It has been a week, one whole week since my five year war came to an anti-climactic end. One week since we received the diagnosis of Autism for my daughter. It was a relief to finally have an answer that explained her behaviors. I felt vindicated that after using the A word to health visitors, pediatricians, Sencos (Special Education Needs Coordinators), educational psychologists and dozens of others they finally recognized what I had seen since my child was two years old. But I was angry too, livid in fact, that it had taken five years of battles with the education and medical systems to get a diagnosis that even I could see. Angry too that had it not been for me fighting so hard my child still would not have the help she needs. And tired, so very tired. Why? Why did I have to fight so long and so hard for something that should be every child’s right…answers to what makes him/her different? And what of the tens of thousands of children whose parents do not have the intelligence and/or will to fight the system for what their child needs and deserves?
But even as this battle comes to an end so many new questions, new pathways, new battles loom ahead. I feel like a hiker, who began her journey with a leisurely stroll in mind, only to encounter mountains that she did not have the ropes to scale. But somehow I managed to weave together what I needed out of vines and pieces of rope left by others who had come before me. And although I am not experienced climber, by sheer will I climbed that rock. Oh, I lost my footing more than once, tumbled back a few feet. I even found myself for a time stuck on the ledge of depression and anxiety, paralyzed and unable to even move with the sheer fear and enormity of the task. But somehow I managed to find renewed strength, to pull myself up, to make it to the top of what had seemed such a daunting peak. I want to raise my arms in victory, shout so loudly that it echoes off the rocks and carries across time and space, a battle cry of victory for others stuck on those rocks, or those standing at the foot of that mountain looking up and thinking, “I can’t do this. It is too high. I don’t have the experience. I am not strong enough.” To them I toss down the rope that has gotten me this far. Use it well.
Then I turn. Only to discover that this mountain is not a peak but simply a plateau. Pathways stretch before me. Statements and school. Social services and respite care. I discover too new guides, new friends waiting to help me on this journey, point me down pathways. But are those the pathways for us? Do their answers fit our needs? Because no matter which pathway I choose there will be new challenges: fast moving rivers that must be swum, pits of quick sand waiting to drag us under, and yes, mountains, more mountains I must climb.
I am tired, so very tired, as I face these new challenges. I want to stop and catch my breath, drink fresh, cool water, eat the sweet fruits of my labor, and rest, sleep for a time safe in knowledge, knowledge of the challenges that we face. Yet, I feel the heavy weight of this burden, the pack that I have carried up that mountain. That pack is my daughter’s life, her very future, and it is my responsibility alone, my privilege to carry. All of those well-meaning new guides, some of whom may offer, can never bear its weight, because it is not their burden. It is mine, until the day that she can stand on her own and face her mountains with Mommy as one of those guides and her biggest fan.
But that happy ending is a long, long way off and I stare now down those pathways. I am reminded of a favorite poem:
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.
– Robert Frost
And that is what I am doing. Thank you to my new guides and all your years of wisdom. I know that you believe your pathway is true and right, the best place for us. But I want something different for this special person…I want happiness. And it has been my experience that it is not to be found in conformity, in those paths well-traveled. And so we turn once more, turn towards that grassy, less traveled path…homeschooling.
With renewed commitment and joy, we pause and look down it. But for now, I am following some of the best advice I have been given…we are making camp for a while. Drinking, eating and resting…and yes, lots and lots of learning for Mommy, learning about this thing called Autism and what the ‘experts’ feel are the best answers. Then when we are strong enough, we shall set out once more on our unique path, taking the pieces of advice that will work for us and leaving the others in our camp for those that come after, perhaps it will be useful for them, perhaps not, but it is a weight that we do not need on our journey.
And it is just that…OUR journey, OUR path, unique and different from all others. Our answers will not work for everyone. Some of them may not even work for us. I fully expect to stumble and fall at times along this path too. But I know that we will get back up, carry on and make it through in the end. A big part of that confidence comes from winning this war…my battle scars serve me well, I am a more experienced shield maiden now, better able to protect and defend my daughter, armed with this new knowledge. Ready to face this new challenge called Autism.
And that is all it is…a challenge. We all have them. Every human being has strengths and challenges. Is this thing called Autism special? Bigger? Stronger? More devastating than other challenges? Maybe it is for some, but there are worse things. And we are more than big enough, strong enough, determined enough to meet it head on…and WIN. My daughter will grow up to be a productive, HAPPY woman…that is the next battle I am privileged to face. Today is Monday, September 23rd, 2013…let this new war begin.