Opening Night Jitters

Recently, a friend of mine, whose son is also on the Autistic Spectrum, told me that new research suggests that children with Autism are extremely sensitive. This is contrary to all the research done before which suggests that these kids remain detached and aloof to what is going on around them. According to the latest research, they believe that perhaps this perceived detachment is simply a defence mechanism, which prevents the child with Autism from becoming overwhelmed with the acute intensity of emotions they experience from certain circumstances. For me, I think this research is dead on! From the time he was born, we have always said that Elliot's greatest challenge is that he feels life too intensely. What may make us feel a little nervous, excited, happy or anxious, almost debilitates Elliot and makes life very challenging for him.

And this is why I think the past couple of weeks have been so rough on Elliot. You see, we started a new soccer season, which means a brand new team for Elliot. He has played with many of these kids before, but as we were figuring out from the sidelines last night, half of the kids are new to the team. Also, last year, during the last couple of games of the season with one particular team, there were quite a few aggressive outbursts from the parents of the opposing team. This really shook Elliot up at the time, but unfortunately, as I learnt last night when I was catching the tail end of one of Elliot's rants, he is still feeling anxious about them and was concerned that it could happen again.

As I mentioned yesterday, Mr. Level-Headed and I have been perplexed as to why Elliot has not been sleeping and why ordinary tasks like his school work have suddenly become insurmountable for him; however, yesterday, the light finally dawned and I realised it was the new soccer season. Our day started at 5:45 am when Elliot woke up, and he wasn't just awake, he was wired. As the day progressed, his hyper, over-the-top antics gave way to a very intense anger and then eventually to a very serious case of opening game jitters. By mid afternoon, Elliot was ranting about how he hated soccer and that it was the worst sport ever. I thought this was strange, but I ignored it and instructed Avery to do the same. Then, he finally began to confide in me that he was nervous. He was nervous that the kids would not play their positions. He was nervous that they would not score. He was nervous that he would let the team down, and he was nervous that the ref may not be able to control the parents. All of his worries started pouring out, and I all I could do was assure him that everything would work out for the best.

Then, Mr. Level-Headed came home early with a bunch of pool supplies. Honestly, this man may not realise it, but sometimes he is our knight in shining armour. Elliot was stomping around the house, frustrated and scared, and so Mr. Level-Headed told him to come outside and help him vacuum the pool. Physical labour really seems to bring Elliot out of his funks. When it was all done, in spite of the rain and the chilly temperature outside, Mr. Level-Headed and the boys hopped into the pool. When I looked down at them from the porch, I noticed that Elliot, in between chicken wars, would dive deep beneath the water and slowly swim his way across. There is something about the water cradling his entire body that enables him to reboot, and when they finally made their way back into the house for supper, I noticed that Elliot was relaxed and laughing. He was excited for the game, and he was confident that they would do their best. He was a like a completely different kid!

So, after supper we made our way to the field. It was damp and chilly, but I wouldn't have wanted to be anywhere else in the world because there on that field, I saw Elliot excel like I have never seen before. He was in his element. He played with confidence, with skill, and with leadership. I couldn't believe this was my boy! He had really stepped up to the challenge, and in the end, his team won 5-4 against a team that went undefeated last year. And even more exciting, Elliot scored THREE of those goals. A hat trick! I was so happy for him, and Avery, who is now an official member of Kingston's U12AA team and no longer a call up like he was last year, was vibrating with excitement. When we returned home, Avery's enthusiasm seemed to intensify as he bounced around the living room reliving moments in the game. Elliot, however, grabbed his nightly bowl of cereal, and then curled up on the chair and immediately fell asleep. His job was done. Everything worked out for the best, and finally, he was at peace.

Mr. Man would not stop for a victory photo.

This guy is always up for a photo op.

I enlisted Elliot's new buddy, Ethan, to help me get a  photo  of Elliot. There is nothing quite a like a healthy dose of peer pressure to keep this boy in line.

