By Cathy Jameson
I missed a lot of news this week. Too busy taking care of things at home while prepping for a much-needed family trip away, I stopped reading about the measles, about states ready to remove religious exemptions, and about other stories the media wanted me to worry about. As important as some of the news topics are, I had other important things on my mind.
Taking a child with seizures and regressive autism on vacation is doable, we've done it countless times before. But every trip, even if we've been to the location before, takes careful planning. I haven't ranked the importance of each, but I must always consider Ronan's health and safety for each adventure we hope to take. Those, and which of Ronan's daily, necessary supplies we'd need to bring while we're far from home must be packed well before I think about simpler things, like what outfits I'd like to bring for me.
Health-wise, we've had a mild winter so far. I reported that to one of the nurses assigned to us days before we left. Curious if we still say no thank you to the flu vaccine because of a reaction Ronan had previously, she asked if Ronan had gotten sick with the flu since last "flu season". I shared, "Nope, he hasn't." "Even without the shot?" she was curious. "Yep, even without opting for the shot," I stated. Ronan's siblings had the sniffles when winter started, but he's been healthy for a good stretch of time. We wanted to take advantage of the optimal health Ronan's been experiencing, so we made plans to leave town sooner than later. The siblings were looking forward to that because it would mean missing a few days of school. I normally wouldn't pull the kids out of the classroom in the middle of the week, but when every door opens for us to go away as a family, we go.
Able to pack their own bags, the kids got their flip flops, swimsuits, comfy clothes, and a few of their books packed right away. Fueled by their excitement, they packed quicker than I could. Requiring loads more time and attention, Ronan can't just walk out of the house with a backpack like his siblings can. He needs multiple changes of clothing, pull ups and diapers including swim diapers, waterproof sheets to put over whatever bed he'd be sleeping in, his favorite books and pictures, a communication device, the iPad, his food, and the blender so that I can puree his food. He wouldn't be too excited that the blender was going to travel with us, but dsyphagia, like autism, doesn't take a vacation. Getting everything ready wouldn't be hard; we have everything he needs at home. It was a matter of making sure I had enough diapers, pull ups...and everything else when we got to our destination. We could certainly buy things where we were going, but I didn't want to have to spend more money than we already budgeted for the fun activities we couldn't wait to do. We were planning on going to a water park, the beach, a museum, and a few other places that required admission. Packing and bringing whatever we could from home, it looks like we're on the run with how full the back of the car is with all of Ronan's things! Medically fragile kids require a lot of equipment. There’s no getting around that. How well our vacation plans go will sometimes depend on how comfortable Ronan is. If he wants all of his comforts of home, we bring them. Once we got to our first destination, I was happy to discover that I only left behind one thing - his toothbrush. I remembered everything else, which is a lot, and was happy to spend a few cents more than I usually would for a new toothbrush.
With how many miles we've logged up and down the east coast since Ronan was a baby, I was not worried about how he would do in the car when it was time for us to hit the road. He does so well! He used to need to be "plugged in" either with a movie or a game on the iPad, but Ronan can now go miles down the road without wanting to play on any devices. The longest trip where he's been content to read or look out the window at the passing scenery has been two hundred miles. That’s a feat for any kid, let alone a child with autism. Many years ago, Ronan couldn't get beyond our driveway without a requesting a movie, and usually one he wanted us to play over and over again.
This trip would be shorter than the one we took at Christmas, but was just as important. We'd be spending time with family. Having gone through some trying times the last few months ago, we were going to be able to put life on pause for a few days. That meant no alarm clocks, no therapy appointments to run to, no phone calls to case managers, and no nagging emails to return. It would be just us doing whatever we wanted for a few days. We'd be in close quarter, but it was the time we'd get to spend together that I was most looking forward to.
I think time is one of the most important gifts you can give someone. To give your undivided attention to another person, especially in this fast-paced world we live, is valuable. So are the memories you get to make while you're together.
If you ask the kids, we made some really cool memories - and many included Ronan, too! Sometimes he and I have to bow out during family outings. His energy level, his ability to stay up with the activities chosen, his attention span, and unpredictable seizures will have had us sit out while everyone moves on. He doesn't realize he's missing out on anything, but I do. This time, he only had a few hiccups, and none of them were actually bad. Ronan wanted to swim after it was time to leave the water park, and he wanted to go up the escalator back into a museum after we'd already spent two hours there. Happily, he had no seizures, no meltdowns, and no frustrating moments beyond not wanting the pureed food I knew that he'd likely reject. This time, Ronan enjoyed more of the activities with us and faced each new demand, to include walking and climbing more than he’s used to, with patience.
