A Pretty Good Rant

90607fd9d5d9fd0eab18aeb7759aa227I’m having one of those Mondays.I woke up happy and ready to take on the day. And then took off Cooper’s diaper mid pee and he urinated all over my floor. I tried to stop it with the diaper but couldn’t. Awesome.

And then Sawyer woke up fought me on every singe thing. He fought me on what to have for breakfast, what to drink, what cup to use, what to wear, what not to wear, what show to watch. When it was all said and done he was wearing a swimsuit and ate candy for breakfast. Oh, and I had to bribe him with a shopping trip tonight to get him into daycare. Yup. It was that morning.

Some might say I lost that battle. 🙂

But I made it to work with my sanity intact. Winning.

And I was doing great until I opened a text from friend that said….‘It’s really too bad that you give Cooper the iPad so much. Such a crutch.’ It’s almost like you’ve given up.

What. The. Hell.

So here is my rant of epic proportions. It’s been a long time coming.

Sometimes I want to say to people…I’m sorry that Cooper is different. I’m sorry that he is challenging. I’m sorry that he makes ‘your’ life harder. Imagine what he does to mine?

I’m sorry I am exhausted all the time. And I’m sorry that every day I am tired. Every single day. I wish I wasn’t.

I can’t help that he doesn’t talk. I can’t help that he’s loud.I can’t help that his noises are scary sometimes. They are loud and shrill. I’m sorry that he flaps and draws attention to himself. To us. I’m sorry that his meltdowns happen in public. I’m just sorry.

I’m sorry that he still poops in his diaper. I’m sorry that he is often naked because I am trying to get him to use a toilet. I’m sorry that I spend more time thinking about Cooper’s food and beverage choices than a damn dietitian.

I’m sorry I can’t give you what you need all the time. I can’t help that I lost friends and relationships. I’m sorry that I turn down your invites to go places. I’m sorry that I can’t just bring Cooper places. I’m sorry that we spend all of our time at home.

I’m sorry that I cancel all the time. Or just don’t make plans with you.

I’m sorry that I have a whole other life that you know nothing about.

I’m sorry we don’t go to restaurants. We would never go to a museum. Lately even parks are hard.

And if by chance Sawyer and I do go I can tell you are judging me for not bringing Cooper. But I can’t bring him. I have two children and one is typical and one isn’t. I’m sorry that you don’t agree with my choices.

I’m sorry that I give the side eye about your hard days. I’m sorry that I am hardened.

I’m sorry that I feel bad that I am not included when you do things.

I’m sorry that I am lonely all of the time. I’m sorry that sometimes the isolation is more than I can handle. And the rest of the time I can’t handle being with people.

And even when I do have someone to watch Cooper, I am sorry that I still don’t do anything. I know that he is going to wake up at 4 am. And not nap. And I am going to be exhausted.

And I am truly sorry that I can’t listen to how hard your life is. Even though I know deep down that everyone’s life is hard. I know my hard isn’t any harder than your hard. I know that.

I’m sorry I can’t hear about your kid’s accomplishments. I just can’t right now. But know that I care and that I love your children.

I don’t want to hear how easy your children are or how challenging they are. I’m sorry I don’t want you to empathize with me or lie to me to whatever. I get that you can’t win sometimes. I am truly sorry.

And I am so sorry that it hurts me when you don’t ask about Cooper. Even though I know nothing has changed. I know that there are no new accomplishments to ask about.

And holy hell am I sorry that my kid isolates me.

And I am sorry that my life leaves me with nothing to give you. You are important to me. I just have nothing else to give.

I’m sorry that I don’t blame vaccines. And I’m sorry that I don’t blame western traditional medicine. And I’m sorry that I’m not trying a new therapy.

Gluten free won’t fix Cooper. Sugar isn’t to blame. It’s not casein or dairy that did this. Lord knows I tried.

Cooper is exactly who he is supposed to be.

I’m sorry it looks like I’ve given up sometimes. I’m sorry I don’t tell you everything I do for Cooper on a daily basis because you would never believe me. Or you would think I was lying. Or exaggerating. Or you would get bored with it. Or think I was complaining.

