23. The Meltdown

J had his first major breakdown since camp today.  He took the green outside trashcan to the end of the driveway since the garbage is collected Wednesday mornings.  He somehow tipped the can over and half the trash bags spilled out, amongst other items.

The first thing he did was start to cry, which honestly neither surprised me or bothered me.  I knew it would be a painful process getting all the trash back into the bin, so I went upstairs to put Tiny down for a nap before coming back outside.  Stormtrooper had righted the can so that it was standing again, which was great.  The can was still full of trash and would have been difficult for J to put back upright, especially while crying.

Stormy and Iron Man went to fix the ramp up to our shed while I stayed at the end of the driveway to deal with the trash.  We live on a cul-de-sac so at least while J had his tantrum we didn't have to worry about cars or any passersby.

I told him he would not be able to go inside until all the trash was picked up.  He didn't want to do it. There were flies around the garbage, and J's biggest fear is anything regarding bugs and insects.  He was hysterical, tears and snotty nose, screaming and flailing.  I kept my calm and did just what the therapist said - to have him complete the task through to the end without giving into the tantrum.  

I mentally divided up everything on the ground and pulled out my cell phone.  I set the timer for one minute and told J which pieces to pick up and gave him one minute to do it.  At first he refused, he kept his feet firmly planted on the ground, and screamed.  The first thing he picked up was a small box, which he tried to throw into the trash can, but he missed and it fell back on the ground.  At that point a fly flew right by his ear and he took off running around the cul-de-sac, screaming.  Not crying or yelling.  But screaming in fear, a sound you would expect to hear from someone in agony.

Two of our neighbors came out of their respective houses and watched.  I ignored them and waited for J to stop running.  Then I made him come stand back next to me.  I put him in a time-out outside, which was more to stop the overstimulation and calm him down.  He faced the side of the house, hands by his sides, eyes closed, and I told him to breathe.  He stood there for a few minutes, and once he stopped shaking and crying, we went back down to the bottom of the driveway to continue to pick up the trash.

We were down at the cul-de-sac for about an hour.  There were four kitchen-sized trash bags, one small box, three Starbucks cups, and a couple of envelopes from discarded mail.  That's all that fell out and yet it still took that long.

I tried to find the words to convey how this meltdown was, but words cannot describe the extent of tho particular tantrum.  Crying and screaming, of course, but if you were not there, screaming is not an adequate word.  I stayed calm and talked him through picking up all the pieces off the ground, held him next to me as protection when he was flailing his arm, trying to shoo away phantom flies.  Time sort of stopped in my brain when it was all happening.  I knew our neighbors were probably wondering what on earth was happening at our house, but it was more important to help J through this.

Afterwards, my husband and I joked that one day our neighbors may call the police if they hear another meltdown like that.  It's no telling what they think is going on.  Unfortunately, it wasn't much of a joke and is actually a small fear in the back of my mind.  When people first see J, they see someone who looks normal and perhaps even speaks normally.  They don't see the autism until later, which in this case may be more of a curse than a blessing.

Also afterwards, I didn't allow myself to calm down, I just refocused on the family chores that we were doing when the meltdown began.  Once all three boys were in bed, Stormy and I watched television and then went up to bed.  I kept thinking about it and playing the image of J running around the cul-de-sac while screaming as though on repeat.  Sometimes these things are have huge effects on me, sometimes it takes its toll on me mentally.  It's so hard to stay strong all the time because autism isn't something that goes away.  When J has a good day, it doesn't mean he had a day without autism symptoms, it just means he had a day where those symptoms weren't overwhelming, a day without tantrums.  But even the good days have small bouts of stress.  It's a never-ending thing.

While J had his meltdown, Stormtrooper took the opportunity to have a conversation with Iron Man about autism.  He pointed out that J's meltdown and tears were directly linked to his autism.  

"Does that look like fun?  Does that look normal?"

