As I was combing through old files on our computer, I came across several old entries from before we started findingjackson.com, and I thought they were worth mulling over as a benchmark and reminder of where we started on our journey with jackson’s autism. This entry was written almost 2 years ago as we were getting ready to move into Oregon and find help for Jackson.

“Stones of Remembrance
“We were preparing to move and the girls were selecting the best of the best from their rock collection remarking over each red speckle, green stripe, and sparkely lump that made the paring down process virtually impossible. With a sigh and a smile I turned over several of my own stones of rememberance found the last two years in California. I remember when we were seeking the Lord about our move from Texas to California.

“We were at a real crossing point, and we needed confirmation before making such a radical move. In my daily reading, I had come to Joshua 1, where God is encouraging Joshua as the next leader of Israel with the words, “Be strong and very courageous, I am with you.” Later that day, Jason mentioned that a student had handed him a note after class. He’d forgotten all about it until he found the paper in his shirt pocket while sitting in church. The scripture referenced the same portion I had just read. Okay, that got my attention! We were on the right track, but what did we need to be strong and very courageous for???

“I wasn’t sure I wanted to know. Here we are, not quite two years later, and I can see how much the Lord was gracing us with His courage, His strength, and His awesome peace. Three months after we moved, my Dad went home to dance with Jesus, our 4th child, Samuel, was born with a hole in his heart requiring open heart surgery at 6 months. One month later, our third child, Jack, was diagnosed with autism.

“Now looking back on this intense period, I can see that God supplied the strength and the courage to carry us through. We have been bathed in the prayers of hundreds of family and friends of friends. Samuel’s completely recovered. Surgery couldn’t have gone better. The Surgeon patched the hole, removed blockage in the pulmonary artery, and completely rebuilt a valve using Sam’s own tissue. Later, the technician running the echocardiogram had to ask the cardiologist which valve had been rebuild; it was indistinguishable. Our hearts are so thankful.”

Wow! What an intense, rocky period in our lives: the hardest we’ve faced so far. We’ve come farther in the last two years than I even knew was possible. Of course, we hoped for an instantaneous miraculous recovery, and we are far from it, but Jackson likes us, is talking, is following directions (most of the time, unless he doesn’t want to!), and is showing that he understands us most of the time. We have learned so much in giving him processing time, using strategies to get language and communication out of him, and understanding better how to teach him to be more independent. I’m thankful that seasons change, and we know Jack has a future and a hope because God is with us. He breathes hope into us day by day, and from one moment to the next pours strength into us. We can be strong and courageous, because we are not facing this alone.

When we finally figured out that Jackson apparently did not have seizures (at least for now, the neurologist maintained), it was back to the drawing board. Our developmental pediatrician was not satisfied that his regressions were of the typical, cyclical sort that many children with autism experience. He had run a thorough panel of metabolic and genetic tests to rule out the big scary metabolic or genetic disorders. He was out of ideas, so he referred us to a metabolic specialist.

Again, I wasn’t hoping for an ailment, but a potential answer and treatment approach (aren’t we all)? This appointment lasted all of 20 minutes (after 20 minutes of Jackson playing in the sink and completely soaking his shirt while waiting). After a careful physical examination, the doctor all but apologized for the lack of research on autism, and any clear answer for Jackson’s regressions. He felt confident, though, that we had ruled out any scientifically testable metabolic disorder. “We just don’t know.”

I left the doctor’s office feeling deflated, but realizing traditional medicine and research I desired was possibly five to ten years too late to help me…I was ready to look for other solutions.

We’ve been trying to figure out the reason for Jackson’s severe regressions for about a year now. Last November, an MRI ruled out tumors and brain damage the big scary…Now we were focusing on watching for potential seizure activity. Continue Reading

A year ago, we started looking at seizures as a possible cause for Jackson’s severe regressions. Every child seems to regress generally when routines are disrupted (say during summer months when not in school) or structured times and schedules are not in place. Jackson is no exception to this rule, but he doesn’t flip out when not following a routine…he just meanders. He becomes a wandering, withdrawn little guy who would rather amuse himself by flipping socks in front of his face for hours. He needs directed play to remember that: oh yeah, people and toys CAN be fun. Continue Reading

About a month ago, Jackson started hitting his head again. He hasn’t done that since his “catatonic stage” when he first showed signs of withdrawing and regression, pre-GFCF diet. The bumper of the van, the corner of the dresser, every doorpost in the house planted their mark in the middle of his forehead, and before long, the school was sending notes home asking about the giant purple bruise on his head. We, of course, were disturbed by this self-injurious behavior and interrupted the head-banging as soon as possible, but after one or two hits, Jackson looked like the loser in a boxing match. Continue Reading