Lately, I have had to do all I can to remember this statement and believe it enough to not completely lose my head:
The Padawan is having a hard time. He’s 5 1/2, growing every minute, learning more, exploring more, understanding more and with all that, having more difficulties.
Every outing these days is, for him, full of learning, fun, exploring, exciting, adventure. Every outing these days is, for me, filled with anxiety hoping he doesn’t do something that makes him look like a terrible child or me a wicked stepmother or, alternately, an overly-lenient parent who doesn’t care about my child’s behavior. Believe me, stranger who is judging me with the eyes and the shaking head… I see you and your condescension, but if you haven’t noticed, my hands are a little full to blame myself every minute of the day for his inability to fit into your box. I DO care about his behavior, but we take things one minute at a time now over here, and I really cannot be bothered by your harsh assumptions and unreasonable expectations for a child you have never met.
I even found myself begging him to please be the boy I know he is so other people don’t think he’s a bad kid. I couldn’t believe I actually said that to him the other day- I felt so terrible, putting the weight of that guilt upon him… the weight of other’s expectations… it wasn’t fair of me and I promised him, and myself, that I’d never do it again. But it’s hard not to feel like that. It’s hard not to tell him, “dude, just be the you I know you are so people don’t think you’re terrible”.
I’m learning, too. I make mistakes. I say the wrong thing, I get angry, I punish, I grab him by the shoulder and squeeze until he actually, FINALLY looks up at me as though I just magically appeared out of nowhere to stop his fun and then he melts into a thousand pieces that all fit together to spell out a sobbing “I’m sorry mom”. I cry with him, I accept his apology, I tell him I understand but he still has to try, even when it’s hard. He smiles and he hugs me, everything is okay and he’s kind again, quiet again… for a few minutes. That quiet after a meltdown is almost always filled with guilt for me. Guilt because I lost it and it’s not his fault, I need to do better at remembering that I’m the grown up with impulse control and I need to act like it.
It’s just so hard, now. Especially if people who are with me are like, “eh, whatever he’s a kid let him do whatever he wants, it’s fine” but they don’t understand what it means to allow him to walk 20 feet ahead of me or to play fighting games with kids, or get too close to animals he doesn’t know.
“He seems like a normal 5 year old to me, I don’t know what you are so worried about, let him have his fun”. This is the kind of thing I’m told with a patronizing sarcasm making it clear how they think I’m being ‘just a little bit overly careful’. It’s not because I’m a crazy, helicopter parent, I just know my child.
I don’t hold his hand because I want to create a mama’s boy or because I don’t want him to run and play and have experiences of his own. I would love nothing more than to allow him to do those things! It hurts my heart when I see him play with other boys his age, knowing he hasn’t had nearly the experience they have had, simply because I cannot trust him to do those things without close supervision.
I don’t demand he walk within a foot of me because I’m overbearing and want to control my child’s every move. It’s because he’s likely to do something completely erratic and dangerous, something you’d never even think of, and I need to be within an arm’s reach to stop it when it inevitably happens.
People who think they know but never will, love to make me feel like I’m being silly for wanting to make sure he doesn’t push boundaries in a dangerous way or in a way that will upset strangers, or worse; people we know.
Now, shouldn’t people we know respect and understand the struggle? You’d think that, wouldn’t you? Unfortunately, people who love us, love him no mater what, but still don’t understand that his behaviors are not because he is a bad, undisciplined child. It’s because he has autism and he struggles with impulse control, personal and physical boundaries with himself and others, he has patterns and procedures that must be fulfilled in specific ways and volume control is something he just doesn’t get.
He gets fixated on things. He has almost OCD-like obsessions with songs, tv shows and characters. He repeats the same words over and over again or quotes lines from shows or movies or sings melodies from shows he watches and even if he wanted to, and sometimes he does, he can’t stop doing it. He will speak to people in movie or television quotes and they’ll have no idea what he’s saying or why. They look at me confused and I have to translate. This is especially heartbreaking when it’s other children who, instead of attempting to understand, back away thinking he’s nuts.
