I have pictures of my kids on the refrigerator like any parent does. I have magnets for the local pizza joint, a couple of letters from a plastic alphabet that haven’t been lost or thrown out and a few magnetic words that have survived several moves and small, sticky hands. Magnetic words used to define my love for any piece of literature I could get my hands on. This past weekend, while cleaning out my bathroom, I found a lone magnetic word and slapped it on the fridge. It happened to be next to another word hanging over Ronan’s picture. The phrase “silent frog” stared with steely eyes. My son who struggles is in fact very quiet. Many days, he’s almost too quiet.
I received a comment on my last article on AoA that brought back a lot of self-inflicted grief. Ronan’s name, one that we didn’t look for but just landed in our laps six years ago, means “Little Seal” in Scottish Gaelic. It was a perfect tribute to my husband and to his family’s heritage. From the comments, Gatagorra says, “I'm always struck dumb whenever I see pictures of injured kids like my own. In the recovering children, it's so easy to see who they could have been (and will be if we parents have anything to say about it). You chose this wonderful, unique name for your boy and clearly this represented all your wishes for him to grow into that name, to be his own person. But then along came a spider...And now you have to fight to get him back.” The fight to bring Ronan back is one that hasn’t seemed to let up. It’s one we didn’t know we were fighting initially and now, it seems like it’s going to take longer since the gains have again reached an unmoving plateau.
For those that know my family intimately, you’ll catch on to the frog stuff quickly. My husband is a Frogman. Even separated from the Teams, he’s still got that stealth know-how and MacGyver intellect. Steve is a former Navy SEAL who has collected over the years tons of frog and seal memorabilia from friends and family—a reminder of who he was in the military. When we started having a family, baby toys, onesies and picture frames included some frog or seal (for Sammy the SEAL). Of course we had dreams of our first-born son to somehow follow in his father’s footsteps. Maybe we would cheer for Ronan on the soccer field or as he raced down a track. Maybe Ronan would be able to scale those tall obstacle course walls with a muddy face and steel-toed boots. Maybe Ronan would be banging nails on a miniature wood working bench or even assist Daddy on his motorcycle rebuilds. The farther away we get from the initial vaccine-injury symptoms though, the closer we are to realizing that this life Ronan is living now may be for a lot longer than we expected. It doesn’t mimic Steve’s successes as we’d hoped.
I feel that I’ve faded in and out of the autism community. For years I refused to even link the word autism and what Ronan was going through. I never, and I mean never said that Ronan was autistic. To describe him, I’d say my son was vaccine-injured or had autistic-like symptoms. It killed me to even think of using that label on my child. One well-known DAN! doctor told us so matter-of-factly that, “Ronan was so NOT autistic…look at the way he communicates!” Yea! You can’t fool a DAN! Can you? We drove hours to see her and got such a great report while in the office. A little black rain cloud found us later though. The good ol’ doc went ahead and used a diagnostic code in the medical file that labeled Ronan autistic. I cried when I saw it as I was filing papers weeks later. Who do you trust?
It’s been years since Ronan received his childhood vaccines. These vaccines were supposed to help him get through childhood. They were supposed to give him immunity and to be strong while working on milestones and growing up. Instead, coupled with a recently discovered mitochondrial disease, Ronan’s body is far from getting through childhood. He’s far from having strength to get over certain illness, he’s far from growing up and he’s got no immunity to several of the diseases his vaccines were supposed to give him. Ronan may have his good days, but there’s far more bad days that leave me in shambles.
The once happy and beginning-to-chatter child I played with still exists. Ronan’s skills are more like my two-year olds’ skills though. Even my 8-month old has more babbling than Ronan some days. I’d much rather Ronan be able to hang with his typical age mates instead of continuously trying to get the star-shaped puzzle piece into the square-shaped hole. I’d rather see Ronan playing with his 4-year old brother than walk past him as if he wasn’t there. I’d rather Ronan use his words he used to have than struggle with sign language and fingers that have no fine motor control. I’d rather make this all go away but there is no way to turn the clocks back.
Instead, I continue to read. Some days I learn more and hope more. Other days, I’m down in the dumps again asking Why? Why? Why? Jenny’s latest book, “Warrior Mothers” was one of the hardest books to read. It took me weeks to get through it for Ronan’s story could have been written on many a page. I cried between several chapters always hoping something good will come of our generation of kids being taken advantage of. I’m in the middle of Dr. Jepson’s book “Changing the Course of Autism” which is another heavy read for me. There’s so many more questions I have about what happened and always with a follow-up question of why.
