Medicaid is the major provider of funding for facilities like St. Mary's, and they have implemented a 'new' approach to the provision of services to persons requiring long-term services. "Person-Centered Planning" is a means of coordinating services that places the wants, hopes and choices of individuals with disabilities front and center.
What, you say? Isn't this a big "duuuuh!"? Isn't this what has always been done? Well, yes and no. While all health care providers certainly want to give their patients the best care possible (or at least we hope they do), much of it has historically been geared toward what we (as the providers) feel is important FOR the patients vs what they feel is important TO them.
At St. Mary's, we've always been concerned with our kids' happiness, and I give great big kudos to the staff and administration there for being so willing (gladly willing) to go the extra mile to ensure that not only are their physical bodies cared for, but that their hearts are nurtured as well. It's tough enough to have to live with permanent disabilities. We want happy kids. I am constantly amazed at the lengths we will go to see that smile, to bring that bit of joy.
Enter Mr. Brandon. He has definite ideas and strong opinions about his wants, hopes & needs. We have already taken him to Blacksburg for Virginia Tech football games (go Hokies!) twice in the last 2 years (scroll to Nov 13th). And in the last few months, we have put together "Team Brandon" to determine what his thoughts are about what goes on with his care and what he wants for his future.
No, we're not talking college at this point. Baby steps, folks.
Among discussions of boring medical issues, we discovered that he wanted to go to the beach. He has been to the boardwalk in his wheelchair a couple times, but he has never felt the sand between his toes or the sea wash over his body. Such simple things, things that we take for granted, can mean the world to someone who is totally dependent on others for his care. So he wanted a beach party for his team, including his family. And a beach party is what he got.
There's a lot of planning that goes into something like this. We have to think about things like transportation, shelter, getting him from the boardwalk to the sand, etc etc etc etc. It took a couple weeks to work out all the logistics of what we would need. One of the main things we needed was a beach wheelchair - the kind with the big balloon tires that are easy to push over the sand. We were loaned one that belongs to a friend of his. It was perfect, and many many thanks to Brandon's friend and her family for their generous offer.
The weather was also perfect - sunny and in the 80's.
First things first though - we needed a nice stroll to the Dairy Queen because the ice cream was calling.
The next thing that we had to do after we all got there was to set up the canopy and get him out of his wheelchair. He had been in it for quite awhile, and he has near-constant back spasms. He wanted to go on his belly, and he quickly discovered the pleasures of digging in the sand. Normally, his right arm doesn't cooperate with him at all, but this gave his crazy arm something useful & fun to do.
What, you say? Isn't this a big "duuuuh!"? Isn't this what has always been done? Well, yes and no. While all health care providers certainly want to give their patients the best care possible (or at least we hope they do), much of it has historically been geared toward what we (as the providers) feel is important FOR the patients vs what they feel is important TO them.
At St. Mary's, we've always been concerned with our kids' happiness, and I give great big kudos to the staff and administration there for being so willing (gladly willing) to go the extra mile to ensure that not only are their physical bodies cared for, but that their hearts are nurtured as well. It's tough enough to have to live with permanent disabilities. We want happy kids. I am constantly amazed at the lengths we will go to see that smile, to bring that bit of joy.
Enter Mr. Brandon. He has definite ideas and strong opinions about his wants, hopes & needs. We have already taken him to Blacksburg for Virginia Tech football games (go Hokies!) twice in the last 2 years (scroll to Nov 13th). And in the last few months, we have put together "Team Brandon" to determine what his thoughts are about what goes on with his care and what he wants for his future.
No, we're not talking college at this point. Baby steps, folks.
Among discussions of boring medical issues, we discovered that he wanted to go to the beach. He has been to the boardwalk in his wheelchair a couple times, but he has never felt the sand between his toes or the sea wash over his body. Such simple things, things that we take for granted, can mean the world to someone who is totally dependent on others for his care. So he wanted a beach party for his team, including his family. And a beach party is what he got.
There's a lot of planning that goes into something like this. We have to think about things like transportation, shelter, getting him from the boardwalk to the sand, etc etc etc etc. It took a couple weeks to work out all the logistics of what we would need. One of the main things we needed was a beach wheelchair - the kind with the big balloon tires that are easy to push over the sand. We were loaned one that belongs to a friend of his. It was perfect, and many many thanks to Brandon's friend and her family for their generous offer.
The weather was also perfect - sunny and in the 80's.
First things first though - we needed a nice stroll to the Dairy Queen because the ice cream was calling.
The next thing that we had to do after we all got there was to set up the canopy and get him out of his wheelchair. He had been in it for quite awhile, and he has near-constant back spasms. He wanted to go on his belly, and he quickly discovered the pleasures of digging in the sand. Normally, his right arm doesn't cooperate with him at all, but this gave his crazy arm something useful & fun to do.
Unfortunately, we saw this coming, but luckily had plenty of water on hand to wash the sand out of his eyes & mouth.
It didn't deter him from his mission of digging straight through to China though. We ended up doing quite a bit of rinsing, but he figured it was worth it. He loved this best of all.
But hey, the waves are waiting.
But hey, the waves are waiting.
Us: Brandon, do you want to go down to the water now?
Brandon: Uh uh.
5 minutes later:
Us: Brandon, don't you want to go in the water yet?
Brandon: Uh uh.
Couldn't figure out why he wasn't keen on getting in the water.
Us: Brandon, don't you think it's time to get in the beach chair and go in the waves?
Brandon: Uh uh.
Okay, this is getting silly.
Us: Brandon, it's time to go to the water.
So, because we're all meanies, we put him in the beach buggy and wheeled him down to the waves.
He was NOT impressed.
Brandon: Uh uh.
5 minutes later:
Us: Brandon, don't you want to go in the water yet?
Brandon: Uh uh.
Couldn't figure out why he wasn't keen on getting in the water.
Us: Brandon, don't you think it's time to get in the beach chair and go in the waves?
Brandon: Uh uh.
Okay, this is getting silly.
Us: Brandon, it's time to go to the water.
So, because we're all meanies, we put him in the beach buggy and wheeled him down to the waves.
He was NOT impressed.
But it was only some anxiety of the unknown.
Didn't take him long to appreciate the enthusiasm of everyone around him, the crashing of the waves, the coldness of the water, and the doggone FUN of it all!
He loved this best of all. Oh, what the heck. He loved it ALL!
These are some clips of him getting progressively deeper in the water. I swear, he had a blast.
These are some clips of him getting progressively deeper in the water. I swear, he had a blast.
This last clip has a random little boy that was totally without pretense or curiosity about the boy in the chair. He just kept running back & forth between Brandon and the waves, talking & high-5'ing Brandon like he was any other kid. I wanted to hug him.
And, on the way home, exhausted but happy. We are totally going to do this again.
3 comments:
Cheers to Team Brandon! Looks like he had a great day. Great stuff.
RAD
Beautiful story. Thanks.
That was a very sweet, marvelous story! What an adventure for Brandon and such a great gesture for you to do that for him!!
Post a Comment