Way to go Kingston! As we were commenting along the sidelines last night, you all played a great game, and we were impressed with how well you all played together. I think this just may be our best team ever!

The Long-Awaited Reconcilation

The boys woke up at the crack of dawn this morning. It was 5:45 am. Mr. Level-Headed was in the shower, and I was sleeping lightly amidst all my pillows and blankets. Then out of the blue I heard a sharp, piercing cackle, followed up by an eruption of giggles.

Ugh! The boys are up.

Don't get me wrong; I love my boys, but they did not settle until 10:30 pm last night, and let's face it, there is only so much one mama can take. So, who is the culprit behind all of this madness? Well, that would be none other than Elliot. He has been off his rocker for about two weeks now. He is not sleeping, he is agitated, and his emotions are on one long, and wild roller coaster. We can't seem to pinpoint what is going on, but from past experience, we think it is the change in season. School is coming to a close, soccer season is starting, and the days are longer. The change in routine that comes about with each season change seems to really mess his little system up, and so we just have to wait it out. We just have to help him get through it, and we just have to try our best not to throttle him.

It is going to be a very long day.

Pray for me.

Anyhoo . . .

Enough with my whiny rant. It is Tuesday! I am officially 17 weeks today, and I visit the doctor today to hear the always adorable Thing 4's heartbeat. Oh, and after last night, when all three of my children were blatantly ignoring me and not cooperating one bit as I was trying to get them all to settle down for the evening, I texted Mr. Level-Headed one last time for the day to tell him that Thing 4 is officially my favourite offspring. You see Thing 4, amidst all of the hullabaloo his siblings were kicking up,far exceeded the expectations of his/her obligatory bedtime nudges and gave me a whomping fourteen kicks in forty five minutes. This is new record for Thing 4, and quite out of the ordinary for such a young fetus, but what can I say, we make active kids.

Anyhoo . . . again . . .

Sheesh! I can't seem to remain focused this morning. What I really wanted to blog about today is my precious puppy Scout and is adorable new fur cut.

Look at that face!

And how cute is that bum?

His cuteness factor has shot up like 100% ever since he got shaved, and he knows it too. Oh, he has become so obnoxious (in a cute way of course). No one can sit down without Scout jumping right up on top of them, putting his face right up to theirs, and begging for some loving with his pleading puppy dog eyes. 

Who could resist a face like that?

And I am pleased to announce with all that fur gone, Scout's odour has become far less offensive to the pregnant me and we have reconcilliated our differences. It's good to have my best buddy back!

He also makes the best pillow for my growing baby bump.

Scout, I think it is fair to say that you are officially my second favourite offspring . . . tee hee!

Happy Tuesday everyone!

The Tao of Elliot

Elliot is my most quotable child, and yesterday took the cake.  Initially, when he said it, I laughed, thinking to myself:

What a nut!

(in the most loving and affectionate manner possible)

But, what he said stuck with me throughout the day.  When Mr. Level-Headed and I woke up at 3am to a strange vibrating sound coming from my desk, which turned out to be nothing but Baby Girl's cell phone letting us know it was running out of batter power, I thought of it again.  Then sleep eluded me because I continued to think about it.

This boy may be onto something!

Now before I just blurt it out,  I must warn you this idea is not to be trifled with.  You should not simply think about it and brush it away with a chuckle as I initially did.  No, you need to allow this thought to meander through the hallways of your subconscious, take root in one of the deepest caverns of your mind, and blossom into something brilliant, which it will.  Trust me!  

Without further adieu, I present to you a most precious gem from the Taoism of Elliot:

How can I possible learn if you insist on teaching me the right way.

(said in response to some math instruction)

It's so bohemian, so unschooling-like, and so profound. 

Later that evening, after he dismissed my demonstration of the "right" way, Elliot decided to use his chopsticks like this. 

By golly, I think this boy has a little more Skov-Nielsen in him than we thought!

