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.

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.

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. 

The "Fun" of Christmas with Autism

This isn't one of those posts where I'm all like "Christmas with an Autistic Child is like a dream come true..." because it just stinks.

The case of the stinks starts pretty much right after Thanksgiving. Or rather on Thanksgiving.

Christmas tree getting leads to over load.  Decorating leads to overload.  Cookies lead to overload.  Church performances lead to overload.  Shopping leads to overload.  Everything leads to overload.

And a lot of times people don't see it unless you are in the house with an Autistic child.  THEN I'm sure you see it. 

Our son, Calvin, will fall asleep when he's overloaded.  People say "oh, the poor thing's had a busy day." 

Nope, he just can't take anyone or anything, anymore.

Which is a great coping mechanism until it's 2 am and he's raring to go while punching me in the face to watch this one commercial with him.  Over and over and over and over.

Oh the Christmas joy.

Then there are the times when he doesn't even try to hide his overloaded-ness from anyone.

Take last Sunday in church for example...

Our cute, adorable Emma (who I always seems to describe like Grover) sang in church with some other girls. Nick pulls out his phone to video tape it. 

So here is the next 2 minutes of Calvin, full volume, in church with a somewhat Veruca Salt tone in his voice:

"I knew you had your phone. 

Why can't I play games on your phone?

No cell phones in church!

No cell phones in church!

Let me play games on your phone!

Why not?

No cell phones in church!

No cell phones in church!

You never let me play games in church!"

Oh.sweet.baby.Jesus.

If you seeing me saying this to my son it's not because I don't love him but rather because I am tired of whisper arguing in church after 3 sleepless nights.

Anyway, this is one of those Autism Mom Public Service Announcements to say, if you know someone who has an Autistic child, please cut them a little slack.  We all have a lot on our plates this time of year but for those of us with a child from Autism it takes everything to a completely whole new level. 

Just imagine we're trying to pacify one child so they won't completely fly off the handle at an event or at home and we are trying to make sure the children who don't have autism aren't feeling like the autistic child is spoiled and everything is focused on them and we are trying to plan for every little thing...is aunt so and so wears her strong perfume and they are going to complain loudly about how bad she smells what are you going to do? Or if that dog that they hate is there what are you going to do? Or if other kids want a turn with the toys at Grandma's and they don't' understand, what are you going to to?  We have 18 backup plans with 2 more to have as backup plans to our backup plans.  All that coupled with remembering green bean casserole and wrapping gifts and everything can just feel chaotic and overwhelming.

So if you know a Momma (or a Daddy!) who's little one has Autism, a hug and a starbucks giftcard can go a long way towards making us feel like we're not in this alone.  That you get it.  That you're here for us. 

And if you are celebrating Christmas with a little one on the spectrum please don't be freaked out.  Be understanding but don't treat them with kid gloves.  They will be able to sense it and that alone will feel weird and foreign.  Just be you to them and loving and understanding if they need to back away.  Look for those signs.  The child isn't trying to be defiant or naughty by not wanting to participate or do something but rather that may be their way of shutting down as a coping mechanism to try to avoid overload. We sure love our little ones don't we?  Christmas is so special for them and even if they aren't participating or are struggling, they're still here doing it with us.  They know everything around them and they get it on a deep level, trust me. 

All that being said...

Merry Christmas!  I have a feeling it will definitely not be a Silent Night.

Learning to Celebrate Autism

My blog description says that I have a dab of Autism thrown in but lately I haven't been speaking the language of Autism lately.  

I think I've been hiding from Autism. 

Is that even possible? 

Not so much. 

Well I've been trying to.  I don't think it's been going very well but, oh well, I'm a gal who likes to try new things. 

For those of you who are new here, our son, Cal, is seven and was diagnosed with Autism when he was four-ish.  So we've been figuring it out for a little while.  We've been through a myriad of therapies and counseling and services and oils and supplements and anything and everything (it's felt like ) that we could get our hands on. 

When he was very first diagnosed we took him off gluten and anything else we thought that might help.

But nothing happened. 

So we resumed life and tried to figure out our life with our shiny new diagnosis.

Then this past year everyone kept saying "you really should take him off gluten", "you should really try gluten free" and I thought thanks you hippies but we've been there, done that and nothing happened.  It did seem to keep coming up though so we figured we'd give it a whirl maybe someday a long, long way down the road. 

But towards the end of the summer I was at my wit's end with the kid.  He was hitting and destructive and there seemed to be no end in sight.   He was like a human tornado. 

So one month I was out monthly shopping and I saw these great Bob's Red Mill mixes on sale.  And before I knew it I had sixteen gluten free mixes in my cart and I had sent a text message to Nick saying "we've gone gluten free. Deal." You can tell we're really in love,right?

And guess what?  The gluten free diet is working!  Working, I tell ya, working! I'm so thrilled to tell you all about that sometime but seeing as my vast knowledge basically spans me telling you it works and I'm happy...that's about it. 

I can tell you that is has helped him to be so much more vocal and to show us his emotions. When before he felt excluded by neighbor friends he would punch or kick or throw something.  Now he comes in with big crocodile tears to throw himself in my arms and talk incoherently about it until I can calm him down and work through what he could do in the situation. 

For those of you who are Mommas or more specifically, autism Mommas, I know you are smiling and nodding with me because as much as we never want our kiddos to be sad, you know that that is indeed a very, very good thing. 

Anyway, Monday we were at therapy; which even that I've been in denial about.  Cal goes to therapy but we don't really NEED to go, just finishing up probably...

That is until the occupational therapist gave me his evaluation of how he's doing. 

And reality gets to smack me in the face all over again with the clear message of "HELLO!  Your son has Autism!" I had clearly forgotten...almost. 

Sometimes you can run but you just can't hide. 

The fact is my son has autism and try as I would like to think he doesn't, he does.  Me burying my head in the sand doesn't seem to take that away.  Weird that doesn't work, right?

Sometimes it's really hard.  I am part of the strongest group of moms ever that I had always hoped I would never, ever would have to be a part of.  And yet I am learning after I get my head out of the sand to hold it high because, by golly, we are making it.  We are figuring this out.  

The broken windows. 

And the broken Nintendo 3DS. 

And the armrest that was bit through. 

All totally workable. 

And the evaluation that normally would have me locked in my house crying my eyes out?  Well I actually looked at the dern thing and believe it or not, we're at least making progress.  And that seems to be something to celebrate. 

Celebrate. What a word. 

Yes, I celebrate my son's autism. 

I celebrate that being gluten free is working, that he is talking and communicating more and we are able to help him in this small, super expensive way. 

I celebrate that I get to be his mom and he let's me snuggle.  Even if I have a three kiss rule to follow that he strictly enforces. 

And I will keep celebrating because there is so much to celebrate.  And there will continue to be.

Always.