Monday, October 4, 2010

Kids with Down Syndrome - Watching Praying with Lior

Last week I watched the movie Praying with Lior. It's a documentary about a Jewish boy with Down Syndrome preparing for his Bar Mitzvah. It wasn't really an agenda driven documentary, and so at some points it just felt like watching narrated home movies and was slightly scattered. If there was a point, it was to show the development of spirituality someone with very different mental capabilities.



A lot of it made me laugh - Lior was about as high-functioning as my little brother Matt is. By the way, Matt is currently with my parents at a South Asian hospital, down with something... they're not sure what. Maybe typhoid AND tonsillitis? In any case, he's pretty sick. Pray for him?

In any case, it's amazing how similar Lior and Matt are at some points. Little phrases they use, mannerisms, similar jokes, the way they look over their glasses very seriously when they read, the way they both love to sing and dance .... off key. They both love to tease and when they find a joke people think is funny they absolutely drive it into the ground.

I got really teary when this kid and his dad visited the grave of Lior's mother, who died of cancer. The father was remarried and the new mother was obviously doing great at parenting Lior, but you could still see the whole thing was very tender for the whole family, especially the older kids. Lior would make comments about his mother, probably at some points sensing that the topic drew a reaction and using it to gain sympathy or get attention... Matt does that too. But then there's a moment at the grave of the mother on the anniversary of her death where the father and his son stand in front of the grave awkwardly, Lior reads everything on the grave stone somewhat jovially, and then just bursts into keening tears, and the father cries along with him. Lior (and Matt) are high-functioning enough to grapple with very deep emotions but not be able to sort them out and identify them as much as other kids.

Death and goodbyes... those are the two hardest things for me to grasp. So yeah. That was the most emotional part of the movie.

The end of the movie was a few minutes of follow-up a couple years after the rest of the movie. Lior is older and starting high school, much like my little brother. During all the Bar Mitzvah stuff Lior is childish and funny. At the end of all of that when his father made comments about how this is really just the beginning of his teen years which might be very difficult, I sighed and affirmed that though. It's been hard for me to watch my brother struggling with adolescence... it's rough for someone developmentally disabled to deal with the awkwardness of a teenager, sexual development, increasing self-awareness, and teenage mood swings. When Matt was a little kid he was still different, but people thought he was SO cute. That's not the perception of teenage Matt, and I ache for him because he still wants to be cuddly and adorable.

Well.

We love him. Being born into a big family gave Matt a network of people that love him and play with him intentionally. Oh... and boss him around. :)

From 2010

From end of 2009

From end of 2009

From end of 2009

From christmas

DSCF6001

From end of 2009

1 comment:

Rae said...

Oh no, I find the thought of a sibling sick in the hospital half the world away very scary. So I just said a prayer for Matt.