Thursday, 19 April 2012

Boy Wonder

Before I start this post on travelling with Elliot, I want to remind everyone that I am simply focusing on specific NLD moments he experienced on our trip in order to help people better understand him and this disorder.  This is in no means an all-encompassing portrayal of Elliot.  Although NLD affects all areas of his life, it in no way defines who he is.  Elliot is a very lovable kid with a gargantuan amount of energy.  He loves to play sports, to play with Lego, to create mischief with his brother and friends, and to spend time with his family.  He is affectionate, sincere, and imaginative.  We love him dearly, and, although it can be challenging to raise him, we look forward to seeing his precious face each morning because it brightens our day.

Just look at that face . . .

He's so adorable!

As we were planning our vacation this year, Mr. Level-Headed and I did some research and took in consideration what we could do to make this trip more enjoyable for Elliot and for those travelling with him.  Although this made the planning process more tricky and a bit more expensive because we had to purchase additional day passes at Disney, it was well worth it!

First of all, people with NLD grow tired more easily than most people because their brain is running at 150% capacity at all times.  While we process certain stimuli and perform certain actions almost subconsciously and with very little effort, they do it consciously.  They think about EVERYTHING!  And, as one can imagine, this must be draining.  With this in mind and past experiences at Disney under our belt, we opted to buy a 6 Day Disney Pass even though there are only 4 parks because this would allow us to do some of the bigger parks over the course of two days.  This was a necessity!  Most days we could not stay in the parks any longer than 4-5 hours because it was obvious that Elliot was approaching melt-down mode.  The funny thing is, though, leaving the parks early turned out to be a blessing for everyone by giving us extra down time and the opportunity to relax and have fun together.  During these times Mr. Level-Headed and I would alternate turns taking Zoe shopping, we would swim, and we would play mini-putt.

In fact, swimming was the life saver of our trip.  According to our research, swimming is one of those sensory integration tools like massage, drinking out of a straw, manipulating a rubber toy, etc. which help our brains to realign or restart when we are feeling overwhelmed or having a difficult time modulating our emotions, which for the person with NLD, is all the time!  So, when planning out our days, we made sure that we scheduled time for swimming at least twice day.  It is all he wanted to do!  It was really neat to watch him do it too because, although he would join the pool antics of Zoe and Avery sometimes, he spent most of the time sitting fully-submerged on the bottom of the pool (Hello, Percy Jackson) or diving deep under the water and slowly swimming across the pool.  At one point he told me he likes swimming because it allows him to slow down his heart.  As a parent, I really wish I could spend just one day in Elliot's mind so I could better understand what life is like for him.  Thankfully, with comments like I just mentioned, I do get brief glimpses into his reality, but I fear it is not enough. He is still, and probably always will be, a huge mystery to us.  

Another sensory integration tool we used a lot was a rubber Perry the Platypus doll . . . oops, I mean action figure:

Perry was a gift from heaven!  Elliot was not enjoying his time at Hollywood Studios at all, and wanted to return back to our resort after only an hour.  We tried our usual bag of tricks, which had worked wonderfully at the other parks, like:

playgrounds, and Disney has two very cool playgrounds in Hollywood Studios and in Animal Kingdom.

A Bug's Life playground in Hollywood Studios

The GIANT sandbox in Dinoland, Animal Kingdom

 But like most things for Elliot, just because it worked one day doesn't mean it will work another day and, unfortunately, today was one of those "not working" days.

We tried a nap in the playground (which worked before):

But to no avail.

So we pulled out the big guns, his books:

But they too were not working . . .

Then we turned a corner, and saw a cart selling Phinneus and Ferb memorabilia.  Avery ran right over because he had been saving his last few dollars to purchase a Perry the Platypus stuffy, and Elliot followed him.  Then, along with what I imagine to be the songs of angels and a bright light shining down upon our salvation, Elliot picked up a rubber Perry the Platypus, and it was instant relief.  His hands kneaded and pulled on Perry, and he was soothed.  Hallejulah!  Without hesitation, we bought it, and Elliot never let it go.  With his magical Perry, he was able to enjoy the remainder of our day, and he even went on the Rock n' Roller Coaster!!

Perry helping Elliot to plan his next move with Mr. Level-Headed and Avery

Perry helping Elliot to relax as we waited for our flight home
Perry has become his best friend!

