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.

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

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!

20. Top-Secret Vacation Day Three/Four

The boys, especially J, were super crabby after being out so late at the Magic Kingdom.  So we gave the boys a day off from parks.  They stayed at the hotel and the pool for almost the entire day.  They slept in late (J almost 'til 11am) and just relaxed.  Even swimming all day was less tiring than if they had gone to the parks.

We left the boys at the hotel in the afternoon/evening with my niece so that Stormy and I could go to Epcot and have some adult time.  We ate at a Mexican restaurant, rode some rides, and then headed back to Hollywood Studios once again for our fourth round of Star Tours and second of Tower of Terror.  We love our kids, but it was nice to be able to escape for the evening.  Even at home, we don't get to out on many date nights, so this was so nice for us.  We ended the night eating ice cream (Stormtrooper is obsessed with ice cream) and fell into bed and slept.

Monday we all woke up and went to breakfast and then headed to Universal Studios.  My husband got to geek out at Star Tours and Star Wars weekends, but Universal has the Wizarding World of Harry Potter and that is my thing.  I was so excited.  I loved it.  It was fantastic.  We rode the rides and got some treats from Honeyduke's.  The boys have both read the Harry Potter books and seen the movies, so they were excited about going, too.

J had one meltdown while there, but it was definitely nothing we were upset about.  My niece, husband, and I wanted to ride on the dragon ride, but J doesn't like roller coasters that do the "corkscrew" kind of turns.  And our other boy is just terrified of any rides (which we didn't even know until we went to Disney and he was scared to ride on everything that was on a track).  We weren't going to force either of them to ride something they were scared of, but we still told them they had to wait in line with us.  When we got to the front, I asked one of the employees if there was a place they could stand and wait because they didn't want to ride.  Jokingly, the guy said, "Oh, no, everyone in this line must ride the ride."

J burst into immediate tears and just buried his face right into the middle of my chest.  It took a few moments to get him to calm down, but he did, and he wiped the tears away and waited while we rode on the ride.

We rode water rides and got completely soaked.  The boys seemed to enjoy that.  I was skeptical about J enjoying it because if he gets uncomfortable he will complain for ages, but he seemed to like being wet!  My husband took the boys on some sort of spinning ride that was similar to the tea cups.  Since my husband nearly killed me on Saturday on the tea cups, I sat the ride out and let him torture the boys to sickness on it!

Universal was nice.  We also spent the day with one of my old friends from Starbucks who moved down to Orlando a few years back.  It was great to reconnect with him and his wife - and also get some inside scoop on working for Disney!  We hopped over to the other Universal park so that we could go on the Transformers ride.

I think the boys enjoyed Universal more than Disney because they were much more familiar with the movies and rides.  Some of the rides from Disney were still old-school characters, like Dumbo or Peter Pan, and that is not as relevant to them as Harry Potter, Spiderman, Jurassic Park, or Transformers.  Over all Universal was really amazing and I am so glad I got to see Hogwarts, and I am glad the boys were able to share in that experience.  They got to watch Stormy geek out over Star Wars, and me over Harry Potter.

We drove home on Tuesday, and we got to see Tiny after five nights away from him!  And now on to the rest of our summer!  Which looks like it is going to include a new swimming pool, clay camp for Iron Man, and autism sleep away camp for J.  So much of the summer has already passed and yet we have so much more left to experience!

19. Top-Secret Vacation Day Two

Our first day was really pretty successful, and looking back, I don't have any complaints about it.  It was a really long day; we got back to the hotel very late.  We were out for about fifteen hours that day.

On Saturday, we slept a little later.  Stormtrooper went to Hollywood Studios for the parade while my niece, the boys, and I ate breakfast and went to the pool for the next couple of hours.  The boys splashed around and enjoyed cooling off in the water.

Once Stormtrooper was done with the parade, he picked us up from the hotel and we went to Magic Kingdom.  Since we already had our disability pass, we were able to set-up our Fast Passes for the day.  The boys had a blast driving the cars in the speedway and we were able to try out the new seven dwarves ride.

This day I saw a lot of J's symptoms come out.  Once his medication wore off, his hyperactivity was in full force.  He was also very, very tired, but when he gets cranky, there's nothing to sway him away from it.  He reached a point where he stopped caring about the rides and wanted to spend his Disney gift card and go back to the hotel.  He was tired, we all were, but he became argumentative and very snappy.  I know he had fun, but towards the end, Stormy and I wanted to ride the Haunted Mansion one more time, and Iron Man wanted to ride Thunder Mountain, and J didn't want to do either.  My niece took the boys to Thunder Mountain, but J refused to get on so he had to wait until they were done, and my husband and I got to enjoy some kid-free time at the Haunted Mansion - which, coincidentally is both of our favorite ride.

