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 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 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. 

Surviving those Hard Autism Days.  Super Busy at Home

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.


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 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.


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

How Autism Has Made Me Aware. Super Busy at Home.

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.


Riding the Waves of Being an Autism Mom

The other day I had the pleasure to sit down with my childhood bestie and talk Autism. 

I never would have dreamed that being Autism moms would be a common thread between us, but there we sat, spilling our fears, dreams, hopes, and realities of the every day.

She's started down the Autism path more recently than I.  It was when I was sitting with her and I heard myself talking that I realized I've been on this journey with an autism diagnosis for the past four years.

Four years.

In some aspects it seems like it's been much, much longer and in some aspects it seems like it's been a lot less time.

I mean, shouldn't I have this stuff down by pat by now? But I digress..

One of the things she asked me was about being a mom of an autistic child she said something like "do you find that some days you think it's not so bad, and other days you're crying and it's horrible. Some days I don't want to believe this is happening and other days it all seems doable and totally okay?"

Um, yes I totally feel that.  All of that.  And in that moment I can see a beach-like scene of all of us Autism moms.  Some are just getting to the water, others are way, way ahead.  And we're all wondering if the others are feeling the same things, going through the same things, fearing the same things, celebrating the same things.

Riding the Waves of Being an Autism Mom. Surviving and Thriving at Super Busy at Home. #autism #autismmom

And the answer is yes.  No matter where you are on the path into the water, we're all getting hit with the same waves. 

I associate these emotions and good days and bad days as waves.  Allow me to explain:

When I first became an autism mom I couldn't believe this was happening.  Everything seemed like it was turned upside down: the cleanliness of our house, the amount of doctor's appointments you find yourself going to, the behaviors, the medicines, the fact that everything is different. At first this is the toughest.  It's the first wave you get.  I liken it to just getting your feet wet and getting used to those first waves that are coming onto the shore. It's cold and you're thinking of just going back to the shore where it's dry and warm but you keep going because your feet are already wet and sandy.

At first they seem really brutal but you keep walking further into the water. And you find what was at your feet is small compared to what's now hitting you on your shins and knees.  This is when you've been with a diagnosis for a year or more. You are starting to get used to the idea of having an autistic child.  You try to own it with a sense of pride with license plates, awareness walks, books, and jewelry. Most days you can stand that you have an autistic child now but every once in a while like a pebble rolls over your foot, your remember that under current along your feet, and again you are sobbing that your child has to have autism.  The waves that feel really bad though now are the ones that contain things like self doubt: wondering how you may have caused your child to have autism, guilt: feeling bad about having not being so in love with idea of having a kid with autism.  Other emotions in this level of waves include your patience wearing thin, the reality that insurance is horrible on every level of trying to help a child with autism, and just how utterly exhausting caring for a child with special needs truly is. 

And you feel like you are going to get swept under the water with these waves but you really want to jump the waves so you keep walking into the water. The waves that hit you at your waist are easier to deal with because you dealt with the first two stages so you kind of knew what to expect.  Depression, guilt, denying your child has autism, accepting your child has autism, happiness with progress, frustration at sadness, you can feel it all ebb and flow along the surface and you also know what's going on below.  Some days the waves are calm and days are great, and you have barely any trouble.  Other days the waves are huge and gruesome: trying to wash you away with drowning strength, they can carry you under in a depression that is often a month long struggle.

But still you fight, you want to live, and eventually you come to the surface.  And again you find yourself with these waves that are always present, always multi-leveled actions and movements with no telling which one will affect you the most. 

Today I left an appointment with the Developmental Pediatrician.  We were talking about other diagnosis on top of Autism and Apraxia and ADD.  But I was able to hold my head high.  I felt like I was just dealing with gentle lapping waves that are up to my chin and remind me how close I am to going under but the gentle movement makes me feel calm and secure.  Perhaps tomorrow they'll swallow me whole and I'll drown in sorrow and resentment for a while.

But for now I'm in the water, I'm swimming my swim and I'm okay.  That's my victory for today.

