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What I Did on My Summer Vacation

Endless-summer-6-scenery

By Cathy Jameson

This and That

I never knew challenging was going to describe much of my life that includes helping my special needs son.  Life drastically changed when he got sick.  Things aren’t always easy for him or me, so challenging is a good adjective to use.  The changes I’ve had to make because of what happened to Ronan have turned a majority of my time into strategic planning and investigating sessions instead of typical doting and nurturing moments.  I still do dote on and nurture Ronan, but it’s at a completely different level.   My days include balancing motherly love while monitoring personal medical care.  My own relaxation time is sometimes non-existent.  Holidays away are usually too much work to manage, so they rarely get planned.  Since Ronan’s worth every effort I can find and provide, I’ve learned to accept how challenging it is to be his Mom.

I’ve had to make some pretty big decisions for Ronan and his care.  Those decisions have guided me to plan better medical attention, to find more appropriate educational support and to search for therapeutic intervention.  Some decisions have been incredibly rewarding for Ronan while others have been an epic fail.  Because these big decisions can affect my entire family, careful consideration and praying goes into the loads of researching, investigating and potential doing to coordinate the next steps in Ronan’s life.  It’s a big challenge to pull off, and none of it is easy to do. 

Every day I can’t help but wonder that if Ronan fell into this terrible dilemma maybe I can help him get out of it.   If stuff went into his body that shouldn’t have, maybe I can figure out a way to remove them.  If parts of his internal systems were affected by assaults to his body, I bet I can discover how each system is affected to learn how to support them to properly function again.  It sounds so logical:  if this, then that.  If I can find the right help for Ronan, then together we can help turn some things around.  As a hopelessly in hope sort of parent, this is how I think. 

Take, for instance, what happens when I get a bee in my bonnet and want to try something new.  This summer I had a strong urge to bring Ronan to a different provider.  I’d said good-bye to some of Ronan’s mainstream medical team in the spring when his “within normal limits” test results continued to befuddle his medical doctors and me.  Clearly the child’s issues are not normal!  Before wasting more time with more tests with this particular medical department, it was agreed by Ronan’s doctors that nothing more could be done.  I felt like we’d given testing to pursue new remedies enough of a try to be able to walk away without any remorse.  I didn’t want to put Ronan through any more exams or lab tests with people who couldn’t, or wouldn’t, think beyond their medical textbooks.  They knew “their” stuff very well but weren’t able to relate that to the other “stuff” Ronan was dealing with.   That’s been a chronic problem for several of the providers we have seen, so I always keep in mind that someone else might come along to be able to help Ronan.  It was time again for me to go down a different path for Ronan’s treatment.  I didn’t mind though because seeing a new provider I had in mind meant we’d also be traveling.

Road trip! 

Our summer included a very scaled back activity calendar—Ronan took a break from school and didn’t go through the summer months as he had in the past.  That left more free time for other activities.  We jumped in the pool to splash and have fun.  We as a family enjoyed some community outings together.  All seven of us.  And, we survived!  This was able to happen after many, many attempts of showing Ronan how to successfully go out in public.  Weeks of practicing running errands in our neighborhood proved very helpful as Ronan gained a better understanding of how to behave in a store, the library, the movie theatre and shopping malls.  His patience has increased, his ability to control his behavior has improved and his knowledge of what happens with other adults (store clerks, librarians, waitresses, cashiers) is better understood.  I no longer have to pry a box of gluten-free cookies out of Ronan’s hands for the cashier to scan them so we can then open the box to eat the yummy cookies.  More exposure in the community with positive reinforcement will hopefully lead Ronan toward a future of being a successful shopper out in town!

With Ronan showing improvement with these types of skills I decided that it would be the best time to take him several states away for an evaluation.  I had thought about taking this trip before, but it never worked out.  Already knowing how to be a better participant in parts of life beyond our own four walls, I made sure Ronan knew what kinds of situations we’d run into on a big trip like this.  He’d have to get out of the car at a rest stop.  He’d have to go into the bathroom stall with me and his siblings.  He’d have to find and hold my hand in every new place we went.  He’d have to remember that even though the strange looking grocery store isn’t the one we usually go to, he could still be a great shopping helper because the routine is the same.  Ronan would have to follow precise directions to be safe and stay out of danger.  A door leading to the outside world is still a door he doesn’t need to go out all by himself.  I’d need Ronan to work with me outside of our element.  I needed everything to run smoothly. 