I don’t filter our TV watching because I’m super strict. It’s because he will repeat every single thing he sees and hears and no one wants to deal with a five year old reenacting a fight scene from Arkham Asylum who can’t stop because he has to finish the scene in his head before he can move on.
Being fed too much junk food, being tired, being confined for long periods of time or getting all hyped up because people play physical games with him (like wrestling, chase, fighting games or running around) then suddenly stop because they’re done playing and have moved on too abruptly… it all just makes it worse. Then, I get to deal with his meltdowns and outbursts of frustration, sadness and confusion while the person who made him all crazy in the first place looks on like my son the one being a jerk.
People we know constantly make it difficult by letting him watch tv shows he shouldn’t see, eat food he shouldn’t eat, they have no respect for my boundaries or suggestions and will say things like, “oh it was just a little” or, “it’s fine, he’s a kid- let him have fun” then they get that “shocked judgy face” when he acts out exactly as I told them he would if they allowed him to do what I told them NOT to let him do. (I’m pretty sure that sentence was not even remotely grammatically correct, by the way but whatever you get the point)
They try to take initiative and talk to him about his behavior while I’m in the other room – because they want to, *ahem*, “help”, so they talk to him like you would talk to a normal child of 5-7 years of age. A child who can listen intently, carefully process, feel appropriate empathy and properly express remorse, then act upon those feelings with respect and understanding. I think they are expecting some grand turn around moment of clarity where my child, stunned by their incredible ways, makes a full turn around and never does anything wrong again. I feel like they expect me to notice this miracle and say, “wow, thank you so much for fixing my child! I will always do everything you just did and, because I’m such a terrible parent, it never occurred to me to try that method before! You saved us!”
Of course that never happens. When he ignores them, just as he ignores me, they get frustrated and look at me like, “really, your’e gonna let him get away with that?” Which is usually followed up by hints that I should spank him because, unless I use physical pain, he will continue to walk all over me. Because, clearly, that is what is happening. That’s about the part of my day where I scoop up my children and go home because I’m not going to bother getting into all that with someone who would rather hit a child than understand why they are doing what they are doing to actually HELP them. They prove to me in those moments they don’t understand and they don’t really care. Because for them, it’s about compliance not about helping, healing or teaching. They don’t understand he’s not ignoring them- it’s that he couldn’t focus for more than the first 4 words they said. By the time they took their first breath in the conversation, he was already off in his own world thinking about something completely different.
My response is usually something along the lines of; “I did tell you he did that… but you didn’t listen. Now do you see?” (If I had a dollar for every time I’ve said that to someone)
But it doesn’t matter what is true- it matters what they believe. Sometimes these moments are followed up with an attempt to understand by asking, “um… so, did you ever have him assessed? Is it autism? Is it ADHD?” They want to put a label on it, something that makes them feel better, safer. They want to know a PROFESSIONAL with a degree is working with him because, after all, 100 years ago, people like him where usually just institutionalized, isn’t it nice to see how far we’ve come? It makes them feel better to know that I’m “taking steps” to ensure he can be NORMAL.
Ugh… “normal”. That word has made me cringe and my stomach turn since I was in kindergarten. No one needs to be normal. Others need other people to be normal so they can feel safe. Which, when you break it down, IS NOT NORMAL.
He’s not bad. He’s not mean, he’s not rude. He’s very sweet, loving, cuddly and kind. He’s creative and inventive, he’s got amazing problem solving skills and he cares deeply about his family. But his brain races through his head like a bullet train and he can’t keep up with it sometimes and it hurts him when too many things are going on at one time. People want him to pretend it doesn’t because that makes it easier for them to pretend he isn’t there. Because most people don’t really like children – at least the ones that need attention. They “enjoy” children when they are quiet, creative, ‘darling’ and sweet. Not when they speak their minds or can’t sit still or repeat the same actions over and over again compulsively while singing a song they can’t get out of their heads at the top of their lungs.