I know I will wipe more tears before returning yet another novel or magazine article to the shelves. I will continue to ask questions. I will reread journals that may have told me more if I’d read it sooner. I will ask my fellow Warrior Moms questions hoping they have conquered and climbed out of the plateau of Ronan’s lack of development. I will be the strength for others while I continue to find support for myself.
Steve accepts more than I do when it comes to Ronan. He gives Ronan the benefit of the doubt when I get my Mommy microscope to overanalyze something. Steve grounds me and helps me celebrate the baby steps since they truly are huge, gigantic leaps in Ronan’s world. Last week, while the kids were playing in the backyard, Steve took some fallen limbs and tossed them over our fence. Ronan was on the other side of the yard and must have watched Steve. Ronan walked over to a lone stick and a pinecone. He picked them up and threw them over the fence just like Daddy did. It took Ronan a good 2 or 3 tries to reach up and get the stuff over the fence, but he did it. He did it like his Daddy. He did it because he could.
This week, Ronan is going through a surge of cognitive gains. He came up to me and said something. He used no words but grunted. He grunted clearly, with great eye contact, with determination and then offered a sign language request. He signed “help me” and help him I did! I got up from where I was playing with the baby and held my son’s hand. He led me to the tv and signed, “Mommy, help me. Movie. Please. Cheese.” Cheese? Ohhhh, Ronan wants to hear the “Silly Pizza” song from Signing Time!! Quickly, while in the moment, his request is fulfilled and we danced silly dances in the living room. He just loves the sign for cheese! Thank God for the Signing Time team—Ronan taught himself sign language and will use them appropriately.
Another moment to warm my heart happened late one afternoon when we were snowed in. My typical kids had had enough of each other on this cold day. The movies weren’t entertaining anymore. Snacks weren’t tasty and it was time for the snow to melt so we could go back to a normal schedule. Just when they were reaching their boiling point, Ronan emerges from the playroom with a stack of blocks. He dumped them on the floor close to his siblings and plopped himself down. Ronan can stack a mean stack of blocks, any texture or size but doesn’t love to knock them down. It’s part of a sensory thing I think so he builds, runs away and expects someone else to do his dirty work of knocking down the tower. Ronan has learned to stick out his pointer finger for me to start the counting I do before I knock down his tower. I watched Ronan start this amazing parallel play situation and quietly cheered for him. All of a sudden, Ronan turned around, stuck that pointer finger out to initiate my count, “Ready….one, two, three, four…..five….” and HE knocked down the tower! Ronan squealed with delight and immediately rebuilt his tower. I stood in awe and prayed he could do this again. He did, three more times.
Ronan is quiet. Ronan is my hope. He is my reality and my dream. He makes me laugh and cry all in the same instant. He does what he can at his pace which is hard for me since I wonder how much more he might be able to do. Ronan tries to be. He tries to talk. He tries to play. He tries to be heard despite his silence. He is happy nonetheless and he is loved. Ronan gives me strength and he is a hero.
Cathy Jameson continues to look for answers and reads everything she can. Simple tasks give her hope that one day, someday, Ronan will be recovered.
Ronan is such an example to all of us. Thanks for sharing another story about him. Ronan is amazing and so is his mom.
Posted by: Melissa Crawford | February 04, 2009 at 10:34 AM
Thanks for supporting other moms and dads by sharing the good things you see in the smallest of accomplishments. Keep up the good work.
Posted by: Truman A. Moore | February 04, 2009 at 09:05 AM
Hello Cathy, my friend. Oh the tears....you write so eloquently and so beautifully. You inspire me to keep fighting harder, to be stronger and to keep on keepin' no matter what hurdles or walls may stand in our way! Thank you for sharing some of your journey with us, my dear, sweet friend! Many, many thanks!!
All our best,
Posted by: Lin | February 02, 2009 at 09:53 AM
Cathy, my Bella is preverbal. And now she is showing much more receptive speech - and she is gaining self help skills. Her voice is going to emerge. I don't care if she's 40 years old and says her first sentence. She's worth the effort. She's my child. I know you can relate.
Posted by: Stagmom | February 01, 2009 at 07:01 PM
What keeps us so hopeful is the discovery of more language opportunities this late in the game. While it's not verbal yet (and I say yet since we are so very hopeful for that to happen one day), it is communication.
