Friday, November 15, 2013

New #LightningKid blog post is up: Curses, Flails and Balloons

via Instagram

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.