Once I was sure it was a good time for our trip, I realized how close we’d be to some very dear friends of mine as well as the beach.  I thought it would be great to extend our travel days to some summer relaxing days.  My strategic planning turned into extreme planning when I factored in those extra days after Ronan’s appointment.  That planning helped me realize that our trip to a new provider was not just a medical necessity; it was going to be my summer vacation!

Bathing suit, pool floaties and flip flops were added to my list.  The car was going to be completely full after I turned our 3-day-zip-up-the-highway-to-return-as-quickly-as-possible trip into a 7 days trip that included Ronan stuff plus fun stuff.  I altered the plans, created a more detailed map of who to see, where to stop, how long for each visit and then got excited.  Not only was Ronan going to see someone who might hold more answers for us, but I might just get some me time in, too. 

This trip was going to be a challenge.  Could Ronan handle it?  I’m sure he could.  He’s traveled farther, but it’s been awhile.  Would my other kids understand and cooperate with the Amazonian effort it was going to take to pull this off?  I kept my fingers crossed they could.  We were going on an adventure that was 500+ miles away.  I was counting on my typical children to pitch in and be great helpers.  Finally, could I handle everything, everyone and myself as well?  I had to!  Oh, did I mention I was going to take this trip alone?  

That strategic planning I usually do for Ronan’s everyday problems turned into extreme planning.  My husband wasn’t going to be able to go with us.  With his work schedule and with the window of opportunity I had to get Ronan there, I had to do this trip now.  Factor in driving solo on major highways through the largest cities on the East coast while toting precious cargo in every seat of my car, and I had to be very thorough with every detail going into our journey.  I thought of every possible moment Ronan and I would run into and wrote a list of what I needed to bring for him. I thought about how to balance Ronan’s appointment with 4 tag-a-longs who have been known to quickly lose patience in boring waiting rooms.  I needed more support than I could fit in the car so it was off to do more planning.  I called several friends I knew along the way and created a temporary support group at each locale on our route.  Once I thought of every possible event or problem we might run into, I felt that yes, I was going to be able to handle a major road trip.

There and Back

The adventure to our final destination was truly an adventure.   It included seeing new scenery and regions of America my children may not get to see for many years to come.  It included breaking bread with friends who also walk this journey to future recovery.  It included introducing Ronan to people who have only known his story through my writing. It also opened a doorway to Ronan’s health that I had always hoped it could. 

I had many opportunities on our road trip for quiet thinking because of the long stretches of highway.  Those moments helped open my eyes to see what I love about my typical children:  their innocent hope for Ronan to one day be just like they are--typical.  They have a strong desire to see their brother run as fast as they can, to play with them and not just next to them and to share their regular cookies with him so he doesn’t have to eat his gluten-free cookies alone.  They crave the interactions of a brother who laughs at their jokes and not laugh in the middle of the night (and for hours on end).  Fortunately, they understand and accept the challenge to get Ronan across these great distances to someone who is willing to help us.  These kids have naturally developed an inner strength that took me years to develop.  Their excitement to join Ronan on such an adventure was an added bonus to all the positive moments we had along the way.

Ronan gives our family many challenges that we didn’t expect.  But, because of who he’s turned us into, these are challenges we just face head on.    If we as a family have to plan another trip as big as the one we took on our summer vacation, I know that we would make it there and back.  We’d squeeze all of us Jamesons in a regular bathroom stall along the turnpike rest stop because we stick together always.  We’d encourage Ronan to continue to do everything he can despite the challenges his body forces upon him.  We’d cheer Ronan and each other on while sitting in the car forever even when it flattens our boody bums.  We’d try to stay as patient as we could during the long driving because at the end of that journey are friends who are like family.  We’d help to make the positives come along because once the negatives have run their course, positives do exist.  Sometimes they are right there in plain sight, but other times it’s just part of life to have to face a challenge to find them.  

