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Monday, December 30, 2013

The Power of a Hug

One day, outside the waiting room of the Lightning Kid’s chief healer, he ran up to a large man sitting on a couch, climbed the couch, and hugged the man.  The Queen was with him, and had seen this sort of thing before.  The Lightning Kid was very free with his hugs in general, yet it became somewhat unpredictable as to who would become his next target at any given time.  People with the same condition as the Lightning Kid were somewhat known for this sort of behaviour, and while the King and Queen disliked stereotypes, they knew there were worse qualities to have.  Still, although there had never been a negative reaction to this, the Queen braced herself for the potential consequences of this unsolicited incursion into the man’s personal space from a cute (if somewhat snot-encrusted) toddler.

No bracing, however, could prepare her for the sight of the man fighting back tears as he said:

"Little buddy, thank you so much! I can't remember the last time I received a hug! You have no idea how much you just made my day!"

While it’s sad to think of what the man’s circumstances might have been that he would be in such desperate need of a hug, it’s nice to think that a change can come from such an unlikely, yet simple place.

From our family to yours, Happy New Year.  Consider yourselves all a virtual recipient of a hug courtesy of the Lightning Kid.

Monday, December 23, 2013

Seeing The Ability

During the days, when the King and Queen were busy, the boys were well-cared for.  To mark the season, parents of all children at the school were invited to a Yuletide party.  The children in Shark Boy’s class put on a little concert of singing, which was made even more adorable by red painted noses and antler head-gear.  The King and Queen attended Shark Boy’s classroom of fun, with the expectation that there wouldn't be much to see from the toddlers in the Lightning Kid’s class.


Still, the Queen felt guilty about abducting the Lightning Kid from his classroom and decided to take him back while the King and Shark Boy feasted on healthy snacks.  In the Lightning Kid’s classroom, the children were engaged in a craft activity to make a star.  As she was crouching down beside him, working on his star, his teacher came over to her and her me gently: "You don't need to help the Lightning Kid with his craft. Give him a chance and he can do it on his own. He has worked on many crafts like this during class time and when he wants or needs help he knows how to ask for it". The Queen was so impressed and amazed with the teacher!


It served as a healthy, timely reminder that we might all need.  It’s always important to see the ability in others.

Monday, December 9, 2013

Interlude: The Bad Witches

Once Upon A Time, there were two Bad Witches.  They happened to look a lot like the King and Shark Boy, in fact, it was speculated that the witches were merely that Father and Son on a game of magical make-believe, but that is not important at the moment.

What is important, is that they only had one broom between the two of them.  Bad Witch the Littler invited Bad Witch the Bigger to ride along, but when the Bigger tried to straddle the broom from behind, it proved difficult to stay on and keep up while flying, at least not without possibly kicking or knocking Bad Witch the Littler down.



The only solution was to ride side-saddle with both legs on the same side of the broom; after all, being a Witch is no excuse to not be a Lady.

Friday, November 15, 2013

New #LightningKid blog post is up: Curses, Flails and Balloons http://meandthelightningkid.blogspot.com/2013/11/curses-flails-and-balloons.html



via Instagram http://instagram.com/p/gwm_yJt0Dj/

Curses, Flails and Balloons

The Lightning Kid had managed to bring a minor curse down on the Royal Family.  It affected each member differently.  The young Prince suffered feeling a little hot, but was otherwise largely unaffected.  His elder brother Shark Boy veritably burned by comparison and wanted nothing more but to lie down for a day and a half.  His father the King felt waves of heat, then chills, then heat and so on, while feeling as weak and brittle as an old crone for two days straight.  Finally, his mother the Queen was the last to have to deal with it; she suffered the aches and pains, but seemingly without the burning or chilling feelings.

The Lightning Kid was a hero when it came to what were known as 'gross motor skills'.  His frenzied walking, climbing and dancing was the stuff of legends.  Speech was something to be worked on, but so were what were known as 'fine motor skills':  Manipulating smaller objects and devices, hand-eye co-ordination and such.  One toy that had been provided to the Royal family for such skill work was a series of blocks that could be threaded with a string.

