What I don't tell as a mom of a child with autism
Have you ever felt like there is a lot that you want to say but there is not much you feel like saying? I’ve felt that so many times. I feel like I’m being judged a lot , too much is being expected out of me and that I’m misunderstood so many times . Sometimes I feel like my challenges seem “made up” to others. Though I know that I don’t owe an explanation to anyone, I still want them to understand that there is so much more to Autism than what meets the eye. The problem with Autism is that it does not have a face. It looks, well... normal. I want to tell them that what they see is just the tip of the proverbial iceberg.
When a friend spots me at the park but instead of sitting and catching up with them, I walk away to my child, I’m not being indifferent. Nor am I being impolite. I’m simply being a mom of an autistic child who might wander off if I don’t watch him. He might get aggressive with another child or he might just stand in a corner not knowing how to navigate the swing set. He needs me there with him more than I need a chat with a friend. I don’t tell you this very often but this is why you don’t find me sitting with a group of friends in the park.
I would love to join you at a party and hang out, without a worry in the world, sipping on that delicious drink and munching on the yummy snacks. Instead, I rush in and out like a whirlwind, probably not looking like I even bothered to dress myself for the occasion. And while I’m there, I look distracted. It’s not that I don’t want to be at your party or that I’m not enjoying it enough. I’m trying, really trying hard to go out there and unwind and this is probably me putting my best foot forward. Did you know that before getting ready for the party, my son probably had a meltdown and we had to settle him down before we could leave. I didn’t mention but just when I got ready to go, my son threw up because he was nervous about this trip so those bits of food that you notice up my sleeves is from all the cleanup that I had to do right when we were getting into the car. And yes, even when I was at your place, trying to have fun, I was worried about where my little one is, did he try escaping out of the house or is he recoiled in a corner, away from all the noise or is he chewing on something he should not because his PICA flares up when he is left unsupervised. Oh, and did I mention that we did not sleep for 3 consecutive nights because, well, my son has Autism and that’s an occupational hazard that comes with it.
While you noticed a little boy curled in corner, conspicuous by his absence in that noisy group of kids, did I tell you what I noticed? I saw a strong boy trying to deal with all the sensory overload , trying hard to fit in , trying to manage his stress by stimming on his straw. You probably did not notice the proud mommy standing next to him. Did I tell you how glad I was that we made it through the day without an incident?
When you see me catching my son’s school bus at the last minute or missing it completely, it’s not because I’m an irresponsible mom or a careless one. I didn't tell you but probably my son threw up..again...in his sleep and when I changed his sheets he was not ready to sleep on the new bedsheet. He stood in a corner crying, asking for his old bedsheet because change stresses him out. Routine makes him feel secure and this was a big change for him. I spent over an hour, in the middle of the night, trying to convince him to get back in bed and so he overslept a little for his school bus.
You saw me walk my 8 yr old son down the ramp for his school’s fashion show. We stood there on the stage, waving and bowing, next to my son’s peers and kindergartners walking confidently, on their own, swirling and sashaying around. Did you notice my nervous smile? Did I tell you that I had nightmares the night before, thinking about what all could go wrong while we walk down that ramp - a meltdown, an aggression, a sudden sensory flare toward all that fancy clothing -his accessory, his scarf or his “very different” shoe, or a complete shutdown because of the noise, or his usual puking in reaction to all the stress. I was so relieved when we were done. I was beaming with pride but did I mention that one day I would love to watch my son walk that ramp on his own, just like the other kids out there. Did I tell you I had such a simple dream which I don’t know if I would ever see fulfilled.
When you saw me hovering over my sick child and squirmed over how paranoid I was, did you know that unlike many verbal kids, my son will not be able to tell me where it hurts or how he feels. You might not know but Autistic kids have a very high pain threshold. If I don’t watch out for his cues, he could land in some serious health situation. I don’t get to take a break or take it easy. This journey that my family is on does not give us the luxury to sit back, relax and watch our lives pass by.
While you look at your child and dream about what they would grow up to be, what college they would attend and who would they marry , did I mention what we dream about? I dream of a day when my son would come back from school and tell me how his day was. I dream of hearing him talk or simply say I love you and understand what he just said. I dream about him calling his friends over or him being invited for a sleepover. We sometimes sit and wonder how our lives would have turned out without the diagnosis. I don’t tell you that often but the smile that you see on our face hides beneath it a lot of worry . The normalcy that you see in our life is our desperate attempt to forget the challenges that we have to face every single day.
Did I tell you that we never plan anything last minute because there is so much logistics that goes behind every little trip we make. Have I mentioned that I still carry something similar to a diaper bag for my 8 yr old because I never know when I’ll need an extra pair of clothing, or some additional sensory toy to take us through the day. That vacation you saw us take, did I tell you how much planning went behind it to ensure we got the right sized room.... that we could not survive without a kitchen in our hotel because of our son’s feeding difficulties, or that we always have a backup plan incase he could not deal with so much change.
You might think being a homemaker should be so easy now that I’ve quit my job. Did you know that my day is spent planning his IEP goals, talking to family advocates and county services, coordinating with doctors and therapists or finding that new activity that could help him with his challenges. When you see me on my laptop, I’m probably busy trying to find out more about the next “breakthrough” in Autism research and treatment or seeking support from other moms who share my journey or standing in solidarity with one who recently got her child’s diagnosis.
The list of developmental delays that are mere bullet lists for my son’s doctors are what shapes our lives everyday. Did I share with you how I feel sitting in a pediatrician’s office checking off all the milestones that my son did not achieve. Did I tell you that even though I put up a brave front it breaks my heart every time a therapist or a doctor tells me that my son might never be able to do something as simple as cross the road on his own or write his name.
You might not know but most of my nights are spent tossing in bed, worrying about what lies ahead for us, for our son; thinking about his future after we are gone. Did you know how many times I go over the list of my family and friends trying to figure out the right person to leave my child with after we are no more ? I’ve cried myself to sleep on so many nights just questioning everything and wondering about all the “what ifs”. Did I ever tell you that?
Like everyone else out there, I have my good days and my bad days. There are days when my challenges seem too overwhelming and days when I’m filled with hope. When you tell me to be positive and that everything is going to work out in the end, did I tell you that I really appreciate your kind thoughts but deep down I know that you are searching for the right words to say, so just say you are there if I need you and that is all I’ll ever need.