Ronan signs many requests. They are usually one or two word phrases, but just in the last 2 to 3 weeks, Ronan signs in sentences! Several are, "I want cookie. I play peekaboo. I need juice." This past week alone, Ronan learned how to sign, "I love you." To make sure it wasn't just a one time deal, we removed the motivators we had been using to encourage foster interactions and waited days to see if Ronan's memory held the most wonderful expression we have been waiting for. From across the room, I said and signed, "Hey, Ronan, I love you." He looked up, signed carefully and returned an 'I love you' right back at me and came closer for a kiss and hug. Ronan's "love" sign is arms crossed over each other like a gangsta hug--so kid typical!
You can't beat that kind of progress--knowing "I" language, using a complete sentence and expressing an emotion followed up with a hug. Thanks for your comment and all that you've done to help a parent like me.
Posted by: Cathy Jameson | February 01, 2009 at 06:58 PM
Hi Cathy, what a wonderful post. reading about children who reach a plateau past the "cut-off," whatever that i supposed to be, always makes me think about donald t., case 1, who got the gold salts treatment at 12 for juvenile rheumatoid arthritis and then, according to his brother, made a miraculous recovery, both from jra and in terms of his most besetting autism symptoms -- went to college, etc... of course, every one is different, he had language although it was repetitive and third-person, and so on. but the idea that someone -- in fact, case 1 -- could experience a change at age 12 that allowed him to lead an independent and reasonably typical life is something i can't let go of. -- dan
Posted by: dan olmsted | February 01, 2009 at 05:53 PM
Thank you back for your kindness and thoughtfulness. In some ways, you're very lucky-- I'm one of those people who doesn't cry. It's awful. A friend put it really well-- it's like the IRS froze my emotional accounts. I think it's partly that memory of holding the children down, partly from a bunker mentality that the "spider" is still hiding in the room somewhere, still in positions of public health authority, still inflicting sincerity tests and can still round up families with dogs, etc. Hard to know when it's safe to thaw I guess. In any case, from this vantage point, it's far better to be emotive!
And you're right again-- so many fascinating names in the community and so much hope went into every one of them. Why would anyone name their child with something meaning, say, "the shining one" or "savior of mankind" if they expected this to happen, thought there was any chance of it? Finding meaning in atrocity is something real survivors do and of course we can try to fulfill the prophesy of these lovely names by trying to pass on the message. Your "little seal" can be the siren on the rocks that warns the ships from doom. But one thing that the community strives for is that all these children may have the choice (not the "obligation" or "duty to society"-- they've been through enough and society wasn't much help-- but the choice) one day to do this themselves, in their own words.
In some ways it would be less painful if we just scrapped that hope and got our pats on the head from mainstream peds for being unobstructive, good little silent victims along with our silenced children. Good thing many of us would sooner eat molten lava than give up.
Posted by: Gatogorra | February 01, 2009 at 04:12 PM
I'm so thankful I joined AoA...I don't post often but I always get inspired by what I read. Thank you for sharing about Ronan. Our son's name is Herman and it means soldier. It was also my husband's grandfather's name. When we were expcting him, we wanted to link our past with our future and now sometimes it's like we don't have a future (or don't want to go where it is heading.) Thanks also to all who commented here, esp. about biomedical therapies. We're constantly trying new biomedical interventions but several of these were new to me so into the queue they will go. :-)
Posted by: Amanda Blinn | February 01, 2009 at 03:06 AM
Stay strong, Cathy and have a damned good cry when you need to as well...your story is so much like ours...some days I can hardly function thinking that my son is going to be a perpetual 4 year old and other days he seems to have those big cognitive gains that allow you to start hoping again.
I also take heart after reading an article (can't remember who wrote it, but it was a neurologist who studied autistic kids) and he said that our kids continue to have cognitive growth long after the "cut off" point of 5, and in fact continue well into the later teen years. I can accept Xander taking the next 15 years to become all he can be...it helps keep me going.
Thank you for the story :) Hugs!!
Posted by: Julie Swenson | February 01, 2009 at 02:03 AM
Cathy - I love the way you write. Thank you so much for sharing pieces of your life with us through your stories. Very best wishes to Ronan. May his ability to express himself continue to grow. He sure has a beautiful smile.
Posted by: Twyla | February 01, 2009 at 01:31 AM
You are my hero. What beautiful triumph, imitating dad! Yeah!
I think our kids are waiting patiently for us to help them come out.
3 years into Josh's recovery when he said "Mom I can talk to you now!" it all clicked.
These kids are worthy of a destiny and a dream. There is more inside that there tattered bodies tell.