 

Cathy Jameson is a Contributing Editor for Age of Autism

Comments

SarahS

Thank you Cathy for another lovely article. I have no idea how you do it all - you're a supermum! One thing you're not though is a whiner. I am lucky enough to know you personally and you are one of the least whiny people I know. I whine more than you, with one child. We are all on this journey together, we learn from each other and we each try to do the best for our child. There is not one size fits all approach, in fact, a MIND study just found that their appears to be autism subtypes, which are distinctly different, medically. So, in that case, it should stand to reason that there are different solutions for each type and even within those groups. So, ALA might work for some children, and congratulations on that, but it might not work for others. If there were a magic cure, don't you think Pharma would've patented it by now?! We all want to believe that there is a magic cure, but the reality is that for many kids there isn't, my own included, and we just plug away trying different interventions until we find what works for our own child. Sometimes it's a combination of things. Sad that even within biomed there are those who would eat their own. Cat - so glad the trip went well. Hope to see you soon!

Meg Davenhall

I have been fortunate enough to have the pleasure of meeting Cathy and her wonderful family. To think for one second that Cathy isn't doing enough for her beautiful son is outrageous. She is one of the most caring, dedicated mothers that I have ever met, and I am proud to call her a friend. Keep on trucking, Cat! And thank you for your courage and for putting yourself out there every week...I love reading your pieces on AoA.

Bensmyson

One of the most important ingredients in the recovery protocol of my son is the education, the community of parents and the hearts and dedication of those who post here, who comment and who share here.

Among those people is Cathy Jameson, thank you Cat for taking the time to write these journals of insight and experience so that we may learn how to have patience, trust, faith and understanding from example. Cathy is called to minister and has done so with great humility and devotion. She ministers healing to those of us who are looking for a smile, a tear, a moment in time explained in a way in which we can all relate and perhaps even apply in our own lives and situations. Her generosity and that of the creators and editors of AoA has enriched my life and that of my son's.

This is my church, my community, and it is also a refuge.

I had a summer job once digging a ditch. The first day, I was given a shovel and a piece of ground and told to dig. By noon, I had nearly dug down over my head and felt all alone, isolated. By the middle of the afternoon I was pretty discouraged as I thought of the amount of dirt still to be dug. Finally, however, about five o’clock, I broke through into the trench the guy in front of me was digging. As he cleared away the loose dirt, another broke through into the next hole, and as we just stood and watched, man after man broke through until several hundred feet of ditch was visible and my I, and suspect we all felt quite a sense of accomplishment.

This is the way our community works, that is if we get in and dig together.

jean

Thank you as always for an uplifting Sunday post. It is most often a mother who discovers what is best for her individual child, and especially when its a mom with as much love, energy and dedication as Cathy Jameson. If I was out your way my family and I would be clamoring to have been able to be one of your rest stops on that journey you took. Lots of love to the brave little warrior Ronan and all his siblings who are deserving of great praise as well, what a trip indeed! I feel like I almost needed a rest envisioning all the steps that had to be undertaken to ensure safety.

But, I for one believe and know that a happier ending is in fact possible for the suffering children, better solutions and a cure that will INCLUDE older children as well as adults who are suffering, in contrast to the most commonly held viewpoint that undermines a lot of work being done by a mom like Cathy, and solutions that are not currently either understood or being practiced in either alternative and allopathic medical circles. The cause as well as the ensuing journey back to restored health will be different for every child, though there will be a common thread to all in the experience itself. I was saddened to read some of the comments from this post. But then it made me truly appreciate all the editors on A of A that much more: the parent writer's like Cathy Jameson, Kim Stagliano, Kent Heckenlively, Anne Dachel, Katie Wright, JB, and Alison MacNeil and more who so bravely share their experience. Their stories truly help in the healing and life process for many of their readers. It is disappointing when either the ups or the downs of such experiences are attacked or polluted. I for one enjoy reading lively discussion even when I don't necessarily agree with the content so long as it is polite and with the goal of moving suffering children and families forward or offering a different point of view backed up with reason rather than absolutism, unless that absolutism is grounded through an immutable law of nature and God.

