Quirks

Over this long weekend together I tried to document as many instances of Charlie's Autism "quirks" as I could.  This last week was a particularly difficult one with many meltdown's, tons of disregulation, destruction and sleep disruption.  Most times we can describe Charlie's behavior to others and they can't even imagine what we're talking about because they never see these things happen or can't grasp how serious it really is saying "yeah, my son has tantrums too."  Well, I'm sure he does, but Charlie's are magnified times 100 and can last for hours.  He often destroys entire rooms, will hurt himself, has a history of putting holes in our walls and countless belongings have been broken during meltdowns.

But the biggest thing to keep in mind is that he doesn't do these things to be defiant, he is trying to communicate with this behavior, trying to tell us something isn't right or that he's hurting, uncomfortable or needs something.  Yes, Charlie is verbal and can talk, but when he's this worked up he can't physically calm down enough to tell us with words what is going on or to even form the words in his mind and then speak them to us.  And I'll admit, I need to remind myself of this often too.  I need to remind myself that he's destroying his room and taking apart his bed for a reason.  And most days, the most difficult thing to do is to figure out WHY.

Some instances we can figure it out by watching what he was doing and taking a leaping guess as to what is wrong.  Many times we have no idea what set him off and have no idea how to make things right.  Friday was a particularly tough day for some reason and it was basically one continuous meltdown all day long with small 10 minute intervals where he would be ok before it started all over again.  Friday he destroyed his room- which usually happens a couple days/week.  But Friday I was exhausted.  It had been a long week by then and I just didn't have it in me to clean it up knowing he was still so disregulated.  You can see in the picture below a small portion of his room that was completely upturned.  You couldn't walk into the room and could barely open the door.  I'm holding a bottle of essential oil called Peace.  Both Charlie and I got a good dousing of that oil before I decided to tackle the bedroom- I got a dose to help keep me calm while cleaning and he got a dose to help him calm down in general.

Anyone need Peace?! I did before starting to clean this tornado of a mess

This picture below shows another time this weekend he dismantled his room.  It was less destructive than the Friday incident, but shows how he likes to take apart his bed.  At least he kept the mattress protector on this time!  Small wins!!

He often takes apart his bed

People with Autism have specific characteristics in behavior, social and communication.  Behavioral differences, like I described above can be one example.  Repetitive behaviors are another example such as rocking or spinning, lining objects up or even grouping items into colors or shapes.  Charlie often likes to line up his toys- mainly his trains or other small pieces of toys he's playing with.  Most of the time he likes them to be in a specific order or grouped together by colors.  The picture below, Charlie is lining up all of his stuffed animals.  He did this for hours on Sunday after we got home from church.  He had to have them in a sequence that made sense to him (totally didn't see a sequence that made sense to me- but to Charlie it made sense).  I think this was also very calming for him because it was something he had control over since our trek to church that day was a total last minute decision and did NOT go well at all (I'll talk about that in a bit).

Lining up his stuffed animals

Because he has a certain way he wants them and knows exactly what he wants them to look like, he normally doesn't involve anyone else- because they might mess up his plan.  However, I was surprised to see that Charlie let his twin brother Christian help him yesterday.  But if you look closely you can see Charlie is pointing and giving Christian specific instructions on where that animal needed to be placed and how.  Christian lost interest pretty quickly when he couldn't do it his own way, ha!

Showing brother where that animal needed to sit

Structure and routine is a must for Charlie, and many others on the Spectrum.  This helps him maintain predictability in his environment.  Charlie likes to be in control of every situation, so if he knows the plan and what to expect, he feels in control.  Throughout the week we discuss numerous times a day what will be happening next or what's coming up the next day.  We did not do a great job of that on Sunday.  Our morning plans had changed suddenly and we decided we were going to venture out to church.  Now, going to church isn't out of the norm for us.  We usually go every weekend.  But we hadn't originally planned to go since we had something else lined up.  Our plans changed quickly and with little notice to the boys.  Easton and Christian got upset momentarily, but Charlie's whole world was thrown off.  It was disastrous.  He kicked and screamed the entire car ride to church and then refused to go into his Sunday school room.  He was being so disruptive to the teachers and other kids in the room who were trying to listen to a story that we had no other option than to keep him with us until he calmed down.  We brought him into the entry area of the church where there are couches/chairs and can see the service happening from a TV.  You can see in the picture below that he got to sit with dad, had some water and calmed down.  Tyler was eventually able to take him back to his room where he spent the remainder of church.  However, because of that quick switch in plans, Charlie's entire rest of the day was thrown off.

Transitions are extremely difficult for Charlie as well.  Switching from task to task or leaving from one place to go to another is something that does not come easy for Charlie.  Each time we are met with resistance and lots of screaming.  Think about it.....how many transitions do you make in a day? Waking up and getting ready for the day, leaving the house to go to work or school, transitioning throughout the day at work or school, stopping what you are doing to eat lunch or dinner, and then resuming what you were doing before lunch or dinner, leaving work or school to go home, getting ready for bed at night, etc.  And I'm sure those are just a few transitions you make in a day!  These transitions, no matter how big or small, are extremely disruptive to Charlie's day and may take him awhile to recover from.  This is why knowing his schedule and having a routine is helpful for him.

Calming down with dad at church

SOMETIMES- it's something we work on with him daily- sometimes he is able to identify what will help him feel better and will do those activities to help him calm down.  Today, he rolled himself up in a blanket with numerous stuffed animals and laid on the living room floor for well over half and hour.  I kept checking on him to see if he'd fallen asleep since he was completely still and quiet.  Being rolled up like a taco helps provide deep pressure and tightness that feels good to his sensory system.  This made him feel secure and really helped to calm him down.

Blanket roll-up sensory tool

We look forward to having Sunny join our family later this year to help in these instances.  She can help Charlie feel secure and to calm down when he's having a meltdown and hopefully have less instances of a destroyed bedroom.  Sunny will be able to go with us into the community where she will provide reassurance to Charlie in uncertain moments and help him transition from task to task.  She's working on training right now to be able to do these things for Charlie.

We don't share these stories to gain sympathy, rather to help people understand these are more than just "tantrums" and also to spread awareness of what Autism can look like for some families and to let others know they are not alone in their journey.

As always, feel free to share our story and our journey to get Charlie a service dog.  Leave comments, ask questions, we'd love to hear from you!

Fundraising for Sunny:

Custom Designed T-Shirt (ends June 5):  https://www.booster.com/charlies-service-dog-fundraiser

Online Crowd-funding Page:  https://www.youcaring.com/charlieking-801310