Trials

I'll be honest, these last two weeks have not been completely peachy.  We've had many moments of joy and fun interspersed with anxiety and meltdowns.  It's been busy with the holidays, but it's been largely without structure.  And Charlie craves structure.  He thrives on it.  He is happiest when there is a schedule he can predict.  He prefers it because he knows what's going on and there is less of the unknown.  As much as we can try to plan things out and have a "schedule" there is still a lot of down time.  And honestly, it's sometimes stressful to us as parents to have to try and fill full days on a two week school break.  We need down time, all of us, even Charlie- although he would disagree.

Visits to our other family's houses this holiday season went ok overall.  Charlie recently told us the most stressful thing for him during the holidays is going to other people's houses- talk about good insight!  We noticed it went a little smoother if Charlie had unlimited access, with no barriers, to Sunny while we were visiting.  This is not a surprise to us.  We knew this already but it was definitely confirmed these last couple weeks.  When Charlie can have Sunny by his side things just go a lot smoother.

So what have we been up to these last two weeks?

We spent a couple of days at one of our favorite locations, Ironwood Springs Christian Ranch, for one of their Autism Retreats.  They tailor the programs specifically for people with Autism and their families.  It's a no judgement, no apology zone where we can relax and bond as a family.  It's a place where everyone you're surrounded by can relate to the daily struggles of autism.  We had a great time snow tubing, hot chocolate, lots of crafts, movie night with popcorn and of course, Charlie's favorite, Clyde the Camel.  We did leave a little early the last day because we could see Charlie was starting to have a rough time.  We felt it was important to get ahead of the meltdown and head home where Charlie is most comfortable.

We have had our fair share of hockey interspersed with everything else we've done.  This is a work in progress, but I see it is a lot easier this year.  And I think Sunny plays a huge role in this.
I tried a movie with the boys on my own.  Of course, we chose a movie that had been out for awhile and went to an early showing on a weekday when I knew it would be less busy. Who knew going out to a movie had to be so strategic! It wasn't our best time at the movies, but we at least made it through the whole movie without having to leave the theater.  It helps that we could get seats in the very back row so Charlie could walk and move around without bothering anyone behind us.  This time he spent a lot of time on the carpeted stairs laying next to Sunny and playing with the wall lights.  But that's ok.  It could have went a lot worse.

New Years Eve was spent at home with the boys, exactly where we needed to be.  We had our own little party with fondue, games, sparkling grape juice and a mock ball drop at "midnight" (8:30pm).  It was perfect.  And of course Tyler and I were asleep before 12.

We tried sledding one evening as a family.  Something that should be fun and carefree.  But it ended in a meltdown because Charle fell off his sled a couple times.  We explained that sometimes falling off happens when you go sledding (this was not his first rodeo, if you know what I mean), but that didn't help at all.  By this time in the holiday break we could see the meltdowns increasing.  We know he's had enough unstructured time.

We even took a day trip to the Minnesota History Museum. The whole day went spectacular.  We stopped for lunch on our way to St. Paul.  Both Tyler and I were blown away with how well lunch went.  Just a short two years ago we couldn't go out to eat as a family.  Back then Charlie had a hard time sitting, waiting, eating...basically everything about it was hard.  Things started changing when Sunny came into the picture and since then we've practice a lot. I guess practice really does make perfect progress. At the History Museum were there for almost 4 hours and the boys had an excellent time (so did mom and dad).  When we do day trips like this Tyler and I are always aware that meltdowns and sensory overload are only a corner away.  But on this day we were also able to relax and enjoy ourselves as well.  Have Tyler and I become seasoned in outings involving autism?  Probably not, but we'll take a victory like this any day.

Through all of this we talk often about how many days are left of Christmas break.  Like, daily.  Sometimes we talk about it several times a day, because Charlie needs to know what's going on in order to feel in control.  Most kids want to know how many more days are left of break because they don't want it to end.  Charlie is the opposite.  We talk about how many days are left so he can look forward to going back to school.  Talking about it helps him feel calmer.  But do you want to hear something kinda funny?  Talking about it at our house is a double edged sword.  See, Charlie's twin brother, Christian, has anxiety and talking about Christmas break ending is causing Christian's anxiety to rise.  Big time.  We have to talk about it to help Charlie stay calm, but talking about it makes Christian's anxiety worse.  It's been an interesting two weeks, I tell ya.  Definitely not for the faint of heart.

Anxiety

Anxiety, we see it spike more at different times of the year with Charlie.  Holiday times we definitely see a rise in anxiety.  We've seen it growing for over a week now.  The anticipation, the expectations, the excitement, and specifically going to other people's houses- this one he's actually vocalized in the past week about what he doesn't like about holidays.  This is huge. It's hard for Charlie to 1- identify what bothers him and 2- be able to vocalize it to someone else.