Happy Thursday!

Comfortable in his Own Skin

I was prepared for a battle, but it never came.  He woke up.  He grumbled how he missed March Break and asked when summer vacation started, but then he stopped.  He started his morning routine:  He showered, he ate breakfast, he read his scriptures, he made his bed,  he watched his allotted half hour of screen, and then he got to work.

Who is this kid?

It's Elliot, and dare I say, I think he has finally become comfortable in his own skin.  He is finally getting this thing we call life, and he is finally starting to understand its ebb and flow. 

Lately, he has been saying things that make me stop and want to shout:

Eureka!  The boy has got it.

Like yesterday, we were studying a book called "What to do When Your Temper Flares" for health, and we were talking about slowing down your body. Elliot piped up:

That's why I like carving wood.  It makes everything slow down for me.  My heart slows down and so do my thoughts.

I swear my mouth dropped, and I didn't know how to respond. 

Who is this kid?

Looking back, I didn't even write out Elliot's bedtime routine for his grandparents when we went away, which is something I have always done in the past.  I guess I just figured he knew it, and sure enough, he does. Grampy was astounded when he told Elliot it was time for bed, and Elliot began to do the drill, without any prompting:  He put his jammies on, he brushed his teeth, he grabbed a Melatonin, he prepped his blankets just right, he turned on the fan, he turned on his red light, and then he fell asleep.

Again, who is this kid?

Sure, this may not sound like much to you, but for us, this is huge.  Up to now, even the smallest routine like going to bed would send Elliot into hysterics.  He couldn't figure out what was expected of him and how to go about it, which would set him off into tantrum mode, every single night, but that has stopped.  Heck, he seems to have even conquered Daylight Savings Time!

Okay, so if you are still not convinced that we have reached a ginormous milestone with Elliot, listen to this:  March Break was busy for us, and there was one stretch where we spent three days in a row having friends over.  This is a lot for Elliot, and to top it all off he was invited to spend the night at a friends' house.  He excitedly said yes and began to go through his sleepover check list.  As I was driving him to his friend's, I noticed that he looked awful.

Are you okay, Bud?

Yeah.  I'm just exhausted. We've had a lot of people over lately.

You don't have to sleep over.  I can pick you up in a little bit, or we can even call and say this is not a good time.

No, I will be fine.  I don't have to entertain Isaac like I do the other kids.  Isaac understands me and we can just chill out together.

Okay, but if you change your mind, call me.

I will.

And he was fine.  He stayed the whole night.  

The next day, our church was putting on a Winter Olympics for all the kids, and I was in charge.  I had to go to the chapel early to set up for the activity, and Mr. Level-Headed dropped the boys off to me.  If I thought Elliot was tired the day before, he was done today. I took one look at him and cringed.

Ugh!  This is going to get ugly.

But, again, he surprised me.  He told me he just needed a few minutes alone and went off by himself to one of the classrooms.  Then, when the other kids showed up, Elliot came out and was completely on his game.  He laughed, he played, and in the end, he even thanked me.

Mom, that didn't suck as bad as I thought it would. I had a lot of fun!  You did a great job.

Okay, so this is really starting to freak me out.  

WHO IS THIS KID?

Seriously, though, just writing this post has brought me to tears. It means that all the prayers, all the sleepless nights, all the hard work, all the studying, and all the time we have spent implementing and going over even the most mundane routines, are working.  We have finally broken the code to Elliot.  We have finally made contact, and Houston, we have no problem!

Yep, we've achieved equilibrium just in time for for puberty to hit and to send everything back into a whirlwind . . . tee hee!  Life, it always keeps you on your toes.

Have a great Tuesday! 

Brutally Honest

Last night as we left soccer, one of the other moms asked Elliot how homeschool was going.  I could feel my insides tighten up.  People with NLD are brutally honest, and do not understand there are times when a filter is required.  I leaned over to hear exactly what his take on our week was because, in all honesty, it sucked.