Cathy

Travel with kids is difficult and with special needs kids - it can be very difficult. My husband has been almost rabid about our son traveling, seeing things, going places. It has made me almost insane at times. He has been an excellent traveler and going places has helped him learn soooooooo much. It's so worth it. I'm glad you took the leap this summer and traveled as a family.

Teresa Conrick

To Michelle and Lisa Jamm-

We have received "hate" mail from those who do not support biomedical treatments. This may be the first tag-team to come on aoa and accuse the contributors and/or other readers that they are NOT doing ENOUGH biomed. How strange and bizarre!

I am appalled and a bit sickened that any parent of a child with autism would have the nerve and the brazen lack of compassion to attack fellow biomed parents. Your style of commenting is just unacceptable and unhelpful to say the least. Shame on you for taking a treatment protocol and making it the ONLY medical treatment that parents should try. Please hang up your infomercial hats ladies, as you are neither convincing nor helpful to any in the autism community.

kathy blanco

I think autism can be caused by numerous things, there I said it. I don't think all our kids are necessarily vaccine injured, or mercury poisononed,as discussed here. I think some kids are autistic becaue of birth processes, birth drugs, predisposition to autoimmunity, mom had an infection like lyme, mycoplasma, xmrv, strep, CMV, syphillis, etc. Or, mom had amalgams or lived under a cement plant (that would be me), or mom or dad were exposed to mold, or BT toxins, or endocrine disruptors. Sometimes its just plain ole X linked stuff, fragile X, connective tissue problems, Cohen syndrome, Ehrlos Danlos, even Downs synrome. Sometimes it's late age, sometimes it's a malfunctioning thyroid gland, sometimes its even using tylenol while pregnant or after a vaccine fever. Sometimes it's hormonal difficulties, or low Metallothionein, or high copper and low zinc (you can blame a lot of that on bcp's). Sometimes it's mom's immun e system fighting something creating antibodies to neural tissue. Sometimes it's even stopping breastfeeding at a key time. Sometimes it's a brief disruption of immune surveillance in utero and a less than favorable candida load in mom. Sometimes it's an overload of MSG in mom's system. These and many more can cause autism all on their own, or in combination. Vaccines seem to trigger even more damage, or original damage, this is to be determined. I am sorry Michelle, but mercury doesn't cause autism for some kids, some kids have much bigger issues on board. Sometimes mercury can't be the only answer, as sometimes the original damage by mercury has "left the building" but the tornado after affect can't be moped up, such as damaged neurons and pathways and immune systems. Ask Dr Walsh what the brain revealed in deceased autistic people...there were no mercury in tissues in the brain, it in fact was loaded with iron and calcium, which are disordered and in wrong places. Oh, and forgot, a family history of hemachromatosis does a fine job creating autism in utero. So many variations on the theme, all deservant of good treatments and preventions.

Jennifer

This is a beautiful article! I love the reminder that sometimes slowing up on all the busy, busy therapies can actually lead to progress.

Don't worry about the haters. There is a lot more love than hate out there!

CJP

What a wonderful piece and kudos to Ms. Jameson for undertaking such a journey! I am amazed to read the comments here though. Since when was this ever an article denouncing or recommending Cutler chelation? I think its wonderful that Michelle apparently has a fully recovered child from chelating using Cutler's protocol, but Michelle, to sit on a high horse and proclaim yourself a "doer" and Ms. Jameson a "whiner" is unbelievably sad. Why didn't you just write in to A of A with your child's story of recovery and suggest an article on Cutler chelation? What was your magic "round" number? Three hundred rounds? Fifty rounds? Each child is unique and also many have other underlying medical issues where chelation might not even be a possibility. Instead of tearing each other down, we should hold each other up. And Lisa, to suggest that those of us here are "stagnation mode" and that A of A is keeping us in "stagnation mode" is appalling. I can only summon it up with Matthew 7:3-5 “Why do you look at the speck of sawdust in your brother’s eye and pay no attention to the plank in your own eye? How can you say to your brother, ‘Let me take the speck out of your eye,’ when all the time there is a plank in your own eye? You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother’s eye.

