What has happened? It’s been almost 2 years since I last posted anything about our journey…really? Two? Yep. I had to double check. Since then, surprise baby number 5 has become a rampaging toddler and mess-maker extraordinaire, breaking all of his siblings’ records for getting into things.
Along with managing my 5 little monkeys, I have stepped into the children’s ministry director position at our church, sent my beautiful girls to public school, and as of December have left the open fields surrounding our small rental to buy our first home less than a mile away and enjoy a fenced-in backyard in town. Jackson loves it and made the adjustment amazingly and gleefully. But he misses his favorite “tall trees” as well as our dear friends who live there. We follow the tree tops and visit when we can.
And Jackson? How is that now seven year old boy coping? Overcoming? SLOWLY moving forward, yes. But looking back two years makes it apparent…we HAVE moved forward. Kindergarten and now first grade just down the block in one of the best public autism specific elementary classrooms around. Where we fought for independent speech daily before, now we reach for complete (simple) sentences, sounding out words, writing letters and numbers, counting to 100, spelling simple words, and following 2-3 step directions, and appropriate interactions and play.
Speech is still more than challenging for Jackson. Words still escape him even when he’s motivated to remember. And he still faces cycles of across-the-board regression though not nearly as severe as before. His obsessions, while changing, seem more intense and unexplainable than they used to be…like his current obsession with a can of Bushes Baked beans…no idea where that one came from. We drew the line at bringing his beloved beans to the top bunk in fear of the injury a falling can of legumes could inflict on his younger brother below.
Last winter we attempted to reintroduce dairy after 3 years of GFCF. After a month of careful indulgence, we realized it was a horrible mistake. Since there were no immediate signs like rashes, weird bowl movements, tummy complaints, or vomiting, we thought we were ok. After 30 days of living it up and loving cheese, we saw Jackson slip into one of his most severe regressions since we first began this journey. This time it lasted almost 7 months.
This long-standing regression prompted us to return to some of our earlier attempts at healing his gut that we had apparently messed up with dairy (probiotics, enzymes, NO MORE DAIRY), and to re-up our efforts to help him consume nutritious food as well as supplements. I also took a leap and made an appointment with the Naturopath who ordered a stool analysis, and subsequently prescribed nystatin (anti-fungal) tablets, and B12 injections. The injections proved immediately effective at increasing independent, meaningful speech (once I figured out the optimal angle for administration (which is, by the way, 30% or less). He went from 0-10 independent words/day (typical regression count), to 15-30 and several phrases or 3 word sentences fairly quickly. After almost a year of B12 and Nystatin, he appears to hold onto more language than he did before. Language slacks off a bit when we run out of B12 before the next refill comes. I am no longer surprised to hear independent speech (unless it’s a brand new phrase), and it doesn’t seem quite so effortful for him to produce it.
Still, there is something more there that wasn’t there before…a deeper awareness, a consciousness of others. He sees us more than he did before. I will write more about that next time. For now, I am glad to be back. I’ve missed this. I need this. For me, this is a reminder of where we’ve come from and a driving motivation to keep moving forward.