Benjamin, Music, and the future

What is it about Disney movies and their songs that make us want to sing along? If you have ever seen this hillarious spoof from Navy Baseball and enjoyed it...

...you should add to your list of fun video clips to watch >>Tangled with Ben singing "At last I see the light"<<  I am referring to the music in this scene:

I absolutely must record and post that video one of these days. :)

You see, I used to find it kind of funny to watch Ben 'sing' along with music he adored. He sings about one note, he is loud, and he is totally animated and swallowed up in the action, but today as I walked in on Ben and that touching scene in Tangled, my eyes were filled with tears. Here is a scene depicting a person who has finally gotten to see that which she has always dreamed of--and that at the same time that she is about to discover that a person she loves, loves her back. This is what we, at least in the western world, have for centuries depicted as the height of life: beauty, goodness, and meaning all at the same time, in company with persons we care about. It does not get any better than that. It no longer struck me as funny, but it seemed to me that he was not only entering into the song and its words, but that those moments are for him not only enlightening but soul filling. When Ben sings, he is the happiest of all.

I wondered what it means to him to see the light, what it means for him to experience the familiar beautiful music, to sing along with it. -- I wondered what happiness and light means to him long term. He looked happy in that moment, very happy, and he has the blessed lack of self-consciousness that when he is happy like that, he just sings and moves, and he doesn't care one rat's tail (or rear end, for that matter) what you think about his expression of happiness. And I wonder what I can do for him to help him live through many such moments.

You see, I am busily trying to figure out (as much in consultation with him as he is capable of) what his future looks like past high school, how to obtain guardianship of him in 3 short months when he turns 18--all those long term decisions that will largely define his life far into the future, including after I am gone, if he outlives me-- and even if he does, where will he live and how will he live when I am too old and do not have the strength to take care of him. 

This summer I have 3 tasks

1. apply for and go to court to solidify the guardianship (pricetag $500 to $2000 depending on whether I decide to revise my will at the same time).

2. apply for an extension of his medicaid so it does not lapse when he turns 18.

3. Apply for (and likely get denied) the Medicaid waiver for physical disabilities for Ben -- likely he will have to stay on the waiting list for the one for the developmentally disabled.

But money and legal issues aside, what does his future look like? Job wise, dependent care wise (someone taking care of him while I work), and otherwise?

I see him with music, and I think music is one of the things that makes him the very happiest, and music is going to be a big part of his life, I hope.

In church, he would LOVE to sing in the choir. In fact, a week ago, when I was at choir practice, I was trying to figure out why the basses sounded so bad, when I realized Ben had snuck up there and was 'singing' with them. The basses did not have the heart to tell me to remove him and put him back over in the pews to watch. When I did remove Ben, he was more than mildly disgruntled. He loves to sing. 

Also, in church, when he is not an altar boy, he has his copy of the director's score, and he waves a pencil in beat to the music every week. Thankfully the Orthodox service is mostly sung, so for all 90 minutes, he can 'direct' most of the service from his pew. His sense of tempo is good, and his direction (though I know it distracts some) is his way of singing, and he does it with all his heart. He so totally copies our choir director's motions, all the way down to how Richard used to cut off the diction of a 't', or hold a note while the decons chant their litanies. He can follow his own director's book because he knows how to read, and of all the people I know that go to church, none know more precisely where we are in the liturgy than Ben.

In the car, I am always tuned to KVOD (unless they are fund raising) and Ben beats to Mozart, Beethoven and Offenbach everywhere we drive. At home, his favorite movies are musicals, and you should see him STEP IN TIME when he watches Mary Poppins. The floor is rocking. He really gets into it. 

We have taken him to live concerts, to musicals, to theatre performances, but I actually think, if I ever dare go outside the box and figure out where to bring this about, that he would love Karyoke, he would love acting and singing in a play, he would love being in a band and in a choir. But that requires shattering boxes and stereotypes of what I normally do and don't, what school and other places will and will not allow, etc.  It requires boldness, asking, trying, as well as innovation to make it happen -- music for Ben, at least some of the time.

In the meantime, I am left with the memory of his singing this morning: his radiant face entoning "I see the light", and wondering if I will be able to help him increase those precious moment of beauty in the life plan I am trying to orchestrate for him.

To wrap up. Ben and I recently saw the latest Disney, Maleficent. And while there is an academic critique that could be made of its details, plots, and where it falls short (academics can always find such -- and it has been said that there is a reason that nobody ever raised a statue to honor a critic) the one thing that movie really got right was 'true love'. The thought that it was not the young man's kiss that restored her, but the kiss of a loving mother (mother figure -- not even her real mother) seemed so very true to me. Romantic love can be fleeting (or for some it can last) but the love of a mother for her children is true and enduring.