So, at Disneyland on Monday, we were watching a parade and he turned around worried because he couldn’t see his friends, so he started calling for them in the crowd. He was on my shoulders at the time and wanted to get down to find them. As I worked to get him down in a tightly packed group of people, he lost his balance slightly and grabbed for the first thing he could to stabilize- some random guy’s arm. The guy was an ASS and yelled, “HEY WATCH IT!” Liam even said he was sorry, but the guy just huffed all offended. It was obvious he only touched him because he was about to fall off my shoulders. The stranger’s girlfriend got mad at him and wanted him to apologize but he was like, “what, he grabbed my shirt!” like that was literally the worst thing that could ever have happened to him. She rolled her eyes, I glared and tried to make sure Liam didn’t see him or have to deal with him anymore.
It was disappointing. I’m thankful he is blissfully unaware when things like that happen, but I am sad for the day, which I am sure is coming soon, where he understands this hatred and judgment. I’m more sorry for the days when I know he will see it coming from those who “love” him.
Honestly, we had issues all day long. His behavior was erratic, impulsive, sometimes dangerous and sometimes mean. I had to force him to follow directions and threaten massive amounts of punishment to get him to just do what he was told while his friends were like, “dude, chill out” and our friends were attempting as much as possible not to judge, to try and help in any way they could because they’re awesome.
The thing was, he was a mess because his whole life was turned upside down. Every scheduled task that we usually had that week got cancelled because our friends were here. His sister had the stomach flu, so daddy stayed home with her while we went to Disneyland. It was his first trip there without half his family and the first time in a year with new friends. Friends who did not want to do things the way we normally do them at the Park. It was a frustrating, challenging, boundary-pushing day.
The next night, he had a fever of 101.5 and I realized he had also been fighting the flu his sister had. I felt awful for how many times he had to be in trouble during our day when I knew it was circumstantial and not because he is a bad child, but what are you supposed to do? Just shrug off the negative behaviors and pretend they don’t matter? He still has to have consequences and he still needs to learn where the boundaries are, right?
All of that aside and the reason I am writing today is to tell you it was still an amazing day. The random behavior issues during the day pretty much sucked and the encounter with the stranger was sad, but those were still only few out of thousands more moments that were incredible.
It’s all about perspective. It’s all about what you are willing to keep and what you let go of.
As a parent, you get to choose which one matters more, the positive or negative moments. I can choose to see the joy on his face when he is on Star Tours, or remember his frustration and not listening when he kept bumping into people in line. I can choose to remember how happy he was to spend time with his far-away friends in his favorite place and how he was so excited to share it with them. I can remember him quietly saying,”okay mom” when I told him we were going to wait on getting popcorn until after the ride. I can remember how he softly took my hand and quietly walked with me in and through the Haunted Mansion line while encouraging his friends not to be afraid. I can remember how much fun he had, or I can remember how awful I felt all day as my anxiety peaked every time he said “no” or when tore his hand away from mine into a crowd, or freaked out on me because he was tired, hungry and bored or did exactly what his uncle told him not to do. I can remember his joy, or I can remember my own pain.
When faced with the choice, I will always choose his joy because in the end, that is what matters. I know he is only having a hard time and it’s my job to help him through those moments, not take them personally. I keep telling myself every day so I don’t forget; “don’t take it personally – try to figure out why”. I do my best to believe it and most days I do, but I’m only human and sometimes I feel like I’m failing him.
I hope he knows I’m trying. I hope one day, when he’s older and understands things better, he knows I have always done everything I could to learn more and do better for him and through all the moments he will remember where I failed, he can at least know I was always trying to do better.
To those other people who don’t get it? Eh, whatever. They don’t have to. I’m not going to degrade my child by identifying him as his disorder or put a sign on his back that reads “please excuse my autism” just to make a stranger feel better. Of course I wish there was more education, awareness, understanding. I wish there were more compassionate, patient people in the world willing to take the time before they shame and judge and throw guilt, but their lack of understanding does not rule me. What is best for my son is what rules me and I will do my best to remember the good and learn from the bad to be the mom he needs to be the human he is.
I may not always be good at it, some days I might absolutely, 100% fail, but it’s up to me what I decide to remember, what I decide to teach him and what I decide matters. Not them.