Not good actually.  I don't think I put a full day in this whole week.

Well, it happens.

Yeah, hopefully next week will be better.

I am sure it will be.

I was shocked.   Elliot did get it.  He recognized that he had a bad week, and he was probably painfully aware of  why it was so bad.  You see last Friday, one of Elliot's teeth became loose.  No big deal, right?  WRONG!  It was a huge deal to him, and he became fixated on trying to get it out.  Oh, and when I say fixated, I mean fixated with a capital F.  He could not function.  He could not do anything except work on that tooth.  I texted Mr. Level-Headed:  Elliot has a loose tooth, and he is so far gone, I can't reel him in.  School is not getting done with him today.  He texted back:  I think that's best.   I love that my husband gets it.  People with NLD have a hard time modulating emotions, blocking out distractions, and interpreting pain, which explains why my poor boy spent that evening and, many after it, writhing in pain on his bed and crying hysterically.  All because of a stupid, little tooth.  It just doesn't seem fair.

This is what homeschool looked like for Elliot this week:

And here is Avery slaving away, never even commenting on the fact that his brother did a lot less work than him:

What a great brother!

Anyhoo, as Elliot said,  this week wasn't great; he didn't put a full day of school in this entire week.  He was anxious, unfocused, and in all honesty, extremely annoying.  I hate saying that.  You may hate me for saying that.  But it is the truth, the brutal truth.  Even though I am fully aware of all his idiosyncrasies and all of his NLD traits, there are times when I just don't care.  There are times I just want my boy to pull it together and do what he is supposed to do.  There are times when I want him to be like everyone else because that would make my day so much easier, and there are times I, eventually, lose my temper, like I did yesterday.  I yelled.   I yelled some more.  I threatened to take away his screen time and his Halloween candy, knowing full well that it wasn't his fault and that he would do it if he could.  Ugh!  Another stellar mom moment. Then I felt miserable.  I have been praying all week for more patience and more understanding with Elliot, but it just doesn't seem to be coming fast enough.  I apologised to him, gave him a hug, and we carried on, with Avery and I doing work and him, well, him working on his tooth.

But hearing him talk to my friend last night put it all back into perspective for me.  It was a bad week.  They happen.  They happen to everyone, and hopefully, like Elliot said, next week will be better.  I need to relax.  He is doing his best, and I am doing my best.  Sure, there will be times when we fall, and there will be times when we let each other down, but we are in this together, and together, we are going to make this work.  

Looking back at some of our other photos this week, I can't help but be grateful that Elliot isn't like anyone else.  He is who is, and I love every ounce of him!

Who else makes slingshots out of their floss sticks when they are supposed to be doing their math?

tee hee!

Have a great weekend!

Achieving Equilibrium

Last night, while everyone else in the world tuned into the debate, I laid in a dark room, nursing my migraine hangover and reading past blog posts.  As I read the posts about Elliot's diagnosis and the countless ones that referred to our sleepless nights, I breathed a sigh of relief.  I remember those dark days.  They were not good.  I would struggle to breathe, I would cry in an instant, and I felt hopeless.  Each night and day, I would beg Heavenly Father for equilibrium, a place in time where I could feel at ease, where NLD would be old news, and where my family would be thriving in spite of it.  Like most prayers, this one did not get answered right away, and I cannot pinpoint exactly when it was answered, but it was.  We are here now.

I can now say NLD without tears and without my chest constricting.  In fact, most days, I do not even think about it.  When Elliot has one of his "moments", I can laugh it off and see it for what it is, a moment.  That's all.  When I think of his future, I no longer see the text book, worst case scenarios, I see Elliot, with all his strengths and his flaws.  I see a life filled with imperfect possibilities, like everyone else's, and I see a life surrounded by those who love him.  Elliot always talks about his future wife and kids, and I know with all of my heart he will have them someday.  