The Lightning Kid, in the tradition of boys everywhere, decided it would make a better weapon than an instrument of learning, and tried to use it as a flail.  When the King was younger it was common for boys (much older than the princes mind you), to fantasize about the skilled use of the flail as shown below:


But the more common outcome was more like...


And so it went with the Lightning Kid: he swung the string and blocks around wildly until they wrapped around his torso and banged against his ribs.  Lesson learned.

The King had thought of another way to work on fine motor skills.  There were balloons left over from the Princes' birthday celebration that still floated on the ceiling.  The Lightning Kid often requested that he be lifted "up" to reach them or that they be brought "down" (while pointing at the floor) to his level.   The King granted these requests as often as possible, while making sure the Lightning Kid had to grab the string while at maximum reach.  The strings to the balloons were fine and small, and snagging them was a great way to work on the skill of hand-eye co-ordination.


Thursday, November 7, 2013

The Empty Cup

A wise man once said: ”In order to taste my cup of water you must first empty your cup.  The past week had been dedicated to telling stories from families like those of the Lightning Kid.  For her part, the Queen wrote a beautiful message:

... it will always be my hope that when people meet [the Lightning Kid] that they give him a chance, that they don’t just see [his condition] and think “disability”. This is one of my biggest fears because I know that I had all of the same misconceptions about [his condition] before [the Lightning Kid] was born. When we got his diagnosis 3 days after his birth, it was one of the hardest things that I've ever had to face in my life. In the following weeks although I had a lot support from my wonderful family and friends, I felt completely alone. I had no desire to meet other families with kids with [his condition], I just wanted to run & hide. What made things worse was all of the negativity associated with [his condition]. Many [healers] kept saying “I’m sorry” when they would find out that I had a baby with [his condition] and I overheard many people mention the word “burden”. We received pamphlets about all of the things that [the Lightning Kid] could suffer from, heart issues, respiratory issues, digestive issues, thyroid issues, hearing & visual impairment, a compromised immune system and developmental delays. There was a chance that he might never learn how to walk or talk. When I read statistics like that 95% of all pregnancies with a [his condition] diagnosis are terminated, it made me incredibly sad. Or that 80% of couples who have a baby with [his condition] end their marriage I was very scared. Would [the King] and I be strong enough to handle this?

Over the past two years [the Lightning Kid] has taught us to see his ability. He constantly surprises us with how eager and determined he is to learn. His [healers] are amazed that he is reaching all of his milestones so far. We often discuss milestones and on one hand it does not matter if he does things a little later than the average kid, but on the other hand, he wants to be just a regular little boy and wants to do all of the same things and be treated the same way as his big brother.

I look back on those dark days when we were coming to terms with his diagnosis and I wish I could go back and tell that devastated new mom, that couldn't stop crying for three weeks straight, that things are going to be way more than ok, they would be amazing. Also that happiness is a choice and that we can choose to focus on all of the scary things associated with [his condition] or focus on the fact that he is “special” just because of who he is, just like his brother [Shark Boy].

I am aware that [the Lightning Kid] will face struggles with his [his condition] and “disability” label. I’m reminded of it, when people first meet him and think that because of his size that he is only 12 months old, as opposed to two years. I’m reminded of it when people look at [the Lightning Kid] and I with pity when they see that I have a child with [his condition], (although that look quickly changes when [the Lightning Kid] runs up to them with a huge smile, wave and yells “Hiii!!”  I’m reminded of it when I hear of friends whose children are not accepted at a daycare facility or a particular children’s program because they have [his condition].

I hope that [the Lightning Kid] continues to show people that they do not need to feel sorry for him, that he is happy and if given a chance can do many amazing things....

