Setback Step-Up
Mid-week last week I got a phone call from the nurse at Ronan’s school. It hadn’t been more than half an hour since I’d dropped Ronan off when I saw the school’s phone number flash across my caller ID. The worst emotion comes over me when I see that phone number: heart-pounding, drop-dead dread.
Of course, I shouldn’t think the worst. It could be Ronan’s teacher calling to ask me to pick up snacks for Ronan while I’m out shopping. Or it could be a reminder about an upcoming IEP meeting. But, I always know when it’s the school nurse. And, I can always tell when something awful just happened.
Barely audible, I answered, “H-e-l-l-o?”
Please don’t be anything wrong. Please don’t be anything bad. Please not an accident. Or a seizure.
“Hi, Cathy. It’s the school nurse.”
I braced myself, my body shrinking as I unconsciously curled up waiting for her to continue.
I pressed the phone as close to my ear as possible, “Yes?”
I already knew in my heart what happened, but I still prayed. Please, oh please, oh please! Please don’t let it be serious.
“Ronan’s just had a seizure….”
In my mind, I’ve already put the car in drive, have raced to the school and am holding Ronan in my arms.
“Oh, no!” I exhaled. As I release the air I’ve trapped inside, new emotions fill me—sadness, fear and worry.
“I’ll be right there.”
As I drove toward the school, the nurse shared more. She described the duration of the seizure, what Ronan did before, during and after, who was with him and how he’s responding now. Thankfully, Ronan is okay, but I still need to see him. To hug him. To tell him that I love him. And to say how sorry I am that he had another seizure. I asked the nurse to tell Ronan that I was on my way and that I’d be taking him home for the rest of the day.
The closer I got to Ronan’s school, the harder it was to keep from crying. This wasn’t his first seizure or the first seizure at school. I’ve gotten calls like this before and go through a mix of emotions. Sometimes I manage to hold it together until hours later, and other times I silently cry while the nurse is still on the phone with me.
As scared as I am when I get these calls, this one had me worried, but, I still didn’t cry right away. I could have easily burst into tears the second the nurse told me what happened. Or while she described how this seizure seemed different than the last one Ronan had. Or while I pictured Ronan’s teachers gathering around him to help him through it. Or how I imaged how they stayed very close to him afterward. Thinking about Ronan did after this seizure is what started the tears.
Ronan is usually either confused after a seizure or jumps right back into whatever he was doing prior to it. This time, immediately afterward Ronan was able to sign that he wasn’t feeling good. He signed his response which is something Ronan’s never done with me after a seizure. When he was asked if he was okay, he was able to tell someone that no, he wasn’t. So, when I imagined Ronan and his teachers who asked, “Ronan, are you okay?” and he signed, “No,” I was overcome. Not only did he respond quickly, but when they asked him a few minutes later if he was okay he again signed, “No”. He knew, and he was able to express himself clearly. This was a first, and was also a breakthrough in his communication.
As I approached the school grounds, through the tears I wondered why. Why Ronan? Why now? Why, after these last few weeks? He’s made some really neat progress, and he’s been happier. He’s been willing and able to do more. Why? Why after frequent successful school reports and after advancements at therapy. Why now? And, why again?
Pulling into the school parking lot, I composed myself and walked quickly into the building. I hugged Ronan as soon as I saw him. His teacher recounted the morning’s events, and I thanked her for being so quick to know what to do and for keeping Ronan comforted. I promised to keep her updated with how Ronan was doing and got him home to rest.
Ronan’s seizures are unpredictable. The last one we saw was well over 6 weeks ago. In those six weeks, Ronan’s made some good gains. He got into a good groove, built on old skills and made solid improvements. Six weeks. It was a good run. One of our longest ones in recent months. When Ronan’s seizure-free life is good. It’s great! We both move forward. He learns and develops new skills, and I feel like I’m on top of the world watching miracles happen. Then, just like that, BAM. A seizure happens. Ronan stops dead in his tracks. He hits a setback as the seizure strips him of hour’s worth of skills that he’s worked so hard to achieve. Seizures take away strengths and momentarily throw them away. Work becomes difficult. Activities are now cumbersome. Ronan’s pace needs a kick start and it feels like both he and I are back to square one. All of it makes my worry increase and my confidence plummet.
Ronan didn’t bounce back from last week’s seizure as quickly as he has before. His one day of rest now needed two days of quiet time with limited demands in order for him to fully recover. In the time it took to make sure Ronan could get up on his own again, I went from somewhat anxious into full-on worry mode. I wondered how many more. When will they happen? Who will be there to catch him when they knock him literally off his feet? And of course, I wondered why. Why? Why? Why?