My husband had one negative encounter that day.  He was talking in a group of Star Wars folks and it was mentioned about the new Seven Dwarves ride.  The Fast Pass was used-up for it, so if you wanted to ride, you had to wait in the line (which was 120 minutes when we were there!)  My husband said that we were going to ride and use our disability pass to bypass waiting in the actual line.  And someone said they did not think it was fair that we could just walk to the ride for free, no strings attached.

So let's revisit that for a moment.  With the disability pass, I walked up to the ride, and asked them to sign us up for a return time.  The return time is comparable to the actual wait time for the ride.  We didn't get to immediately cut the line.  We rode other rides and walked around until it was time for us to return to the Seven Dwarves.  It's not a free pass to cut lines, but also if you're a stranger, you don't know what other families go through.  You don't know how we deal day to day, our frustrations, worries, fears, or even our strengths.  So to make a blanket statement of how things are not "fair" is ridiculous.  When J's hyperactivity kicks in, he is so all over the place that waiting in line has the potential to be disastrous.  When we walked around the parks, he bumped into people and wandered (never far, because we kept a close eye on him).  I was very careful to continually check in on him when we were in a line or in a ride, to make sure he was okay because the last thing any of us wanted was a meltdown in the middle of the park.

I think Disney tries to make the experience the best it possibly can be for every family going.  From what I saw, they took disabilities, including food allergies, very seriously.  They seemed to try to take the worry away from parents over whether their children would have an enjoyable time.  For that, I was extremely appreciative.  To the man who wasn't compassionate at all, my husband replied with, "Oh we deserve to use the pass ... we pay for it every day living with a kid with ASD."  It can be very difficult having a child with special needs and when a place like Disney wants to help eliminate some of the stress, we welcome it with open arms.

On day two, we got to ride a lot of rides in the Magic Kingdom:  Astro Orbiter, Big Thunder Mountain, Buzz Lightyear, Haunted Mansion, Tea Cups, Jungle Cruise, Pirates of the Caribbean, Seven Dwarves Mine Train, Stitches Great Escape, Space Mountain, Speedway, and of course, the train that took us around the park as well as the Monorail.  That's a lot of rides for one day, and it's no wonder the boys got tired.  We were exhausted, too!  We got back to the hotel and finally fell asleep after midnight.  Such a long day, but so much fun.

18. Top-Secret Vacation Day One

Last Thursday, May 29th, my stepmom (whom everyone calls "Grams") came to pick the boys up.  Her BFF was also there with her grandson, who is roughly the same age as our boys.  They went off to play while Stormtrooper and I got the boys' stuff together.  Unfortunately, I had a really bad cold, so I packed the boys' clothes and car-stuff together and my husband set it all up properly in the car while I took a quick nap.  We also had to pack Tiny's things because he stayed at my parents' house.

We got in the car, filled up on gas, and went to my parents'.  We exchanged Tiny for the big boys and started driving.  We told them we were going to a Star Wars event, but they've been to so many parades and things that they weren't upset about being in the car, or too inquisitive about where we were going.  

After about three hours, we asked them if they had any idea where we were going.  Once we finally told them we were going to Disney World, Iron Man got super exited and bounced up and down in the seat.  J was very neutral, as I expected he would be.  When I asked them if it was a good surprise, J said, "No, not anymore," since I had just told them.  Still, he was excited.  Later on in the vacation he told me that inside his brain he is excited and happy, but he doesn't know why his brain doesn't tell the rest of his body to express how his brain feels.  

We got to the hotel around 10pm Thursday, went to bed, and got up early the next morning for breakfast.  Stormy had to go to Hollywood Studios early since he was part of the parade.  The boys and I waited to meet some friends of mine who worked at Disney so we could spend the day with them.

The first Mickey we saw!

The boys in front of the lake while we waited for the ferry.

We took one of the ferries to the Boardwalk and the boys got to see parts of Disney before everyone was awake and at the parks.  I got to explain how different parts of Disney work, how some people stay in different resorts/hotels while they visit and how the buses, trolleys, and ferries work.  When we got back to Hollywood Studios, I went to Guest Relations.  I was originally so hesitant to use this because I always feel there are people who are so much worse off than we are, who need it more, but at the same time, I could envision meltdowns and sensory overload if we were in a line full of people.  Also, at the end of the day, J's hyperactivity kicks in because his medication wears off, and he starts to wander, starts to rock back and forth, flail about, and standing in line with people could have gotten really terrible if he started knocking into people because he cannot stand still.