Elliot is at peace.  He has a routine.  He has security.  He has purpose.  He has dreams.

Sure, he still talks a mile a minute, non-stop, all day long and about absolutely nothing.  Sure, there are times he does not sleep and times when his worries seem too large to overcome.  Sure, he does socially inappropriate things at inappropriate times, but that's who he is.  These are his quirks, and I have yet to meet anyone interesting, or even remotely worth knowing, without quirks!

But, reaching this plateau does not mean I have all the answers.  In fact, I still make mistakes, a lot of mistakes!  There are times when I expect too much of Elliot or push him further than he can handle.  For instance, a few weeks ago, we were at our friend's wedding.  The reception was long and we were packed in a tiny restaurant with lots of people.  I was too busy catching up with old friends and enjoying myself to notice that Elliot was slowly coming undone.  After ignoring his pleas to go home for quite sometime, Elliot in exasperation, came up to me and began pulling at his hair, screaming: "I need to get out of this place!"  It worked.  I listened.  We compromised.  Elliot was sent to nanny and grampy's, while the rest of us stayed and enjoyed our evening.  Everyone was happy.

There are also times, when I assume Elliot understands social nuances and picks up on social cues, but this is never the case.  For instance, this summer his friends would greet each other on the soccer field by saying "Hey, ya wanna go?" and would playfully push one another around.  They would laugh, brush it off, and move onto the next thing.  No big deal, right?  I didn't think so until Elliot did it to a kid not on the soccer field and to someone he barely knew.  We were meeting a group of friends at the zoo for a home school field trip.  Elliot jumped out of the car, nervous but excited to be with everyone again.  In an attempt to overcome his awkwardness, Elliot rushed over to a boy whom he had met once before.  Instead of saying "Hi!" or asking "How are you?", Elliot puffed up his chest, gently pushed the kid with his shoulder and said: "Hey, ya' wanna go?"  The kid looked at him strangely and walked away.  I was mortified, but then it occurred to me Elliot had no idea what he was doing.  He was simply repeating the actions of his friends in the hopes it would have the same result.  We push, we laugh, and then we play.  Elliot had learnt that this was an acceptable greeting amongst his close friends on the soccer field; therefore, he figured it would work everywhere else.  I pulled Elliot over to me and explained what had happened.  He was shocked!  He did not realise that "Ya' wanna go?" meant you were asking someone to fight.  Luckily, the rest of the day went much better.  He played with all the kids and, since our brief lesson, he has turned his back on the thug routine.  Moments like this one awaken me to just how tricky the teenage years are going to be for Elliot, but thankfully, he has lots of friends and he is so likable that many of them just brush off his quirkiness!

Life with Elliot brings new challenges and new circumstances to figure out each day, but I no longer worry about them.  I no longer fret about his future, and I no longer exhaust myself poring over books in search of all the answers.  I simply enjoy Elliot.  I accept him for who he is, and I love him!  We play, we learn, we yell, we cry, we laugh, we fight, we hug and each day, we try a little harder because that's what a family does, especially a family living and thriving with NLD. 

Sometimes We Need a Reminder

Mom, I am trying.  I really am.  I am doing everything we have talked about. 

 I am doing my best!

I know, bud . . . 

I had thought Elliot's sleep problems were behind us.  I felt like we had finally conquered one hurdle along our journey with NLD, but that was not the case.  Sleeplessness has reared it's ugly head once again, and I fear it may just win.  Each day, we look at what we have done, what still needs to be changed, and try to make improvements.  Last night's improvement was placing Elliot's mattress on the floor.  During our "Worry Time" session, fifteen minutes in our day that is allotted for Elliot to express his worries and then, for the rest of the day, no longer "feed them" by talking about them or thinking about them and placing them in a figurative strong box with a GINORMOUS lock, Elliot shared with me that he was worried he would fall out of bed.  Sounds silly, right?  But hearing him say this reminded me that in one of our many books on NLD, it mentioned that most kids with this disorder/disability (whatever you want to call it) sleep on the floor because of this very fear.  

