Wednesday, July 23, 2014

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.

Saturday, July 19, 2014

22. Three Weeks of Summer

When I went to pick J up from camp, one of the first things he said was, "Can you sign me up to come back next year?"  I was so happy that he had a great time.

He came back from camp ... different.  He came back happier and more talkative.  He's always been fairly talkative to me, but less so to my husband.  Of course, I am home all the time with him, and my husband works around fifty to sixty hours a week.

It's been a week since J has been back from camp and while he still has a debilitating fear of bugs, he didn't have any other tantrums.  He was a little hyperactive from time to time, but he listened and did his chores without complaining - sometimes even initiated his chores without me having to ask.

When we went to the park with his baby brother, he played with him on the playground very carefully.  He blocked any openings where he might fall, he steered him away from the slides that were hot (he even tested the slides himself first to see if they were too hot).  On the slides that were cool enough, he carefully helped him so he wouldn't fall off the bottom of the slide.

For a week, he didn't play his DS or on the PlayStation.  He didn't play with his Legos.  Instead, he spent an entire week spending time with me and his brother.  He did some arts and crafts with me while the baby slept, we watched the Lego Movie (more than once), and in general just spent time as a family.  Everything was relaxed and quiet.

When he was at camp, I know the counselors said his name and said hello every time they passed him.  I wonder how much of that came back with him.  He has certainly been much more open to saying "good morning" when he wakes up and "hello" when my husband wants in the door from work.  Whatever happened at camp that helped him to come back a happier person, I welcome it and am grateful for it.

For now, we have three weeks left of summer before school starts back.  We do get out before Memorial Day, but going back the first week of August seems really early as well.  I know I will be glad for school to commence, but part of me is really going to miss having the boys home all the time.  We will have to make the most of our three weeks and the little time we have left!

Kings of the Playground


Tuesday, July 8, 2014

21. Summer Camp

If there's one thing that most families with special needs kids don't have, it's an excess of money.  We're fairly lucky overall because J doesn't have any physical needs that require a lot of money, but we do pay for medications and therapies.  We buy things to help him cope better at home, and often end up spending our excess money on things to help balance the house out.  So when it comes time to look for summer camps, the ones geared towards children with autism tend to be outrageously expensive for our budget.

Then I got an email from someone in our autism group about a camp that only asks for $100 donation for a week-long sleep-away camp.  

Are they serious?!

We signed J up and he was accepted.  The activities are very stereotypical summer camp stuff: canoeing, archery, horseback riding, and they even have a rock climbing wall.  The big difference is that the counselor to camper ratio is extremely low, which will really help ensure J has a good time.  Whenever I sign him up for a neuro-typical activity, I always worry because what if the teachers/counselors/adults in charge don't know anything about autism?  What if J has one of his more violent tantrums where he screams and pounds on the floor or walls?  By going to a camp where every single adult there knows and understands autism will help not only ease my mind, but also ease J's mind.

He wants to learn archery.  That's all that he talks about, so hopefully they can help him learn.  It is something that I could see being a huge issue because if he can't hit the target then the situation has the potential for meltdown-mode.  Luckily, the camp should be completely able to handle any mishaps like that.

Our other big kid was not happy that J gets to go to camp.  He thinks it is unfair that he doesn't have autism.  But all he knows at his young age is that autism gets the ability to "cut lines" at Disney and go to fun camps.  He sees the tantrums and the hardships, but I think his young brain doesn't process it the same way we do as parents.  I can understand his frustration since he wasn't able to go to the same type of camp, but we still sent him to different camps - camps that may be harder for J to attend because of his special needs.

I feel like I need to process these thoughts regarding a child wishing they had ASD a little more in another entry.  It's rather disheartening to hear, but somewhat understandable.  It also goes back to my thoughts on making sure that your special needs child does not become the most important person in a family, and I think because J inevitably gets so much attention (albeit not always positive) because of his ASD that our other boy does not always feel as important.  From my eyes, I can sometimes see it, but other times it really frustrates me because he gets so much other focus.  On Mondays my husband takes him out to dinner, just the two of them.  He went to a camp - just him - that specifically I did not sign J up for.  We always reinforce the good things he does, and the things he is good at.

Anyway, I dropped J off at camp yesterday and he was very excited.  Which I know he was excited even though he showed no outward signs of it.  We had his bag all packed and ready, put it in the car, and drove the 50 minutes to camp.  We checked in, he got his temperature taken and answered a few regarding his medications, and then we walked to his cabin.  He picked out a bed and I helped him get his sheets on.  He brought his pillow pet, which he prefers to use as a pillow than a regular pillow, and his Star Wars sheets.  He gave me a hug and was ready for me to leave so he could have a good time and play!

I wasn't emotional dropping him off because I knew he was excited to be there.  I was very happy for him and very happy that he would get to have a normal camp experience surrounded by kids who are just like him and adults who have worked with autistic kids before.  We are very fortunate to have been given this opportunity.

Before he left, J picked out some notecards and I put addresses on them and gave him some stamps.  But if he doesn't write because he's having too much fun, I am okay with that!  I would rather him forget to write home because he's having a blast, but if I get to see a note from him then that will make me happy, too.

I still have three more full days before I go pick him up on Friday.  Here's to a great week at camp!