Who is Nathan (and why are we chasing him?)?

Nathan is my 4-yr-old son.  He is my only son, and I must say a "mama's boy".  He has strawberry-blond, slightly wavy locks, a dimple in his cheek, the beginnings of freckles sprinkled across his cheeks and nose. Even a bit of a cleft in his chin.  A-DOR-A-BLE.  I coddle him perhaps a little more than my daughters.  I started this blog to say that...just kidding.  You will soon find that humor is the only way I can deal with things.

I started this blog because, under the surface, a war is being waged in this cute little boy's body.  He is running away from his enemy, and we follow along, hoping for the day when we all can stop and simply live our lives.  You see, Nathan has Autism.  Oh, no...another biomed mom who's been duped!!  Not so fast, fellow readers; it's not that simple. 

Nathan was born in the cold winter of 2007.  He was always a sweet baby, an amiable (albeit shy) little boy, and a cuddler.  We took him to all of his well-baby visits, at which he was given a clean bill of health.  He was not sick any more often than seemed to be average for a child.  His development held no worries; he was scooting and soon began "running" on his hands and feet -- dubbed the "bear walk" -- and he laughed like crazy at spinning things.  We thought it all was cute.  But there were other things.  Starting around a year to 18mos of age, he would have extremely difficult pooping episodes, where he would "bear run" in a panicked state to hold off having to go.  It would turn into a 45-min ordeal at times, ending in us having to hold him still to make him go.  He would let out a monstrous yell-scream, and then collapse, sweating, red-faced, and exhauted in my lap.  I had just been admitted into the University of Kansas grad school in Speech-Language Pathology and had begun my prerequisite courses at that time.

As the winter of 2009 came around, we began having conversations with Nathan's preschool teacher.  He was still working on using words, so they were trying to teach him signs.  No worries, here, because they were teaching all the kids signs.  However, some of the kids would come up to me and TALK to me.  Wait a minute -- are these kids just really smart?, or is my kid just not talking?  I brought it up with our pediatrician.  "He's a boy...sometimes boys are a bit slower.  We'll keep an eye on it," she said.  So another month passed, with the gap growing.  At parent-teacher conferences, we were forced to see things as they actually were:  our son was developmentally delayed.  We were advised to get an evaluation through our local Infant-Toddler Services.  The initial dx: Global Developmental Delay, for which we received Speech, OT, and Special Ed services.  By 26 mos old my suspicions of Autism were confirmed.  Sitting in a Language Development class in a dark auditorium while listening to the horrid description of the disorder that your own son had just been dx'd with is fortunate...mostly because no one notices your tears.  There would be many more to come, for many different reasons.

After the diagnosis, we quickly immersed ourselves in the maelstrom of life with Autism:  therapies, online research until the wee hours of the morning...after morning...after morning...ad nauseum, combing through bookstore shelves for the "Autism" section.  I believed that all the classic therapies (Speech, Occupational, and Applied Behavioral Analysis) would be our answer (see My Thoughts on Autism).  We took advantage of each as much as we could, barring the 20-40hr ABA programs which cost a small fortune.  Two years later, we were still struggling.  We had finally won our fight to get Nathan into a school district-run special ed preschool (after hours of meltdown sessions with paras in our home), and fitting into new environments had already been noted as one of his strengths.  But at 4years old, our son still could not speak.  He quickly learned how to use PECS.  However, he would try to imitate, but it was as if he could not get his brain to follow his wishes.  Progress was not matching the efforts/resources we were expending. 

I began wondering if we were missing something.  After a temporary move to New Mexico, Nathan's symptoms were changing.  Over the summer, he stopped using his communication book, became very sound-sensitive, and spent his days running up and down the hallway, stimming loudly.  Attempts to engage him would fail.  He would go from laughing to sobbing in a split second.  He was no longer able to say anything other than "tickle," whereas before he would be able to roughly approximate whatever single word we prompted him to say.  He did not seem unhappy about our temporary move, so I had to consider what I had before rejected:  nutritional status. 

Today, Nathan is thriving.  We found the truth through a DAN! dr in our area.  Our little boy was sick for a long time before we became open enough to ask the right questions.  But that was only our first step.  Our second step was finding experienced and trustworthy moms who had "been there and done that".  These women had HUGE success stories...and they were not selling products, asking for money from us, or looking for gain.  They were simply moms who had recovered many of their children's skills (some COMPLETELY) and were PASSIONATELY sick of the medical community who had failed so many, including their own children.  Now, our family is back in our permanent home, Nathan is using his PECS again.  His eye contact is shocking, and he's demanding that we play with him.  He's brought people to tears a couple times since returning....all because of the progress.  If only they knew where he was 4 mos ago!  The supplements filled in the gaps and fed his body, and Andy Cutler chelation is cleaning it out.  Each weekend comes with a renewed excitement to "do another round." 

I can't wait to see who Nathan is.  As his mother, I empathically "know".  He is positive, funny, and easygoing...much like his dad.  But I want to hear his thoughts, see his creativity, and give him the gift of REALLY showing the world what he can do.  THAT is who we are chasing and why we will continue the chase until the end. 

...and I have a feeling we're about to catch up with him soon. :)

2 comments:

  1. I can't wait to hear more! You are voicing my thoughts about my own son EXACTLY. It's funny. I've not stumbled across your blog before. I am also a speech therapist (oh! the irony of having a minimally verbal autistic son!)

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  2. Welcome, brinsonsmom! I know...we don't realize how like so many of us are! it's shocking! So, now that you're here, I have to ask: what have been your experiences with your son and his medical status? So many moms I've come across have kids w/so many of the same medical situation: food allergies, yeast, toxicity, mito disorder. Are you on Facebook?

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