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Rescue Me

Posted Jun 05 2010 12:00am

Nighty night By Cathy Jameson

I start making the 10:00 rounds each night to check on my children. I hold my breath when I open Ronan’s door because he’s not always in his bed or fast asleep yet.  Sometimes he has found a cozy spot on the floor surrounded by his pillows and blankets. Other times his books are scattered across the rug with their pages open.  There are nights that Ronan is in his bed sleeping soundly under his covers like any regular kid.  Every night, Ronan’s closet light is on so every night I turn it off.  One night, it struck me: could Ronan be afraid of the dark? 

As a child I was petrified of the dark. With my vivid imagination, shadows and sounds came to life in my scaredy-cat thoughts.  I had a nightlight on in my bedroom for security. I also had a way of tucking myself in with my stuffed animals at the foot of the bed where my feet lay so that no monsters could sneak up and grab my toes. How’s that for hoping for a good night of sleep?

Ronan sometimes has a middle-of-the-night wake up. I hear him moving around his room or laughing. Other nights he stirs without too much noise and is able to fall back asleep quickly. He never cries out like some of my other children do so it never occurred to me that he could be afraid of the dark.  Even though I have turned off his light at tuck in time, I discover that Ronan has turned it back on again during those wake ups.  I discover it on even when he’s slept through the night too. I’ve gotten used to checking the light switch each morning. It’s usually on.  Is he afraid?  He couldn’t tell me as he is still pre-verbal. When I was young, my nightlight and my stuffed animal army rescued me from my nighttime fears.  Thankfully, I’ve gotten over fear of the dark.  I crave sleep and can usually find a few hours at night after I have literally fallen into bed.  It’s too bad that I haven’t been able to wake up to feel one, tiny ounce of refreshment each morning since I have become a Warrior Mom.

As the mother of Ronan, there are enough scary situations and ‘what if’ thoughts that keep me awake at night. I have so many hats I wear as his mom—medical sleuth, educational detective, support system coordinator and eternally-vigilant advocate. I can’t forget that I am wife to my fabulous husband and Mom to Ronan’s siblings too. I struggle with how to handle and cope with raising Ronan while meeting his ever-present needs. Before I start to crumble to the pressure, stress, poop and more, I’ve had to stop myself and ask, “With all the recovery efforts I’ve made toward Ronan’s health, what is going to rescue me?”

When Ronan got sick, my husband and I looked for cures, doctors, medical literature, educational therapies and intervention. We were sure we would have a completely healed child within three years of starting biomedical treatments. We were sure our son would be mainstreamed and playing soccer with his friends every week at the park. We were sure we’d be doing those fun, family outings on Saturday while attending Church together on Sunday.  Neither my husband nor I ever thought we’d be still trying to put the pieces of Ronan’s life together.  Neither one of us was prepared for the work and the emotions that go into it.  Neither one of us thought we’d have to rescue each other from autism, vaccine injury and a discovered mitochondrial disease but that’s exactly what I need for myself right now.  I realized that when I finally got a professional haircut. It was the first cut I’d had in years. I spent $50. As I walked out of the salon, I calculated that I spent one grocery bag full of gluten-free products.  I spent one bottle of the Enhansa supplement. I spent 15 minutes of speech therapy.  I spent one tank of gas to get to private ABA-VB therapy. I felt guilty for taking money from my son’s needs to spend on myself.  Why couldn’t I find happiness in taking care of me?

I knew I needed to surround myself again in the things that started Ronan’s biomedical journey.  I had been to the Autism One 2009 conference and realized that I had to get back again this year.  I felt a strong pull to return to Chicago and started to investigate what it would take to attend all or part of the week-long event. As I made my request known to my husband, who has supported everything I’ve hoped to do with Ronan and his issues, we decided that having Steve along for the ride to the 2010 conference would be even better. He listens to me babble on and on about this treatment or that protocol, and this doctor or that therapist. He reads whatever publication I ask him to when it comes to vaccines, autism and treatment options but I have always hoped to show him firsthand who I respect in this community, to get a glimpse of the companies we have used for biomed support and to see what other hopeful parents look like.

This past week, Steve and I walked away from everything at home. We weren’t running away even though some days I know we both feel like we easily could; we were leaping toward something.  We had planned this trip for months carefully coordinating the who, what, why, where and when so that we didn’t have to feel one ounce of guilt when it came time to blow kisses to the children as we left. Steve and I hadn’t been away alone in years. We’ve had five kids, several job transfers and around-the-country moves making life feel like it was completely upside down several years in a row.  With our ten year anniversary approaching, we thought this conference might be the only chance for the two of us to rethink the autism stuff while also doing something for ourselves.  It was a win-win situation and, as we finalized the details, others generously donated the means for Steve and I to make it all happen.

Many attendees who have experienced Autism One conferences know they are life changing. The positive energy of the event combined with the sheer exhaustion of trying to get to every presentation while running into people who can finally be ‘a name to a face’ match from the internet support groups leaves one in a dizzy whirlwind of excitement. The autism world “celebs” are in attendance also which adds to the magnitude of the conference. I met and dined with other writers, got to shake hands with big name doctors and was able to thank the alternative treatment center support staff of several companies who have guided me for the last five years. I also expressed admiration to the many advocacy group members I ran into from other autism organizations.  I gained a greater understanding for those who work tirelessly behind the scenes to make such an occasion like Autism One happen. 

