Freedom
By Cathy Jameson
As I was sitting in my church pew last week feeling sorry for myself, I felt as if I got hit over the head. I don’t know how he does it, but it feels as if my priest is speaking directly to me when I’m sliding into a mental funk. He has a way of knocking much-needed sense into me when I least expect it. Apparently, I needed a good smack upside my head since last weekend’s homily was no exception.
I have constantly struggled with having and not having a diagnosis for Ronan. Clearly the child has some issues. A few years ago I was only worried about finding out what to call it. I had settled for vaccine-induced autism but had a nagging feeling it was more than that. Was it a deadly chromosomal abnormality? Maybe it was epilepsy? Was it really autism? Could it be one of those mitochondrial diseases? We’ve asked top-rated doctors, conducted über-expensive testing and finally did receive a diagnosis. I thought I would be able to accept Ronan’s mitochondrial disease diagnosis for it took years to be identified. I’d waited a long time to hear an official diagnosis but I didn’t expect to hear that it had features of autism. Great. It’s one thing but acts like another.
Not a day goes by without my thinking, is it just autism though? I can recall doing massive web searches back in the early 2000s when Ronan was a toddler. I distinctly remember reading about autism and thought to myself, no, that’s not my son. I even went so far as hoping it would rather be more like Asperger’s, not just autism, because children with Asperger’s had higher levels of language abilities. I looked further at what the spectrum included and thought, w-e-l-l, maybe it is autism but then Ronan was never 100% fully on that spectrum all the time. He would swing back and forth with one day being more cognitively aware than another. He has words but uses them oh, so sparingly. He can take apart many things but hasn’t the fine motor capability or patience to put things back together yet. As Ronan spiraled further away from me and deeper into whatever it was that he had, my thoughts were of what Ronan couldn’t do, and I couldn’t free myself from those thoughts.
Little did I know that what I sought was freedom from some negative aspects of being Ronan’s Mom. I’d love to have freedom from a diagnosis, any diagnosis. I yearn to be free of the stressors of being full-time advocate to a little boy with all his special needs. I ache to be liberated from the worry, the pain, the limitation, the speculations and the judgment of others. That type of freedom, freedom from, holds me back from the freedom to.
Imagine where Ronan would be if I didn’t realize I have the freedom to voice my concerns. How much farther behind would he be if I didn’t have freedom to challenge his providers for better health care and education? I have the freedom to question those who shouldn’t have the power but, nevertheless who make decisions for Ronan. I have the freedom to be pro-active. I have the freedom to be annoying, to be loud and to be demanding when it comes to helping me help Ronan. I also have freedom to change my pessimistic thoughts to optimistic desires. The freedom to be and to do is much more liberating than freedom from.
I have always wanted to make things better, to right the wrongs with Ronan and his needs. I reflected on some of the choices I’ve made that turned our world upside. I chose to listen to the recommended vaccine schedule. I chose to hold Ronan down for his shots. I chose to not question a doctor we saw in 2005 who knew about mitochondrial diseases, He could have helped if he’d just stop talking and instead listened to me—I was afraid of his white lab coat position and couldn’t see past his credentials even though my son fit the mito profile all those years ago. Imagine how much we’ve gone through didn’t have to be because that doctor wouldn’t listen. As time went on I chose to ignore early signs of developmental delays and left them nagging at me instead. I chose to be free from the pain I would endure had I pursued a diagnosis sooner. I chose to be free from the changes I would have to take if said diagnosis was autism.
Freedom to choose what is right, which includes making Ronan’s life better, has always been a priority; I just didn’t know that it included so much. I know I can rid myself of the thoughts of being confined to a diagnosis written in Ronan’s medical record. A piece of paper that says one thing, and includes what Ronan may never do, means nothing compared to watching him grow and learn. Bit by bit, Ronan is progressing which gives me freedom to celebrate. I know he has it in him to do more—he’s “talking back” to me when I ask him to do something. He’s verbally responding, albeit garbled speech, but he’s able to tell me with a bit of an attitude that the chore I just asked him to do is not what he wanted to do…so there.