I know why. Other parents of vaccine-injured children know why. Seizures are one of those awful side effects that vaccines offer. Seizures are things we never expected but are scary reminders of how fragile our children’s lives and bodies are now. They creep up and ruin plans and our future. They take away every positive thought we dared to think. Just when I hoped that Ronan could finally break out of some of the autism that’s gripping him so tightly, seizures brought us back to the starting line all over again.
But, with each setback Ronan has, he somehow picks himself up. He figures out how to get up. That’s the beauty of Ronan—he always tries, tries again. It’s no coincidence that this song was playing on my radio just a few minutes before I got that phone call from the school nurse last week. I sang along with it thinking about all the successes Ronan and I have overcome in the last eight years, “Yea! We’re gonna do this, Buddy! It’s you and me—Ronan and Mommy. We’re going to get you to recovery. We’ll get there together!”
How that song haunted me after that call and throughout the next 48 hours as I monitored Ronan’s every movement, breath and more. The longer it took Ronan to recover from the seizure, the farther away from hope I got. How was I ever going to get back up again?
It took awhile, but Ronan got back to his normal activity and energy level by the end of the week. He finished his school days with flying colors. He breezed through therapy without any struggles. He proved yet again that he is a fighter and that he is going to keep on going. Even with these setbacks, he always seems to be able to figure out how to get back up long before I think I will be able to. Ronan attempts the impossible and triumphs time and time again.
Despite all that he’s got going against him, Ronan is my rock. I must remember to look to him for strength and encouragement, because he’s the best example I have. He’s proven that over and over again. Ronan’s needs are great, but they are also worthy of every effort of mine. Because of that, I will get back up again. I have to—to make sure that Ronan is given every chance he can get to do everything he wants to do.
Cathy Jameson is a Contributing Editor for Age of Autism.
My heart goes out to you and your son. Sometimes Ronan sounds so like my son when he was younger; signing before he was able to talk. ( By the way, we loved the Signing Time videos.Does Ronan like or watch them?)I'm reminded how much my son has gained over the years..
In five or six years please God, Ronan will have made so many strides, with you beside him.
One of my most poignant memories is of my son at a cub scouts troop, where all the kids had to present a "Dad and son" cake. Junior got up in front of everyone and said laboriously "Me and my Dad we ma this ca.It is chocola"
The shocked look on the faces of the troop leader who hadn't had much to do with him,and did not realize how hard it was for him to speak.The courage of Junior standing there, saying the words in front of the crowd.
I was so proud and yet angry at the same time: angry that he had to work so hard for something that was so easy for the rest of the kids; and so proud of his warrior heart.
And earlier we had never thought he would speak at all.
We never had to deal with seizures.That proud and angry feeling comes back when reading about you and your son.You guys are both so brave, and in my prayers.
Posted by: Hera | February 26, 2013 at 09:35 AM
Cassandra;
That video is the the best LINK EVER!
Hey EVERYONE LOOK- LOOK -- LOOK!
Thank you so much Cassandra. I plan on gettng a knife, whip, gun and making all of mine watch it within the week.
Posted by: Benedetta | February 25, 2013 at 08:14 PM
Hi Cathy -
You mentioned you had increased his intake of coconut oil and it triggered a memory I had of reading something about coconut oil, so I searched my research archives and found the following from "A Comprehensive Guide to Managing Autism" by Willis S. Langford:
"You must supplement vitamin B6, zinc, and magnesium, especially when using coconut oil. Remember, that a zinc deficiency adversely influences coconut oils tending to a fatty liver. P5P is apt to be more effective because a large majority of “healthy” people do not convert the regular vitamin B6 to its metabolite form. One study showed 19% were deficient in one or more B-vitamins, but 62% were deficient in the necessary metabolites. Zinc deficiency can also look like a fatty acid deficiency, and children with milk intolerance have been shown to be deficient in EFAs."
I know that magnesium deficiency can result in seizures. Is it possible Ronan is slightly deficient in magnesium and the coconut oil tipped the scale (so to speak) ??
Just thought I would mention this - you may or may not find it helpful. Ronan is very lucky to have you and my very best wishes to both of you! :)
Posted by: Karen | February 25, 2013 at 03:26 PM
Prayers for you. Tears for you.
Posted by: KFuller | February 24, 2013 at 10:28 PM
I can scarcely write through the tears for you, your little man, your family, and all that you endure. It breaks my heart. Why indeed?! With all of my heart I wish I knew what to do to help. Please know how much we care about your family. I send you warm hugs, much love and special prayers. You are always close in thought. I wish it were more.
