Giving Up
By Cathy Jameson
I’m working through a grudge-like attitude. Grudge-like because I usually don’t hold grudges. They aren’t healthy. They aren’t productive. They take up too much time. Plus, the older Ronan gets the less time I have to waste on other’s affairs. I’ve experienced one or two grudges long ago, but that was when I was much younger. The few times a grudge would muscle its way into my thoughts I felt like I had to constantly look over my shoulder. I worried about my next step, afraid of who’d be watching it. Too much thought went into why I was angry at whoever hurt my feelings. I stopped my normal routine to avoid people and uneasy conversations. I rerouted myself through town to steer clear of running into my offender. It took strategy to be a recluse which is quite the opposite of how I’m normally out there living life fully. But, the longer I held onto the bitter thoughts from the grudge, the angrier and more avoidant I became.
I knew I had to stop my destructive attitude because that old phrase “forgive and forget” started to haunt me. It made me pause and wonder, “What in the heck happened in the first place to cause this rotten attitude?!” I didn’t like how I was feeling or living. I needed to end this problem quickly. Once I was able to let the grudge go, and say good riddance to the former friend that caused the unwanted negative emotion, I felt better, stronger and more at peace. I got back to living again. Bygones were forgotten. Life rolled on.
Thankfully I saw that I could still change my attitude for the better. Not everyone is that lucky. Some grudges last for years and years only ending when the other person is in a state of ill-health or on their death bed. When too much time wedges in it becomes too hard to let go of the past and the negative feelings. Instead of cleansing the spirit in an attempt to make amends, a sinking feeling sets in. A lifting of the spirit can’t occur which means a sense of peace won’t be felt. Instead of moving forward, a grudge consumes any bit of happiness that might be trying to break through. Feeling better, stronger and happier are taken over by feelings of being stuck, destroyed, doomed and down-right miserable.
Do you go down fighting or hope someone throws you a lifeline?
I feel like most of the last seven years have been fighting. I’ve been fighting for Ronan to live and to be able to learn. I’m also trying to just let him be—be happy, be healthy, be himself. It isn’t easy to maintain a sense of constant hope and happy when lots of extra stuff gets in the way: the sensory stuff at a dental exam preventing an actual exam, the behavioral stuff that prohibits attending Church as a family, the emotional stuff that shouldn’t bowl me over but does. I guess all that stuff, plus the surprise!-you-thought-you-were-making-headway-but-you’re-not stuff boils inside like a mini volcano waiting to erupt at the worst possible moment. Those are the moments I’d rather skip over, but I end up festering, stewing and boiling because of them. What creeps in? A grudge. I admit it stirs up every emotion. It snuffs every happy, joyful, can’t-believe-it moments. It sits waiting for something to go wrong. It waits to show up after I’m reminded of how far behind Ronan’s development is. It rears its ugly head when Ronan just can’t do what is so easy for so many others. That grudge flashes right before my eyes when I see typical boys doing typical things as they cross my path. Look at those typical human beings with nary a problem! Look at them skateboard down my street. Those typical kids with their cool clothing and fun friends know nothing of what their peer can’t do. Why did normal happen to them and skip right over my son?
Ronan has two major medical appointments coming up. Both scheduled because of his special needs. Both will cost an arm, leg and then some. Both appointments will require great patience on his part. He’ll pay for his fear with many tears as I look on with bravery as I stifle tears of sadness, woe and a little bit of anger in my heart. I could go on and on about how I think Ronan ended up with an arsenal of specialists we see yearly. I could go on and on about how medical appointments and Ronan’s therapy schedule is like a revolving door of busy, frustrated, costly and hopefully hopeful but sometimes isn’t. It requires so much more work than I ever expected. It might sound like I do have some sort of grudge about what happened to Ronan. Well, I kind of do.