Freedom to gives me that chance to be in control of what I need to know and do for Ronan—to be aware that his limitations do slow him down. It gives me time to find something or someone else willing and able to work with whom he is now and where he’s going.
With all of my thoughts spinning around after church, I had an epiphany: I bet Ronan can talk. I mean talk in sentences instead of the word here and another there. I asked him, “Hey, can you talk?” The look on that kid’s face said it all. He smiled a coy smile like he’d been caught with his hands in the cookie jar. He looked straight into my eyes, smiled, looked away and said, “Ahhhhhhh!!” I made him look at me again. “Ronan! Can you talk?” He smiled again. I changed my question and asked, “Do you want to talk?” He immediately signed, “No.” I hugged him right there on the spot. He is free to speak but maybe he just doesn’t have the need or desire right now.
Whether he’s aware of them or not, Ronan gives me lots of choices. While it’s not what I would have anticipated as a parent, I do appreciate the freedom to choose to be a better Mom to Ronan. I never knew how much strength it would take to put his needs first. Freedom from his needs or freedom to make those needs easier to handle…every day I will celebrate the chance to do things better.
--
Cathy Jameson is a Contributing Editor for Age of Autism
Cat - Good luck with the device eval. I worked tirelessly for 2 yrs. to plant and grow the seed with his school that this was the way to go for my son, after years of failed progress with signing, PECS, etc. in a verbal behavior based classroom. Everyone is beyond thrilled with how quickly he took to his Vantage, and I anticipate years of growth with it as he learns to navigate it. I was so inspired by the young man AoA showed using his to give his graduation speech last week. These devices really are remarkable in showcasing the children's skills!
Posted by: Tracy McDermott | July 06, 2010 at 09:08 AM
Tracy, Ronan goes for an aug comm device eval in the next few weeks. I get giddy thinking about what he might be able to express if given more communication options.
I used to pray asking God to please allow Ronan to talk. That was so long ago--over the years it depressed me to hear no speech, attempted speech and then this sporadic speech. My Mom said to me to be specific with my prayers so I changed my prayer to ask for Ronan to be able to communicate better. Wouldn't you know it...Ronan started to use sign language so quickly and with more confidence. It was instant communication for him and us with his world opening up more.
Thanks for sharing your story. I ride an emotional roller coaster most days--after reading about your son, wow, I feel like I'm at the top of the hill about to squeal, Weeeeeee! What a treat to read.
Cat
Posted by: Cathy Jameson | July 05, 2010 at 10:27 PM
Wonderful article! Hits home on many levels of my journey. My son was clearly vaccine reactive at 12 mos. old, and diagnosed with Autism by 20 mos. (though I knew at 14 mos. took me an additional six to get anyone to listen to me). We initiated biomedical interventions immediatly and healthwise, have resolved a lot. Cognitive progress has been much slower, but steady none the less.
My son remains nonverbal (will be 8 this month). Once, while tucking him into bed, I whispered to him that I wanted him to talk so badly, and he looked at me with panic stricken eyes, grabbed my neck in a death grip hug and burst into tears. I was astounded by the reaction and have never uttered such a statement to him again. In that moment, I understood that given the choice, he too would like to talk, but can't. That was several years ago, and the past six months we have begun using the Vantage communication device. My little boy is a hoot on it, talk about giving a child a voice. His requesting is up tenfold, and his "side comments" can stop you in your tracks (remember, 7 yrs of not knowing what he is thinking and out pops "feeling awesome!"). I no longer allow the wish of "speech" to nag me as I fall asleep, but instead pray that he continues to learn to communicate with us. "Talk" is actually his play icon of choice lately, and I giggle to myself everytime he hits it. It's as though he does it just to "nag" me, lol, like "hey mom, this is what you wanted!"
A few months ago he asked for a Priest on the device. And although I got a good chuckle out of it, I realized we hadn't been to church in almost two months due to an excuse laden schedule. Seems He speaks through all of us and our job is to listen!
Posted by: Tracy McDermott | July 05, 2010 at 01:14 PM
Like Autism Grandma, I struggled with feeling very patriotic today. I feel so angry and played the fool as I too held my children down for all of the recommended shots plus a flu shot in the first year. Our pastor also hit me over the head when he talked about letting go of that anger and using it for something good. I decided today to begin faithfullly praying for our nation. That is my something good and I hope it makes a difference.