And when you ask me if Cooper is going to talk I am so unbelievably sorry that I don’t have an answer. I’m sorry that I can’t be hopeful ALL OF THE TIME.

I’m sorry that I think you should just pull it together.

And I am so sorry that I complain about Cooper at times. That I say I wish I could go back before he was born. I’m sorry that I am so honest that it’s scary and sad.

I guess I’m sorry that my life makes you sad. But it’s real. Autism is the realest thing I know. If you can’t handle it you need to get the eff out. Get the eff out of my life.

I wish I could do more for you and our friendship and our relationship. But honestly I have nothing else to give after autism.

But I am truly sorry.

My rant is not about anyone in particular. It’s a mixture of things I’ve wanted to say for years. There is autism and then there is all the crap that goes with it. And the guilt is constant. Trust me. I feel guilty that he isn’t normal.

Everything you think about autism I have already felt. Just know that.

So, I first saw this video years ago. I watched it on Facebook and I’ve been thinking about it ever since. My hard vs. your hard. Who says my life is harder than yours? I love it. Watch it when you have a minute. It’s pretty great.

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7 thoughts on “A Pretty Good Rant

  1. I have been following yours, super Cooper and Sawyers story for a while now without commenting just reading with utter admiration for the courage and love you show to your children. I will never pretend to know what your going through but I have worked with other Super children just like Cooper for six years. All of whom who came with their own ‘quirks’ as we called them and their own little sparkle. You should never have to feel like you have to apologise to others for what others simple would never be able to cope with. After working alongside special needs mums and dads for 6 years I have the utter most admiration for you all. I always used to like to share something that their children (even though also non verbal) used to do at the end of the day to try and bring a smile to their faces. Even if that was for screaming when Justin Bieber came on- I’d like to think this is due to the artist and not due to the sensory overload haha.

    You are a super mum and the selfless life you have taken on for your children should be something your friends admire you for and not to make you feel guilty over.

  2. I love this. My autistic 6 yr old is non verbal too. And he does all the flapping and the noises. And yes people stare. But I can care less. It’s not my business what people think about me or my child. It just shows how ignorant they are. I don’t need to apologize to anyone, nor should you. And I know you mean it in a sarcastic way to those who don’t understand.
    Keep your head up high. You have a super special kid. And you are a super special mom.

  3. Kate. I literally gasped out loud at that text. I don’t think the person who sent that is a friend. Your hard is WAY harder than a lot of people’s hard. And it’s ok for you to own that. It doesn’t mean that their hard isn’t hard, but not all things are equal in this life. And anyone who isn’t cutting you some slack needs to probably bow out of your life. Gracious!

  4. One of my older and wiser friends told me that my autistic child shouldn’t control me. That “I should bring him everywhere and do everything with him that every other parent does with their kid, and that autism is no excuse to hide in the house.”

    Or so says the 67 year old woman with four healthy, grown, and completely neurotypical children.

    Then she said her granddaughter, a cheerleader in highschool, had hurt her knee cheering and had to deal with weeks of PT, and said that was worse than autism.

    It was everything I could do not to bodily throw her out of my house, and she was not invited back.

    You said, “I’m sorry that I am lonely all of the time. I’m sorry that sometimes the isolation is more than I can handle. And the rest of the time I can’t handle being with people.”

    I totally get that.

  5. Wow. I feel like I could have totally written this myself. Every word. Just want you to know an autism mom from NJ is right there with you. Thanks for being so real. Wish we were neighbors!

    PS. I hope your friend reads this.

  6. I hope the person who sent you that terrible text is sorry, but you, Kate, have nothing to apologize for. You are brave and awesome and you keep persevering when obstacle after obstacle comes at you and you are a good mommy. You’ve made lots of sacrifices to care for Cooper and Sawyer. Rant away, this special needs journey sucks a lot of the time, but please don’t apologize for it. Be proud of who you are and what you are doing.

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