The Least of These

In my native tongue (Danish) the biblical phrase “Love your neighbor” is translated “Love your ‘next’”. As a child I always took the phrase as a call to love the next person that crosses your path, the next person you happen to run into during the day. That ain’t easy…

Recently in the pursuit of services for my son Ben, who will be 18 in September, I had occasion to call on an advocate from the ARC (Association of Retarded Citizens). She asked me to meet her at one of the many places where she works, in a homeless food kitchen, and she asked me to have lunch with her and her clients before we would sit down and discuss the specific issues that I was having with procuring state services for my soon adult son.

Ben and I arrived, and joined the food line and piled our plates with tortillas, beans, lettuce, and salsa, and sat down to enjoy lunch with about 8 other people. Our host, the advocate, was busy with a client in her office.

Her clients were very friendly, and they all introduced themselves. An elderly man, with long stringy greasy hair and a shirt that looked like he had been under the hood of a car most of the morning, served Ben and me tall glasses of iced tea. The others let us go first as honored guests. Others handed us napkins and showed us where to sit.

Ben fit right in, apart from his always being slightly overdressed with his usual tie and button up shirt. He sat down comfortably and ate, unconcerned with whom he was with, what they looked like, smelled, like, or how they ate.  

I on the other hand felt self-conscious about my over-dressed attire (I dress well for work and for doctor’s appointments and lawyers appointments, and I had seriously misjudged what the occasion required). But more to the point, I did not know what to say to these people. My presence in the room was big enough (compared to what I imagine their normal camaraderie was like) to put a damper on their spirits, putting them at a loss for how to resume normal conversation—or so, at least, it felt to me, and I was sorry for it.

This particular group consisted eight to ten morbidly obese persons.  All of them were 40 or older. Apart from the obesity, another tell-tale sign of poverty was the bad teeth and missing teeth in every mouth that grinned at me. But what took me a while to figure out was why their conversation (to which I was a mute bystander) seemed so juvenile to me.

Awkward in the face of my intrusion, they offered all their attention and conversation to a pug (owned by the secretary in the front office) who skittered from chair to chair licking food off people’s forks—forks, which the people afterwards would put back in their mouths as they continued eating.

These people laughed, they talked with food in their mouths, they belched loudly, unhampered by the middle class do’s and don’ts that constrain most of my behaviors at table.  It finally occurred to me that every single one of them had a low IQ –in other words, they were retarded—not as low, perhaps, as Ben, but 60- 80 or below is my guess.

Interestingly enough while Ben is about IQ 45, his table manners and ways of eating, conditioned by persistent middle-class table training, were incredibly refined compared to the rest of our company. Elbows at your sides, use both knife and fork, take small bites … you know the drill. (No, I am not patting myself on the back for this small feat in my child training. In light of these people, their needs, and the over all situation, who CARES if they belch at the table?)

After lunch, when I got back with the advocate to address Ben’s case, I asked her about Ben and his future. You see, the state of Colorado has a waiting list for funding for day care for adults with mental disabilities once they leave the public school system. Obviously, an adult with developmental disabilities needs to be somewhere while his parents go to work. I asked her what happens to adults with developmental disabilities, whose parents cannot or will not take care of them (while they are on the Colorado waiting list to get this day care funding). Nothing, she answered. Absolutely nothing. They are on their own.

Those persons I ate lunch with are homeless retarded persons, clients of this advocate who is trying to do what she can for them, while they are on the waiting list to get state funds so they can be taken care of properly. Likely they had parents who took care of them but have since died, and there is nobody else to take care of them.

I asked her what would happen to Ben if neither of his parents wanted to take care of him after he turned 18.  The answer was precisely what I dreaded. He would also be on his own until his place on the waiting list came up.

It is unfathomable to me to leave someone with the IQ of 45 in the street!!

Colorado, the advocate said, is 48^th lowest in the nation in the quality of care it offers its developmentally disabled adult community. (Much could be said, but I shall leave your own thoughts to ponder the weakest of the weak in our society).

[There is good news, however, and I must end on this note to do justice to my state. Governor Hickenlooper has spearheaded a movement to get rid of this waiting list with some legislation that just was passed in April. Colorado counties hope to get rid of their waiting lists for the developmentally disabled in the next year or so J. I was told that likely (not guaranteed but likely) Ben will be off the waiting list within a year of his 19^th birthday if all goes as they think it will. – We are blessed for Ben to turn 18 at this happy juncture and not 5 years ago.]

I drove home from this meeting deep in thought. Ben sat next to me waving his pencil-baton to the beat of Mozart – we were going back to our comfortable middle class existence by means of our air-conditioned car.

With what tremendous grief and worry, must the dying mothers or fathers of those precious people have drawn their final breaths--knowing that there was nobody to take care of their adult disabled children.