Rockhopper

A note on chelation... The biochemistry of a child should always be considered. We have used vitamin C, Heavy Metal Detox, OSR, all in small amounts (except C) and one thing we never tried was AC. What a relief we never did. Many have figured out there are problems with phenols. One of the problems I see with AC protocol for some children is that ALA is a sulfur donor. Our children have significantly impaired sulfation pathways and it could have been a disaster. It may not be for all children, but for many, who have trouble with phenols, salicylates and sulfur, AC may not be the way to go. It could work for a time, but my guess is there will be a lot of other issues that come up. I often wonder if some of the problems blamed on yeast with chelation are really sulfur issues. Overloading a child with sulfur donors who is sensitive to sulfur is asking for trouble. The trouble could be as serious as severe allergic reactions or regressions and behavioral issues. It may be that even a sulfur sensitive child will benefit from AC chelation, but the side effects may not be worth it. We have opted for slow and steady and laying a solid foundation of nutrition.
Every child is unique. With our three daughters, one needs a lot of methyl donors, one can tolerate a moderate amount and the other can't tolerate any. One thing they have in common is their intolerance of sulfur donors. Please be cautious with protocols. Sometimes, we do have to go out on a limb, but there is no one answer for every child, not even within a family.
People have gone before us and figured out a lot, but there is still a lot of work to be done before we can make the process simple. Some day, things will be different. Some day, mainstream medicine will deal with autism for what it is and finding out what is appropriate for each child will be able to happen without so much trial and error. It is not today. Proceed cautiously, but boldly where appropriate. Lay a solid foundation of nutrition and love. I believe there is a miracle out there for every child. We must work together to find them.

Lisa Jamm

Just like Autism Speaks, A of A doesn't speak for all Autism parents.

Many of us now enjoy life without ASD.

Attacking Michelle might make you feel better, but keeping yourself in stagnation mode (and thousands of other children)with a mouthpiece such as you have here, is immoral.

There might not be a lot of hope for a full recovery for older children like Kim's, but they could improve DRAMATICALLY. For children like Cathy's, a full recovery is a very real possibility.

There seems to be an acceptance here @ A of A that many are not willing to live with. Of course we're not spending our weekends at conferences, or penning columns about living with autism, we're eraticating it.

There really is no big mystery. You don't need endless tests, fancy therapies. Just put in the mind-numbing time week after week by chelating week after week, and you too can have a child who returns to his God given place.

Zoey O'Toole

Michelle, AoA hardly "pretends" that autism is a mystery. I've read many articles on here that point directly to causes -- of which there are many, NOT just mercury. And there are myriad co-morbid medical conditions that these children (and their parents) are dealing with. I have heard of a large number of children who have done very well with Andy Cutler's chelation. I have not seen ANYONE on AoA dispute that. I have also heard of a large number of children whose issues are more complicated or more difficult, for whom AC chelation is impractical or for whom it is actually deleterious at least at the time it was done. This stuff is not straightforward and one size does not fit all. Please stop acting like it does.

Petra

Shi-it, talking about missing the point of the piece totally. Cat is writing about how she made a summer with her incredibly complex family work. With an incredible amount of work, dedication and stamina. I don't recall the title of this piece being "all the treatment I tried with Ronan that worked or didn't work". Cuz how do you know Michelle, that Cat hasn't already tried chelation for Ronan but it didn't work? (and spare me the 'that's because she did it wrong' horse puke). And for you to say that ASD is caused by mercury is just as silly as me saying that all ASD is mito of a genetically determined origin. Just cuz for us mito with genetic underpinnings is starting to become the underlying denominator doesn't mean it's that way for all kids with ASD. Get of your high horse lady (and don't step in the horse pukey as you do so), your comments add nothing...