The King read the message and felt pride to be married to such a brave, compassionate, wise and insightful woman.  As he thought about the struggles of the last two years, and the struggles to come, he compared them to what kind of messages were being delivered during the week of awareness.  The best cases where were those who could hear stories from such families, with empty cups.  They would be most likely to “See The Ability”.  The worst ones had cups that were already full.  Full of preconceptions, of stereotypes, of outdated history.  Unfortunately, these tended to be “experts” and professionals.  Within those early days, they would be the first contact the families would have with the new world they were being thrust into.  They were usually healers of some kind.  Going forward, the King and Queen feared having to deal with full cups in terms of the princes’ education.



One could only hope that by spreading awareness, families like those of the Lightning Kid could fill as many cups as possible, and maybe the hope, ability and joy could spread to some of those cups that seemed full, but had a little room left at the top.

Monday, October 28, 2013

The Torches And The Pitchforks

It’s been over a month since I wrote anything of substance on either of my blogs.  Down syndrome awareness month is nearly gone; there’s been so much going on in our real life that thoughts are very cluttered, and the focus I need to write has been missing in action.  Still, I've been reading, and this is an issue that’s been chewing at me for some time, and waiting for clearer thoughts hasn't helped me deal with the feelings involved, so I've opted to just spew it out as best I can.  I realize I’m off-message, and maybe even off-side; the tone and voice of this piece is going to swing all over the place, please bear with me.


The Royal Family had been visiting the Zoological Garden of Magical Beasts and Creatures and been having a lovely day.  When they entered the door of an eatery to get some lunch, pushing the Lightning Kid in a stroller, two unruly boys tried to push past them to get in first.  The timing was bad, as the whole struggle caused the stroller to get wedged in the doorway.


“Excuse me! You have to wait.” intoned the Queen in a polite but firm voice.  This was ignored by the boys who proceeded to further shove the stroller uselessly, and were beginning to try to clamber over it.  The King grabbed the hood of the lead boy’s cloak and yanked him back so they could enter in peace.


Later, the King asked the Queen what she had thought of his actions, knowing they seemed rash. While she understood them and basically condone them, she worried about how they would have been perceived by the boys’ parents.  While she had a point, the absence of a guiding parental hand was really the cause of the problem.  The King took the view that his method was much gentler than the lesson that life and the universe would teach them eventually - if anything, the parents should be thanking him for trying to correct their path.


Life isn't fair, and the universe isn't going to bow to your whims as if it revolves around you.


**********************************************************************************


Being a family like the Royal Family isn't like being any other family.  Except when it is.  Families with children (or even adult ‘children’) with the same condition as the Lightning Kid struggle for acceptance within society.  Where that struggle encounters resistance defines the notion of ‘ableism’.  And where hate, discrimination and abuse are encountered, they need to be opposed vigorously.  This could not be disputed.


And yet, many of those who decry Ableism seem to be able to find it anywhere.  Anything that identifies someone who had a disability as being different makes them ‘other’ and alien to the rest of society.  Children without legs who still participate in foot races are praised for their courage, and this is considered bad because it puts them on a pedestal, and thus separates them from any other child who might like to run.  Making comparisons on how mentally or physically a child should be by a certain age or time frame creates expectations that could exclude those who don’t meet them.  Most of the time these attitudes were shown by those meant well and didn’t know better, yet fingers continued to be pointed, rooftops were shouted from; torches were lit, and pitchforks were sharpened.



If the King was vain about anything, it was his intelligence; he also prided himself on being able to empathize and see the points of view of others.  Still he found himself utterly confused by the messages being sent by those he should have considered peers.  Participating in a foot race when you don’t have feet is HARD and it does take courage - more than it does when you do have feet.


Yardsticks and measures lose their value when they exclude and push people to the margins, but at what point does eliminating the “should” from the situation sacrifice the “could”?  The Royal family generally felt they should reach for the stars, if they came up short, they’d still catch the moon.


