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Marathon, Interrupted

on November 7, 2011

Much to the chagrin of some of my friends, I am not a runner, but I have the utmost respect for those who are dedicated to the pursuit of such amazing feats as Marathons.

Well, the other day I really started thinking about what goes into the task of preparing for and running a marathon.  From what I understand, a distance runner must push past certain mental and physical hurdles in order to move on to their next goal.  For some just starting out, it’s making it past that 2 or 5 mile mark & learning to pace oneself. For others, it’s pushing past that half-marathon place to move forward and train for the big one, which will take their bodies through 26.2 miles of sweat, tears, perseverance, and eventually, triumph.

Julie A. Buckley, M.D. said, “I have likened raising a child with autism to running a marathon, but what we parents know is that sometimes, every few miles we run into a roadblock, a hurdle to clear, a fiery hoop we have to jump through.”

Correct me if I’m wrong, but I’m guessing that fiery hoops and the like do not occur in actual marathons. So today, I am here to give you my perspective on my version of my own personal marathon I “run” to make the quality of life a little better for my autistic son.

I start out with my 2 miles in the morning, and sometimes I choke back sweat and tears simply trying to get my son ready for the day. I’ll say to myself, “I can’t do this … my body & heart are not physically capable of moving forward.”  But support comes at me from all directions…”Yes, you can, Kristi, push past it – push past those two miles of difficult behaviors and keep going!”

So I keep running, and I keep on believing, and I make it past my first challenge of the day and get my son off to school in the morning fully clothed and maybe even fed (if I’m lucky). And then I work through the day, waiting for the calls or emails or notes home that could come from the school any moment informing us that things have been tough (Hurdles). Maybe that’s my 5 mile mark…

Sometimes we get good news, and Alex comes home and we laugh and we giggle; I bond with my child the way my heart aches and longs for every day. Unfortunately, the next day, my child might be back to where we started. Road block. But I keep running, because I have to – marathon’s not over yet!

Some days we have great meetings with his teachers and get plans set in place to help Alex be more successful. And it works for a while. Progress. This is our completed half marathon, our triumph – we’re almost there right?

My autistic child seems to get “better” for a while, the road seems easier to navigate, and then I’m on a running streak. I’ve got that high, that second wind comes rushing in and I feel like I can do this forever.

And so there are days, those rare occasions, when everything seems right. Life is going well. School is working. In my case, my child is not hitting or kicking; things seem simpler…like perhaps we saw the darkest moment, and our dawn has just arrived. So maybe, just maybe, we might cross that finish line today after all. And so we run, exhausted, because those last 5 miles are just killing us, but then all of a sudden we can see the finish line. We run faster, push harder, ecstatic that this whole thing is coming to a close, clinging to the hope that we get to go home & rejoice because we’ve finally found the right combination of things that help our child.

And we make it to that finish line…but there’s something wrong. Something shifts, our child changes, some sort of regression occurs in their behavior, which brings us to a screeching halt. There’s a Fiery Hoop in our way. We look ahead, beyond that finish line, we see that a new “Start” line has appeared, and the next race begins NOW. And we don’t have any choice but to keep going.

Our legs are aching, our back is killing us, we can’t breathe, and our toenails are falling off, but it doesn’t matter, because we have to jump through that darned hoop and start the next marathon. We don’t often even get much of a chance to celebrate finishing that first marathon, though we try. All the things I’ve done, all that I’ve trained for, all the miles and hurdles and roadblocks I’ve overcome, and suddenly I’m back to that 2 mile mark I have to push through again.

Parents of Autistic children are used to picking up the pieces and pressing on. We implement new diets to balance our kids’ delicate gastrointestinal systems. Some of us have to play rougher than we want to with our sweet babies, just to get them to calm down, while still others have to be gentle, or keep headphones on their children because of their sensitivities. We dress our kids in clothes that won’t bother their skin, load them up with devices like weighted vests and attempt to mold every social situation into a positive experience for everyone. Sometimes we stay home to avoid conflict altogether. We try to make our homes structured, and have normal conversations, but our children won’t always tell us what they need, so we rely on instinct or we create picture systems to encourage communication.

We consider everything from medications to holistic remedies, therapies and prayer. We worry that maybe there was something we may have done wrong in the past, so we constantly overcompensate. We have to look at every single thing our children do from every single angle you maybe never thought was possible. Because they can’t always tell us what they need. We fight the school system & daycare, and baby sitters drop like flies. Sometimes we feel like screaming at the injustice in the world that makes it harder for our kids to succeed. Hurdles, Road blocks, all…and don’t forget those Fiery Hoops of despair that shock us right back to the beginning of our training. I hate those hoops.

So sometimes we want to give up. We want to throw in the towel, walk away, and say “I don’t need to finish this marathon today.” And maybe we don’t (today), but there IS no giving up; these are our children. Throwing in the towel is not an option. And so we get back to basics, face the new, looming “Start” line, and begin that next marathon.

Raising a child with Autism is like running a marathon, every day. The training never stops; the start and finish lines must always be there to keep us learning what needs to be learned.

Regular Marathons – while grueling, difficult and finally triumphant – ultimately come to an end, often resulting in a free t-shirt & a medal & glory for finishing. Being the parent of an autistic child, searching for ways to help them succeed, does not come to an end, at least not in the gratifying amount of time we, the parents, would like it to. And we certainly don’t get a medal for our efforts.

So we strap on our running shoes, which are brand new for some of us, and worn & tattered for others. And we get back up every morning and we run some of our marathon. We succeed and we fail, we get up and then we get knocked down. But we get back up again. And we jump those hurdles and push through those roadblocks, and we yell as we launch ourselves, fighting, through the rings of fire. And eventually, like a seasoned runner, these things get easier to tackle. We begin to learn what we have to in order to help our children grow and have a fulfilling life.  And it’s a different path for every one of us because none of our children are the same.

Runners, marathoners, are amazing people. And so are we.  And just like those runners, we will press on. But right now, some of us are just facing that next starting line and trying not to cry.


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