Such a small word has come to play such a big part in my life. It has been my enemy, my confusion, my exhaustion, my teacher, my motivation, and surprisingly at times, my friend. It has reached me not only through my son, but through the people I have met, and experiences I have had, since he was diagnosed almost 7 years ago. So in no order of importance, these are just some things that autism is to me.
….bringing your child for his first haircut at the age of one. Smiling as I catch the photo and just know everything is all right in his world and mine.
…hearing the words “your child has autism” less than 2 years later and not being sure if anything would ever be all right again.
…knowing that a mysterious enemy had arrived and here I was— unprepared, clueless, and weaponless.
…having my dreams for my child suddenly take a backseat to figuring out how to help him.
…facing obstacles, time and again, to get his social, educational, and health needs met.
…realizing that I wasn’t completely weaponless after all. My love for him was the ‘weapon’ that would motivate me to find the answers I needed. And taking ‘no’ for an answer was not an option I, or he, could afford.
…becoming more knowledgeable, more resilient, more understanding, more inquisitive, more lacking in sleep, and more relentless than I ever imagined I could be. Just so I could be his ‘voice’ for as long as he needs it.
…perfecting the fine art of picking my battles to get him what he needs.
…constantly questioning myself: “Did I see the signs too late?” Did I do something wrong? “What could I have done better to help him?”All the while knowing that we all do the best we can, with what we have at the time. Beating up on myself was not going to help a thing.
…getting school picture after school picture with my son looking at the ceiling instead of the camera, or struggling to say “Cheese.”
…taking mama multitasking to a whole new level.
…over the course of a few short months, becoming, an amateur lawyer, teacher, recreational director, human resources manager, psychologist, behavior therapist, speech therapist, financial analyst, child advocate, etc. just to handle all the new information and experiences being thrown at me.
…realizing I must advocate for every child with autism, not just my own. They all became ‘my kids,’ and they all need my voice.
…slowly ripping the ‘enemy’ label off of autism. Recognizing it as a teacher. To ignore its lessons, difficult as they may be, was futile and would not serve my child or me.
…deciding to become the most observant, most patient student I have ever been in my life. I may not get an A every time, and now I know that’s okay. The lesson, and what I do with it, is the important thing.
…learning from him that joy and a reason to smile can be found almost anywhere if you try to find it.
…being taught as much by my son as I hope I’ve taught him.
…watching my child reach milestones, whether on time or delayed. Remembering when I was afraid that he might never reach them. Then smiling and removing the word ‘never’ from my vocabulary.
…having my dreams for him suddenly take shape once more. Perhaps a slightly different shape than I originally planned, but promising all the same.
…seeing my child learn new skills from his siblings, friends, and schoolmates. And watching them learn just as much from him. Priceless.
…becoming super overprotective, and discovering that I may be part of the problem. Gradually loosening my protective hold, so my child could rise to the occasion and become all he is capable of.
…coming to realize autism is just part of who he is, not all that he is.
…watching how much he is capable of when the limits are removed.
…occasionally discovering that the over-protectiveness is warranted and kicking Mama Tiger into high gear as needed. Feeling blessed when I see that those occasions are becoming fewer and farther between.
…still having a few good cries, days of disbelief, frustration, and exhaustion before finding the strength to shake it off the best I can. Then getting back to the business of advocating and believing.
…literally being forced to see the world, and how to live in it, with brand new eyes. Living ‘outside the box’ and dropping the word ‘normal’ from my vocabulary.
…facing the occasional fear of who would possibly love and understand my child the way I do, should I or his father not be around to do so. Feeling extraordinarily blessed as I come to see the family and friends who accept him as he is, and who will step in if my child needs anything–anything at all.
…being ever grateful that two of those people are his brother and sister.
…continuing to feel blessed as I come in contact with some of the most exceptional teachers, therapists, social workers, doctors, paraprofessionals, and fellow parents who advocate for my son and all children with autism. They have taken my hand and guided me to many of the answers I couldn’t find alone.
…seeing my hopes, confusion, and fears in the eyes of parents who perhaps have not traveled this road as long as I have. Taking their hands and helping them navigate this mysterious journey I am now all too familiar with.
…learning to not be afraid to ask for help when I need it. Being a rock is not always possible.
…learning one of my most favorite lessons so far–the beauty in living free of judgment. To delight in just being who you are, and allowing others to do the same. Kids with autism have this one down. We should all be so lucky.
And last but most certainly not least, autism is…
…smiling from ear to ear when my son brings home one of his best school photos ever! And this time, the ‘semi serious I’m approaching middle school’ pose. There were times I thought things like this may never happen, or be all right again.
Never say never.