WEBVTT

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[sil.]

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[music]

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Everyone knows Mark. People come here, and
they see his picture. And they go, \"Oh, he

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lives in my building. I know him.\"
How you been? How\'s everything?

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He\'s probably, like, the most
popular guy in the Upper West side.

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There\'s a picture of Mark and I over
here and the UPS man came in. And said,

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\"I know that guy.\"

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If he sees me smoking, he
gives me this (inaudible)

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You\'re in a documentary.
You just walked into

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the middle of a documentary about
Mark Puddington. Is that right?

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[music] He is a star. He\'s
the star of the West End

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Avenue. He\'s the best. He\'s
being very modest now.

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Look at the camera. Bye, honey.

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[music]

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I met Mark when I took a part time job working
with teenagers with developmental disabilities.

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I give his parents a break on the weekends
and I work with him on life skills.

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I remember when the first time we
start going by the escalator, because

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he was scared and he don\'t want to go by
himself. But little by little, he start going.

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I never knew anyone with
a disability before.

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And thought I\'d need to show Mark the city. But
he ended up introducing to everyone he knew.

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[music]

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I\'ve been spending Sundays with
Mark for years now, and I\'m

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starting to think more and more
about what\'s ahead for him.

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[music]

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Hi Mark.

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Good morning, good morning.

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No, no, we\'re not saying hello to him now.
He\'s – he\'s – he\'s filming.

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Now

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we\'ll do a little shaving.

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Okay.

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Lift your head back. Excellent,
little bit more, little more. One

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second more and then I\'m finished.

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Marky, he over here. He can\'t right now.

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You turn around because we
have to get ready for the bus.

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Ya, come here, let\'s
brush your teeth. Ready?

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That\'s it.

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The most difficult question
is what will happen to him

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when we\'re not around anymore.
Gonna be a nice day out.

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Who will ever love him the way we love him?

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Okay, and who will care for him.
Oh, thank you. Okay stand up.

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You put your jacket on.

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Oh ya, oh thanks, I forgot.
Here, you wanna pick it up?

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When we saw him coming
to the door, years ago.

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We never thought that he could stay for entire service.
And join the community in prayer in his own way.

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First of all yes, we want
to ask a few questions.

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You come to services every week.

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You dance on Friday nights. You come in the
morning, you sit with your mother, you pray.

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So what are you going to
do with your Bar Mitzvah?

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B-Y-M-Y-S-E Look at the letters.

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L-F-I-W-I-L-L-S-I-

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G-N.

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By myself I will sign B-L-E-S-S-I-N-G-S

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I will sign the blessings.

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Oh, beautiful. Beautiful, beautiful. The
Bar Mitzvah ceremony is a statement.

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That the child is now assuming
responsibilities as a Jew

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within the Jewish community and before God.

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The day after your Bar Mitzvah the
Torah\'s going to be bigger, huh?

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Now tell me something, what about holding the Torah? How... Mark
is going to hold it and his brother is going to help him. Yes?

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How, like that. Like here, like this?
So you\'re going to hold

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the Torah, and you\'re going to walk with it the Torah.
Wonderful. He had been present at the Bar Mitzvah.

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He got to see that it was important
the Bar Mitzvah carried the Torah

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all through the synagogue for everyone to be near. Ahh wonderful.
I asked him if he would like to carry the Torah for people.

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And he said he would. And I asked him if he would like
to become a Bar Mitzvah, and he said, yes he would.

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Do you want to dance? Ya. Ya Ya. In
this sample of the new CD, Mark you

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gotta an exclusive presentation.

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I think he feels that
something very important

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is happening. And something very important
is happening to him with his family,

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and with the community. And I think he gets that.
One of the things that Mark really would like

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you to feel in the moment of your Bar
Mitzvah is how much God loves you. And

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that even in moments when you feel that you

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are abandoned, God loves you and

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also how many people love you, Mark?