Hallelujah!

Problem solved!

Or at least I thought so . . .

I am quickly learning that there is not just one answer to this puzzle called NLD.  There a million pieces, and each day it seems I find a new one.  

With his bed on the floor, his red light on, stories read, and prayers said, Elliot fell asleep.  But, at 2am when I awoke to see the outline of his body in our doorway and his tired, little voice say:  I tried mom.  I really tried, I felt defeated.  We invited him into our bed, where he apologetically nuzzled in between us and went over everything he had tried to do on his own to get back to sleep.  Eventually his "bellyache" subsided and he did fall asleep.

When I woke up this morning, I was tired and discouraged.  I started beating myself up again for missing something, for not conquering this hurdle yet.

And then one of my bestest friends sent me this note:

I can only imagine what was said when he [Elliot] got his call to come to earth . . ."My son, in your life you will have great trials, but I will give you a mother who will make your path her own . . . she will love you, bring you the gospel, she will make your journey infinitely easier . . . your life will be blessed".*

My heart leapt, my tears flowed, and my hope was restored.  I know this is true!!

I recalled that tiny voice last night assuring me he had done everything he could, and promised myself to never give up.  If Elliot can give 100%, then I can not give any less. No matter how hard it is, or how hard it becomes, or how many times I fall down, I will NEVER give up on him!

Thank you, Anita! I really needed this reminder today.

Being a mom may not be the most glamorous job in the world, or the most rewarding, but it is definitely the most important, and it is a job I love with all of my heart.

Elliot getting some much needed rest, while listening to "The Alchemyst"  by Michael Scott, thanks to Audible.com

 *(We Latter Day Saints believe our journey in life started as spiritual beings long before we came to earth.  If you believe this too, or are interested in finding out more, please check out www.mormon.org)

Zzzzzzz . . . .

Ahhh . . . sleep.  Glorious sleep!

It's hard to believe, but there is a person in there somewhere.

I am so pleased to announce that Shenanigans Inc is sleeping once again.  That's right; a full eight hours for mama and ten for the wee ones.

What a difference a full night of sleep can make on a weary soul!

I am no longer wandering around like a zombie, unable to complete my sentences or finish a thought.  And Elliot?  He is like a dream come true.  His anxiety has reduced, he is working hard, and he is smiling.  And there is nothing I love more than his sweet smile.

So, how did we get back to here?

Well, I found the hints Elliot's doctor gave us for overcoming sleep problems, and we got to work.  We removed the Lego table from his bedroom because toys stimulate children and make it difficult for some of them to sleep.  The Lego table was put in his room just a couple of days before our trip, and was making it difficult for him to relax.  Who could relax when you know an epic battle of gargantuan proportions could erupt at any time (or anywhere . . . even at Nanny's dinner table)?

Since Elliot is terrified of the dark, he needs to sleep with the bathroom light on, but as I learned all those nights I spent sleeping with him in his bed, that light is bright and very difficult to fall into a deep sleep with.  So, we bought him a red light because it does not inhibit the production of melatonin like white lights.

And last but not least, I started waking him up everyday at 7:30am EVEN if he does get much sleep the night before.  I always thought a regular bedtime routine with a set time to go to bed was the key to a good night sleep, but even more important than that, is a regular wake up time.  Who knew?!  I was actually creating a bigger problem by letting him sleep in the morning after he was up all night.  Well, it only took two nights and Elliot was sound asleep and back into his routine.

Halleluhah! It has made such a tremendous difference in our home!

We are working hard:

Playing hard:

Elliot was in the net for one of his soccer games and got kicked in the upper arm with a cleat as he was going down to grab the ball.  Eeek!  The four Websters had planned to "trick" me by telling me his arm was broken just so they could see me swoon and vomit all over myself (I have a small phobia of broken bones).  Nice, eh?  Luckily, Avery spilled the beans . . . I love that kid!

