The things a four year old says

Jackson can say the craziest things.  When you think he isn't listening he comes up with a one liner that makes you bust out laughing.  Each day after school we have in depth conversations about lunch and what we each did that day.  Normally his day consists of playing with Zander his best buddy from school.

This morning Jackson woke up with one and the first words out of his mouth to Annette were "What do skunks eat?".  First thing in the morning, this is a difficult answer to come up with, plus if you make something up, he knows, somehow he knows.  Annette told him she would find out while she was at school.  I told him we could call Pawpaw and ask him because Pawpaw had a family of skunks that lived under his front porch when I was little.  Jackson didn't want to call because "it was too early and the sun wasn't up".

So tonight at dinner I asked him if he ever figured out what skunks ate.  Annette and I told him that they probably ate bugs and trash.  He didn't like our answers so we got the phone and called Pawpaw and asked him.  Pawpaw's answer, "stinky things" seemed to suffice, because later this evening Jackson told me that he knew that "skunks eat stinky things because they stink".

You never know what that boy will say or ask.

He talked me into it

A few weeks ago Krista, Kade's OT, used her iPhone during a therapy session a few weeks ago.  He seemed to reach out to the phone more than he does when he plays with other toys.  We started thinking that an iPad might be a good idea for him, but the damn things are $499.

I started doing some reading online about kids with special needs that were using iPads to communicate, and other therapy functions.  But the damn thing costs $499!  One of the blogs I read is written by a mother of a special needs child who uses an iPad at school for communication.  She has posted several times on how much Max likes it and how his sister is jealous of his cool tool.  The more and more I read, the more and more I was really thinking that Kade could get some good use out of an iPad.

This morning we loaded up the family van (bus) and went to the mall so Annette could get a protector screen put on her iPhone.  While we were waiting we walked into the Apple store and looked around.  I tried to get Kade to play with an iPad but the boy fell asleep.  I wasn't too upset because those things are $499!  About 20 minutes later Kade woke up from his power nap and Annette took him back into the Apple store while Jackson and I sat out in the mall and had a snack, because Jackson can't go for more than 30 minutes without a snack.  I looked over and Annette was motioning for me to come take a look at what Kade was doing.  She had pulled up a piano application and put it in front of Kade and he was reaching and touching the screen "playing the piano".  Right then I DID NOT CARE HOW MUCH IT COST, KADE HAD TO HAVE IT!  When we find something that he responds to or seems to like, we will buy 20 of them if we can.  We knew right then we were going home with an iPad.

We made it home just in time for naptime for the boys and Annette.  While they were sleeping I setup the iPad and put some cool applications for Kade on it.  I also smoked some pork steaks for dinner and they turned out AWESOME.  Once everyone woke up from their naps Kade was in a great mood.  So we put him in his blue chair and put the iPad in front of him.  It took him a bit, but he eventually took to it.  I think Kade will really get some good use out of his new toy.

Being Accepted and giving back

A few nights ago I saw a teaser video on KSDK 10pm news about a playground made specifically for kids that have special needs.  I wanted to watch it but, I am old, and fell asleep.  I have heard about playgrounds like this before, and we have been talking about find a swing for Kade to use, but really have not found anything in our area.


Flash forward to this morning and KSDK posted the story on their Facebook feed.  I had time to jump over and watch the video.  This was a bad idea first thing in the morning, I watched the video and the story had me getting all misty eyed.  The family that raised the money to build this particular playground have a 10yr old boy that was born with a rare disease, Pelizaeus-Merzbacher Disease, that is a progressive neurological disorder, and will probably take his life.  The family wanted to do something to keep him out and about and as physically active as possible.  They raised $750,000 to build this playground in Lake Saint Louis, MO.  It looks like an AMAZING place for all kids not just special needs kids.


As the mom talked about her son and their family I could not help but feel that we are walking the same path.  She was quoted as saying "This disease has taken everything from my child and I could not give him anything back. I couldn't make his legs work. I can't make him speak better. But I found something I could give back to him," and they built the playground.  There is nothing more that we want, but for Kade to have every expierence he can possibly have that other kids get to have, even something as simple as swinging in a swing.  It is AWESOME that there are playgrounds like this that kids in wheelchairs are not considered out of the ordinary.  The greatest desire by kids is to be accepted and to have someone to play with, these desires are no different for kids with disabilies.