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To know that you\'re very
important to our community?

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[music]

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His best friends are the
people in the neighborhood.

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The people on the street, the people who,
we have to go out and see every single day.

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He insists on it, and it\'s his life.

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My buddy.

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We love that he\'s carved
this niche out for himself.

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But as he gets older, we\'re afraid
that he\'ll seem strange to people.

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We don\'t know how to help him
transition into adulthood

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without taking all the joy out of his life.

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[sil.]

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Good to see you. How ya feeling?

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You okay?

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How are you Margret. Go to the
bathroom sweetheart. Okay?

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Gentle, be gentle. We\'ll be very gentle. And I will
not hurt you. You\'ll look in your mouth, his ears.

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I\'ll check your mouth, I\'ll check,
I\'ll listen with my stethoscope.

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And I\'ll hear you breathing.
Yes you\'ll listen to me too.

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Mark was two weeks late being born,
and that was sort of the beginning.

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I thought his head looked a little strange.

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Uh, I can – I can remember that.
And he didn\'t cry.

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We were very worried that something
was wrong. As the months

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passed we became more and more concerned.

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He slept all the time. Maybe 20 hours
a day. He seemed to just lie there

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and let the world go by.

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Finally when he was one, he was diagnosed
with Cranial De Lange Syndrome.

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He\'s physically not able to make a whole lot
of sense. And so he\'s developed signing as his

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primary way of expressing himself.

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Name, Natalie. But he hears everything. You
want to tell her your name? Go ahead. Mark.

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Excellent. Mark, put your head up.

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Cranial De Lange is a congenital
neurological syndrome.

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The brain does not fully develop and therefor
there is intellectual and result motor

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disability. 52 and a half inches. Let\'s
see what you were last year okay?

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And again.

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Good, and again. Mark deep breathing.

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You do it yourself. Go ahead.
Characteristically a

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Cranial De Lange child has certain orthopedic problems
including a thumb that\'s not totally opposable.

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Which makes it very hard to do many of the things with
the hand that we need to do to manipulate the world.

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Hold it hard.

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Very good, very good. Thank you, big help.

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Mark we\'re going to have one shot today, okay?
Right there, tiny one okay. Not a big one.

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Not a big one, a tiny one. I\'m gonna wipe.
Here, could I have your hand to hold?

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Hold mommy\'s hand, you tell me when.

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Oh excellent, excellent, go.

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Is it a little ticklish?

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Mark it\'s going to be very fast. Hold mommy\'s
hand, ready? One, two, three, hold it.

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Okay, okay, it\'s finished
Mark, it\'s finished.

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Because of his physical limitations it\'s
difficult to measure his intelligence.

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It would be near impossible to clearly state this is his
motor disability, this is his intellectual capacity.

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The two are so tightly wound.

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Oh, you\'re sleeping on me.

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Hi Mark, here let\'s see you
throw it against the wall.

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Let\'s – let\'s throw it against
the wall and catch it.

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Ready? Alright, fire it in there.

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Not too high, not too high. Catch it, catch it. Yes, yes, I have
taken him to the playground, the local playground, Riverside Park

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for as long as he\'s been
able to play there.

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[sil.]

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Mark, hi, what happened?

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When he was younger, the littler
children found him very interesting.

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He doesn\'t speak, and they were curious about that. And
we would throw the ball at them and he had a good time.

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And we\'d be pretty sure that there would
be chikdren for him to play with there.

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Today, they won\'t play with him anymore.

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[music]

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Up, hear the bells? What
are the bells saying?

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Bong bong bong.

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The golden years for Mark are right now.

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Probably never going to be as nice as it is now when Margaret and
I are looking after him and organizing things so that he has fun.

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Very good jumping, alright.

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Kick it.

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Finished? What do you mean finished? What
do you mean finished? We just started.

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We just started Marc.

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Come on, that\'s no problem.

