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.

What I'm Loving on this Monday

Hey y'all!  Hope you had a great weekend!  Ours was a weird combo of being super duper busy but still managing to get a ton done and home and starting the week feeling relaxed and refreshed.  Believe me, that miracle doesn't happen often around here!

I thought I would share with you a few things I'm digging this morning as we are getting our day off the ground....

Um, coffee!  Nick bought me some Door County coffee for me and had it sent to me while he was out of town with business last week.  So thoughtful.  Of course it is Pumpkin Spice...my fave! Also, I am doing the Trim Healthy Mama eating plan which I LOVE!  but the one thing I miss so much is Pumpkin Spice Creamer.  I use real cream and stevia in my coffee these days so the flavored coffee allows me to still have the taste.  It's the best Jerry, the best!

Adorbs outfits as Emma would call them!  This weekend I went up to the attic and got down the seasonal clothing bin (I buy so many of them I have a bin dedicated to holiday outfits. So handy and then they aren't taking up room in their closets when it's not time for them!).  I brought down all of the Halloween outfits and I was so excited to see this one because I bought it in the spring and had completely forgotten about it.  So much fun!  There's also a matching outfit for her American Girl doll.  I am having a blast dressing her like this and she is still not complaining about how I dress her (Thank you, thank you Jesus!)

Isn't she just the cutest?

This sweet boy was a champ with his spelling this morning!  This year we switched to Spelling Workout curriculum.  Cal is a level C and Emma is a level E.  Isn't that cute how that worked out?  Anyway, they both had tests this morning so he was having a quick review before we dove into it. 

It's been an amazing curriculum and they both seem to really enjoy it. Anyone else using this?

This visual timer.  Wow am I loving this thing today. 

I bought this for Cal about 3 years ago.  He hated it.  We tried it for time frames such as when he needed to get dressed but he would take the batteries out and hide them and then hide the timer and then it didn't work.  Funny how that works, right?

But this year we've been using it a lot with school.  Emma loves to use it for her work.  15 minutes of spelling?  She just sets the timer and it dings at her when her time is up. Easy-peasy.  If you have kiddos who struggle with transitioning from activity to activity or need a little help keeping track of their time, this thing is great!

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Well that's it...a quick list of things I'm loving today as we are quickly diving into the week!  Can't wait to see all that is in store for us this week.  I think it's going to be an amazing week here and I hope it is for you as well! 

Comment below with any fun plans you have :) 

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.

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. 

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.

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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Joy and sometimes dread come in the morning...

I've been a little quiet lately.  

Things happen around here and things are thought in my mind and it's often I find myself shutting down.  

The other day I shot this photo.  It's not much content, I know, but the sun is gently rising behind the fir in our yard. And I am reminded that there is beauty out there just waiting to be had.

Never mind that there's an autistic orangutan just trying to rip your face off living in your house. 

Beautiful sunrises still occur.

And so I keep pushing on.

Can I just say how much I hate Autism and this road I'm on with Cal? 

Because seriously, there are days, when I don't know how much I can take. 

I know people say that and then people trying to be supporting say things like "God never gives us more than we can handle" or "God gives special kids to special parents".

But if you have ever felt like I have felt than you know you want to get in your car and run those people over...slowly, intentionally...with a stolen cement truck with the spinny thing still going in the back.

Cal has been difficult.  To say difficult would be a vast understatement.  Those monkeys on planet of the apes taking over....that was difficult.  This is way over that. To the point I was in the doctor's office today crying, crying to the doctor about him. If you've ever cried to someone who listens to your seven year old's heart beat, there might be something wrong with you.  Just sayin'. 

But the lady did have some good advice.  She was able to get through to me enough to cut myself some slack.  

And she gave me permission to mourn.  This has been something I've been doing for the past four years...mourning. 

Mourning over the normalcy of child hood being gone.

Mourning over not being able to do normal kid things with him.

Mourning over not really knowing what normal is anymore.  

But she told me it's okay to do that and today I felt like this is what I've needed to hear.  She also gave me some wonderful advice. Here it is "kids with autism are not on the normal spectrum of what kids can do.  Some things they can do much better.  Some things much worse.  But life must be adapted for them and not them trying to fit into a normal life.  As you can't expect a blind child to know his colors so you also can't expect him to do things as a normal child.  You must give him boundaries and then expect him to do his own thing within those boundaries."

Wow.  That speech seemed life changing to me today.  

In homeschooling Cal has completely refused to do work.  Ugh, it's been like pulling hair out to get him to do anything.  In stepping back from the whole situation I am sure that he isn't learning in that kind of environment and it is such an emotional struggle for Emma and I to get him to cooperate that at the end of the day the whole family just feels drained and exhausted. 

So this afternoon I did what the doctor in more detail suggested I do...I insisted Cal stay in the homeschool area of the house and then I did school with Emma.  She and I got ALL of her work done in record time and he played with educational toys nearby.  He would often chime in if he knew an answer or recite memorization things that he was overhearing.  Overall it was very successful and seemed to do the trick in giving him a break but keeping him in the school setting.  

Hopefully in a week or so I can start gradually adding some school work in for him or to have him work with some more educationally based things that he can learn from.  

So that is where I've been in a nutshell.  I know probably several of you get where I'm coming from and those that don't I hope can empathize with me.  Still here alive and kicking and pushing on with the "dream" of Autism.  I know eventually this cloud of doom-feeling will pass and I will be able to enjoy the sunrises God puts out there for me to enjoy.