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Best of AofA: The Others. Siblings and Autism

LostManaging Editor's Note: Cathy is on a summer sabbatical with her five kids. This post is from May of 2009. Enjoy.

By Cathy Jameson

Once a week, I try to watch one of my husband’s ‘must see’ television shows with him. I don’t like to watch “LOST” on my own since it’s got some freaky twists and turns in the plot and an eerie violin playing in the background for those cliff hanger scenes. I’ve come to enjoy the storyline but still have an unsettling feeling toward the characters that play the Others. They usually show up out of nowhere with an air about them that causes one either to distrust them or run like heck away from them. I want to get to know them better, but the creators of the show keep them hidden in the background of the main characters’ lives more often than not. Lately some days, I feel like my own neurotypical (NT) children are my own set of Others: characters in my life who through no fault of their own remain in the background.

Many of us float in the same boat feeling trapped on a deserted island like in “LOST.” Life as we once knew came screeching to a halt when our child succumbed to ill health, vaccine injury and a life full of medical care. We try to either come to grips with our new reality, or try desperately to hold onto a past life that keeps unraveling. While we deal with the changes brought on by the special needs child, we are forced to balance it with the life that hasn’t stopped: we are still a parent to the Others. These NT children, some older and more manageable, while others are younger and needier, still require round-the-clock care too. They may not be all encompassing as our vaccine-injured child is, but they do need us.

It hard to keep our head above water with special ed schooling, countless hours of therapy and mounting medical bills as we learn to juggle our children’s lives. New emotions and decisions we’ve never thought about become a daily part of life too. I didn’t think I’d have to put on my game face as much as I have lately. My own Others are breathing down my neck and wondering, “What happened to the Mom I used to know?”

You’ll often find me tucked away in my office when I get a break from some household chores or in between home schooling. My son with special needs is in public school most of the day, so I get some time to be with my NT kids in the daylight hours. Instead of remembering to play with the kids—and wait to be a computer geek after the kids’ bedtime—I hide away for a quick Google search on vaccine injury + mitochondrial disease. Or I read the Warrior Mother blogs and check out a couple of Yahoo message boards before the Others find me. I try to buy some time with a quick click of the remote control and con the kids into some show on PBS while I bookmark a site to thoroughly read later.

I knew I needed to curb my time at the computer when my oldest daughter came in while I was researching again. We’ve explained to Fiona a little bit about what happened to Ronan, her six-year old non-verbal brother, but haven’t gone into many details nor labeled his problems as autistic. She does know that we believe his vaccines did something to Ronan, but she hasn’t questioned why he still can’t speak or use the bathroom on his own. Instead of complaining that Ronan can’t talk yet, Fiona has learned sign language to help her brother communicate better. My daughter is like me and tries to find something positive instead of dwelling on the negative.

Fiona and our other kids know we spend a lot of time with Ronan at the doctor’s offices looking for answers and for help—that’s ample time for them to get jealous while we’re away. I don’t blame them. Someday, when we decide it’s the right time, all of our children will be given the information they need to understand and help their brother. Until then, the Others get the very basic: Ronan can’t do things the same as you, so Mommy and Daddy have to help him a little bit more. Although the extra attention Ronan needs is obvious, I think it’s starting to wear thin on the Others. They are starting to ask questions, deep questions, and it’s time for bigger explanations.

Fiona saw me reading Age of Autism one afternoon. She rested her elbow on my desk and leaned her head on her hand with a heavy sigh. “Mom, I hate autism.” My world came crashing down. Oh, no! She discovered the word I myself am trying so hard to push away! I had wanted to shield my young kids just a few more years from the ugly truth and why I read so much about this thing called autism. As I put my emotions on hold, I asked Fiona why she hated autism. “Well, it’s just so bad and it hurts.” I was surprised by her response. She reads as much as I do and quite possibly had read some magazines and literature I’d left on the counter, like The Spectrum magazine or Dr. Jepson’s book.

I nodded my head and said to Fiona, “Yes, autism can hurt. Do you know what else it does?’ Another heavy sigh and then, “It hurts your body and makes you not breathe. Lauren has it.” Lauren? Lauren is our nanny and she is very typical so I had to stop and crack a smile. Fiona was trying so hard to hang with the big dog, me, and be all medical matter of fact. “Oh, wait, Mom, Lauren has asthma, not autism.”

