The Tough Ones

We try to stay positive.
We, meaning the parents of the kids with autism.
We really do.

In fact, we're some of the most positive people you'll ever meet. I think that's because when you have a kid with struggles, you slowly learn to change your expectations and really focus on the good parts, not just in your child, but in everyone. Our kids are inspiring. We like to talk about all of the amazing things they can do - and they truly can do some amazing things. Besides that, we don't want our kids to grow up and feel like they're a burden. Especially when they have taught us so much, and given us so much joy.

So...
We shoulder on, we buck up, we suck it up, we try again, we keep swimming, we re-think strategies and approaches.

We stay positive.

But there are those days...
The tough ones.
Autism Moms and Dads out there - you know which ones I'm talking about.

Right now, at the this very moment, here's the scene in my bedroom:

 

Meltdown Management: Mom's bed, pink fluffy pillow, red popsicle, tablet with Hungry Shark Evolution, green diffuser with calming oils, Ice Age on the t.v. and still... barely calm.

 

The cause of the meltdown, you ask?

 

 

Clyde's homemade symphony didn't have a gong. See the pan and spoon where I tried to make a gong? Nope. He wanted this gong.

 

 

Me: "Clyde, I'm so sorry son, but we're not going to be able to make that work."

Clyde: "But my symphony will never work without a gong!"

Me: "Sweetheart, how about we make you a homemade gong here at the house?"

Clyde: "No! It has to be a real gong with the perfect stick that makes it loud and fills up the room."

Me: "I can't really get a gong right now, it's five o'clock in the morning."

Clyde: "Then go to the symphony and steal one!"

 

Wondering how long this conversation and meltdown went on? Oh, only about two hours.

It sounds crazy but Clyde just has a really hard time getting over a disappointment like that. He gets... stuck, and sometimes and moving on is hard.

 

Okay, so take that and add about thirty more of these types of meltdowns into your month. Throw in five meetings with the district and school administrators, sprinkle in three visits to the child psychiatrist, and don't forget to add in some private therapy time.

Oh, and decrease your sleeping hours to four or five a night.

And did I mention you somehow have to still function normally, maintain your positive outlook, and complete all of your same regular life responsibilities?

 



Starting to understand why this morning, I looked like this - ?

 

That my friends is how tired and haggard look.

That is how the tough days look.

Especially when they turn into tough months.

(also - if you're really my friend you'll never copy or paste this picture anywhere.)
(It was EARLY.)

 

 

When the tough days pile up you may see me around town looking a bit like this, except with a purse, a Diet Coke (which I totally quit for two months and then picked back up when the stress hit), and a worried, harassed, look on my face. - (probably because I feel worried and harassed)

  

Look, we know you can't fix this for us. It's the card we've been dealt. We sort-of just have to ride it out and take our time figuring out how to get things back into some kind of sustainable, life-with-autism pattern. Autism shifts and changes as our children grow and we have to shift and change with it. Try to imagine that every time you're done using the restroom, you realize you have no toilet paper.

 

 

 

That's pretty much the feeling around the house on tough days. Exasperated, stressed, uncomfortable, but actively trying to work around it and come up with Plan B.

(How's that for a visual? You're welcome.)

 

I think we just need to feel 'allowed' to have tough days. Sometimes the guilt of having a hard time parenting a child with autism is almost as bad as the hard time. Man, I beat myself up when I can't figure things out. Autism can humble you as a parent in ways nothing else can.

 

Me: I've got this! I'm going to get up, and be positive, and we're going to figure this out. Today's the day! Autism can't get me down!

Autism: Um... instead of that, we're going to meltdown and watch The Lorax five times. Also we need more popsicles.

Me: But I had all these plans...

Autism: They'll have to wait. Right now I need you to help me line up every stuffed animal in the house and cuddle me while I tell you about all the different kinds of sharks.

Me: But... me...?

Autism: Nope. We need you to adult for a bit longer.

 

Sometimes it's hard even admitting that you have tough days. I try to write about them sometimes but I always feel like its too much of a 'sensitive' topic. Like if I bring it up people will think I want them to leave me alone, or they'll think I've fallen off my rocker, or they'll think I'm a bad parent, or they'll think that my kid is sucking the life out of me like a vampire.

 

I struggle to even admit that sometimes I struggle.

 

It's not that I want people to feel bad for me. I don't. I have a great life and I wouldn't trade it for anything. It's not about pity.

 

I think its really about allowing myself to have one moment of real, open honesty. It's about acknowledging what I'm up against. It's about giving myself the freedom to say, "This is hard," or "I don't know what to do," or "I'm depleted."

 

I worry so much about my friends who are in the 'parenting-a-child-with-autism' boat. They try so hard to make it work. They try so hard to stay positive. It's like they think admitting that something is hard will mean that they're failing at it. 

 

Here's something to consider:

 

 

 

Parents out there - in my boat,

the ones having tough days...

Admitting that you're having a hard time does not make you weak. It doesn't mean you don't love your child. All it is, is honesty. You're squeezing the artificiality out. You're clarifying your purpose. You're becoming who you were meant to be.

 

The tough days give us strength for tomorrow. The tough ones build us. It hurts, but they do. It's okay to speak that truth. It's okay to say, "THIS IS HARD FOR ME." That's growth. That's finding the essence of what we really are.