I’ve noticed a reoccurring thread among a great deal of the other autism moms I know lately – it seems a lot of us are having a harder than normal time lately with our kids, and the “I hate Autism” bug is definitely going around. For all of us, the journey into this world is different – but that doesn’t make it any less difficult. In fact, honestly, I think those differences make it all the more difficult. It’s tough to be able to relate in such an ever-changing world. Some of us wish more than anything to be able to communicate with our children, while some of us would give anything to be able to take our kids out into the world without having to pack a Rambo style bag of sensory reinforcements. Some of us want nothing more than to go an entire day without our child harming himself, or berating himself, or hating the life he has been given.
In the face of all this, it’s so easy to fall in step and get angry, which then turns around and only makes us feel more lost because we don’t really have anywhere we can direct the anger. It isn’t our children’s fault they can’t stop spinning, or have complete meltdowns when something doesn’t work just right. So who do we blame when we get mad? Ourselves. WE aren’t doing enough. WE aren’t paying enough attention, listening hard enough, teaching the right way. From there, it’s just as easy to start to hate ourselves, and to question every single thing we do as parents. Mommy (and Daddy) guilt is hard enough with a neuro-typical child – but oh man, is it ever a beast when you have a kid with special needs.
So, I thought I’d focus in the other direction today. I sat here this morning, thinking what good things have I learned from this? In the 2,274 days that I have been a mother – I’ve learned a lot. in the 3 1/2 years that I have “officially” been raising a child with autism, I’ve learned a hell of a lot more. So, in the hopes that maybe some of us can be reminded of how lucky we are – despite the pain, the uncertainty, the constant battles waging inside ourselves, in our homes, and in our children’s lives – here is my list of good things autism has done for me:
1.Autism opened my mind, and my heart.
As some of you already know, I’m living a life far, far different than I had ever expected. I didn’t grow up dreaming of big white weddings, picket fences, or any of the other things many little girls dreamed of. Instead, my dreams were filled with packed courtrooms (yeah, I really did want to be a lawyer) and libraries the size of my house. I had tall order dreams, and the attitude to match. I didn’t have the time or patience for things like kids and family. Did that ever change. Kaleb was a surprise – and he flipped my world on its axis quicker than you can say “diaper”. But it wasn’t until the real struggles started to kick in – the night terrors, the seizures, the sensory issues, the parade of therapists marching through our doors – it was then that I really, really realized just how strong I was going to have to be. It was then that I started to look around me, at the other families I knew, and really appreciated each one of their individual struggles. That was when I looked back at my past and saw just how foolish I was not to have taken the time for kids and family.
I stopped rolling my eyes at the mom struggling with the screaming child in the grocery store. I stopped grumbling under my breath when it took someone ten minutes to vacate a parking spot because they couldn’t get their kid buckled in. I started seeing, really seeing, what was going on around me. And instead of being impatient, or irritated, I was sympathetic. I was understanding. It didn’t matter if the scene I was witnessing was with a special needs child or not – that parent was struggling in that moment, and I finally understood what that meant. Because of this, because autism taught me to see with more than just my eyes, I am better. I am a better friend, I am a better daughter, sister, spouse, and mother. I no longer listen with just my ears, our touch with just my hands. Being a mom to kids on the spectrum opened up an entire world I never knew I was missing.
2. Autism has given me patience.
Loads, and loads of it. Okay, this isn’t always true. I will still yell at you if you cut me off on I-4, and I still want to scream inside when I get stuck in the checkout lane manned by the world’s slowest grocer. However, it’s nothing compared to life pre-autism. I can watch the same movie over and over and over again without becoming a babbling mess of crazy. I will watch Planes with Mason ten times a day if he wants – just because I get to hear him repeat the movie, and his words get a little bit clearer each time. To be able to hear him go from saying some incongruous babble to actually clearly repeating Dusty is a small miracle in my world. I will sit and wait while Kaleb takes ten minutes to say something so completely odd, I spend half the day trying to figure out what it means. But even knowing it’s coming, even with him starting off with “Mommy, almost because every time I told you once…” I’ll sit. And I’ll wait. Because it’s obviously important to him, or he wouldn’t push on and continue to try and get it out. Because four years ago the kid couldn’t even say Mommy.
Do I suffer fools more gladly? No. I don’t think that will ever really change, it’s just who I am. Do I stop, and take the time to help a stranger, even when I’m in a hurry? Yes. Because I’ve learned what it’s like to struggle with even the most mundane tasks. I’ve come to understand how sometimes just having someone take the time to hold the door open for me can make my entire day. When a friend calls me and puts their child on the phone, I don’t roll my eyes, silently frustrated because we were having a conversation. Instead, I sit, and I listen, and I smile. Because that kid is special to me, but that kid is the world to my friend, and I want to share in that joy. I have learned to be patient – the conversation can wait, but the kid on the other end of this phone is going to grow up so very fast.