Posted by: Tracey | July 05, 2010 at 05:22 AM
Sometimes the Land of What Isn't exerts such a powerful pull. It takes a strong will (or divine intervention) to redirect ourselves back to the Land of What Can Be.
Sounds like Ronan is sitting on a sizeable savings account of unspoken words. And being thrifty about how he uses them. Clever fellow.
Posted by: nhokkanen | July 04, 2010 at 11:24 PM
I am thinking of my father who died in 1992 today, on "Independence" Day because this was a day we always celebrated military style due to my father's Air Force career. All that patriotic music still gets to me and brings tears to my eyes remembering how proud I was growing up to be an "American", and grateful to be living in a "democratic" nation with "freedoms" and constitutional rights, instead of those other forms of government that we all learned about in history class: Communism, Nazism, Dictatorships....
When I was a child growing up, I did not realize that we the voting public really don't have the power to do much of anything compared to the Big Industries who buy congressmen to vote in whatever they want for thier own financial benefit with no regard to the damaging effects on the human population. Looking back I can see that my father tried to convey this to me, even in grade school the day that President Kennedy was shot, he told me, "They had him killed because he was trying to change the bad things in our country."
My father always was disturbed and angered by the corruption and dishonesty in politics in America as well as the rest of the world. However, he was still proud of his country in relation to his "fellow countrymen", everyday people he met along the way who were good people, just trying to take care of their families and survive in this world.
I wonder what my father would think of his many years spent serving this country and defending this nation's government now? I do know this for a certainty...If he was still alive and I shared with him the knowledge of what this government has allowed to occur and has actually supported in the realm of vaccines to the extent of health injuries to many millions of innocent children he would take that military uniform out in the backyard and burn it. If he ever saw what happened to his great grandson his heart would be forever broken, not just for his "own" but for all of the children who have paid the price for living in America.
In spite of all this, when my mother sent me a Military Tribute by Gene Simmons at a USO event on YouTube, I almost didn't look at it, but now I am glad that I did. That music was so full of memories of "the Good Ol' Days" and in seeing the smiling faces of all of the soldiers in the audience who were joyfully and proudly singing along, I thought of my idealistic youth and the happiness I once had in not understanding what was really going on. Even though this government does not deserve their service, these military men deserve our appreciation for their dedication and sacrifices, which includes all of them being vaccinated to a much larger degree than the civilian public. Sadly their children are paying the price for this and so are they.
Here is the rocked out military tribute by Gene Simmons (who thankfully did not wear his KISS outfit!!!)
http://www.youtube.com/watch?v=5MtdIO23MKM
Posted by: Autism Grandma | July 04, 2010 at 07:32 PM
We all do what we think is best for our children at the time,
We all use drastic measures at times out of frustration, guilt, exhaustion or pain,
We can all look back and wonder 'Should I have done things differently?'
We can all regret things we've done,
But ultimately it's a learning curve for us all,
Our children are beautiful,
They help us realise what's important in life and to trust in our gut feelings,
They make us stronger through our pain, love and frustration,
Don't feel guilt,
Know you have always done what you believed was best at the time (even holding your child down for vaccines, as you believed it was to protect them from harm not cause them it!),
Life is a continuous learning curve for us all,
We can receive strength from our experiences to help our children reach their full potential and get the best they can out of life,
Then we can help and support each other, whilst knowing we have done the best we can with the knowledge we have been given at that moment in time....
It's hard work but its worth it in the end....just to hear that word, or see that smile, or see a glimps of progress... the smallest step is a huge joy...
Please don't feel guilty, no one is perfect, there is no right or wrong way... There is only 'the best we can do way!'
My daughter has had most therapies in some form or another and is now able enough to know she is different - she doesn't want to be autistic - she wants to be the same as her peers.... Yes I am lucky she has made such progress, so this must be easy for me to say, I hear you say?.... but had I not worked so hard with her and let her stay in her own world, maybe she wouldn't be so sad and wouldn't understand her differences and would be happy not knowing any different?.....The mental torment, the heart ache of knowing she feels left out, she doesn't quite fit in, the pain of watching others snigger at her attempts to be sociable and her want to join in...
