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.

13. Off the Autism Clock

This week past week was spring break.  The two older kids are with other family members, so it's just been me and Tiny at the house, and Stormy when he's off from work.  First of all, I don't have to wake up at 6a to get anyone ready for school.  That is the most amazing part of this week.  Tiny sleeps until at least 9a, sometimes 10a.  He didn't sleep for almost the first entire year of his life, so he's making up for it now.  

Honestly, it's been a very nice break.  It's given me a chance to relax and only focus on one little person.  It's let me think about the things I want to do, need to do, things that are just out of reach and how I need to grab hold of them.

Whenever I get small breaks from the kids, whether it's an evening or a day, it allows me time to be ME.  Not the me who is a mom or the me who is an advocate, but the ME who is ME.  It's nice to be able to breathe and not always feel as though I'm just trying to catch my breath.

We get breaks like this every so often, but we always have at least one of our babies at home.  Usually the baby, since he's so little still.

It's times like this week, when I get to be calm and laid-back that I gain strength to deal with the chaos that sometimes erupts in our house.  Us parents of special needs kids aren't superheroes.  We're just regular people and these are the kids we have.  We didn't choose them, they were given to us, whether by God or nature, but it wasn't our choice, so sometimes we need a break.  

There was a period of time where I tried to be that superhero, where I tried to implement all the suggestions from the therapist, implement advice from autism articles in books or websites.  I tried to do anything and everything that was supposed to help J.  But I reached a breaking point.  I felt like an emotional mess inside; I was a fraud.  I was trying to keep it together, trying to show how strong I was, how brave, how together, but tiny things made me want to cry.  Or they did make me cry and I couldn't figure out why.

For me, it boiled down to needing help and support and not feeling as though I was getting an adequate amount of either.  I tried to do everything and keep my cool and calm, but sometimes all the stress and emotions overflowed and I had to let it all out.  There is something to be said about allowing yourself to cry.  I remember several months ago when I let it happen.  It was last September and I was in the middle of a painting project in the house, and I had a very limited amount of time to get it finished.  I had thought Stormtrooper was going to tape everything off so I could finish, but it wasn't taped, and I looked around the room and felt this overwhelming pressure build up in my chest, throat, and behind my eyes.  I probably shouldn't have been so upset about blue-tape, but it was the final thing that made me lose it.  I sat down in the room and cried.  I cried for a while, everything came pouring out of me, and the pressure slowly began to dissipate.  Then the tears stop, I picked myself up off the floor, went to the kitchen and drank two large glass of water, and I immediately felt stronger.  I went into the bedroom and painted as much as I could before Tiny woke up from his nap and I had to stop.

That day, the tears were very violent.  I haven't had a breakdown like it since, but I have also used my words to really convey the times when I need extra support.  My husband has also been more giving when it comes to times that I take for myself away from the house, away from the kids, so not only do I get more emotional support at my house, but also more support when I need my time away from the house.  Those times are very important because it's time to relax and not have to be a mom - a normal mom and a special needs mom.

I've wondered if my husband doesn't fully understand what it's like being at home since he works for 10-12 hours a day, but I think it's a learning process for both of us, to find the balance of understanding and support so that neither of us gets overwhelmed in the roles we play in our family.  It has taken time, but he's become an advocate in his own way for both me and J, and also he's become more understanding and supportive.  He's relinquished a lot of the apprehension over what he doesn't understand and has allowed me to take the reigns.  Of course there are times where he disagrees, but overall he has a much more open mind to the therapies we do, and the hardships we face along with the celebrations we make.

I know not everyone is as lucky as we are to have family set in place who will help take care of any of our three babies so we can get a break.  It's still a somewhat rare occurrence, but a blessing nevertheless.  We are also lucky that our ASD diagnosis wasn't severe so that our family is unable to help us out as much as they do.

My favorite times are when the family is all together and happy, but I have enjoyed the time off the Autism clock this past week.  I've gotten to a place where I am not embarrassed to be open about the hard times we've had with ASD.  A lot of my strength has been learnt during times of darkness.  And the ugly truth of ASD is that there are a lot of ugly times, a lot of emotionally overwhelming times.  But as much as the time off has been lovely, I'd rather have my sweet ASD kid home and I'll give him a huge hug when I do finally get to see him!

2. The Players

In my last post I wrote a short dictionary of acronyms and words we use daily in our house.  None of that means anything if there aren't any characters to apply them to.  Of course, by "characters" I mean my family.  So let's set up the scene and the players.

Stormtrooper

First I will start with Stormtrooper.  That's my husband under there.  He is the moneymaker for our family.  A geek. A good guy.  If he's not looking up or building Star Wars costumes or other cosplay, he is looking up or building something to do with cars.  He is honest ... maybe to a fault, but he makes me laugh.  We dated once and he broke up with me, and then realized his terrible mistake several years later, and now we're married.  No really, though, that's the truth.

J

J is the ASD boy.  He was diagnosed when he was seven, in April 2012.  Now he's nine and in third grade.  He loves to build Legos, but only if he looks at the instructions.  He has no trouble with 3D puzzles and is an amazing artist (so long as he has a picture to look at for reference).  He is beginning to deal with his differences, but isn't ready to admit he's different at all.  He cannot tie his shoes, he cannot sit still, and he is so literal he often doesn't understand jokes.  I once videoed time talking about the times he wakes up in the morning ... he didn't change topic for 3 minutes 54 seconds.  

Little Iron Man

Iron Man is the Middle Child, except he's not.  He's also nine, though technically younger than J, but so far he is neurotypical - meaning he is not on the Autism Spectrum.  Does that mean he's normal?  Ha!  No way.  He loves trains, Legos, and Iron Man - especially Iron Man.  And he loves to sing and dance.  He doesn't understand anything about ASD, and we try our best to treat him and J as equally as possible.  Which is actually impossible somedays.  Ah, but we try.  

Tiny Baby

Tiny is tiny.  He's now a year old, and he wears 9 month clothes (some of which are a little big).  He is loud and such a troublemaker.  He doesn't sleep through the night and sometimes skips his nap, yet he is still the happiest baby around.  He is very proud of himself for walking on his own.  He really likes ceiling fans and anything with wheels.  Also, he is obsessed with Cheerios and jumping in his bed.  This is my husband's favorite picture of him. 

Slytherin Mama

Now me.  If my husband is in love with Star Wars, then I am in love with Harry Potter.  I'd like to say I would be a Ravenclaw because I'm clever or Gryffindor because I'm brave.  I'm certainly not nice enough for Hufflepuff, so I think I'd end up being in Slytherin.  I do have a sense of self-preservation, and I like to succeed.  I work two days a week at a coffee shop and I make cards/invitations/party favors on the side.  Sometimes logos or PDFs.  I never wanted to be anything other than some sort of artist.  I never thought I wanted to be a SAHM.  But I am and I do love it.  Babies are pretty cool, even if sometimes they smell.

So now we enter the scene, where we live our day-to-day lives.  Most if it takes place in a medium-sized town on the outskirts of a larger metropolitan area.  We don't have a shopping mall, but we have every store we could possibly need.  There is a lot of Southern charm down here, where the people send thank-you cards for gifts, and give baked goods in return for favors.  We do say "y'all" and "fixin'" and "bless you" even if you don't sneeze.  And while the charm and the manners and family traditions are nice, it sometimes isn't as forward-thinking and accepting of ASD as I would like.  But I'm beginning to realize that is the world at large, and not just a struggle down here.