3. The big moments in life are nothing compared to the small ones.
In this world – the world of autism – therapists, doctors, specialists, particular diets, particular fabric requirements and noise levels reign on high. It’s a world where you find yourself with a contingency bag in the backseat of your car, and you panic if you don’t have it. Where you only go to certain restaurants, certain grocery stores, certain parks, and you’re willing to pay out of pocket for a million different things a million other families will never need. This world is full of battles. Large scale battles with schools, doctors, insurance, therapists… they’re huge. They happen every day, and they will drain you. The stress of these battles will suck the life right out of you if you let them. But we don’t – because we also have the little battles to wage day in and day out. Brushing teeth, getting dressed, tying shoes, eating, drinking, sleeping – these are things no parent with a special needs child will ever take for granted. They are just as important, and just as draining as the big ones – but the victories are oh so sweeter. Kaleb actually brushed his teeth – with toothpaste - last week for the first time in history. It took everything I had not to squeal out loud and jump up and down like a teenage girl at a One Direction concert. But I was doing it inside – because we just had a major victory in our world.
This has translated into the rest of my life, this celebration of the small things. Taking the time to appreciate at the end of the day all of the little things that are right in my world. Sure, there are still big battles happening. We still have to pay bills and be adults. We still get stressed out, tired, overwhelmed and frustrated. But we survived another day, and that is better than good. That’s brilliant. There is no instruction manual for life, or for parenting (though plenty of people try to write them), you do your best, and you celebrate the small stuff. Because it’s the little things that are biggest. Those are the memories your kids will carry with them as they grow into adults. Those are the days they will look back upon, remembering how proud you were of something so small. Those are the things that will reinforce your love when teen years and hormones hit. They won’t remember you going to bat for them in elementary school – they won’t remember you parading to one IEP meeting, one doctor’s office, one therapy session after another. They will remember you cheering like a fool when they finally learn how to tie a shoelace, or use a fork the right way. So, I’ll say it once again for good measure: It’s the little things that are biggest.
4. No matter how ugly the world can be, the future is still bright.
Sure, raising a kid in the 50’s sounds like a great idea. You could let your kids out to play, and not worry about them until the sun went down. You wouldn’t have to worry about things like STDs, pedophiles, cancer, preservatives and pesticides. Kids weren’t attached to electronic devices, rude to their elders, oh, and gumdrops fell from the sky. For some reason when something scary happens now, we romanticize the past – the 1950’s more than most. But let’s be real for a minute – things were not any better back then than they are now, not really. Polio ran rampant, racism was everywhere, there were no civil rights, and for crying out loud, there wasn’t even air conditioning! You want to point out the violence in our society, or even point a finger at the war in Afghanistan – fine. But here’s a fact people seem to forget often enough – 36,516 Americans were killed in the Korean War (1950-1953), while to date, 2,229 Americans have been killed in the war in Afghanistan (2001-present). The grass isn’t always greener. Yes, these are scary times – but could you imagine raising a special needs child back then? When doctors were still doing adverts for cigarettes and there was no such thing as Behavioral Therapy? How much better do you really think your child would be without the technology and science of today? Without widespread social media allowing us to advocate for our children?
Our kids have real hope. They’ve got all the potential in the world to become the most influential people of the next generation. They have access to therapists and doctors who understand them – they aren’t being written off as a lost cause. And if they are – you have the right to fight for them, and fight hard. There’s a meme that’s been circulating for a while now in social media, showing quite a few influential people who were believed (or known) to have autism – and they struggled. Not just a little bit, but a lot. Nobody understood them, they were weird, outcasts who were just this side of being considered crazy. Every time I see a news report a tragedy of some sort, after wanting to rail at the injustice of it all – I realize my kids are still better off. As insane as the world has gotten, there are some really bright lights in the future, and I’m glad my kids will get to be a part of them.
5. Autism has shown me just how strong I really am.
When I was pregnant with Kaleb my biggest fear was that he was going to be a girl. Don’t laugh, I’m serious! I had nightmares about it for months. I was a tomboy and a bookworm growing up, I didn’t know the first thing about hair or makeup – I’m almost 30 and I still can’t match my clothes. I look back at it now and I can’t help but think how little faith I had in my own ability to adapt. That’s certainly changed. Look at yourself before your children were born. Now look at what you’ve accomplished. Look at all the battles you’ve fought, big and small alike. Look at how hard you’ve persevered, how strong and tall you stand for your kid. Look at the walls you’ve knocked down and look at the mountains you’ve climbed. Look at how far you have come. Take a second and think about every single change you’ve experienced, every challenge you’ve overcome. What were your priorities before? I’m willing to bet they’re a whole lot different now.
Every day you face life head on – there may be days you want to crawl under the covers and refuse – but you don’t. You stand up, and you fight. You fight doctors, teachers, school boards and other parents. You fight coaches, hell, you fight your own kids. But the one thing you should never have to do is fight yourself. We aren’t perfect – we’re parents. We screw up, we’re uncertain, we get just as lost and confused as the best of them. Nobody is 100% certain 100% of the time. And if there is such a person – He or She is a fool. Life is about adapting. Making small changes here and there to make things work for you. Life with autism is constantly adapting. It’s almost always moving, reforming, regrouping, and attacking. And you are there – adapting right along with it, making room for the changes, fighting on the front lines with the rest of us. Every single day we are a little bit stronger. Every day we straighten our spine, square our shoulders, and say “bring it on, world.”
Your kids are better for it, but perhaps more importantly, you are better for it. Look at you then, and look at you now.
Now try and tell me you aren’t strong.
Autism is a lot of things. It’s a long, rough, sticky, and emotional road.
Nobody said it would be easy.
But it sure is worth it.