The Hard Autism Days

I wrote this last week, enjoy:

Today was a bad day. 

Don't get me wrong, we've had worse.  But this was definitely one of our dark days. 

For those of you who may be new here, our son Calvin has Autism.  At times it is high functioning, "I never would have known he was autistic!" Autism, but nevertheless, Autism.  If you're interested in reading more about our story, you can read an article in the Family Magazine about us here.

For the past few months I've been in more or less a fairyland.  We've been doing great as a family in terms of dealing with one another.  I was feeling like we had accomplished some major social feats and we were making great strides in the world of autism. 

In fact at our last appointment with Cal's "special doctor"  I had explained it somehow like this: "He's been doing so great...do you think he even has autism?"

I'm pretty sure if she had been drinking soda it would have come out of her nose, "yeah, he still has autism" our doctor reported. 

And today, our carriage turned back into a pumpkin and I was transformed out of fairy tale land. 

The reality is this: I can plan a day of fun like we did today and then I can watch it fall apart when Cal can't handle whatever it is he can't handle.  Our reality is that frequently autistic kids have very concrete things that push them over the edge but Cal many times has lots that are inconsistent.  And when these days happen he goes non-verbal, so there's not a lot of communication that occurs to help us help him. 

Today, MLK Jr. Day we went to Indianapolis on a road trip to go to a ton of activities that were free today.  Chaching!  You know this Momma likes to save some money!  I even had contacted a friend from youth group and was so excited at the idea of being able to meet up for a quick chat and hug! But after the first stop (to the Children's Museum which I thought he would LOVE!) I could tell that this was going to be a no good, very bad day. 

To some it would seem like we should just pack up and go home.  I mean, if we know that the kid is having a bad day why stay there and continue to make a mess of the day?  Well friends, there is this one little girl who is our daughter and she was very excited to be going to these things. 

It's always a catch 22 with being a parent of an autistic child.  I've come to see that through Emma's eyes, she gets the short end of the stick so many times.  I'll say that again, so.many.times. 

So we stayed and tried to make the best of the day. 

The more momming I do I find that I struggle with writing these posts.  As Cal gets older I don't want to embarrass him or make him feel awkward.  But I write these to show you: 1) it's not all fun and games over here like so many people think it is (how you would ever think that is beyond me!) and 2) I want to encourage other Momma's that are in the midst of this.  I think we need all of the encouragement we can get!

There was once a season of my motherhood that regrettably, I made autism all about me...how I was not cut out to be the mom of a special needs son, how hard my life was, how unfair all of this is.  How life sucks sometimes. Pity party, pity party.

This starts to put me back in the same feeling.  I feel like I want to just pout about how this ruined our day and how we're going to backslide.

But I'm not going to. 

Because ever so slowly I'm learning to recognize a bad day for just that and not a bad life. 

And if Cal makes me have a hard day then that means he's having an even harder day than I am. 

We have great days too and I need to remember those.  Cling to those.  Hope for those. Expect those.  I was blessed to have a photo shoot with the renown photographer, Katie Whitcomb.  She captured some really beautiful moments of our life together as a family.  When things seem bleak these photos help me to remember that a bad day is just a bad 24 hours.

God has put me on this path to be this sweet boy's Momma.  I say "sweet boy" now and repeat it because those are the words that are hard to come to me as he's smashing his skull against my face while I try to comfort him...

The Lord has put me in this path to comfort you that, if you are in the season I've passed through, where it seems like life is against you, the cards are stacked in someone else's favor, it's never going to get better, I can tell you, it's just a bad day, week, season, month, year, whatever. 

It's going to be get better. 

It doesn't have to be forever. 

So I am sure if I wake up tomorrow thinking it's going to be another bad day then it is in fact going to be another bad day.  But I know that the Bible tells us His Mercies are New Every Morning.  Meaning, I get a fresh start! 

So I am choosing to chalk this off as one of those bad days, I probably had WAY too high of expectations for today anyway. So I will choose to wake up expecting nothing but the best from myself, my son, and from our God. 

Because Hard Autism Days are just that...hard. Autism.days.

And even though that's my reality, I wouldn't trade that for anyone else's fairy tale for anything.

Anything.

How Autism Has Made Me Aware...

Every April I'm usually all over Autism Awareness month.  It's felt like if a treky had some Star Trek month they got to relish in all month long.  These are my people.  This is my tribe.

But this month I've been having a hard time with Autism Awareness Month. 

Perhaps I'm a bit perturbed about Autism keeping me from having one night of rest for the past 8 years.

Or maybe I've just had it with the tests and diagnosis and appointments and reminders and therapists and behaviourists and specialists and pharmacists and medicine runs and visual aids that are all needed to try to get us through one.single.day. at a time.

It could be that I'm just so frustrated with everything.  Cleaning the same messes over and over again.  The same arguments.  The same whatever every day.

So upon a lot of self reflection I think I have come to the meaning behind my begrudging Autism Awareness:

It came when I saw a really good article about Autism.  It was all about how autism is diagnosed vs. how autism is in the reality.  One of the examples was something like Autistic kids may not interact in peer groups but the reality is that Autistic kids often find the universe more stimulating than interacting with peers.

What an awesome perspective!  And so in reading this I have to admit that I began to feel twinges of guilt.  I think the reason is because I have not been looking for the silver lining of the Autism cloud. 

Quite frankly I've been a Debbie Downer of autism.  Talking all about how awful it is. How much it has affected my life.  How we struggle.  How we don't sleep. 

And let me tell you, all of those things are true.  I'm praying for the day that one day they won't be. After all, I think it would be really cool to get a full nights sleep.  I'm a big dreamer like that. 

But when it is all said and done we are still here with this elephant on our shoulders.  And I am getting pretty fed up with complaining about the elephant. 

It's not going anywhere.  It's been here for 8 years so I guess it is time to stop complaining about it and start talking about how cool the elephant is. 

Afterall, Autism is awesome.

I never thought I would be in a place that I could type that last sentence.

I've cursed autism and tried to tp its house a few times.

It always calls the cops.

Lame.

But aside from that I am learning that it is pretty great.

Like that Cal imagines things and could care less about what people think of him.

Or how he is so loving.  In the photo above he begged me to take a picture of him with all of his friends, isn't that just so presh?

Or that when we fight and yell he just walks around the house yelling "family sticks together" over and over and over.  It's from lilo and stitch and it always, always, always brings everything back together.

Or that one time when his sister got mad and decided to run away from home.  He threw on boots and a coat and followed her out the door.  He is loyal to the very core to that sweet little sister who defends him to the very end. 

He is the smartest little boy in the whole wide world. 

And the silliest.

And the kindest.

And the scaredest.  But we're working on that.

Autism has challenged me to think out of the box in every situation of my life.

Like how I now call chicken ham.  You know, because he doesn't eat birds.

Or how I let him wear brown dress shoes with knee socks with gym shorts.  We're cool like that.  He doesn't care and it takes every fiber in my being to not care either.  But I am doing it.  You know, because they're comfortable.

Autism Awareness month is for all of us to try to stir up awareness about Autism.  Things like, yes my son is still a person who should be treated with respect.  No you can't call my son a retard or I will punch you in the face. 

That kind of stuff. 

But for me it is teaching me how to be aware of just how neat Autism can be. 

And for me that is the best awareness of all.