I apologize in advance for a couple things. First my computer is on the fritz, so I'm posting from my phone! Second I apologize if this post is all over the place! I feel like I'm being pulled in a bunch of different directions when it comes to inclusion, and that may also come out in this post!
Tuesday, June 11, 2013
Posted by Lacey at 7:46 PM
Thursday, June 6, 2013
We made a huge step forward in Jax cares and well being last week!
Jax can't go in his chest or arms, but his surgeon is confident he can find a place to put it. It may even go in his abdomen, if we can find someplace, his abdomen is a bit crowded!
One quick poke into the round part, and your automatically into central access! You tape it down and it looks just like a PICC line from the outside!
This placement can't come fast enough, after today again poking and poking and getting nothing at a lab draw!
Whatever can make Jax life easier, we'll gladly take it!
Posted by Lacey at 6:21 PM
Monday, June 3, 2013
I'm sure you've all heard the stories in the media lately. First it was the story of rich Manhattan mommies hiring disabled people as tour guides at Disney World to get the on the rides faster with their handicap pass.
Then just the other day Rosen did a report on the Today show where they went undercover and hired supposed disabled people to get them on the rides faster at Disneyland.
Every time I think of this it has me fuming! Some people said hey, disabled people can make good money doing this! For me its, hey, lets teach disabled people that its ok to lie and cheat! Ya, thats a great idea!
The other problem with that, is look at the two people hired by Rosen to use their pass....both of them were themselves lying about being disabled! One guy wouldn't even say his disability, the other said it was her back and knees. So her back and knees were so bad that she can't stand in line, but she can walk the entire park, and go on jerky rides! Sorry as I roll my eyes to that one!
As frequent visitors to Disneyland, we've noticed the abuse grow to a disgusting level! Right now the big excuse is Autism. Because Disney is not allowed to make your prove your disability, autism is a great excuse because you can't physically see that a person has it. I watch everyday perfectly healthy adults and children walk right on with a handicap pass. And actually, if you walk into Disney and say you need a pass because you have a child with Down syndrome, you need something more to get the pass. Just having DS alone doesn't get you a pass, as it shouldn't. Arina doesn't need a handicap pass. Is she good in lines? No, not many toddlers and preschoolers that I know enjoy standing in a long line. If your child has major sensory issues or can't walk yet at the age a child typically walks then yes, a handicap pass is needed.
Let me tell you how glamorous it really is to have a truly disabled child and actually need the pass for what its meant for!
It means actually waiting longer for many rides because we have to wait for a special handicap vehicle.
In rides that we have to transfer it means unhooking and carrying a feeding pump, oxygen, and 25lb dead weight child onto the ride.
It takes us longer to get on and off every ride. It takes longer to get us settled on the tram, because we have to tie down Jax chair for safety reasons.
I wouldn't change a single thing about Jax. We love every little bit of his gorgeous self! But caring for him is indeed a lot of work!
We do this because Disneyland is a magical place for us. Its a place where Jax can forget about the pain of having multiple medical issues. It makes him smile and it makes us smile! For us its definitely the Happiest place on earth!
Watching Arina and her secret "thing" that her and the characters have. Because Arina is a kiss blower, now the characters will blow her a kiss, and when she blows one back they catch it! Its priceless!
I can only hope that in the future Disney changes their policies, requiring documentation to prove your disability. I hear that its coming, and if you watch the Today show clip, Disney is not tolerating this abuse of the handicap pass! I would love to see that cocky idiot's face when his handicap pass, and possibly even his annual pass is taken away because of his stupidity!
Until then, if people think its so glamorous to get a handicap pass, we'll let them hire Jax as their "tour guide". We'll see how long it is before they bring him back and say, this is too much work, its not worth it!
Posted by Lacey at 9:25 AM