The #LightningKid thinks Halloween is grrrrrreat!

via Instagram http://instagram.com/p/gJvoskt0Hf/

Apparently this little guy gets mistaken for the #LightningKid (it's not)... but hooray for Canadian #Downsyndrome Awareness week.

via Instagram http://instagram.com/p/gHNieht0Ns/

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.

The Lightning Kid Turns Two!

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

And how old are you turning?

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.

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!

 

 

 

 

 

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.