Last week we passed a milestone. An anniversary. One more day.
And a few more steps.
We’re now on Day 372.
We’ve taken 8912 steps. And we’ve still barely started this marathon journey. It’s now been just over one year ago that we were given the official diagnosis of what we already knew was autism for Sammy. Not that there’s a whole lot to get all nostalgic about when it comes to this terrible disease, but I have to admit that I’ve spent a little time reflecting this past week about what I’ve learned over the last year.
Some of it is enlightening.
Some of it is enraging.
Some of it is sad.
Some of it is tragic.
And a lot has just been terrifying.
On day 365, I started jotting down a list of what some of those things have been. Truth be told, I could probably list at least one thing for every day that we’ve passed. But that would result in an awful long blog entry – even for me. So I pared my list down a bit … and here are just a few of the things I’ve learned since starting this journey.
(It was actually even a whole lot longer even when I first started editing it. I cut out more than half of my initial word count. Dang, I wish I was better at this!)
- I never thought anyone could know so much or talk quite as extensively about poop. Really. Poop. In every form. At any time. Although there were times I’ve thought we wouldn’t get through one more day of dealing with Sam’s poop problems, the things we’ve been doing have actually made a real difference. And his problems are nothing like they were a year ago. Now getting him to poop in the potty – that one may yet be the death of me.
- As many troubles as we’ve had, there are so many kids with autism out there that have a ton more gastro and other problems than Sam ever has. It’s sad. And terrifying. Sad because so many kids are suffering. In pain.
And not even able to tell us about it. Terrifying because so much of our mainstream medical community is
unwilling to acknowledge the problems exist. Autism is a psychiatric disorder. It’s not medical. It’s not physiological. And there’s nothing we can do for our kids with it.
- And that is crap. Complete and total crap. Just about any parent who has dealt with the medical issues facing a child with autism knows its crap. And there are numerous, peer-reviewed, published-in-reputable-journals studies that address these problems. Autism is medical. And, by treating it as the medical condition it is, many of our kids can get better.
- There are some wonderful doctors out there, risking, quite literally, their livelihoods and reputations, to help our children. Many of them have children of their own on the spectrum. They get it. These brave souls risk bucking the mainstream medical community by daring to say that our children can get better. God bless them.
- The human body is an amazing machine that has a nearly incomprehensible ability to rid itself of environmental toxins and other bad stuff, when it’s not compromised and is working right. But when we overload a child’s system with toxins, the amazing machine can malfunction, and medical issues abound. Including autism.
- Genetics certainly play a part in whether a child’s system can handle the toxins he or she encounters. But genetics are not the end of the story. Environmental assaults are also a factor. And that includes – but is not
limited to – vaccines.
- Sam got the short straw on both fronts. We’ve learned his genetic makeup makes it very hard for him to get the bad stuff out of his body. And he got a lot of bad stuff in a lot of vaccines.
- Diet is huge. Gluten and casein, for example, are bad for many kids with autism. They were bad for Sam. We took them out of his diet and he began talking to us.
- Research is important. Really important. And I have learned that I have little tolerance for people that simply regurgitate what they’ve heard on their favorite morning talk show or from a high profile celebrity as proof t that “research shows” anything.
- Some people you think you know well will disappoint you. Some people will amaze you with their capacity for compassion, understanding, and friendship. I have come to know how to accept and learn from the former and am truly blessed to have a small circle of the latter.
Maybe the single most important thing I’ve learned is just how wonderful and resilient my kids are. I’m not just talking about Sam here, either. They each have their own sets of issues we face every day. But every morning I wake
up to a glimmer of hope for what the future holds for them. And that glimmer keeps us going. One day at a time.