(and cheering hard for Zoe, whose team by the way won five out of their six volley ball games yesterday . . . woohoo!)

Krista's Estethician services have started up again:

That Zoe is soooo spoiled!

Our fridge is stocked, the meal plan is made, and we bid farewell to take-out and frozen chicken strips (our supper time staples when mama is a zombie)

And, best of all, our home is filled with smiles and laughter once again.

Hooray, for sleep!

Brown Boxes Make Me Smile

There is no better to way to brighten your day after having been pelted with wind and rain than opening your mailbox to find not one, not two, BUT three parcels . . .

And it's even better, when those parcels happen to be filled with books!

The night we returned home from our trip, Mr. Level-Headed ignored my pleas and stopped at our mailbox on our way home.  I really needed just one more sleep before reality clobbered me over the head, but it wasn't  meant to be.  Among our stack of bills and Easter cards, there was a letter from Elliot's Developmental Pediatrician with another list of books we may find useful in helping Elliot to relieve his anxiety, to better understand social situations, and to learn more about NLD.  This is only half of what she wants us to read, and does not include the pile we have already gone through. 

EEEEEK!  

I think I may need another vacation . . .

tee hee!

Although the sheer size of what I have to read is overwhelming, all of these books are amazing, and it will be so great when their knowledge is safely tucked away within my brain and I can access it readily when needed.   Like right now, I really need to know how to help Elliot sleep.  We are going on a week and a half and I am dying here; therefore, today, while the boys are doing their work, I am going to go through my small library and search for the answer.  I NEED ANSWERS!!

On a positive note, I am currently working with my kids on a preventive program for depression because people with NLD have an exuberantly high rate of depression, but I figured this would be something all my kids could benefit from. The book I am using is called "The Optimistic Child", and it outlines how you can teach your child to become an optimist rather than a pessimist and give them tools to build a lifelong resilience against depression. I love it!  First off, you have to teach your kids how to recognize, or "catch" the things they say to themselves particularly when something goes wrong.  Our internal dialogue determines how we react to adversity and the consequences that arise from it.  The goal is to teach kids to stop thinking in catastrophic, permanent, and negative ways; for instance, I am the stupidest person ever, nobody likes me, I will never be good at math, etc.  During our first session, Zoe and Avery joked around a lot, but Elliot became sullen.  As I was putting him to bed, he began crying and said:

Mom, I am feeling down.

Why, bud?

Because the things I say to myself are not very nice.

Like, what kinds of things?

Well, whenever I do something good, this tiny voice always says:  yeah, but you are a dog killer.

My heart stopped.  Three years ago, our dog Sport drowned in the river while we were away on a hockey tournament, and it has bothered Elliot ever since, but I had no idea he thought this.

Buddy, you had nothing to do with Sport's death.

Yes, I did!  If I wasn't off having fun and was home taking care of my dog like I should have been doing, this would never have happened!

My heart sank.  My little boy had been carrying this around with him for three years.  I curled up beside Elliot, wrapped my arms around him, and whispered in his ear just how important he is to me. 

Buddy, you are the most amazing boy I know, you are very special, and I love you. 

These little insights I am granted into Elliot's experience are hard to hear.  Until his diagnosis, I had no idea just how difficult he found the world or that he was carrying such a heavy burden on his shoulders each and every day, but thank heavens I do know now.  Now, I can help him, and now he is no longer alone!

Parents, please talk to you kids and find out what kinds of things they are saying to themselves.  We spend so much time warning them about external threats, like bullies or ill-intentioned adults, but sometimes, it is that little voice in their head, that goes undetected for years, and does the greatest damage.  I am a firm believer that knowledge is power, and we need to equip our children with the knowledge and tools they need to lead happy, productive lives.  It isn't going to be easy, but it will definitely be worth it!

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.  

EEEKKK!   

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.

Hooray!

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!