It really began to sound like the war on Ableism had an end strategy of a world where anything you could or couldn't do was irrelevant; while they were working on that, they might want to hope for the fountain of youth to live forever because that’s how long it would take to achieve the goal.  Being a family with a kid like the Lightning Kid is different than being a typical family.   WE ARE OTHER. There are things we’d like you to know about us and understand.  It is a struggle to gain acceptance, but calling the more benign forms of ignorance a word that ends in ‘ism’ evokes connotations of hate, which seems like a good way to make enemies, rather than allies or at least further enlightenment.  Elbowing your way through an unfair life in an uncaring universe might not provide the desired results after all.

The King could appreciate differing opinions, in fact, he cherished them knowing that a community with only one voice was no community at all, it became a mindless hive.  Inclusion of all within society was a noble goal, and one hard to attain.  It could be that calling out every instance that distances those with differences in their abilities as wrong is the correct way to achieve the wanted conditions in our civilization.  The King has no way of knowing; he is merely a father who wants what’s best for his son.  If you experience the kind of love where you would do anything to provide, protect and promote someone’s well-being, you can’t be afraid to ruffle a few feathers, even within one’s community.  Friction should not be feared though; it’s the grain of sand that makes the pearl, after all.

Wednesday, October 16, 2013

The Lightning Kid Turns Two!




Another chapter will be published soon.... in the meantime, Happy Birthday Little Prince!

And how old are you turning?




Friday, September 27, 2013

Teaching Speech



The Lightning Kid neared his second birthday, and was showing many signs of the ‘Terrible Twos’: tantrums when he didn’t get his way, mostly. The King and Queen knew it was time to engage some help in teaching him to speak. Yet they knew it was important to find the right person and the right method of helping, and this took a lot of time and effort on the Queen’s part.



Many children with the same condition as the Lightning Kid used a method where the idea of talking as a pair was emphasized. While this method was popular and highly touted, the Queen’s research seemed to show it might not be a good fit for the Lightning Kid; he was showing a lot of willingness to communicate, but the sounds he would use for different meanings weren’t that consistent, and he frankly needed to learn how to make more varied sounds.



In the meantime, the Queen found another methodology that showed more promise - it would use the sense of touch to help teach a child how to physically produce certain sounds. Besides pure methodology, the Royal Family wanted someone who could fit their help into the family’s lifestyle and schedule. In helping the young prince to learn to crawl then walk, starting early yet only doing a little at a time had really paid off, and they hoped to use a similar approach with speech. Finding someone nearby, with the right options for both methodology and schedule was not easy. They did find, an option for a similar methodology where hand cues and signals were used not to communicate meaning, but rather how the sound was formed by the mouth and other parts of the body. Moreover, the Lightning Kid really seemed to like the healer they selected and that would make a big difference in terms of getting him to do the work to learn.



The healer came to the castle with bags and bags of toys, but the Lightning Kid was not allowed to play with any before saying a word to identify and acquire it - the pronunciation wasn’t that important, it was the effort that counted. The King and Queen knew that this would be a long road, and the going would be slow, but fairly soon, they started hearing ‘HIIIIIIII!” and “BYYYYYE” more consistently (and in the right context), and the Lightning Kid could tell you how old he was going to be with fairly good pronunciation.





video




Saturday, August 31, 2013

In Sickness and Health...

It was a Friday morning, and things were proceeding according to the usual routine. Shark Boy curled up in his father's lap, and said he didn't feel well. Within seconds, he told the King that he had to throw up, and they successfully rushed to the commode to take care of that bit of nastiness. The elder prince had clearly picked up a stomach curse known as a "bug". The bug ruined Shark Boy's Friday, and he had to throw up several times, including on the Queen unfortunately. He was very tired and spent most of the day resting. Luckily, the bug passed in just under a day, and the Royal Family was able to travel to their Castle by the Lake. The Saturday passed uneventfully in terms of any re-appearances of the bug, and they had a fun day. Sadly, by Sunday morning, it was clear that both the Queen and the Lightning Kid would be stricken. The Queen suffered worse, for the only apparent difference in the Lightning Kid's behaviour was occassional pauses to fire disgusting projectiles halfway across the room.