Older more able say why do you want to 'change' us? why do you want to find out what causes autism? To illiminate us at birth? To make us 'normal?'Whats's normal? Who specifies this word? Yes us parents want to find out... we want to help our children but not for those reasons... because we love our children and want them to join us in our world, but is our world that wonderful? It's judgemental... It's cruel? It's greedy.... It's vain.... But we still want that interaction with our children.....
Dammed if you do and dammed if you don't!
So I just have to accept I did what I could, what I thought was best and now I have to do the same to help her accept her difference and love herself for the beautiful daughter she is......
I hope this is helpful.....I just felt I had to write it....
Posted by: Autimum | July 04, 2010 at 06:03 PM
Freedom, at times, seems to be a curse. I am at a place now where the freedom to stay or go, the freedom to try or not try, the freedom to ignore Ben's developmental issues or to focus on them has become one of those, "I need to sit in church and hear God's voice" moments. I sit, I worry, what's the right thing to do. The curse is it is my choice, it's up to me. Do I accept autism or do everything I can to destroy it? Knowing that if I chose to destroy it, only one of us is going to make it out alive. In this particular choice there is only one answer, no take backs, no changing horses mid-stream. If I back down, I fail Ben.
Sometimes in my life I just want to be told what to do, sometimes the the hardest thing in life is being responsible and courageous enough to take on the freedom we are all given and make the tough choices.
There are those that would silence AoA, all those posting, those critical of vaccines, of the CDC, FDA, NIH etc, all those of us who know something happened and won't accept the idea that it is a coincidence. Im sure there are meetings that take place where ideas are developed and plans put into place in order to reject, threaten, dilute, and conspire against our freedoms in a manner that is financed by tax dollars.
Yes there are times when I would gladly yield my freedom just to escape the responsibility of having to make difficult choices on my own and being accountable for them but when I look at the alternative and when I think about why our forefathers died on battlefields I feel like a coward, I feel like one of them, one of those who choose to accept the assault committed against our kids.
I have made my decision thanks to AoA, and all those who so selflessly post here sharing their lives and fears and joys and experiences. All of you have given me freedom, or at least showed me what it is like and pointed me in the right direction.
Posted by: bensmyson | July 04, 2010 at 04:14 PM
Hi Space kitty;
My husband has acquired mito according to Dr. Shoffner of Emory clinic.
Acquired as in given to him, induced as by something in the tetanus shot, as his son has acquired mitro as induced,or caused by the DPT shot.
Acquired as not found by any genetic basis, not inherited as from the mother as the most common mitros are. Not inherited from the father as lesser known mitro sometimes come from. Caused by a poison, caused by something in the environment.
Acquired mitro starts first with the environment.
A researcher from Pfizer just put out a book that tells all the medications that cause mitro disfunction. He says they have been testing these medicines wrong for years. They were growing up cells on a rich glucose medium and because of that the mitro problems did not show up. He said you could guess which ones though, by looking at the complaints of certain medicines. Do they cause liver damage or problems - then they are most likely mitro posioners. One of those are Tylenol.
So, a poison, if your body can get rid of it then why can you not get better, make more mitochondria. Perhaps some do. Perhaps it turns on an auto immune disease that will continue to make them sick. Maybe that poison cannot be ellimanated from the body and will continue to interfer with the mitro.
I found a website once upon a time that listed the different types of adjuvants and there was one whole section of adjuvants under the label of mitrochondrial inhibitors/ disruptors. I have not been able to find it since???
Posted by: Benedetta | July 04, 2010 at 01:19 PM
Sniff-- Cathy-- so beautiful. It also makes me think that we need to guard the freedoms we're supposed to have in this country, what freedoms we have left to help our children. Others will benefit from what we do in this regard.
All power to you and thank you so much for the thoughts. Hope your 4th is very liberating; your family has earned it.
Posted by: Adriana | July 04, 2010 at 12:03 PM
You said your son has mito issues.... Do you and your husband have them? I heard that Hannah Poling has mito issues, but her parents do not. Since mito defect is genetic, where did Hannah's mito defect come from? My question is.... does aborted fetal DNA have the genes for mito defect?