Twyla

Michelle,
(1)Just because some children recover with Dr. Cutler's program, that doesn't mean it works for all children.
(2) I'm sure everyone would be interested in hearing about your experience with this protocal, and why you think it's effective, but approaching this with a scornful critical attitude is generally not going to make people want to listen to you. Comments like "Where's our interview with Dr. Cutler? Oh, that's right...he has no product to sell and won't place ads on your site" is offensive. AoA does plenty of stories on people who don't advertise on this site. Parents work very hard trying to help their/our children in various ways, and to adopt a holier-than-thou attitude isn't helpful.

Marie Carabine

Every child's biochemistry is different.. Although, most children with ASD are loaded with various toxins, chemicals, heavy metals, viruses, bacteria, etc. - as the immune system is very complicated. So, with that said, it is important to go to a doctor that has worked with children / adults that can help in all the above areas as well as has a proven track record. Once the immune system is shattered, it is the combination of building up the immune system, removing the bad stuff and handling the bugs, and changing one's lifestyle... It is no easy journey... but with advanced testing, a lot of dedication and patience a lot can change. This also goes hand in hand with a a lot of behavioral training, social skills therapies and most important - love.

Gatogorra

Michelle-- honestly, do we have to invite Andy C. to come over here in order to ask you to take a chill pill? The names "Cutler", not "Culter". You're totally out of line.

a mom

Michelle-what is the DAN chelation? Is DMSA and ALA not used in this? I am starting out and want to be sure how it differs.

Thanks

Managing Editor

Feel free to launch Age of Michelle in your spare time. Cat Jameson is a mainstay of AofA and hardly a whiner - she raises 5 kids (whom I have met) magnificently while caring for Ronan as well. One more time, we appreciate that families are finding success with the Cutler protocol - I can't imagine he'd be thrilled with you as his representative in the community however.

Kim

 Michelle, mother of a recovered child

Kim,

Couldn't disagree with you MORE.

You *comparing* it to DAN chelation shows your ignorance about mercury removal. I "chelated with the big guns" too. The DANS have NO IDEA what they're doing. Science is tricky, and if you don't have a working knowledge of chemistry, well, it's out of the DANS reach. Kids WERE recovering from ASD in the old days, but the DANS came up with their own "more convenient" (read: not effective) protocol. Besides, there's no money in the cure.

EVERY time I read an account of a parent who "tried chelation" I find a hole in their story. Every time. Didn't treat yeast or bacteria, slept through an alarm, had to meet my column's deadline...

It's as easy to recover a child from ASD as it it to lose a 100 lbs. How easy is that? Not very, obviously. Takes stamina, discipline, and no one cheering for you at 3 a.m.

The boards are FULL of recovered and dramatically recovered (using AC chelation) ASD kids, look around. Where are stories about THOSE kids? Where's our interview with Dr. Cutler? Oh, that's right...he has no product to sell and won't place ads on your site. Just quietly plugging along, helping to recover (or improve) the lives of ASD kids all over the world.

Tired of the whiners. Show us some DOers.

Managing Editor

Michelle, we have no problem with the Cutler protocol, but if it were recovering kids at the clip you suggest, we'd be hearing a lot more about it - especially in our AofA circles. Cat is bending over backwards and inside out to help Ronan. And chelation is not necessarily for every child with autism. I know kids who have chelated with big guns, small guns and everything in between with almost no results. There is no One Size Fits All for autism treatment/care. Your comment to us and Cat borders on the offensive, was that your intent?

Kim

 Michelle, mother of a recovered child

You said:

"Every day I can’t help but wonder that if Ronan fell into this terrible dilemma maybe I can help him get out of it. If stuff went into his body that shouldn’t have, maybe I can figure out a way to remove them."

Yes, YOU can! Parents have successfully been recovering their children for YEARS using this simple method! I did it, too!

You don't need to "figure it out". Someone already did! It's called Andrew Hall Cutler low dose frequent chelation. All it takes is some discipline and desire on your part.

Have to say, getting awfully TIRED of A of A pretending (?) that ASD is a mystery. You all seem to admit that it's the MERCURY, but are clueless as to how to fix it. Mercury + chelation = recovery.

It's a better kind of drama, I promise

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