We got the pass and I am really pleased we did.  The Disney cast member was very nice and helped with the whole process.  We ended up getting a pass that allowed us to wait for a ride without having to wait in the actual line.  Instead of waiting for two HOURS for the new Seven Dwarves ride, we were given a time to come back and bypass the long wait.  The staff is supposed to write down the time so that we would wait as long as the others in the actual line, but because there's always a small wait to get on the ride anyway, they usually wrote our return time for less than the stand-by line.  It was extremely helpful.  It allowed us to get something to eat or drink, visit a store, or wait in shorter, more manageable lines.  

At Hollywood Studios, we were able to use the pass for almost all the rides we wanted to go on, which was especially useful for the Toy Story ride, which always had a line longer than an hour.  Overall, J did really well.  He went on Tower of Terror (granted he said he never wanted to ride it again, but he at least gave it a chance).  My husband walked in the parade in the morning and joined us in the afternoon for the rest of the day, along with my seventeen-year-old niece who we brought to babysit the boys if we needed it.  

That day, everything went pretty smoothly.  We didn't have any meltdowns or complaining.  Both the boys were happy.  I did have to have a conversation about what Autism is with Iron Man; afterwards he looked at me with a glazed look.  I don't think he's ready to understand/accept anything about Autism yet.

We ended the day with fireworks and then we all went back to the hotel.  All in all, day one was a great success.

17. Vacation Vacation

School's out for summer!

This is the first weekend of no-school.  We let the boys stay up way too late the last two nights, and we didn't have them do any chores.  All they did was play, play, and eat.  

On the last day of school, there was the awards ceremony to help celebrate the kids' accomplishments in school.  Little Iron Man got one for attendance, one for being a star student, and one for A/B Honor Roll.  He has his own struggles, mostly with impulse control.  Sometimes he acts out for attention, and he certainly misbehaves in school way more than he does at home.  He is extremely intelligent, and I think his behavior definitely affects his grades at times, but overall, he is a very good kid, and we are certainly proud of how well he has done.

At school, the kids have to take Accelerated Reader (AR) tests on the books they read.  J got an award for getting over 100 AR points, which apparently is difficult to do when you're in third grade.  However, I'm not exactly super proud of that award.  I'm pleased, of course, but each quarter, the kids were given an AR goal and they had to reach so many AR points each semester.  J would see how many points he would need, find ONE book that would give him those points, read the book, take the test, and then wouldn't take any more tests the rest of the semester.  It's a backwards way to be really lazy.  The books he chose weren't necessarily easy books, and he had to read and absorb the books so he could get all the points for the test.  He loves taking shortcuts.  Or maybe he's really a genius in hiding.  I don't know.

He also got a penmanship award for having the best cursive in his class.  He told me he knew he was going to get that one because it was just "so obvious" he had the best handwriting.  I've heard this is strange with kids with ASD, but J's talent is art, and for as clumsy and uncoordinated as he is with everything else, he can draw.  He can't tie his shoes, but he can draw very intricate things.

As far as honor roll goes, J got the A Honor Roll for getting all A's for the entire school year.  So far  he has never gotten a B.  When we had the conversation about his grades, he was not really sure what a B meant.  We briefly discussed grades and averages (which he understood better than I thought he would have) and I showed him his report card, which had his averages for each semester as well as his end-of-the-year average.  He was really disappointed in his Reading grade (a 95) and upset that in the third quarter he got a 99 in science, which was the only quarter he didn't get a 100.  I told him if his lowest grade is a 95, then we really have nothing to worry about.  He was pleased that the stamp on his report card said he got to graduate to the fourth grade.  

Third grade brought on a lot of ups and downs.  There were a lot of changes, but I feel that it was a great year of growth.  We found a new therapist that we like, J started going to the gifted program at school, we found a parent autism support group that was coupled with a  social-skills club for kids with autism, and because of all these different things he has greatly improved as a little person.  I have received a lot of comments from his teachers, family, and friends regarding his behavior, his improving social skills, and the way he integrates his new coping mechanisms.  

Hopefully we can continue to help him learn and grow this summer.  Therapy is the only thing that will continue; the rest will pick back up with the start of the new school year.  We are very excited to see where this summer takes us.  

Well, in FOUR DAYS it takes us to DISNEY WORLD, so the rest of the summer probably won't even be able to compare!