The King was stoic; his cast-iron stomach was the stuff of legend. To prove its mettle, he had considered even trying to take on an evil cursed food that had brought many others down into the depths of misery. He would not be given the chance, because early on the Monday morning he found himself under the same curse as the rest of his family - and his own mother would suffer a similar fate.

The King and Queen had worried most about the Lightning Kid. The next Friday he was scheduled to get new Tiny Titans for his ears - the previous ones had fallen out. His healer had recommended also to remove his adenoids, and this held much promise not only for improving hearing long-term, but maybe even turned him into a better sleeper, or reduce the number of runny noses - there were many promising possibilities for an outcome. Yet, he'd have to stay healthy to have the work done on him.

His recovery from the bug was so quick, and so complete, that they were able to go to the Healing House for Sick Children on schedule. In his usual fashion, the Lightning Kid refused to take a nap at any point before the operation, yet his bright, fun-loving personality kept him from getting too cranky while waiting (for the most part anyway). The King arrived late, having been held up by Royal business, and Shark Boy would spend the day (and that night) with his Grandfather and his wife. When the time to take the young prince into the operating room came, the King and Queen saw him off, and he bravely went with the nurse, needing nothing else but a wave goodbye.

The Healing House for Sick Children did its usual fantastic work, and the operation finished quickly. His healer told the King and Queen that she was able to put in one Tiny Titan in his right ear and one "Shepherd" into his left ear. The procedure took a certain amount out of the Lightning Kid, and he was sluggish the rest of the afternoon, being alternately held and comforted by the King, the Queen and her mother. Only one parent was allowed to spend the night with him while he stayed at the Healing House for observation, and while it had been decided that the Queen would be that parent, the King was dismayed that there would only be a chair to sit in; no bed to lie in.


Fortune stepped in, and there was a family with a sick little girl in the same room. They had opted to stay in a nearby inn and lent the lone overnight room that had been reserved for them to the Queen (the little girl must have been very brave to stay in the Healing House without her parents - it saddened the King and Queen to think she might be used to these overnight stays). The night was not a restful one, as a place like that is never strictly quiet, but the Lightning Kid slept about as well as he did at home - no worse (yet not much better). The next morning, he was on his feet, ready to explore as much of the Healing House as he would be allowed. He and the King got into a game where the King would lift him up to a bench then back down again, and do this repeatedly till their paired sets of giggles were ringing through the halls of the Healing House. His main healer said he was doing well and could go home - in fact a Healing House for Sick Children isn't really a place for ones as hale and hearty as the Lightning Kid, even if he did seem to be enjoying himself.

By late Saturday morning, the Lightning Kid was home, and so was Shark Boy and the Royal Family was ready for a September full of adventure!

 

 

 

 

 

Friday, August 23, 2013

A Brief Bolt: Kayaking

The King and Queen had often enjoyed taken Shark Boy out on the water in a kayak when they spent time at their Lake Castle.  The year before, they didn't trust it to take the Lighting Kid in, but he was bigger and a little more easy to manage... they hoped.

The Lightning Kid did not like wearing his Magical Floating Vest, he found it came up to his jaw and that was stifling.  The King would not let that deter his ambitions and he placed the young Prince in the Kayak and set off down the shoreline.


The tricky part was always managing to make strokes with the two-headed paddle without bashing the little passenger in the head or face; the King had learned this the hard way with Shark Boy prior to this.  So when the Lightning Kid wanted to sit more forward, he had to be held back and discouraged from sitting up.  Other times he would try to stand up, which led to more power struggles.  At least he didn't mind getting water runoff from the paddle dribbled on him.

The King reached the end of the bay and turned around.  Now he was paddling against the waves and he felt his arms were getting tired.  He considered trying to bring the kayak back home as quickly as possible, and wondered if the whole thing had been a mistake.  The Lightning Kid seemed to settle down.  He must have liked the wind in his hair and the sunshine coming off the water.  He turned and looked up at his father with a big smile; and suddenly the King's arms didn't feel so tired anymore.

