To the kids that don’t think my son is good enough

I’m sure you didn’t mean anything mean by it. I’m sure you were just bored, and decided to go home, where you can run and act like kids. I get that, I do, BUT, when you leave a child sitting in his yard, without saying a word to him, simply because he is different, and maybe can’t keep up with you, and tries to get you to do things that he CAN do, it makes me angry.

Anger is a secondhand emotion. I get angry because you hurt my baby, and that hurts me. See, I know why I feel the way I feel, so it’s all good, I’m still sane, and in control. Now, when you have done this repeatedly, and I have run out of excuses that will take the hurt out of my baby’s eyes, you’ve gone beyond making me angry. You’ve pissed me off, and you really don’t want that. You see, I don’t raise  my children to treat others poorly. Sure, they do things sometimes, and I talk to them, ask them how they’d like it if the roles were reversed, and try to help them figure out how to fix their gaffe. That’s learning, and growing. I also teach them to defend each other, and themselves, and while people say sticks and stones, my children know that isn’t true.

Words and actions hurt far worse, with longer lasting effects, than a punch or kick ever will. You see, with every look you’ve given my son, every time you’ve ignored him, or told him an idea of his is stupid, or that something he has is not cool, or whatever, you have told him that he is LESS. He is less human, less worthy, less fun, less normal, just LESS. For a child who already has so many issues with socializing, and trying to be normal, when his brain and body weren’t made to fit into the box that society has deemed acceptable, these messages slowly break down his every sense of dignity and esteem that he feels. No matter how hard I try to lift him up, praise him, tell him how amazing he is, I am his mom, and we all know that moms all think their kids are amazing, and awesome, right?

He wants, no needs, the verification that he’s good enough from other kids, so for you to treat him like less than a dog, no matter how unintentionally you may have done it, it’s not okay. How would you feel if the roles were reversed? How much would you like having a body that struggles to do the most basic things, like walking, or running, or standing back up, not to mention all the other issues muscular dystrophy has blessed him with? How would you like having a brain that makes the things others say may no sense to you? For everyone’s words to jumble together, so that you can’t make sense of what is being said? How would you like being left behind when your brain and your body simply can’t keep up? How would you like it if the child being left behind were your baby in a few years? Not so much, right?

I’m sorry, I would love to give you another chance, but, you see, as I’ve explained, my son wears his heart on the outside, and you’ve already hurt it too many times for me to trust you with him again, so this is the end of the line for you. Sure, it sucks, but I won’t let the fact that there aren’t many kids in our neighborhood force me to allow you to hurt my children. I would much rather they keep the friends that they have, that treat them with respect and dignity, and see past the differences, than to allow one more tear to fall because of ignorance.

My hero, and his biggest defender

My hero, and his biggest defender

Sorry, I had to vent it this way, or else I might go confront some ignorant adults down the street, and figured there were plenty of people who have dealt with this themselves.

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Dangit, Katy Perry!

 Okay, so we’ve all seen the videos of sick kids singing Katy Perry’s ‘Roar’, and everyone has claimed it as their anthem, right? No argument, it’s a great song, and when it first showed up on my news feed, it was on a survivor of Domestic violence’s page, Melissa Dohme, who I greatly admire. I heard it, and, being a survivor myself, was like “Whoah!” and would rock out to it as my own personal anthem. Then I saw the cancer kids singing it, and it was different. These kids are fighting for their lives, and yet telling cancer to kiss it, which I love.

 Today, the song hit me like a Mac truck to the heart. My son has been enthusiastically singing it when he hears it, which I thought was adorable. Today, as we were both singing it, I realized how much this song really pertains to him. He has Autism, which sets him up to be the ‘weird kid’ and has caused some comments to be made that he isn’t even aware of, but piss me off royally. That’s a good reason to her the song differently, right? Yeah, that’s not enough. He also has Becker/Duchenne Muscular Dystrophy, and I see him struggle everyday, falling more, getting tired trying to keep up with the other kids, even lifting little 2 pound weights over his head requires both hands. I’ve noticed the backwards lean that is so common in these boys, but shouldn’t be obvious until he’s 8, according to most timelines I’ve found. He just turned 7 last month. He’s in a literal race against time and his body, and there’s nothing I can do, but make him happy. Yes, I probably spoil him and coddle him, but I can’t make myself look into his baby blues, and not see what he’s facing, and be okay with causing him any sadness. Yes, I tell him no sometimes, but not nearly as much as some think I should.

I digress. This is about the song, and how it hit me like a semi today. So, here I am, singing (quite badly, of course) along with Katy Perry, and my little boy is just rocking out, rocking back and forth, and gesturing, and I realized, this is HIS song. Yes, many claim it, but this is HIS song. He may not know the battle he’s up against, but he’s already declaring that he’s gonna fight. He’s gonna give it all he has, and he’s not gonna be afraid. There’s a lot to be said for that kind of blind strength, faith, and determination. Maybe I should take a page from his book. Maybe we all should.

I posted this on the book of faces earlier today, and was encouraged to blog, so I figured I would put it out here, kind of as an encouragement to any other parents in that dark place of being told you’re wrong, that everything’s all sunshine and roses when you’re in the bushes.

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This is from when I took little man for an evaluation right after we moved to SC. He had been receiving speech twice a week for over a year, and PT almost every week (with progressions/relapses) for most of his life. When we moved, it took almost a year to find where to go to try to get him back into therapy. They were with us for maybe 45 minutes, and most of what they saw was below average, yet they stopped the interview to tell me that he was a ‘normal’ little boy, and his delays were things I needed to work with him on (because I obviously hadn’t cared enough to try). I was so hurt by the way we were treated, as though I was making up his problems, and I needed to do more for him.
Fast forward just over 3 years, and we have diagnoses of Autism and Muscular Dystrophy. This sheet of paper still makes me soo angry, I wanna hit someone and cry all at once! They didn’t even try to care about my baby, they told me my only recourse was to get him into pre-K, which, they told me was only for the poor or problem kids (they did allude that we had a chance, though). We were treated like less than human, like we didn’t matter. That is never okay.
I post this, one, because no one believed me when I told them this happened. it obviously did, and two, for the parents out there still struggling, with the questions. If you feel that there is something not right, keep pushing. I had to go through a few doctors, with a few teachers making complaints that I took to one, who finally, listened. From there, our lives have been challenged, and, yes, I wish he had an easier life, and was a ‘normal’ little boy, but he is my boy, and he is my heart, and I will fight for him every day that I draw breath.
Don’t let one person (or even a bunch of people) make you doubt yourself! You know your child better than anyone, and you HAVE to be their advocate! I dislike making controversy as much (if not more than) anyone else, but I am his squeaky wheel. If I feel that he is being shelved, I keep making noise until someone listens and tried to fix the problem. That’s what we are supposed to do.
We were given these wonderful little people to care for, and to help prepare for the world. Sometime, the world isn’t prepared for them, so we have to pave the way. Make ripples. Make people step aside and say “Wow, there goes a true Momma bear!” Hold your head high, and shout it from the rooftops, that our kids are here, and they deserve respect and dignity, and a fighting chance!