Charlie's anxiety comes out in different ways such as hyper focus on different items or activities.  For example, the past few days he has overly focused on his dominoes and cars. Lining them up just as he wants them.  Not much can tear him away from these items when he's super focused on them.  Anxiety can show up as an increase in meltdowns or an increase in sensory issues.  Anxiety can show up in lessened communication- not being able to voice his thoughts or carry on a reciprocal conversation.  This is already difficult on a good day, it's even worse when anxiety is high.  Anxiety can show up as a disruption of sleep- often for more than one night.  And sometimes anxiety shows up as all of these things all at once.

This is what we do:
We stay calm.  We try to implement a sensory diet (heavy lifting, climbing, wrapping/hugging tight, deep pressure, swinging, brushing, etc).  Sometimes we need to get sneaky in trying to get these things into his day since he can be a little resistant.  We get Sunny involved as much as possible- we have her do as much deep pressure work as he'll tolerate (Sunny lays on him to provide deep pressure), or we get Charlie involved in training tasks to help take his mind off of whatever is bothering him.  We also stick to routine as much as we can (which is already lacking since he doesn't have his normal routine of school/home/therapies) and we talk about our schedule- a lot.  Even during the day we give lots of forewarnings on what's coming next.  We do countdowns a lot to help Charlie transition to the next event.  For example: "In a half an hour we are leaving for Church" and then a little later "In ten minutes I need you to get your shoes on." Ten minutes later we ask him to get his shoes on and then tell him we will be leaving in 5 minutes.  We do these countdowns for a lot of things.  We offer snuggles and we offer breaks.  Especially when we are at someone's house or in a busy place, we offer breaks in a quiet area with Sunny to do some deep pressure therapy.  Sometimes he takes them, sometimes he doesn't and sometimes we insist.  It's all up to what he wants/needs.  But since he doesn't always vocalize what/when he needs something, we are always checking in with him.

For the last month he's had his own calendar that he can write on, color on or check the days off.  We have our schedule written down on the calendar and what he can expect on which days.  He knows we go to other people's houses during holidays.  Unfortunately there is no way around this.  But we have a system set up that we've stuck to since the boys were babies.  Everyone we visit is family and Charlie loves each and every one of them, but it's a lot for him.  Many times he is able to hold it together while we are at someone's house, but the minute we get into the truck to go home he lets it all go.  Tyler and I know we are Charlie's safe place, which is why he saves it all for us. And Charlie knows we love him unconditionally.

Growth

If you would have told me a year ago that Charlie would be able to go to his older brother's hockey games and sit through the entire game, I might not have believed you.  You see, last year we were able to make it through one game.  And even then we made it through by the skin of our teeth.  I wasn't able to get to many games last year.  But this year....this year has started out different.  So far we've been able to make it to two games, one of them a double header.  And Charlie was able to make it through each time!  Now, I can't tell you what the rest of the hockey season will bring, but for now, I'll take this!

Sunny has been a key factor in helping Charlie stay occupied during Easton's hockey games.  Sunny, and well, lots of things to keep him busy.  Charlie sits with Sunny, hugs her, plays with her ears and gives her kisses while watching Easton skate.  And Sunny even likes to watch Easton skate!

I'm sure there will be games we'll need to miss this season, but as long as we can get Charlie to go, I won't stop going.  This is just one indication of Charlie's growth this year.  And it's not simply because he's another year older.  It's not because he's starting to "outgrow" Autism.  That will never happen.  Autism will always be here.  This growth is because of all the incredible hard work Charlie has put into everything he does.  This kid is amazing really.  I guess therapy services 3-4 times a week for the past 4 years has made a difference.  

Each week Charlie sees a lead therapist and a skills worker that work on certain things with him over and over again.  Things like recognizing emotions in himself and other people and how to deal with those emotions appropriately.  Or going out into the community and interacting with other people, how to have a reciprocating conversation, learning to vocalize frustrations before it turns into an epic meltdown.  Sometimes they work on playing games, following the rules of the game and taking turns.    Seemingly simple things that most kids learn easily, but that have been a little more difficult for Charlie to grasp.  

One thing they've worked on a lot is being patient and waiting.  Which has really paid off.  Because you can see he has been able to sit at Easton's hockey games and be patient until the end.  Which means this mama has been able to watch her oldest baby play hockey the past couple of weeks.  

There are still struggles.  But today I'm going to focus on the growth.  Such wonderful growth.  Part of this growth is owed to Sunny too.  She supports Charlie in ways that Tyler and I cannot.  She gives him confidence and helps him feel more secure no matter where we are.  On days like today, she helps him transition from each activity, provides deep pressure to help Charlie calm his body and stay regulated- especially during car rides, she helps him stay occupied and focused and can sometimes help bridge social gaps for Charlie.  

Sure, Charlie has some great tools to help him along, but it's the hard work Charlie puts into everything each day that has made the incredible difference we see.