Just because they battle neurological static or physical ills doesn't mean a beautiful child isn't inside worthy of hope.
Thank God for mothers like you who are willing to turn over every last stone.
Patiently wait and then rejoice over even small gains.
The true warriors.
Hoping, dreaming and celebrating every moment with you Ronan!
Posted by: KarenAtlanta | February 01, 2009 at 01:23 AM
I thank you for putting into words what I have felt for so long--the final line of your comment'along came a spider' was the one that got me thinking how I just never expected to be where I am today. There are days I still cry about holding down Ronan for the vaccines, for not reading more about vaccines in general and just never realizing that some kids don't fit the one-size-fits-all vaccine schedule. On the other hand, we've always been so dang proud of Ronan's name since it is unique and truly was a tribute for my husband. Your comment summed up the last four years of my life!
Now, looking at that pesky spider, I would surely be living a different life if it hadn't come along. I look at it both positively and negatively.
The negatives include being introduced to a world I had no idea existed beyond what I read in books. I met one child with Kanner's autism over ten years ago (I had never met one prior.) I taught for over a decade (several grades, several schools, several states) and didn't have one student diagnosed with anything close to what I live and breathe daily. I've learned that parents are forced to change what society says is 'normal' while society then tries to shhh shush us if we raise our voices in concern. I'm looked at as a kooky parent who can't accept my own child for who he is. I know what it was like to be the parent of an NT child so why wouldn't I try to get more information or get back to what was normal.
On the positive side, I get to *meet* people like you here on this fantastic website to guide me, teach me and encourage me on the good days while also being able to hold me up on the really bad days. I was touched by your comment since the Warrior Child pictures hit so close to home--these absolutely gorgeous children are ours to protect and to share with the community. I don't think it's ironic that the names of the children are some of the strongest names around--they are constant reminders of what a hero truly is.
Ronan's path is in some way going to affect many, many people. I have no idea how far his life and his story will continue, but I do know that in continuing to tell his story, other families can appreciate and learn from who he was, who he is now and who he is yet to be.
You always have thoughtful comments. The one for me in my article in December touched my heart in a way that made me think about my pregnancy with Ronan waaaaaaaay long before he was born. We had such hopes and dreams that our little boy was going to be somebody special. I wanted to relive those fresh and free times and remind myself that silent as he is now, Ronan is going to make it through the mess that changed all of our lives. I am making up for his silence and hope that when I *speak* for Ronan in my writing, I too am helping others.
I am thankful that you, as well as many other parents, believe that these children are beautiful inside and out!
Posted by: Cathy Jameson | January 31, 2009 at 09:55 PM
What seems obvious to me by the beautiful names of so many of our kids that we as parents had *no idea* what was going to happen to them. And that this should not have happened to them either.
I really hope that your revelations provided some emotional relief or catharsis. I hate to think that my words might have brought you pain, though your expression of this is really a gift. I don't know whether to say I'm sorry! or to thank you for putting things so beautifully. Blessings to you and your family.
Posted by: Gatogorra | January 31, 2009 at 08:18 PM
I'm sorry for giving advice when it was not asked for, but as a dad, I can't read a story like yours without trying to help fix something, if possible.
Maybe trying a few of our most effective biomedical supplements can get your boy off his plateau.
My boy is almost 5, and still does not speak. However, we first realized that the biomedical approach was going to help about two days after starting him on lomatium dissectum (LD) tincture. At the time we started him, Andrew had virtually no eye contact, but within 2 days his eye contact greatly improved. For example, if I made a fun statement like "OH, WOW!! and smiled while I pushed him on his swing, he would meet my eyes with his and track my eyes through the full arc of the swing. He had never even attempted to do anything like that before.
We now give him 1 ml of tincture 3 times a day, and have been for almost a year, but we started off slow with 1/2 ml/ once a day and gradually built up, increasing the dose every week by 1/2 ml. At the time were ramping up, we did not know that a capsule of activated charcoal once a day can greatly decrease the negative impact of the die-off.
Every time we increased the dose of LD tincture, there would be a die-off period, for about a day or so, in which he seemed to have slight flu-like symptoms, but as soon as the die-off period was over we would see further improvements in interaction. It was pretty incredible.
At first we used an alcohol LD tincture, now we use a non-alcohol, gluten-free, LD tincture.
