it was his turn share some medical history and tell the eye doctor what was going on, I listened to him advocate for himself – “Yeah, it kinda hurts. It was a few weeks ago that I noticed it. Sometimes it started to bother me right here on my head at school. But most of the time now, I feel it after school at home when I’m reading a lot. When it’s bad, I have to put my stuff down, close my eyes, and sometimes rest my head to make the ache go away.” He looked at me and waited. I looked at him, gave him a thumbs up, and beamed. He spoke clearly, confidently and gave just the right details. I was so proud of him for being able to do that!
After he offered personal insight into the type of pain and problems he was having, I interjected with more information about Willem’s past eye issues. I also mentioned some of his brother’s medical problems, namely that he had mitochondrial dysfunction. I felt it was important to share that because we’ve been warned that Ronan may have severe vision issues later in life to include loss of sight. I told the doctor that I wasn’t worried that Willem’s health would follow suit, “…but since the boys are related, well, I feel it necessary that you know a little bit about his brother and about his medical issues.” She nodded her head, jotted down some notes, and said, “Someone has to be the historian.” I smiled and agreed.
I didn’t share our full family history during that visit, but past history shows that I made some poor medical choices for my children. I didn’t know then what I do now. I didn’t know then what I should have either. I never want to repeat that ignorance. That’s why I’m driven to be present with Ronan now. I do that even though my efforts to engage with him are not always reciprocal. They aren’t reciprocal with the siblings either. They may never be, but we’re not going to give up on hoping for something better for Ronan’s future.
I’m not the best at planning for the future completely, but I know that some of what Ronan’s going through right now isn’t working. I see that. Willem and the other siblings see that as well. We want a change, and we want it to happen sooner than later. So, before I head out to the next few appointments Ronan has, you’ll find me reading the seizure calendar we keep and cross referencing it to changes in behavior, the weather, the moon cycle, and recent illnesses. I’ll be reviewing the protocols were using and brainstorming alternative ones to try instead. I’ll be looking up and printing off information that friends, as well as several AofA readers, have asked me to check out. I’ll be pulling up the color-coded Excel spreadsheet I have that lists past medical events and lists interventions we’ve tried. If I have time, I’ll finish the 2 books I’m reading now, too. One is about autism and the other is about genes. Neither book is what a typical mom may see as a “reading for pleasure” sort of book, but I find joy in books that help me learn and understand more about what’s happened to my child. I find even more joy in the potential to positively change the course of my child’s future because of the simple knowledge I gain from reading a book.
If I’ve learned anything about being the parent of a special needs child, it’s that you never stop learning. What worked last month may not work next month. What used to be helpful before is an irritant now. Special needs parents never stop learning. That holds true to typical parents also. Parents have to know everything! They may never use all the information that they’ve gathered in one sitting, but it’s always good to keep learning – including learning from the past.
To be cognizant of what happened in the past, to be aware of what’s going on in the present, to decide how I want things to be in the future, as long as history doesn’t repeat itself, we have a chance. Ronan has a chance! Reading, organizing, preparing, and keeping track of everything I need to takes a lot of work. I have to remember so much. For these upcoming appointments, I’ll carefully prep and quietly pray about what I need to say because what I say and how I present the latest progress and problems we’re having can make a big difference. With as many providers we’re about to visit, I have a chance to make Ronan’s tomorrow a little bit better than today. Out of everything I’m doing, that’s the most important thing I need to remember.
Cathy Jameson is a Contributing Editor for Age of Autism.