My hat's off you to you, Blakemore Family, you are an inspiration!  If you would like to goto their foundation's website,  Unlimited Play, click here to learn more about them.


If you want to see the story click here.  *Hint* the video for the story is to the far right up in the corner.  I had a hard time finding it.

I will be driving the bus

Sometime this November we'll be making a family trip to Branson Missouri. It will include my parents, Annette's parents, my aunt and uncle from Michigan, some family friends and of course the boys.

We will be staying in the condo complex we rented last year.The units are nice two bedroom units with a pull out couch in the living room. Jackson loved sleeping on the couch in front of the television.  This year will will be asking for one of the handicap accessible units because we will be taking Kade's chair.  So the fewer the stairs the better.

While we are down there we plan on hitting all the big spots, like Silver Dollar city, Dixie Stampede, the Segways and of course the outlet mall.  I can hear my bank calling me now.

Since we have a van, I imagine that once we get down there, all the seats will be full waiting for transportation.  I call myself the bus driver when we go on trips like this.  The only thing that would make it better is if we had a bathroom on board so I didn't have to stop for pee breaks.

What do you say

Sometimes someone says or does something that makes you think "Well, what do you say to that".  That happened to us twice today.

This morning we were at church, and Jackson was sitting next to me.  We were kneeling and praying with our hands folded on the pew rail.  Jackson leans over and whispers to me "Dad hold your hands right".  I gave him and puzzled look and told him that my hands were folded and on the pew.  He quickly responded "NO put your hands like this", showing me he put his hands palm to palm.  So, I obliged and put my hands palm to palm.  Again he leaned over and said "NO, point your fingers up so God can hear your prayers".  Now, WHAT DO YOU SAY TO THAT?

While at church, we had Kade in his chair.  It looks like a stroller on steroids.  While going to communion we did get a few "pitty looks", but whatever.  The little girl sitting in front of us, around Jackson's age, turned around and asked Annette "What is wrong with him" asking about Kade.  Annette really didn't respond to the girls inquiry.

The girl was asking what I am sure some other people were wondering to themselves, which is natural.   Sure, we could have told her about his POLG1 mutation, or his epilepsy, or how his muscles have not developed, or my favorite when people say "oh he is sleeping" we could say "no he has cortical vision impairment and he closes his eyes because he has issues with bright lights".  It is hard to explain to people what is going on with Kade, when we aren't sure ourselves.

What do you say?

Whats your Mindset

Your mindset is an important thing.  Sometimes it can dictate the outcome of an event.  If you go into an event with a positive mindset chances are you will see the outcome of the event as a positive one.  Just the opposite, if you go into an event with a negative mindset you will probably see the outcome as a negative one.

This week Beloit College came out with their Mindset List for their Freshman class.  The list is interesting and makes me feel old.  Their list focus' on events that "global changes".  Such as;

1. Few in the class know how to write in cursive.
7. “Caramel macchiato” and “venti half-caf vanilla latte” have always been street corner lingo.
18. Fergie is a pop singer, not a princess.
19. They never twisted the coiled handset wire aimlessly around their wrists while chatting on the phone.


Over the last few years our mindsets have changed.  I think the biggest change is that we will never see a twitch, odd stare, or jerk as "something kids do", they are most likely a seizure.  


The other mindset change is never to take things for granted.  No matter how bad you think you have it, there is someone suffering more, or with less money, etc.


Like I said it is all about your mindset; do yourself a favor and try to have a positive one.


If you would like to see the rest of Beloit's list go here.

Comparisons

I am stole the idea for this post from Ellen over at Love that Max.  Her son had a stroke at birth and has CP due to the stroke.  Read her post about comparing Max to other kids that had strokes at birth.

Comparisons are a sticky wicket.  When Kade was little, before we he started having seizures, we compared him to Jackson.  "He isn't rolling over when Jackson did", "He isn't holding his head up like Jackson did", "He isn't talking the way Jackson did".  The clues were adding for Annette that something was wrong, but I kept telling her not to compare the two because each kid does things differently.  Then all hell broke out.

We have had to force ourselves to stop comparing Kade to other kids.  Kade is in a league of his own, he marches to the beat of his own drummer, and he does things when HE WANTS TO DO THEM, not when books or people say he should do them.