Sunday, August 4, 2013

Talkin' Lightning Kid



The Lightning Kid woke up, and the King took him out of bed, and carried him out of his room and stopped at the top of the stairs.

"Would you like to go downstairs?"

"DeeDehDee!"

"I know you can say it better than that... DOWN - STAIRS."

"DehDeeDee". Why won't he get on with it? What's the difference? I'm pointing down the stairs, aren't I?

"DOWN STAIRS"
"DehTah."
"Good enough."

These people seem to have real problems understanding me... it seems simple enough to me.  I guess they need a dictionary.

Mama = Help me; I want something
Papa = Let's have some fun; time to go
DeeDeeDee = Look at that!  Good for dogs, birds, any window etc.
Ditty = Cat
Dankuh = Thank-you*
Awdun = All Done
Bowwow = Dog

The favourite, most important word in the Lightning Kid dictionary was an all-purpose call to action.  It could also be used as a victory cry after accomplishing something or a means of celebration...


"ATTTAAAAAAH!"

Tuesday, July 23, 2013

The Summer Of Lightning





The Royal Family took advantage of the warmer weather to visit a Castle By the Lake on many weekends throughout the summer. The proximity to the water was especially delightful, since the boys could have fun in the shallow water (heavily supervised), and it kept them cool enough to withstand the heat.






Besides the risk of the water, they had to protect the boys from the sun's rays, and some biting insects too. The King had a long-standing hatred for biting insects, but he didn't realize how intense that hatred could get until he saw a little bit of his sons' blood trickling down from their latest bite.



While Shark Boy was getting closer and closer to being able to swim independently, the Lightning Kid was causing trouble eating sand. His sand-eating habit seemed to get better, and he could be counted on to play on the beach without sticking a shovel into his mouth, until he did again and the whole thing started up again.





The Lightning Kid's chief healer had asked the King and Queen to work on giving the Lightning Kid obstacle courses to work on movement skills beyond simple walking. They had never put an ounce of effort into that task, because the young prince had been seeking out his own obstacle courses; he'd crawl under chairs, but over the cross-beams that spanned between the chair legs for example.



At the Lake-Castle, he would climb onto rocks as big as he was, and he loved trying to negotiate the stone stairway down to the water. On the dock he was only allowed while holding hands with a grown-up.



With all these leaps of development and adventures, there was bound to be a price to pay. Predictably, any good sleep habits were destroyed, and the King and Queen found themselves sleep-deprived and exhausted again. Worse still, the lands around the Kingdom experienced unprecedented storms.




While driving home from the Lake-Castle in their Carriage one weekend, the Lightning Kid seemed very out-of-sorts - they had hoped for him to fall asleep during the drive. Instead his screams and cries made conducting the carriage extraordinarily difficult. He seemed inconsolable; they even made a detour with the notion of bringing him to a healing house on the way back. They reconsidered when they saw the waiting room from the outside full of sick people - they probably wouldn't get any real help there and he didn't seem to have a fever. Taking side-roads the rest of the way home calmed him down to the point where he fell asleep... and that's when the Lightning started. The King's night vision kept getting ruined by the constant flashes, and the heavy rains made the road hard to make out. After many hours, of slow careful driving, they came out from under the extreme weather and made it home safely, but the King could not recall a more harrowing experience.



Weeks later, they welcomed the King's brother and his family to their lands, but their first night was marked by yet another storm that turned roads to rivers and castle courtyards to lakes. All throughout the city, people had been stranded by the floods caused by the storm, and while the King did not have to actually swim when he got caught outdoors, you couldn't tell that from his clothes.





A week later, there was yet another heavy storm that took down trees and did more damage. To the King and Queen, their baby turning into a little boy was worth a bit of thunder and lightning - they could only hope for forbearance from everyone else...