Posted by: spacekitty | July 04, 2010 at 11:15 AM
Sounds like we all ran into doctors that talked fast, did not listen, had their hand on the door knob as we told them in hurried breath that the last shot caused him to spike a high temperature, pass out, and gasp for breath.
I use to be ashamed I let the doctors talk me into those shots again and again. I was ashamed that I let higher education - professors - experts in their fields teach me vaccines was a modern marvel to be worshiped. I am over that shame for I look back and realize what is one young mother alone againest a whole medical society?
But I am still ashamed of how I got my son to talk. That is an emotional scar on my heart that I will have till I die.
After months of complete silence - I realized he was getting worse not better. He had even stopped what few words he did say every once in a while to even more silence. I used my son's emotion of anger and hurt to get him to speak.
I asked him if he could talk. He said nothing but I could see in his eyes awareness. I told him that he needed to speak because he was a boy, if he did not speak then he was a dog, an animal, he had to choose. He became mad and hurt, tears swelled up in his eyes, he was angry and hurt all at the same time. He struggled to speak. He moved his tongue, his lips, he swallowed several times, and from his eyes I could see he was thinking hard.
His first words I heard out of him in over a year was also his first entire sentence --The sentence was "I am not a dog." He was five years old. Nothing that sweet should also be that bitter, but I suppose that is life.
He spoke, but only after I had to invoke an intense emotion from him to get those words. I still feel ashamed, but it meant he could speak, and I think he needed to know he could speak too. Could I have done it another way a better way? I always will wonder?
Posted by: Benedetta | July 04, 2010 at 09:35 AM
Cathy, My son was so similar. I knew something was wrong, but it just wasn't autism. Maybe Aspergers, but he had lost speech, so that didn't seem right either. Definately ADHD! He was such a wild child as a toddler. We discovered food colorings caused extreme hyper behavior at first. That led me on the trail to nutrition and zinc supplements helped control the agressive behaviors. Then he was diagnosed with asthma and thyroid problems. He had awful allergies. Drug after drug was prescribed. Nothing controlled the asthma. I had been looking at Kirby's book at the bookstore. Finally I bought it, as it's siren song was too great for me to resist. Somewhere, about 2/3 through the book, he was talking about the MTHFR gene and autism. I pulled out some old labs on me, trying to find out why I was inexplicably infertile after having my son, and there it was - I had the mutation.
As I continued to read, I learned about Thoughtful House. I called them and asked if they could help my son with his health problems even though we didn't have an autism diagnosis. They said yes! It has made such a difference in his health. The asthma finally under control.
Spring forward to 2008. I hear about Hannah Poling and find out one of the docotrs, Dr. Frye, is right here in Houston. My son sounded so much like Hannah, just not as severely affected. He had so many difficulties with so many organs.By this time we had the Asperger's diagnosis. In 2009, we did the muscle biopsy and it is confirmed, mitochondrial dysfunction. In 2010, the school district finally agreed he is autistic as well ( he is in mainstream classroom and gets decent grades, but needs lots of mods and understanding).
So, now, nearly 12 years later, we have diagnosis. We start therapy for the mito, but he cannot take carnitine in any form, it causes severe headaches and stomach aches and double vision. The doc says there is so much toxic buildup in his cells and it is coming out to fast! We also find out that the occasional steroids for his asthma cause rhabdomyolisis ( muscle breakdown). It is always something new.
I read your story and so many emotions came over me. I too held my child down for his shots, thinking I was doing something good for him. We watched him lose language after the MMR, but the pediatrician said it was normal. HUH? He was an only child and we just did not have a lot to compare to. I feel like we wasted so much time!
One moment, I want to claim triumph, and tell the dense doctors before that "SEE, I told you my child was sick!" and the next I want to cry in despair for happy childhood lost, uncluttered by vitamins and B12 shots, creams at night, and continual doctor visits. He knows he is different, yet yearns to be just like the other kids.
Yet, I will never give up. I have promised to be by his side someday when he has children, to make sure they are never given the shots that harmed him.
Posted by: Laura Cox | July 04, 2010 at 09:27 AM