Of course he said no, and Stormtrooper explained that just because J got to go to summer camp for kids with autism doesn't mean that autism is fun.  J wasn't having fun, he was scared and upset and sad and angry.  He was such a mix bag of emotions that he was nearly impossible to calm down.  Iron Man forgets about those times when he says things like, "I wish I had autism."  Stormy said it seemed to click a little more with him that having autism isn't something to want, isn't something to be jealous of.  For a little kid, I can understand the frustration where your brother gets a lot of attention because of his antics, where he gets to go to summer camp, and gets to get special line-jumper passes at Universal Studios and Disney World.  However, I do find it disappointing that he has difficulty separation the so-called "perks" from the obvious hardships and downsides to having autism.  I think the understanding will grow the older he gets, but it will be something we continue to work on with him.

We were supposed to go to our autism group get-together, but we had to cancel because of the meltdown.  I'm sure that they understood since all of their children also have autism, however it is still one of those realities that not all parents understand.  I've had friends who don't understand, friends who hear the phrase, "We're going to be late because J is having a tantrum," and wonder why I let my nine-year-old be such a brat.  God forbid we have to cancel something.  It doesn't happen often, but it does happen.  Thankfully we do have a close-knit group of friends and family who understand about J and don't question his bad days, they accept them as a part of our reality.

Maybe one day I will find the correct words to fully describe how terrible this particular meltdown was, but I am glad that it's over.  Hopefully our next tantrum will wait a while.  I don't know if I can handle any more tears.

6. Pushing the Limit(less) Part II: Responsibilities

In my last post, I talked a bit about breaking my ankle and what that meant for J.  This post expands on that.  It was a terrible few months - and my terrible I mean there was anger, depression, sadness, loneliness, and pain.  Mostly physical pain, which I cannot even begin to describe.  

Stormtrooper has a job where he leaves the house around 6am and gets home anywhere from 6pm-8pm.  Five days a week.  So beyond working, he also had to do all the grocery shopping, cooking, and cleaning.  As I grew stronger, I could start to do a little more, but once I had the baby, healing was doubled because I had to have a c-section, so my body was healing from two surgeries in the span of a month.  Stormtrooper was stressed and overwhelmed, and the last thing he wanted to deal with was J having a tantrum over his shoelaces.  (Truthfully, the shoelaces are a huge point of contention because at nine years old, J cannot tie his shoes.)

So we started making J responsible for more chores around the house.  It was slow going and came with a mountain of tantrums and meltdowns.  

The first thing we taught him was how to start the water for his own shower, how to quickly adjust the cold/hot knobs to get the right temperature.  Before, he was able to wash himself, wash his hair, and dry off (mostly), but he hadn't ever done the water.  The first week or two, it would sometimes take him a solid five or ten minutes just to get the temperature right.  Now he can take a shower, in and out, in fifteen minutes - and that's including washing himself correctly, which was also a lesson we had to help teach him, and getting his pajamas on.

The first time he had to do the temperature himself, he cried.  He stomped his feet and screamed.  Because he couldn't get it right.  I was downstairs and still in a position where it was very difficult to get up and down the stairs on my own, so as to not risk my safety, I didn't go upstairs until Stormtrooper came home from work.  (Luckily, that only lasted about a few weeks and then I was able to move much more freely, albeit slowly and carefully.)  

That first night, J ran down the stairs, stark naked, with tears and snot covering his face, claiming the shower was broken because it was too hot.  We talked about turning the cold knob little by little until the water was warm.  A few minutes later, he ran down the stairs, stark naked still, with more tears and snot covering his face, claiming the shower was broken because now it was too cold.  And it went on like that until he finally got a temperature he could tolerate.

The next night was much the same.  So was the one after that, and the one after that.  Until finally, there wasn't any crying.

It was such a relief to no longer have tantrums about the showers.  I honestly cannot say how long I would have allowed his tantrums to continue if I hadn't been injured and had been in a place where I could physically intervene more easily.