I then breathed a sigh of relief and gave my daughter the biggest hug. “You don’t have to worry about Lauren, and you don’t have to worry about autism,” I said as I tucked my keyboard away and shut the computer off. I knew it was time to let the consuming thoughts of ‘what if’ and ‘why me’ fade away for the day.

I’ve noticed the Others are acting out more lately. They don’t do their chores as readily as before. It takes 2 or 3 warnings before the kids think I’m serious about cleaning up or getting the table set. I have amazing children who do more than some kids when it comes to helping out around the house. They just don’t want to do anything lately and I think it’s because Ronan is having more medical problems.

Our own emotions can quickly disrupt our household of hope and love. When we parents are exhausted physically and emotionally, the Others don’t like it. They catch our anxiety; no one feels happy or helpful after that.

Ronan recently had another round of doctor’s appointments that took me and Steve away for several days. I was a nervous wreck thinking about all the things that could go wrong. The Others probably fed off my emotions and created some unsettling situations for me to handle prior to our departure. Through it all though, the kids did understand that we had to do this. There was no option for us not to help Ronan, and they had to try to get through this time without us. We called several times while we were with Ronan to give the Others the update on their brother, to ask the Angels to pray for him and to be good kids for Lauren. We came home exhausted and full of anxiety as we still are months away from recovery.

We were going to be home late due to one complication after Ronan’s surgery that thankfully smoothed out. Steve and I were again battle weary from the emotional strain of caring for Ronan and all that entails. We had a long drive back to the house, but we were once again reunited as a family. Lauren had fed the kids, had them ready for bed and reminded them to be helpful to Ronan since he probably didn’t feel so good.

You would have thought the Pope was arriving at our house! Ronan’s siblings quickly jumped to their feet to welcome him. They quietly watched in the background as Ronan slowly climbed the steps into the house. Then, as gently as he could, Ronan’s four-year old brother Willem snuck over to hug and hold Ronan to welcome him home. No words were spoken between the two, just a long, happy hug.

While we worry all day for all of our children, each of them surprises us with their own strength. The Others, these mighty children, are being formed by the special needs sibling who can’t talk or walk. The child that seizes several times a day or flaps and spins is teaching us patience and hope.

And don’t forget about the spouse I fell in love with seemingly hundreds of years ago--he adds another layer of life to my tired soul when I see him working with the Others to help them understand their sibling.

How can I help our family in all of this? How can I balance my responsibilities, Ronan’s special needs, the Others’ regular schedules, the house, the appointments and then me? Somehow I know it will all work itself out so that we are all taken care of. I know the balance may never be exactly in the middle of the seesaw, but together we are committed to working it out.

Our minds race toward hope while our souls ache for healing. Just like in the show “LOST,” the Others play crucial roles in our lives. Their needs creep in when we least expect it or have time for it. They are here to help us find some balance or to maintain the controlled chaos that is the new beat we walk to. Thank God for the Others in my house-- they remind me to be Mom, not doctor, nurse, lawyer, advocate, therapist, or—yes—Google researcher extraordinaire.

The Others provide me with a world of opportunity for me to be the typical Mom I want to be. With them, I hope to find a better balance so that I can also be Ronan’s lifeline and beacon of hope.

----
Cathy Jameson has four Others in her house. She finds Ronan playing next to the Others more and more lately. All their children give Cathy and Steve days full of laughter with chaos and quiet strength with hope.

Comments

cmo

(Autism father) Ernie Els wins British Open

http://www.foxnews.com/sports/2012/07/22/ernie-els-wins-british-open/?intcmp=features

Truly a class act.

May God bless you and your family !!!

Perhaps Dan O. or Mark B. or Kim could interview this fellow for some "first hand history" and treatment programs.

barbaraj

It's really hard to avoid the subject of James Holmes and the horror he set upon our society this week. I listened to the sound bytes of his science presentation and have to wonder, did we do this to him? are these events occurring more and more often in this damaged generation? Most are saying he's a narcissist, he thought he was the brightest of the bright, he wouldn't stand for his spot in the limelight to diminish him to average guy. Okay, maybe so, however, if ever we need to understand what steps lead a human being to do such a horrific thing, the time is now, it seems we are breeding or building these types and while one is too many, I suspect it's becoming a trend, maybe one in a million now, maybe one in 100 in a few years? Such talent, genius, heading far beyond "silicone valley nancy", and then the explosion . Where was this kids social life, where were his girlfriends, his family, was he just the "brain" isolated by his own deficits that were never addressed?

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