We Got Your Back, Kid

It's funny how different autism symptoms seem to ebb and flow.  And some stick around all the time. For example, sensory issues are always present with Charlie.  Sometimes the sensory difficulties are more glaringly obvious than other times, but it's always there.  Or having a tough time transitioning from one thing to another is a constant.  Troubles riding in a vehicle safely is getting better, but some days is tougher than others.

Being rigid (not being flexible in thinking or in plans) comes and goes.  Some days he can totally go with the flow, other days (or weeks) he has a hard time getting past certain things.  Right now we are on a hard upswing with rigidness.  The other day Easton and Christian found sticks outside that they made into magic wands.  They were practicing magic spells and having a grand time.  But Charlie was super upset because; 1- they had sticks in the house- therefore they were breaking the rules, and 2- they are sticks, not magic wands.  There was no wiggle room.  It was a totally black and white situation with no in-between.  Even after telling him that mom and dad told the boys they could have the sticks/wands in the house he wasn't convinced it was ok. This went on for several minutes before we could get him interested in something else.

Rigidness rears it's ugly head often.  It can show up when we take a left to go to church when we usually take a right at that corner.  It can show up when he's playing with his cars and they MUST be in a certain order when he lines them up.  Rigidness shows up when he wants to wear the same type of shirt every. single. day. (it gets interesting when mom hasn't had time to keep up on laundry).

Some days are really good and others not so much- just like anyone else in this world.  Knowing this means we'll keep working on it with him.  We'll keep working on problem solving when those tough moments pop up.  We'll keep helping him remember to use his coping skills in the hard moments.  And we'll be flexible if plans don't go according to how we thought they would.  It's not a big deal to us that our "normal" looks very different to everyone else's when we are out in the community.  

And as tough as these things are for us as parents to handle, think about how frustrating these things are for Charlie to live with.  No amount of frustration will ever be enough for me give up on my baby.  We'll keep trying because we love him and he deserves our best efforts.  We'll keep going places, because he needs to learn how to live in this world.  We'll keep doing new experiences because what is life without seeing the world around you.  Even if it is hard or frustrating (for all of us), we're not giving up.  Tyler and I are not about to back down.  Not now, not ever.  We got your back, kid.

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.