Posted by: Lin Wessels | February 24, 2013 at 09:56 PM
Thank you for the suggestions and prayers.
I have been reading about coconut oil and have increased Ronan's intake (he likes it on his GF waffles in the morning). We haven't pursued the ketogenic diet (did ask about it awhile ago, but were told it wouldn't make much of a difference). Sigh. We have a new doctor now who has been much receptive to Ronan's needs and works well with us. I'll be sure to ask about the possibilities of starting it at our next neuro appointment.
Thanks, xoxo, Cat
Posted by: Cat Jameson | February 24, 2013 at 09:23 PM
I'm sorry. Cathy. I see some have mentioned the ketogenic diet. I agree. has worked for Josh. It is not a difficult diet. wishing the best, maurine
Posted by: Maurine Meleck | February 24, 2013 at 08:30 PM
To Cathy, and all the autism parents here:
You are family to those of us who also have vaccine-injured children.
I hope it helps ease your burden, even if it's only a tiny bit, to know that we share your sorrow when there are setbacks, your joy and relief when there is recovery.
All of us here, even those of us who are not particularly religious, are praying for you, for your family, and especially for Ronan.
Posted by: Taximom | February 24, 2013 at 07:20 PM
The ketogenic diet works by providing the brain with alternative energy.
more on the ketogenic diet for seizures:
http://vimeo.com/55453574
more on coconut oil and how it works:
http://www.youtube.com/watch?v=ZZOR-Qd3QSg
In addition to providing ketones for the brain, coconut oil has antiviral activity.
The ketogenic diet is not an easy one but a modified low carb diet with lots of coconut oil may help many autistic kids with seizures.
Good luck!
Posted by: Cassandra | February 24, 2013 at 06:03 PM
My prayers go out for Ronan, and all of you.
Posted by: Jeannette Bishop | February 24, 2013 at 05:17 PM
I'm with you too.
We homeschool now, and seizures are one of the reasons why. Expecting our under-skilled, under-resourced and under-engaged system to accommodate seizures (when they could not respect the rest of him) was a step too far.
For us, the medication brings good and bad, enough of both to keep us dancing on the damn tightrope.
But the whole thing focuses the anger - not more, not now...
Posted by: Valerie Foley | February 24, 2013 at 04:02 PM
Some children diagnosed with Autism have been found to have underlying infections - for them antibiotics long term have helped http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf
Posted by: Joanne Drayson | February 24, 2013 at 02:59 PM
oops, I meant recovery.
Posted by: Cassandra | February 24, 2013 at 02:59 PM
Cathy,
Have you tried the ketogenic diet for Ronan?
Coconut oil might be very useful in that.
Good luck on the road to revocery!
Posted by: Cassandra | February 24, 2013 at 02:52 PM
I am so sorry Cathy.
Vickie said her's got better.
My son got worse.
But mine did not have falling down seizures at first - just absentee seizures and would pee on himself at school. Not something he pride could hardly take.
More into the teen years we went the worse the seizures became.
I hate to say that - because the future is scary enough with out some mother coming on here and saying that.
BUT:
If I knew then what I know now - I would move heavy and earth - to get him on the sure enough Ketogenic diet.
I don't know how it works, but apparently my kids are having trouble with lipid metabolism and fat to eat and nothing else seems to help??? --
All the doctors on the mitochondrial website says that if they have pinpointed the problem on the electron transfer system in the complex I and III; that a diet of low carbs/high fat works, and they too don't know why helps.
I have not heard from Kent for the longest while. I wish he would write somthing about how he found a doctor willing to help begin this diet because they are few that will.
Posted by: Benedetta | February 24, 2013 at 01:15 PM
I think we will have a different image in our heads as we go down the road singing this song- we love this song.... Ronan will be dancing- getting his groove on...and we will be glad that He can get back up again!
Posted by: tara mcmillan | February 24, 2013 at 07:35 AM
Yay! Ronan bouncing back from the horrible effects of vaccine injury. I can see him dancing to this!I am glad that Ronan is OK. Never to late to get back up again....get back up again. I think my kids and I will have a different image of this song, as I drive down the road and we hear this song on the radio....
Posted by: tara mcmillan | February 24, 2013 at 07:29 AM
I feel for you, Cathy. I had the same experience when my son was in elementary school.
Obviously I can't speak for Ronan, but I can tell you that the seizures became fewer as my son got older. Today he is age 25 and may have merely a staring spell 3 or 4 times per year. He doesn't even require anti-seizure meds any more.
Hopefully Ronan's brain will quiet down as he gets older and these episodes will become less and less frequent. But as a mom, you never forget the fear.
Posted by: Vicki Hill | February 24, 2013 at 07:20 AM