A dear friend asked me to write to a mother whom I do not know, whose daughter was recently diagnosed with autism spectrum disorder. I cannot know what this mother faces, or what choices she might make for her child, so I did not tell her of the truly amazing progress that LRHF has made since July. What music is it to hear him speak his brothers' names. How he says, "I love you," and "Sweet Dreams." How I now know that he sometimes prefers pretzels to crackers after school (I know because he told me. He told me.) I refrained from mentioning the commonplace amazement of his therapists and doctor at my son's sweet and steady homecoming. I did not tell her any of this because my blessings are beyond my hopes and rare as pearls. I tell you, of course, because when I did bother to look up, you were always right there--along for the drive. This diagnosis is a pointing finger and nothing more.
And now it’s my turn to whisper the important words--words that will flicker just brightly enough to keep you from falling all the way down into the dark: Your beautiful child remains your beautiful child, regardless of where a finger points. Here is my hand, Mommy--you are part of us now, and we mothers of auties pass those words down to new mothers of auties like other mothers pass down silver sets. In fact, it may well be that this one act and these few words are the single speck on the spectrum that we mothers hold in common.
Autism is so many things, so many different ways of being. People will ask you “what is autism?” Believe me, they’ll ask you all sorts of crazy things, but when they ask this particular question, they may as well ask, “what is skin?” How do you answer? How can you? But since no mother begins this trip with answers and since you cannot give what you don’t yet have, just leave it. Leave it. This is your trip and you will gather so very many things along the way, so please pack lightly, and that means leaving other people’s stuff behind.
Take this road through whatever terrain you must--anger, grief, frustration--and know that you will come out the other side a changed and stronger mother. Go ahead and take the long road with all the hills and muddy spots. Stop where you feel the need, think a lot about turning around, and understand that you will always bitch about why you have to do all the damned driving. But you will drive and drive. And then drive some more. You will keep moving forward, I promise.
Claim your place with like-minded mothers and know that we are one goddamn tough bunch. We will stand with you shoulder-to-shoulder, stretch mark- to-stretch mark because we have all done the drive, in our own way, at our own speed through many, many stretches of bad weather
My autie is a million kinds of magic to me. Just as he had no words for the first five-ish years of his life, nor do I have words for our bond. His everyday obstacles show up on time and every day, but they are only as welcome as we allow. So often, too often, we have a thing with the obstacles—we set them apart and make absolutely certain that we can say, “That’s my kid there--the different one--and wow, will you just look at the size of his obstacles ? They are RIGHT THERE and THEY ARE HUGE.” Let me be very clear now, that those same obstacles have no power over the million kinds of magic, not the least little bit.
Say that outloud to yourself right now. Good.
This child sits closest to my heart and I can tell you even in his worst moments, God shines tiny bits of my best self. He is unbridled joy. He has a lightness that comes in quite handy during the darks. And while my chaos is just tired mommy chaos, his chaos is—well, he’s often quite glorious in his chaos. In fact, our road is occasionally strewn with his gifts of glory wrapped in chaos. Now, understand that these gifts are rare and precious. They are mostly unexpected and sometimes quite sticky and of unknown origin. Some days you will have to look long and hard to find even the dullest one. Some days you’ll give up looking altogether. Again, please know that giving up on today can never, ever forfeit the gifts scheduled for tomorrow. Keep looking. You’ll see.
LRHF's diagnosis shattered me--god-- like a rock hitting glass--a big ugly hard thing hitting a not-very-sturdy-at-all thing. We sat in that tiny room with the tiny chairs and filled out those very not-tiny-at-all pages of parent questionnaires and I cried. The whole time. Long pages. Lots of crying.
Not a good day, to be sure, but one that you’ve now survived. You remember the tiny room with those tiny chairs, and you surely recall filling out the stack of parent questionnaires. You might also recall that your answers were often limited to three choices:
Often, Sometimes and Not At All.
So do you bend your beautiful child to fit those tight little circles? Oh, you know that answer already. And when you worry that your daughter's diagnosis might change how you see her, who she is, and how she may find limits, that answer (finally!) fits quite nicely into one of those circles.
That answer is Not At All.
(and um...I don't know what happened with the font/bold thingie there in the middle of the whole thing. Sorry. )