Tuesday, July 2, 2013

The Lightning Kid in a Strange Land

The summer approached, signalling the time for the Royal Family to travel.  Their first destination would be a land across an ocean.  That meant boarding an airship, and staying aboard for 8 hours or so.  Many feared these airships, and with small children, even more-so.  The King and Queen had the courage of legendary heroes, or so they appeared on the outside.  The King was secretly shaking with fear, on the inside, at least.

The Lightning Kid was simply too active and dynamic to be kept in small quarters for long periods of time, and he had taken up a nasty habit of ear-splitting screams that could occur at any time whether he was pleased or displeased... the reactions of other passengers would surely be something to be feared.  Interestingly, the overseas flight was survived, through hard work of the King and Queen, and the fortune of an empty seat.

Shark Boy and the Wire Donkey



Once they had landed in this wonderful country, the Royal Family enjoyed many adventures.  Shark Boy swam and learned to ride a Wire Donkey by himself.  The Lightning Kid also rode on the back of a Wire Donkey with his father, and the King and Queen were very proud of both boys.  They cruised on the river aboard a giant whale, they rode a giant metal serpent across the country.
The Lightning Kid and the Wire Donkey

Best of all, they got to play with their cousins, the niece and nephew of the King and Queen (on his side) and spend time with their Grandfather and his wife.  While visiting the year before, the Queen had wondered if the Lightning Kid would be able to walk by their next visit; the King and Queen had so wished that the baby he was would turn into a toddler who could play alongside this cousins... just like any other kid.  They needn't have worried, because that was exactly what happened.   A not-so-close second highlight would have been the ale, and desserts that were consumed.
The Whale


Still the journey proved a tribulation.  While Shark Boy seemed to be able to adapt to changes in surroundings, the Lightning Kid seemed to be troubled by those same changes.  While awake, the screaming habit got worse.  Sleep was fought against at every opportunity - it was hard to put him down, he woke often, and every wake-up was treated as if a new day were to begin, even if it was the middle of the night.  He also seemed to pick up random fevers and coughs (the latter was probably made worse by the screaming).  And to be fair, the sun rose and set at a different time in this new land, the rooms and surroundings were different, schedules and rituals from home were not being observed.  Children need structure, and it was widely held that children like the Lightning Kid needed it even more.  Still the King and Queen had long resolved that the benefits of flexibility and adaptability needed to be imparted on the Princes too, and their lifestyle should reflect those kinds of values.  This new country was also important to their heritage and culture.
The King and the Lightning Kid on a small metal serpent


By the time the Royal Family made the return trip, they were questioning if and how they could repeat the adventure until the young Prince was much older.  And they had other fears: could they count on a year or two making as big a difference for the Lightning Kid as it had for Shark Boy?  As it often did, the darkness of fear had shadowed the light of reason and logic.  They were forced to remember... Shark Boy had always been a similar problem - in fact, this year was the first time where travelling with him hadn't driven them both to near madness.  And while it was their heart's desire to provide their children with adventure, it was all too easy to give them simply too much in any given day; when their cups ran over, the spills meant they would be too excited to sleep.

The Royal Family on a Big Metal Serpent


The trip was a vacation in name, though it was not restful in truth.  Still, the Royal Family would have to take the good home by focusing on what was gained in terms of great memories and love shared, while leaving the bad as nothing more than one of many lessons in patience and endurance they would have to learn in the greater voyage that was to be their lives together.  Although the King noted to himself that taking home some of the faraway land's great coffee would have been a very clever idea indeed.

A rare moment... Sleep! Aboard the Airship no less

Wednesday, May 15, 2013

The Buddy Walk



In kingdoms further away, there had always been special days where people with the same condition as the Lightning Kid had banded together to show their presence to the world by walking with their friends and family - they would walk through a prominent area with their 'Buddies'. They could show that they weren't simply something to be pushed to the fringes of society, they were fully part of it.

In the first year of the Lightning Kid's life, there wasn't a Buddy Walk anywhere near the King and Queen's Castle, which was saddening. This year, just after the Lightning Kid's 18 month birthday, there would be one, and it was attended by well over 400 people. His team of Buddies included many of the King and Queen's friends, including the Fairy Godmother and her own two princesses.