After the shower was better solved, I began adding on more responsibility.  I taught J how to do his laundry, how to specifically clean his room or bathroom or parts of the kitchen.  I made chore cards that outlined, step-by-step, how to do every chore/responsibility.  I wrote and rewrote them, removing as many gray areas as I could without overcomplicating them.  Every step was a work-in-progress.  Sometimes we took a step back, sometimes we took two steps forward, but eventually we found an even plane where responsibilities were routine enough for him to follow.

Without the very specific outlines, J seems to be unable to complete certain tasks.  He is not an auditory learner; he absorbs information visually.  So we either hand him his chore cards, or place them on his bulletin board, which also has a white board for messages.

Iron Man also has an identical board and also uses the chore cards.  Sometimes he needs them just as much as J does!  I think a lot of that is just being a little kid, of course, but it also allows us to show them exactly what is expected of them when they do certain tasks, like clean their rooms.  

Next to the white boards is our daily schedule, which outlines the day.  We have several cards, most of which don't have times because putting times on things leads to a lot of stress.  For example, I have 6a alarm, because that is when he wakes up in the morning, but if I placed specific times on when to do homework and chores, it would not allow for deviation.  J does not do well with switching or changing his schedule, which is fairly typical of ASD.  If I gave him 30 minutes for his homework, then after 30 minutes he would stop and go on to his chores; he would not finish his work.  He can be very, very literal.  The schedule is more of a fluid guide, and it works well.

To someone who does not have a child like J may think that the cards seem overly strict, but that was never the point.  Perfection was never once the point.  The point was to have a visual aid to fully explain how to do things, how to do chores and simple things around the house.  The point was to help eliminate tantrums and meltdowns.  J's books on his bookshelf don't have to be in any sort of order, but when the books are stacked on top of each other or with the titles not showing, then J just leaves them there and won't read.  When he knows what books are in his room, he will read for hours, book by book, or chapter by chapter.  To tell someone like him, "Clean your room," he would have no idea exactly what that meant.  

Before, he would move things around, pile things on top of each other, clear the floor, but every other inch of the house would still be an absolute mess.  The best example of this was before I labeled his dresser drawers, he would mix his clothes.  Even though we decided shirts would be in the top drawer, I would find shirts in all four drawers.  Once I labeled them, shirts never found their way out of the top drawer.

J thrives best on routine and consistency, and that's how I treat the chores.  They are a list, step-by-step, and he is able to do them well because they are routine to him.

The schedule is not necessarily strict either, but is an outline for our day.  Before the schedule, he would often ask, "What can I do now?" and not always like the answer.  Now he is so used to the outline that he doesn't always pay attention to it, because it doesn't change too much, but the days he has therapy or his ASD club or we are going to run errands, like go to the grocery store, I put it on there, and he sees it, and becomes fully accepting of it.  Before, he might balk or fight against doing something he didn't want to do.  He still doesn't like going grocery shopping, but if he is expecting it, then he is able to mentally prepare for it, and thus, will go willingly without a tantrum.

A lot of the things he does around the house came about because of my fall and having the baby and needing him to be just a bit more self-sufficient.  A lot of what came afterwards was figuring out exactly what he was capable of and allowing him to actually be capable.  Which may sound odd, but I've met a lot of parents who don't have their children do anything - whether or not their kids have special needs.  When J does something well and I praise him, his body language changes.  He has a very difficult time expressing emotion, but I've learned to read him, and he loves praise.  There are still things he has a lot of difficulty doing, so for those things, I will help him with each step, or guide him so that he will hopefully learn.

That time period was a great learning experience for both of us.  I learned just how capable J was and I learned how to help push him to do more things on his own, but also learned to really read the signs for when he reached his limit.  Before my fall, I worked full-time, and I didn't have the time or the energy to devote to something like this.  I certainly do not fault any parents who do not have their kids do things like laundry or cleaning their own bathrooms; I certainly did not have the patience to deal with that before I stopped working.  But now I see his growth and responsibility and it does nothing but help secure my hopes that one day he will be able to be self-sufficient enough to move out and live on his own, happy and healthy.