Even though I’ve had a few years’ worth of experience as Ronan’s Mom, handling the negatives and the I-can’t-believe-this-is-still-happening emotions remains a challenge. I can’t help but get a little upset when I remember parts of Ronan’s early years were not a struggle. I can’t help but notice his current struggles and how they seriously delay growth and development. I can’t help but reflect on what I would do differently. Daily reminders of how much time we lost with useless therapists, other people’s rotten attitudes and lazy providers sometimes rue the day. Just like with any emotional trauma, I’ve got to learn how to curb those feelings and redirect my emotions. If I don’t, I know I won’t be able to put one foot in front of the other to get through the tough days.
Granted there are times that I am unable to push through the anger, resentment and disappointment on a “woe is me” sort of day. That’s when it feels like the negative side of life purposefully dumps everything out of my usual ‘glass-is-half-full’ outlook. I know I am not alone with these feelings. When I look through my cell phone call log, or peek through my email inbox, I see that I’ve got several lifelines to get me through whatever’s trying to bring me down. They include parents from across the nation and others who are scattered across the globe. Countless people I’ve met who have a child like mine flood my thoughts. Just when I think I just can’t do this anymore I have people to carry me with their thoughts, hopes and prayers. They jump right in to get me through. They make me do what I perceive as impossible. They believe in me, in us as a community and always in our children. Collectively we hold strong to that attitude because if we don’t believe in our children, their lives might crumble, too.
Ronan’s great needs have been here for quite some time. I’ve learned so much from him. I should be used to all of Ronan’s needs by now. None of this is easy. None of it is fair. But, it’s what I have to work through. I will not let my own emotions destroy Ronan’s chance at improving. He’s too important and worthy of every positive emotion and action I can give. As for the negative? I am trying to give up the sad, the angry and the resentment. I have stopped letting the nay sayers poison my thoughts. I have diminished much of the sour attitude that likes to brings me down. I am slowly giving all of that up so I can focus better. Oh, to be only focused on the hope and the happiness my child brings me—what a cleansing that will be! It may take a little bit of time to fully purify my thoughts, but I do believe I can do that. Ronan didn’t do anything to deserve the struggle. He didn’t ask to live a life that sometimes seems impossible to live. As long as I don’t give up the strength he gives me, as long as I continue to lean on the people who are willing to hold my hand as I fight for Ronan, I think we’ll all get to where we need to go. Together we are a force. And, together we will always be stronger because of what happened to our children.
Cathy Jameson is a Contributing Editor for Age of Autism.
Hi Cherry -- Thanks for responding to my post. Yes, we have tried chelation -- several different methods. His porphyrin testing results showed that he did have a body burden of mercury, and we were able to remove that with chelation, but it didn't seem to make much of a difference with his autism. I don't think we were ever able to pull the mercury from his brain.
I can't think of a biomedical intervention that we didn't try! diets, supplements, chelation, methyl-B 12, allergy testing and therapy, etc. We've worked with several DAN doctors and done various protocols. I certainly agree with you about needing to get at problems at the root. For one reason or another, it hasn't worked with us, although I do think he has made more progress than if we hadn't done intervention.
Posted by: Aimee Doyle | May 30, 2012 at 03:30 PM
Benedetta, I think that as a general rule, the people involved would have to sincerely repent in order to be forgiven. They would have to be sorry for what they did - not sorry that they were found out and be asking for forgiveness in order to try to avoid the consequences of their actions.
Personally, I am not very likely to forgive any of them. But I am not going to spend much time dwelling on that; it will not help me to improve my daughter's health and functioning.
Posted by: Carolyn M | May 29, 2012 at 05:23 PM
In the Bible we are commanded to forgive.
I am not real sure on this one - but you don't have tooooo unless they ask for your forgiveness.
So, untill a lot of people involved in this mess comes to my door - I don't have to worry about trying to forgive them.
But I do have to work on not letting me hate them so bad, or be so angry with them that it makes me sick. I won't let them take that much energy from me.