Steve met my heroes, my inspiration, my support group and mostly, my friends.  During our getaway we were invited to join the Age of Autism crew for lunch.  We sat on the back porch until well past midnight with The Autism File (HERE)  folks.  We volunteered with the Diet Day kitchen help as the chefs presented how to make the Gluten-free/Casein-free diets (HERE)  doable. We contributed on the auction committee to get the weekend raffle prizes and the silent and live auction donations ready for their own presentation at the Saturday evening formal dinner. We didn’t sleep much, didn’t eat much and didn’t talk to each as much as I thought we would. Instead, we listened and learned to other parents dealing with the same things we do. We watched other parents run around trying to fit in as much hope and healing as we were trying to. We witnessed the effort it takes to fight a system against that hope and healing.  Steve and I were together though.

Steve has always agreed to the requests I have made about Ronan’s health—to try the supplements, to see a DAN! doctor and to start ABA-VB.  Steve’s work takes him away frequently so much of Ronan’s daily care is left to me. He understands how thorough a job it is to be Ronan’s parent and care provider and he gives me support 100%. This past year has been a difficult one with several medical and educational issues which had me neglecting some of our previously intense biomedical interventions.  To hear that other parents with just as many needs and trials continue their child’s biomed has helped inspire me to get back on track with supplementation.

Even with Steve there at the conference, I got a chance to break away to experience me again: the me that has energy and goofiness.  I got to meet up with the Moms who guide and encourage me on the internet groups. I saw the Dads  (HERE)   that won’t take no for an answer. I relaxed at the Spa Night for a massage and facial…with brownies for dessert too!  I wore outfits I can’t wear at home since boogey-covered shirts are just never going to be in fashion.  Staying in the hotel was a treat too--the bright lights of the city, the sounds of adult conversations and the chance to be a part of that was a welcomed break. I sipped the Wines for Autism (HERE)    while eagerly listening to how we in this community will continue to stay strong because there are forces out there still trying to fight against us. 
  

Cat Merck Cat at Chicago O’Hare International Airport the day she left the  Autism One 2010 conference—guess they didn’t get the memo that AO was around the corner.
 





Cat Flu shots At Cat’s hometown airport—they didn’t get the memo about AO either.

It feels like we were gone more than just five days.  I know I’ll need a few naps this week as I wind down from the Autism One high (which was the same feeling I had last year).  With so much to take in from each presentation, exhibitor booth, warrior-to-warrior parent conversation, I’ll be processing the positives of autism recovery for a few weeks. I’ll hope for a full recovery for all of our children but have a feeling that some of us will be dreaming of attending the 2011 conference next year.

With five children, home schooling two of them, shuttling Ronan to where he needs to go for therapy and then juggling the every-day aspects of life, I don’t get too many opportunities to be the old me or to be mostly positive. I miss how upbeat I was pre-vaccine injury.  Even with renewed energy from the conference, I will complain how difficult it is to turn things around with regard to Ronan’s medical attention and his school needs hoping that another family doesn’t have to go through the negative emotional roller coaster we have had to ride. I don’t usually get a chance to take time off, to get out to breathe in fresh air or to take a walk or run like I used to. I used to be athletic and enjoyed a sweaty workout because it actually gave me the energy I needed for the next day.  With all the walking from one end of the hotel to the other, I am sporting some blisters from the fancy heels I wore in Chicago. I am thankful I didn’t hesitate when I specifically bought some sensible sandals for the conference too.

My normal days are full and overflowing before I even get breakfast on the table.  I am proud of who I have become because of everything I have read, seen, learned and done with and for Ronan along this journey.  With all of our effort to learn and to do for him, Ronan is more engaged and able. He can say a few more words now.  He can read too—something others thought he wouldn’t be able to do. When I see his big sister walk by and pat Ronan on the back with a quick, “Good job, buddy” as he sits and watches a movie instead of jumping up and down wildly, I am happy to see that siblings recognize the effort it takes Ronan to control his sensory issues. The baby can walk from the living room to the dining room carrying Ronan’s SIGG bottle to hand it to him while he gently grabs it. Months ago, Ronan would have snatched it up quickly from her loving hands thinking she had taken it away.  Ronan’s brother asks if he can play with Ronan at the water table activities Ronan enjoys. He has a playmate!  The week before the AO conference, Ronan said a complete sentence while pointing, signing and speaking adamantly, “I want the book.”  I could have cried! I told Dr. Partington (HERE)    the story when I ran into him in Chicago and he beamed too. Ronan’s accomplishments took a lot of time and even more work.  It took all of Ronan’s believers to make it happen and I’m thrilled that we are all able to find this success.

I know life is never going to slow down for me or my family.  When Steve and I chose to go away for five straight days in a row, we knew there was going to be a huge break in our schedule that will probably take weeks to mend.  I can wish our crazy schedule away but it won’t help to stop what we’re doing nor would it be fair to dump all of this on someone else.  With all of the demands and even with some of the extras we choose to do, I have to make a concerted effort to stop and be, to sit and watch instead of hustle and bustle as usual.  Autism One was full of ‘go get’ energy and ideas which I will use while also finding a balance to keep still so I can remember to always believe in myself and in Ronan’s future recovery. 
When I look at the small pieces that make up my child and the life we are living, I see that Ronan has made a huge difference in all of that. Some days I’m still afraid but I’m always willing to look up so I don’t sink too low.  When I do have fears, as any parent of any child has, I won’t be afraid to ask to be rescued.  I’m reminding myself that as I grow stronger mentally and emotionally with Ronan’s achievements, I will be able to find a peace and a calm. I admit I am still afraid of some of the future. With the secure support of those in the Autism One community, with my husband’s belief in me, with the super siblings Ronan has and with his own determination, Ronan is shining a light on my path. 
--
Cathy Jameson is a Contributing Editor for Age of Autism.

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