The Waiting is the Hardest Part

I can really relate to Tom Petty today. The waiting really is the hardest part.

I’ve been told time and time again that raising a child with autism is a marathon and not a sprint. We implement a therapy or biomedical piece and while we’d love to have instantaneous results, we have to let things take their course and see how they play out. I understand this. But it doesn’t make it any easier to have to be constantly waiting.

It’s not that I’m that impatient of a person. I can deal with long lines, slow internet access, waiting for the mail to arrive, etc. But when it comes to recovering my son, I wanted it done yesterday.

There are so many stories of hope out there that inspire me, but sometimes they scare me too. In some of these stories, it seems like dramatic things happened right away. Maybe a child was put on the gluten free/dairy free diet and they showed rapid improvement. Or that first B12 shot caused them to speak more words than they ever had before.

It’s not that we haven’t seen improvement but it’s definitely a slow climb. I don’t think we were naïve enough to think we’d recover Josiah with just one shot or one round of chelation, but I always thought, “Wouldn’t it be neat if we gave him one B12 shot and he turned to us and said, ‘Man do I feel better!’”

When things don’t seem to be happening I always worry. Are we doing this right? Is he getting all the stuff he needs? Is there something we’re missing? The fact that he just turned 3 scares me too as I realize how quickly the past year just flew by.

For many parents it’s a revelation years into their journey that they can do the biomedical treatments. We hopped on board almost immediately with the diet, supplements, restoring the gut, chelation, etc. He’s been in intensive ABA therapies for almost a year too.

We’ve had moments where it seemed like the payoff was coming. He’d do something new and we just felt like some major breakthoughs were coming. But then we always seem to hit times like we’re in now. Times of regression. Unfortunately that seems to be what happens with so many of these kids. Right now I’m just clinging to the advice of other parents and professionals that sometimes these kids have a regression right before a major breakthrough.

If there was only one way to recover a child it might be easier to know that patience is necessary. But I feel like that with every passing day we’re losing time and I don’t want to find out later that there was some big component I was missing. People always tell us that we’re doing way more than most people do. That used to make me feel better but it also freaks me out because I feel like we should be farther along then.

You definitely learn a lot about yourself when you plunge into the world of autism. I would have thought I was an incredibly patient guy in the past, but I’m slowly, very slowly learning to just take it one day at a time. I don’t do extremely well in that regard many days, but I guess I’m a work in progress too.

And I do firmly believe that we will recover Josiah some day. What that recovery will exactly look like I’m not quite sure yet. But I can’t wait to write some posts in the future where I talk about how we recovered Josiah and how other parents need to be a combination of patient and vigilant at the same time when dealing with their own recovery efforts.