Posted by: Benedetta | May 29, 2012 at 12:06 PM
I'm a Dad & forgiveness is not an option . Forgetting is not an option . My aim is to destroy the vaccine business .
I never planned to know so much about vaccines\immunology , it wasn't smthg I was interested in . I didnt want any part of this war . But they came to me . Even the mere mention of their names , the characters in this battle , makes my blood boil . The force of our opinion is so much greater than our opposition . We fight them for free - no-one is paying us .
Posted by: Simpson Wood | May 29, 2012 at 09:21 AM
I would like to read more stories of recovery. My daughter is 25 years old. She is picking up new words some really tough ones like "pencil sharpener". Having lived with autism for 23 of her 25 years, my daughter is not likely to "recover", yet, she has undeniably progressed in terms of her social and communication skills. How far can she reach? My innate optimism has allowed me to focus and build on Stephanie's gains no matter how small. How many of you have adult kids with regressive autism?
Posted by: Marie-Anne Denayer | May 29, 2012 at 04:10 AM
Cathy wonderful and true words that brought tears to my eyes.
My anger still gets the best of me and my heart still breaks when I look into my very handsome, 26 year old son's eyes and think "why him".
When I see the boys he went to school with, now men, embarking on careers, marriage and families it breaks my heart. I even slip sometimes and wonder what kind of girl he might have married, then smile as I believe he would have been an amazing dad because he is so sweet, and kind and loving.
I also sometimes feel so full of rage and hate for those who KNEW, or who should have known about vaccines and autoimmune disorders and how that can be dangerous. This never ever should have happened to my baby. He shouldn't have to pay the price for the rest of his life, which in our family could be is 80s or 90s. That is when the thought of him being extremely elderly and all alone sends me over the edge. The pain makes my heart want to explode.
I don't know what else to say except thanks Cathy for writing what so many feel.
Posted by: Jan | May 28, 2012 at 12:04 PM
I pray there is a cure for Ronan. It might not come from autism research but from somewhere else. Maybe there is a gut anti-biotic or maybe it's drinking volvic water. I just believe that one day you'll find it.
Posted by: Kapoore | May 28, 2012 at 10:11 AM
To Aimee Doyle, Through all those years of therapy and treatments, did you try to remove the mercury from your son. ? Now I know that I may offend some people here and provoke anger- and I am aware that I am not and have never walked in your shoes ... but to me it just looks like a lot of the therapy, even if done well, would be like taking a person with one leg and no hope of getting a prosthesis, and saying cheerfully: "Come here Charlie, Im a therapist and Im going to teach you to walk!" My point is that if you dont remove the cause of the disorder, you cant expect improvement in the disorder just by therapy" And worse yet, there are probably still thousands of families out there who are still givng their autistic kids vaccines with mercury and feeding them fish and food with high fructose corn syrup. I realize that if someone has spent a lot of money and emotional energy on the therapies, they may not like to hear this, but nevertheless, if it can benefit even one child, this needs to be talked about.
The person who does the therapies is also highly invested emotionally in his work. He says, "You have to start young! You cant waste time !" But from my perspective, he may be preventing that parent from doing the medical therapies that would remove the cause of the disorder. Not actively preventing, of course, but when a parent thinks that therapies are what has to be done, he may not even look at the biomedical. That is certainly what I see here in New Delhi, but Im sure it happens in the U.S. also.
No doubt, some would respond that they saw their child improve with therapy. Well, I see kids make great improvements without therapy or minimal therapy, so I attribute that to the natural movement of mercury out of the child's body . That might not happen, however, in cases where the child might be very deficient in the ability to excrete mercury.
Hope Im not offending anyone here, but I believe that in the interests of the kids, little should be off the table.