So, some of you may be wondering why we fear Elliot's meltdowns so much.  Well, they are not pretty, and unlike a toddler, they do not always resemble a temper tantrum.  They often involve Elliot contemplating suicide (no fun at all and very hard on this mama's head and heart), Elliot threatening to run away and/or actually running away (which happened in Epcot this year.  As we were entering a show, Elliot slipped outside of the closing doors and was gone!  It took me a whole ten minutes to find him, hanging over a bridge watching some baby ducklings swim in the water.  I am sure he was wishing he could be one of them), and then there are his full-blown meltdowns complete with screaming, crying, and body pain.  Which leads me into our next story . . .

So, we had just entered the happiest place on earth, Disney's Magic Kingdom, and Mr. Level-Headed decided we should ride Space Mountain to kick off our day since the previous two days our boys were "Thrill Ride Junkies".  Elliot was ecstatic!  He even wanted to sit in the front.  As we were zipping through the fast paced labyrinth of winding rails and loud noises in the pitch black, I thought to myself:  this may not turn out well.  I am so wise!  When we departed from the ride, Zoe and Avery were enthusiastically squealing about how scary but fun that ride was, and Elliot was sullen.  

What's wrong, Bud?

My arm hurts . . . followed up some implausible explanation of where this pain originated.

You see, as we have learnt from past experience, Elliot gets phantom pains whenever he is overly excited, scared, or anxious.  So we looked at his arm, brushed away his concerns, and assured him that it would feel better after another ride.

Well, it didn't.

In fact, it had spread to his other arm, and he was now holding both of his arms limply across his chest.

So, again relying on past experience, I told Mr. Level-Headed to find an employee and ask where the nearest First Aid Station is.  While there, we would simply explain to the worker that our son, who has Aspberger's (very similar to NLD but better known and would save us from a lengthy explanation) experiences phantom pains when he is overwhelmed.  We would go on to explain that all we needed was a wrap to put on his arm.  Well, my plan did not work out as I had thought.  Instead, a swat team was sent to examine Elliot and there were talks about possible X-rays, hospital visits, and casts, etc. thrown around.  


Well, from what I can surmise, this freaked Elliot out, and he started screaming: "I'm going to faint . . . I am getting dizzy!"  So, the swat team grabbed a wheel chair for him and advised Mr. Level-Headed to take him to the nearest Station where Elliot could lay down and they could examine him.  Mr. Level-Headed thanked them and took Elliot out to find me and the other two kids.  When they approached us, Elliot was rolling his head side-to-side and moaning.  Zoe and Avery looked terrified and so did Mr. Level-Headed.

I don't know what happened.  He just lost it . . . .and he explained all that went down with the swat team.

Being the mom, I sprang into action, I told Mr. Level-Headed to get the other two kids on a ride and I would see if I could settle him down.

As soon as they left, Elliot started screaming:

My body's malfunctioning!  My body's malfunctioning!  

I swear I do not make this stuff up.

I wheeled him away from the crowd of people now staring at us and found a quiet place in the shade.  I took off his shoes, massaged his feet, and started talking to him about what had happened.  

That must have been pretty scary being surrounded by medical people and having them talk about  what could be wrong with your arm.

That was nothing!!  Things like this always happen to me!  I always get hurt!  But my body feels weird!  My head is fuzzy!  I am malfunctioning!

You are not malfunctioning!  You are having an anxiety attack.  Your body is really scared . . .

Then gradually, between sips of pop through a straw and having his feet rubbed, Elliot began to calm down. He started to talk about how scared he was on Space Mountain and so on and so on.   By the time, Derrick and the kids returned from the Lilo and Stitch ride, Elliot was at peace, but he still needed the wheel chair and the wrap for his arm.  Mr. Level-Headed, and I decided to call the day short after another hour of rides for Zoe and Avery and our reserved lunch at the Liberty Tree Tavern (very cool because you feel like you are in an 18th C tavern and they serve a full turkey dinner meal . . . . yummy!).  While waiting for the other three to finish up in the Haunted House, I wheeled Elliot around some of the shops.  Eventually, his mood started to change.  He was much more relaxed, and after coming out of one of the stores, he decided the wheel chair was too much of a nuisance.  After we met up with the rest of the gang, he decided the arm wrap was a nuisance.  Instead of taking any chances, though, we told the kids we were going to head back to the resort after lunch so we could swim and relax for the rest of the day.


And the meltdown had finally ended.  Phew!  This was a bad one, and probably the worst he has ever had, but for now it was over, and we could go back to enjoying our vacation.

Yes, life with Elliot can be very challenging, but at least it is always interesting . . . tee hee!

We love our little guy!

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