Regarding sensory integration issues, vision and fine motor skills, cod liver oil and Bethanechol has worked wonders for our boy. Andrew now gets 1 teaspoon of cod-liver oil 3 times a day and 5 mg of bethanechol in the morning when he gets up and 5 mg of bethanechol at 5 pm, three hours before bedtime. If you have not been giving your boy cod-liver oil, give him 2 teaspoons/day for two weeks before starting the bethanechol. Bethanechol requires a prescription.
Andrew's fine motor skills improved when his vision improved. His vision improved as a result of the cod-liver oil and bethanechol. He stopped looking at things using sideways glances, and started working with objects directly in front of him. For example, he fell in love with little tiny stickers which he could now pull off and stick places.
Regarding aggression and unwillingness to cooperate, if you have that problem, we found that our boy's testosterone was WAY high. Many autistics kids, even girls, have high testosterone levels. We now use spironolactone on a daily basis to block the effects of that testosterone until we can get can his mercury levels down and under control. I HIGHLY recomend getting your boy's testosterone levels checked and if they are high, using an appropriate dose of spironolactone to mitigate the effects. Spironolactone requires a prescription as well.
I just had to pass to you the three supplements from which we have seen the most dramatic improvements. We refer to them as our best heavy-hitters, and we have tried a lot. If you have not tried one of them, maybe now is the time. Since every child is different, please check with your doctor first.
I might add that bethanechol and spironolactone are the only pharmaceuticals my boy gets. His other supplements, and there are a lot of them, are all nutritional.
Posted by: John Hemenway | January 31, 2009 at 03:49 PM
The comment from Gatagorra from your last article has stuck in my mind too since I read it a while back. The part of the comment about seeing in the pictures of our children who they could have been (and will be). I think of that statement often when I look at a smiling picture of my Dean. I just thought of it a few days ago coincidentally.
This was a nice article. Keep the faith.
Posted by: Diane F. | January 31, 2009 at 03:32 PM
Just when I think there is no more strength to argue with one more person about helping this generation of children....
Thanks for the much needed re-fueling of spirit. Ronan sounds like a lovely boy with a fantastic mom/family. I so remember those hours of wondering if therapy would work, and so wanting to put away the colored shapes...did they REALLY have to go into the shape sorter correctly?? Aaaahhhhh....but also, those wonderful weeks when there would be an explosion of positive vs all the negative, and then suddenly everything was worth it, and tomorrow could be a new exciting day.
I wish there were more exciting days for all. We also have a recovered son, more or less.
Thank you for sharing Ronan's story. Here's to more Navy-seal like achievements like knocking down his towers!!!!!!!
Posted by: kathleen | January 31, 2009 at 03:15 PM
What a lovely essay, Cathy; you give others strength, too. How comforting to know that Ronan has parents who surround him with opportunities for joy and learning, and shelter him with their nurturing love. Thank you.
Posted by: nhokkanen | January 31, 2009 at 01:09 PM
Great story, Cat. It helps us who don't see Ronan every day to get to know him a little better. Thank, Mimi
Posted by: Mimi | January 31, 2009 at 12:48 PM
My husband was in the military also and received tons of vaccines and a mouth full of metal courtesy of the United States Government. We are several years older than you and have only now begun to realize the devastating effects of the metals on his health. Fortunately, our son got help early and is recovered, but we never really got how careful we would have to be until we read this book which basically takes everything I have learned in the past 7 years and explains it in one book in easy to understand language.
He calls our kid's condition "broken brains" and because he himself experienced it he does "get it". I highly recommend his newly released book "the Ultramind Solution" by Mark Hyman, M.D. It is 15.00 on Amazon and is a wealth of info. He also has several videos on U Tube.
I also highly recommend a good herbalist who can custom blend herbs for your child as well as a great homeopath who also custom blends. The results can be amazing. I think most of our kids are on way too many supplements and trying to get the body to work again should be paramount.
I wish you the best of luck....you truly deserve it.
Posted by: L | January 31, 2009 at 11:45 AM
We are none of us alone. I'm sooooo angry at what happened to my child, but I'm equally angry at what happened to yours. Thank you Cathy for sharing this story with us.
Posted by: chrissie | January 31, 2009 at 09:57 AM
(((HUGS))) Cathy. Thank you so much for sharing your story!
Posted by: Jenni Byrd | January 31, 2009 at 09:07 AM
Cathy - Thank you for your story. Your story makes me realize that the thousands and thousands of other families that are on this long journey are not alone.
May God bless your family.
Posted by: Garry | January 31, 2009 at 08:05 AM
Posted by: Holly M. | January 31, 2009 at 05:42 AM