Posted by: Cherry Sperlin Misra | May 28, 2012 at 09:36 AM
Eloquent, personal, authentic. Thank you for posting. My son has pretty much recovered and I give back to the community but you remind me that I cannot leave this community and I have to enable the transformation to find the causes and deter the increasing prevalence numbers. We're no longer alone, but we are too many in number. More research, more getting to what is so exactly how it is. Thank you for reminding me who we all are, doing our best in the face of what sometimes feels like no results. Keep on because its never too late.
Posted by: MotherofPossibility | May 27, 2012 at 08:59 PM
Pamela,
I feel exactly like you over our recovered son who is about to turn 13. I want to be exuberant over the gift of recovery, but I can't without a lump in my throat because so many families and children are still suffering. Same reason why I can not walk away from the autism community. . .they are my family and we are in this together. There are days when I worry about my son's future, mostly social stuff, but we are grateful. Cathy I feel what you feel almost as though we are part of a large connected mindset. Perhaps we are.
Posted by: Mary | May 27, 2012 at 07:56 PM
Thank you Cathy. Thank you, too, Pamela. Our son is 15, not recovered yet so much more functional than when, severely metal poisoned, he could not walk, drooled constantly, could not feed himself, was not at all independent on the potty. I get grudgy and this blog helps me get back to thanking God for my beautiful son. Amanda
Posted by: Amanda Blinn | May 27, 2012 at 05:37 PM
Hi Cathy -- I know so well how you feel. My son is 22 and since he was diagnosed at age 4, we have tried everyting -- all the biomedical therapies out there, the usual speech-OT-sensory integration -auditory integration --music and art therapy -- adapted sports and special olympics -- 18 years of special education -applied behavioral analysis (the full "Lovaas" program), alternative therapies like homeopathy, craniosacral and acupuncture. It has been so long, so hard, and so expensives (hundreds of thousands of dollars) and yet I have a son who is still very impaired. We're dealing with a resurgence of difficult behaviors right now -- lots of yelling, hitting himself, and hitting others.
I've learned a lot. I've grown a lot. I've met incredible people. My daughter and my husband are awesome. But still I sometimes get down. Maybe this time it's because my nephew, who is the same age as my son, got married last weekend. I've been in a funk all week.
But I know I will pull out of it and then focus on the next thing. I will never ever give up on my son. I just wish there were more out there for adolescents and adults on the lower end of the spectrum. Lots of drugs, but not much else, and not much interest in researching for that population. But maybe (so sadly as the autistic population ages) there will be more efforts made in that direction.
Posted by: Aimee Doyle | May 27, 2012 at 03:17 PM
Cathy, I have experienced every emotion that you outline here yet I came out the other side with a "recovered" daughter. We still have minor challenges and I still worry about every "next stage" of her life, like puberty, and worry "will there be new problems coming her way?"..."will she do what she needs to do to take care of herself when I am not longer the one in control."
But right now I can say all our hopes and dreams have been answered. And while I am SO VERY grateful for my daughters healing and recovery...I feel GUILTY....a strange survivors guilt. For me, the journey was a deeply spiritual one and as a spiritual person I constantly ask God, "why don't ALL the other families who work as hard or harder than we have get that same recovery?" That question pains me to the deepest recesses of my soul. Cathy, I love you and all the Moms who are giving every bit of yourselves to help your babies. You will remain in my prayers until EVERY child is healed and until the assault on our children ends. In the meantime, I will do everything I can, in the places God puts me, as "just one little person" to try and effect change.
Posted by: Pamela | May 27, 2012 at 01:25 PM
The Moving Finger writes; and, having writ,
Moves on: nor all thy Piety nor Wit
Shall lure it back to cancel half a Line,
Nor all thy Tears wash out a Word of it.
- The Rubáiyát of Omar Khayyám:
Posted by: Ted Van Oosbree | May 27, 2012 at 12:39 PM
Cathy-you have expressed so beautifully all the emotions that parents like us experience! We will never give up on our special children and may God Bless each and every one!
Posted by: Gayle | May 27, 2012 at 09:37 AM