Music Within

Kurt and I watched “Music Within” this week. I hadn’t heard of it before seeing a preview but I knew I would like it before even seeing it. The title alludes to a saying by Oliver Wendell Holmes that says most people die with the music within them, meaning that they have never been able to figure out what their gift is, what they would excel or what they are meant for before they die. I have wondered several times if there was something I would be good at if I had only tried. Maybe I am an excellent ____ (fill in the blank) but I’ve just never given it a try. I know it’s not drawing because I have a hard time with stick figures. I know it’s not music since I have given that a try and have NO skills. But maybe there is something out there? The guy in the movie, Richard Pimentel found his music within as a champion of disabled causes. Himself deaf from a Vietnam War injury, he hated the discrimination against disabled Vets and other disabled people in the work place and in public places (physical accessibility etc.). It’s a true story. He spear headed the ADA – American’s with Disabilities Act. It’s amazing to me that this wasn’t passed until 1990 (effective 1992). Obviously it hit home with Kurt and I a bit more than it would with someone else because of Luke. It also made me think of all the parents and supports that stood up to common, accepted thought that mentally handicapped kids shouldn’t be in public schools. They found their music within and now millions of kids (and their parents for sure!) benefit from their fight. I’ll let you know what my music within is if I ever find it. Who knows, maybe I already have and just don’t know it yet??
Luke and Bennett are doing new fun things left and right. Bennett is now crawling and climbing on everything! Favorites are the bathtub, dishwasher and most importantly anywhere Luke is (bed, trampoline, stairs etc.). It’s cute seeing Bennett chase after Luke on his hands and knees and climb up after him. Of course I also love when he crawls over to find me and then gives me that killer “I found you mommy” smile that melts my heart. Even when he tries to push open the shower door (while I am in it) or has to join me in the bathroom, its fun to see him seek me out. I love it, each and every time and I try to photograph that smile in my head so I can remember it 13 years from now when he thinks I am SO LAME. I know the day will come, but for now, I am fine being interrupted in the bathroom. The transition from army crawl to regular crawl was slow but once he regular crawled (just a few weeks ago) he did the pulling up thing right away! The first time we saw him do it (history for me folks!) was May 24th. After that first time he was off to the races. He’s even stood unassisted a few times (granted that only lasts 2 seconds and he is flapping like a bird but hey, everything counts!)
Luke has also been working very hard with PECS (Picture Exchange System). The end goal of the program is to have Luke have a book of things he wants (food, places etc.) and he selects the picture and brings it to someone who can help. He ‘exchanges’ the pictures for the desired items. There are a millions steps to get to that stage though. We start with 1 picture and just teach him (over and over) that if he hands us the picture of the fruit loop, we will give him one. He’s got that part down. The next stage is ‘distance and persistence’. This means he has to take the picture (which is velcroed to a book) and bring it to someone who is standing a few feet away. The persistence part means that he has to make you take the picture by putting it in your hard or ideally, something like tapping you get your attention. He’s doing the in your hand thing but tapping is a whole other concept. The next step will be discrimination – meaning knowing the difference between two pictures and giving you the one that he wants. They train this by giving him 2 pictures of things but only one is a preferred item (so you know he is giving you the one he wants). We’re not there yet but we are very excited about how far he has come so far. All that therapy is working!
Luke’s also getting much more physically confident. He can crawl up on a regular height bed and get back down. He has even started climbing up the stairs totally by himself. I don’t mean with me right behind him but totally on his own. If he feels like jumping on the trampoline, he just goes upstairs. The first time it happened I thought – what’s that noise up there and ran up and realized it was Luke. The next time it happened was when my parents were in town to help with the auction. We were talking about his skills and as if on cue, he went right up! It’s amazing to us. Of course I am totally scared that he is going to fall as I am a totally ‘fraidy-cat and as Kurt would say – totally over protective. I’m getting better though – yesterday I let him go up and down without running over there to walk behind him with my hand near his butt. AND I only told Kurt to stop swinging him so high on the park swings one or two times. It’s hard to tell him to stop when Luke is belly laughing with the biggest smile on his face as he zooms through the air.
We’ve started the potty training adventure but my flight is coming to an end (Nashville for work) so I will have to touch on that in another post.
Good times!