So for those of you who are just starting on the path into the water, just keep walking into the waves.  It's going to be okay. I promise.  I'm out in the shark infested waters inviting you to jump the waves with me. We'll hold hands and laugh together through this journey...scary waves and all. 

Homeschool Co-op Drop Outs: What I've Learned

So I am a co-op drop out. 

Yep, I'm a cool homeschool mom like that. 

I keep thinking of that song about being a beauty school drop out. 

I'm a Homeschool Co-op Drop Out. #autism #homeschooling #grace. super busy at home.

And yes that probably makes me a dork.  I'm learning to be okay with that.

The truth is that this has been a long time coming.

And by long time I mean about a month.

Here we go with my lengthy explanation.

We started a homeschooling co-op in the fall.  It was a group of other families with the moms teaching and assisting in the classrooms with class periods set up.  The kids went to different classes throughout the day and we had a lunch period in the middle. The co-op set the school year into trimesters. 

The first trimester seemed to go fairly well.  We had some issues but nothing serious in the classroom.  The big part I was having a bit of an issue with was when the second trimester came along, the only heavy weight class the kids were in was Chemistry and the kids were falling drastically behind the class with their homework. It wasn't for lack of trying but they were just not grasping what was being covered.  So I was having to struggle with how to get them to learn it while having them behind and not knowing whether to speed them up to be with the class while not understanding what they were doing or to stay behind to understand but go to class every week with unfinished homework and assignments.

The other classes were nice but they were extra curriculars.  Legos, crochet, etc.  And so by going to co-op I felt that we were kind of missing an entire day that could be used for instruction on fun stuff.  Don't get me wrong, I know they were learning things and having a great time with friends.  But I also knew that behind the scenes we were falling drastically behind in math, grammar, and latin.  Yoinkerdoodles.

I also somehow forget that Calvin has autism.  The summer and autumn we were in a really great cycle.  I don't look at my son and see "autism" plastered over his forehead, he's just him.  But over Christmas break he started being able to not communicate again.  And started stimming again.  And a whole other myriad of things including not having control over the tone of his voice.  So when he's answering you in a good mood he sounds like he sounds irritated and mad at you.  It's difficult on us.  It's super difficult on him.

And I just knew then and there.  There was no way I was going to be able to send him back to co-op like this.  I can't ask mothers to handle this when they have a classroom of other children to help.  I can't ask other children to act like nothing's going on when he's yelling at them for no reason. 

And so we dropped out.  I felt really bad.  I cried.  A lot.  I've asked that they allow us to return if we want but haven't heard what the final "verdict" from the leadership board is. 

But in the end of it, I am holding my head high.

I did what was best for our family.  While it was difficult for me because it might not be the best thing for Emma to leave but it is for Calvin, what that meant was if it's not good for one of us it can't be good for any of us.  It might seem unfair sometimes but we're learning we're a team and we have to stick together.

Dropping out of a homeschool co-op is teaching me all about grace.  Super Busy at Home.

As a homeschooling mom I am constantly worried about what people think of me.  I don't want others to think I'm a "weirdo" because I homeschool.  I want the other homeschool moms to think I have it all together. Ugh.  it's just a weird place to be sometimes when you carry this title.  But in this instance I felt that I had finally grown mature enough to be able to recognize that this was not working and it wasn't the best fit for our family.

Through this homeschooling journey I swear I am learning as much if not more than the children are.  I'm learning to laugh in the rain, to give myself grace when things get rough, and to see things as trial and error rather than failures when they simply don't work out. 

As I write this we should be at co-op right now.

Instead we dropped out. Before I would have felt like a total failure because of that.

Instead we made it half way through a math lesson today before Calvin went into his quiet corner in the homeschool room and was on his own with his cat for 20 minutes.  Then he went and played piano.  He learned 15 spelling words and successfully wrote legibly two sheets of words for me in handwriting.  All of those are things we wouldn't have gotten done even last week.  I'm considering this a win.

And as a homeschooling mom and an autism mom, I'll take as many wins as I can get.

Happy weekend sweet friends!  Hope you learn to look for wins and to give yourself grace.  Love you!

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