Since joining the autism community as a parent, I keep hearing about “the journey.” “This journey we are on” is the phrase that keeps coming up, and I realize it is a phrase of empathy. It makes you feel like we are all in the same boat on the same creek, and not one of us thought to bring a paddle! And, listening to some parents talk about the different things they are going through confirms this is the case—this is a journey, and far too many of us are concerned about the destination.
Why? Boil away all the fluff and distractions. What is the goal here? Are we trying to raise Rain Man?
I believe in my heart that the primary goal of every parent should be that their child is happy, healthy, and given every chance to excel. These things are far more difficult when you have a special needs child. That is because the script flips.
A stereotypical parent marks their child’s progress by milestones, report cards, and experiences. They have the luxury of having a script. They have a box to check, and when things deviate, they know something is wrong.
Special needs parents don’t. There isn’t a nice little pathway rolling across the idyllic countryside with checkpoints and sightseeing options.
This is like if the show Lost did a Hunger Games episode. Nobody understands it, and we are always fighting for everything.
So the plane ride of normal parenthood develops catastrophic engine failure and you know that you have to jump if your family is going to survive. You grab your shoot and leap. Somehow, you land in a long-forgotten forest. This forest is old, with a canopy so thick that it seems perpetually dark. The underbrush is thick as if no one has walked this before. “This journey we are on” starts here, and you are not alone.
Here’s the interesting part—none of us land in the same spot. We land differently, take different injuries on the way down (yep, every one of us is hurt in some way) and yet, once we pick a direction, we all share experiences. We are all in the same forest.
So, how do you deal with it? How do you deal with the trees, rocks, and briars that life has thrown at you? First thing’s first—deal with injuries. I’m embarrassed to say this one took me a while to realize.
Like most dads I’ve talked to, my knee jerk reaction was to “fix” the issue, not realizing the tree in front of me was part of a much bigger forest.
Take it from a guy who’s been there, you will die before you cut down that tree barehanded. That’s because in this metaphor, the forest is autism. You cannot fix it. You can’t fix the landscape, you can only shape it. So, take a breath and check your loved one and yourself! You can’t help anyone if anxiety has broken your leg! Get yourself OK. Because now the objective has changed, and you have not realized it yet because you are disoriented by the landing. Because you cannot fix this. You cannot power through it like a cold on a workday. It doesn’t work like that.
This trek through these woods is going to take years, decades, and possibly even the rest of your life. The destination no longer matters.
Besides, like Shepard says on the show Firefly, “The journey is the worthier part.” So with that in mind, please get yourself OK.
Next, you walk. I recommend learning everything you can about where you are—that will help you figure out what part of the woods you are in. That will give you direction and direction is good. It gives you purpose, and purpose keeps you going. After that, it is just one step at a time.
Now the hardest part—finding light. Everything about this metaphor is terrifying and depressing. That is what makes light so freaking important. Humans need light to survive. It gives us vitamin D and can help reduce depression. So, find the light.
Now, you are not going to get that ray of sunshine you have been accustomed to here. The beams are going to be small and narrow, pouring through the canopy. But just because they aren’t as big doesn’t mean they can’t be fully enjoyed.
Revel in small victories. Hey, your autistic child just ate a new food. Cheer! Throw a party! Make a big deal out of something you would otherwise consider small.
Autism flips the world of expectation on its head. A typical parent would freak out if their child played in their own poop. Parents of a special needs child take one look at it and go, “At least it’s not in the carpet this time.”
Their “bad” isn’t so bad to us, whereas our “victories” aren’t victories to them. It’s backward.
Once you realize that you have to start using a different ruler to measure achievements, you’ll begin to see just how far from the crash site you’ve made it.