It was a cold day, and while waiting for the teams to gather before the walk, it was hard to stay warm. Shark Boy was being oddly lazy, and stayed in the royal stroller for most of the walk, though afterwards he could be seen running all over the place in his usual way.

There were all kinds of families there, each proud to be buddies to their special children (both young and young at heart).  There was even a Kissing Bandit, and though the King found the title threatening to his own title as a Kissing Man, he let discretion be the better part of valour and opted not to challenge the bandit...

The Lightning Kid's Team of Buddies completed the walk, and enjoyed catching up with each other over some snacks.  They were able to collect some olunder for their efforts.  The Royal Family knew they'd be back annually to Walk for the Lightning Kid, and for other children like him.


Tuesday, May 7, 2013

The Lightning Kid Goes to "School"


A day of some excitement approached.  You see, Shark Boy had been in a daycare from the age of one year onward.  Getting him to that point had not always been a smooth one.  The King and Queen (mostly the Queen), had done a great deal of research trying to find the right fit for someone who could give Shark Boy what he needed in terms of daily care: time outside, physical activity, mental stimulation, a safe environment, and all without using a common child-care tool that was known (by some, especially The King’s late Father) as The Idiot Box.  The Idiot Box was known to impede the development of speech in infants, and since Shark Boy was hearing two languages in a constant mixed up stew of words at home, the King and Queen wanted to avoid giving him extra disadvantages.

They had found what appeared to be an ideal place with a qualified caregiver, large backyard and no Idiot Box.  What they hadn’t counted on was that Shark Boy’s Iron Will would be more than a match for the caregiver’s lack of experience.  When she was unable to distract him from the terrible grief of being separated from his parents (which typically peaks at the age of 12 months - Shark Boy’s exact age at the time) by dangling a set of keys in front of him, she found she was unable to do the job, and suggested the King and Queen find different arrangements.
Their second attempt at getting Shark Boy into daycare went much smoother, and he had thrived there and been attending it ever since.  They called it ‘school’, since there was not only a good educational curriculum, but it gave a way to justify it to Shark Boy (“why can’t I stay home and play all day?”).

Now it was the Lightning Kid’s turn.  The fear of how separation anxiety can affect a strong-willed child was probably in the back of the King and Queen’s minds as they made the decision not to put the Lightning Kid into daycare until he was 18 months old.  The good news was that separation anxiety was less at that age, and he had really solidified his walking such that he would be able to fit in well with the other children.

In fact, though the idea of the Lightning Kid attending daycare while being assisted by a special extra teacher had been discussed since the early days, at that point, it seemed to be unnecessary and they decide to forgo it; he didn’t really have any special needs compared to other children at that point.  Still the King and Queen decided to borrow the idea from another Kingdom to send a letter to his teachers.




The first week he attended the daycare for 2 hours on the first day and 4 the next working up to a nearly full day - including a successful nap time, which left the King and Queen stunned, since the Lightning Kid was a notoriously bad napper.

The next week went just as well; in fact, a teacher approached the Queen and mentioned how alike the Lightning Kid was to all the other children she cared for.  The King and Queen were immensely proud - yet still found things to worry about.  They hadn’t gotten the Lightning Kid to feed himself with a bowl or dish in front of him - at least not without throwing them to the ground... how would that play in a group environment?  They also noticed that he had to use a special chair that he wouldn’t fall out of - the problem being that he tended to turn and climb when he should be sitting.  It wasn’t that he couldn’t sit properly, it was more that he wouldn’t, and it was simplest to use a chair with a safety belt.  It was seeing him being singled out, that brought back old fears to the King and Queen. 

They had to remind themselves that this could be as much a result of being the newest and youngest to a new routine - he would probably not need the different chair long - even as they were being reminded that their Quest to integrate would be a constant struggle.

Please consider sponsoring the Lightning Kid's Team for the DSAT Buddy Walk.  Or, join us there!