Alarm clocks, school, therapy, and homework. That will all be there the minute we roll back into our driveway. So will the news - continued measles scares, even though there need't be any; the threat of eliminating exemptions, even though they are a necessity; and whatever else the news thinks I need to worry about. For a few days last week, I didn't worry. I was with people who need me more - my family. We explored. We enjoyed life. We were lazy, and we happy. Most importantly, we were together. Life will pick back up again soon, but for a few days, sipping coffee in front of the ocean while the kids played in the sand at the end of a great weekend was my only plan.
Cathy Jameson is a Contributing Editor for Age of Autism.
I read this with a smile on my face. I'm glad your family had a great time away and together with each other.
Posted by: ASusan | February 11, 2019 at 12:59 PM
I'm glad you had a nice vacation! I have been consistent c the vaccine
issue, I think there is too many. I am not a fan of the HPV+Flu vaccine.
Dysphasia+Seizures. Where's the DYSPHASIA coming from? The Ketogenic Diet
Johns Hopkins for Seizures--(it starves fungus-my opinion)
I HAD THE WORST SORE THOAT IN THE WORLD--BAD! I asked for Xylocaine
it was so bad. See ALS. How often are Ropeworms mostly fungal of cause?
See my pics--around my Stoma--That's Fungal Disease--
Human Cell+Fungal Cell--The Fungal Cell can dominate--Fungus is Mutagenic+Genotoxic
Fungal Theory is very strong--Orac has had 3yrs to come up with his Top 100 studies
regarding Cancer+Autoimmune Theory---
I wish you all the best--Mark Brown PA
Posted by: mark brown | February 11, 2019 at 06:00 AM
One of my favorite people's favorite phrase: "The Beach Is My Happy Place." So grateful the Jamesons got to spend time at the beach!
Posted by: MamaBear | February 11, 2019 at 03:56 AM
When someone mentions seizures, I can't help but wonder about the piece of research below. It isn't isolated; there are others; this just happens to be the one I saved into computer memory.
= = = = = =
Neurobiol Dis. 2015 Oct;82:46-53. doi: 10.1016/j.nbd.2015.05.013. Epub 2015 Jun 6.
Potent anti-seizure effects of D-leucine.
Hartman AL1, Santos P2, O'Riordan KJ3, Stafstrom CE4, Hardwick JM5.
There are no effective treatments for millions of patients with intractable epilepsy. High-fat ketogenic diets may provide significant clinical benefit but are challenging to implement.
Low carbohydrate levels appear to be essential for the ketogenic diet to work, but the active ingredients in dietary interventions remain elusive, and a role for ketogenesis has been challenged. A potential antiseizure role of dietary protein or of individual amino acids in the ketogenic diet is understudied.
We investigated the two exclusively ketogenic amino acids, L-leucine and L-lysine, and found that only L-leucine potently protects mice when administered prior to the onset of seizures induced by kainic acid injection, but not by inducing ketosis.
Unexpectedly, the D-enantiomer of leucine, which is found in trace amounts in the brain, worked as well as or better than L-leucine against both kainic acid and 6Hz electroshock-induced seizures.
However, unlike L-leucine, D-leucine potently terminated seizures even after the onset of seizure activity.
Furthermore, D-leucine, but not L-leucine, reduced long-term potentiation but had no effect on basal synaptic transmission in vitro.
In a screen of candidate neuronal receptors, D-leucine failed to compete for binding by cognate ligands, potentially suggesting a novel target.
Even at low doses, D-leucine suppressed ongoing seizures at least as effectively as diazepam but without sedative effects.
These studies raise the possibility that D-leucine may represent a new class of anti-seizure agents, and that D-leucine may have a previously unknown function in eukaryotes.
Posted by: Nonnymouse | February 10, 2019 at 10:32 PM
I'm so glad you had such a wonderful and relaxing vacation and had the chance to get away from everything for a while!
Posted by: Gayle | February 10, 2019 at 09:59 PM
Sounds lovely! Hope you Jamesons have all had a rejuvenating "pause!"
Posted by: Jeannette Bishop | February 10, 2019 at 05:55 PM
Slightly off the topic, but here is another incident how public school system is failing Autism children and their families.
Posted by: R Prasad | February 10, 2019 at 03:40 PM
Two hundred miles. That's likely a sign of increased brain development. A positive sign.
Posted by: michael | February 10, 2019 at 11:39 AM