A question we often get is, how did we know? What was it that we saw, or didn’t see, in Jacob before the official diagnosis that had us questioning Autism to begin with?
To set the stage, you must know that the saying “ignorance is bliss” is very true. Unfortunately, we didn’t have the privilege of ignorance . I had 11 years of education under my belt at the middle-school level and I had seen, worked with and met students with varying levels of Autism. There were people in our personal lives that were also raising children with Autism. We knew the statistics were not if our favor, and the alarming high rates of prevalence among boys.
When we had our first boy, Lucas, Juan and I were on the “lookout” for red flags. I don’t really know why, but we were highly sensitive if he didn’t meet developmental milestones on time. Remember that “what if” game Juan and I like to play, yup we played it here, too:
What if he has autism?
What if he’s low-functioning?
If he does have it, I bet he’ll be high-functioning.
Lucas would go on to meet most his developmental milestones appropriately, with the exception of speech. As I saw Lucas interact with his world, my concerns about Autism decreased. Whew. We were in the clear, I would often tell myself. Juan, on the other hand, isn’t so sure. We see some behaviors characteristic to those on the spectrum and he still has some doubts. There has been some improvement in Lucas’ behavior, specifically high-levels of energy and less meltdowns, with the introduction of a gluten-free and dairy-free diet at home. We are not as strict with Lucas’ diet as we are with Jacob, but we’re getting there. Like his brother, Lucas also takes the Barlean’s Fish Oil.
For the most part, Lucas has had a typical Kindergarten year. He receives speech services through the school and also privately. When Dr. K asked if we had concerns about any of our other children, we did mention Lucas. Without even meeting Lucas, Dr. K could describe his behaviors almost exactly. We joked that we should have brought our 5-year old along for the visit, too.
Then we had Jacob. Is there a link between mother’s stress and autism? Perhaps. It seems there’s a study for everything these days. I often wonder if my inability to handle large amounts of stress might have triggered the Autism for my youngest child. I was in my last semester of grad school. I was worried about finishing on time. I was worried about finding a job as a school counselor. I was worried about still being an effective teacher. But when you’re inching your way closer to 40, time is not something you feel like you have when making decisions about family planning. I desperately wanted a third child, and if didn’t happen now I felt like it would never happen.
We monitored Jacob’s development as much as did with Lucas. We were still hyper-sensitive, but nothing seemed wrong or different from birth to 15 months. He was happy. He interacted with us. He was so much more alert than we remember his older brother being. He met our eye gaze often and smiled. He turn his head when he would hear us talk. He wasn’t as sensitive to loud noises or unfamiliar places as Lucas had been. He wasn’t talking, but he was babbling. This wasn’t as concerning to us because Lucas had done the same thing.
We thought we were good.
But somewhere between 12 and 15 months, it changed. It wasn’t anything that happened overnight. Truth be told, it seemed like slowly we noticed a decrease in the following behaviors:
- eye contact and eye gaze
- interaction with us
We also noticed an increase or introduction of the following behaviors:
- walking on his tip-toes
- spacing off
- finding small corners to sit in alone
- banging his head or feet on the wall to produce a hollow, loud sound
In addition to the lack of speech by 15 months, we were concerned. His 15-month developmental checklist from our pediatrician’s office proved some slight delays. It wouldn’t be until he really failed his 18-month developmental checklist where urgency set it. We also took note that he was never really a good sleeper. In Jacob’s first two years of life, we’ve only had 8 consecutive nights where he slept from bedtime to morning uninterrupted. We keep our local Starbucks in business, I’m sure.
If you ever get the chance to visit with Dr. K, you’ll likely hear him talk about his strong opinions about vaccine injury. Many people will ask us if we suspect vaccines caused Jacob’s autism. I don’t know. I’m not a doctor. Based on what we’ve read, seen and heard, we suspect that Jacob’s autism was the result of a perfect storm. Much like all the components needed to form a tornado, it wasn’t just a single act that triggered the Autism. At least, I do not think.
If you’ve read the post about the Initial Lab Results, you know that part of Dr. K’s treatment plan included genetic testing. The results showed us that Jacob’s genetic composition with the MTHFR C677T+/- and A1298C-/- gene mutation meant that Jacob’s methylation might be compromised, which could indicate inability to process toxins. Are there toxins in vaccines that Jacob’s body can’t get rid of? I suppose this could be the case, so we made the decision to stop vaccinations for the meantime.
We have friends who sit confident on both sides of the vaccine debate. That is their right. We see the Facebook posts and re-tweets regarding whether or not to vaccine, and I cringe. There are very few things in life that are black-and-white, and vaccines is NOT one of them. We came across an article from Dr. Paul Thomas from Portland, Oregan. We’ve never met with Dr. Paul nor is he treating Jacob, but I found his Vaccine Plan to be a good balance of what to think of before vaccinating.
Being a parent is hard work. There is no book. There is no crystal ball to look into to see if you’re doing it right. There is no guarantee that even if you get it all right, things will end up perfectly in the end. Each decision regarding Jacob’s treatment plan has been weighed carefully. We’ve spent many a nights praying. We’ve consulted with friends who are also walking this journey of Autism with someone they love. We’re connected to many Facebook groups specifically for Autism to cast a wider net of resources. We do our best to see what the research says. And we hope for the best. Until we’ve exhausted all our resources, we will diligently keep doing what we think is best for Jacob. It’s what any parent in our shoes would do, I know it.
Signed with love, Kat.