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Up, up, up, oh. That was an amazing shot.

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You want to work out? You want to get... get off some of these love handles
here? I\'m glad that I do have my brother. Without Mark, I think that

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something might be missing.

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Come on up, up, up. You gotta pull yourself up Mark.
Come on, up, up, up, up, up, up, up, up, up, down.

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Hey go down. It was definitely hard to
understand why, uh, my brother wasn\'t

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like all – all my other friends brothers.

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It was, you know, it was difficult

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cause he\'s always been the same.

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I\'ve changed,

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but I don\'t think he has done a
whole lot of changing himself.

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[music]

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Oh, we found it.

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Very good.

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Five six, seven, eight.

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There is only so many years that you
can play hide and go seek. Ten Mark.

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Here we come.

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I wonder where he is.

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Uh, we found him.

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Mark that wasn\'t a good hiding spot at all.
The point of hiding is to hide Mark, okay?

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Your supposed to not tell us where you are.

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But that\'s alright, we learn from
our mistakes, alright. Okay.

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[sil.]

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What do you want? Take pictures?
You\'re going to take pictures today.

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[sil.]

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[music]

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You like that music Mark?

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You gotta put one finger up
there, and press, okay. Ready?

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Take it at the same time. One, two, three.

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You got it Mark, just take it.

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Hey you got him in there?

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I think I heard it click Mark.

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Great!

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Okay, go ahead, press it,
you got to press it.

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Great.

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Nice to have everybody here. Thank
you for having us. Here\'s where

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we\'re up to right now.
See here\'s the family.

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Most people become Bar Mitzvah when they\'re 13. But when Mark
was 13, he really wasn’t ready. You gonna do the blessings?

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The thing that most worries
me was Mark sitting

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through his own Bar Mitzvah
because with me he\'s that

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maximum. I used to time it, 45 seconds.

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Now we can drink.

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Susan made it here mission to see
that Mark learned how to sit in the

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synagogue, in the sanctuary
during services. Now we light

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the candles.

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If Mark is acting in a way where
he\'s really trying to distract me.

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And trying to sign to me when he – I
think he should be paying attention.

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Or he\'s, um, playing with me.

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I give him a look, and it\'s my look that he knows. That is like,
come on. One day she told me he had just sat for twenty minutes

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and I couldn\'t believe that. We are mindful tonight of the
hardships they suffered and the cruelty they endured.

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It was definitely a big goal of hers that one of
her sons, you know, actually being a Bar Mitzvah.

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It wasn\'t going to be me because
I was just never into religion.

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In the burning bush that
would not be consumed

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despite the firing flames that engulfed it.
He saw the answer to his bewilderment.

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This was surely(crosstalk)

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I was brought up as a Episcopalian, and I was in fact confirmed in
the church. I\'m not personally interested in religion for myself.

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But, I support her doing it and I support
everything she\'s doing with Mark.

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See the people working hard.

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He is now 18 years old. If you have
children normally, by the time

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they\'re ten of twelve you
can start leaving them.

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You can start your normal routine again.

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With

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Mark, you know, it\'s just something
we\'ve adjusted to because you

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had to do it. Fish? Fish store?

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Mom might take you later to the fish store.

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The major issue is really that I have
been legally blind since I was five.

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I was hit with a rock
from, by another child.

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And it blinded one eye, the other
eye had been week from birth.

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I\'d been a writer all my life and in order
to keep us going I have to be able to work.

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Not to mention quite means for me,
because that\'s what I like to do.

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That\'s who I am. I\'ve something
in deterioration vision.

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There you go. You could basically
lead a blind, total blindness

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I\'m worried that at a certain point,

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I just couldn\'t help look after him.

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Wanna pay?

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And, that has thrown more of a
burden on Margaret\'s shoulders.

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Let\'s practice the blessing.

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Mark, okay, yes. Let\'s practice

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the blessing. Because we have a few minutes before
the bus is gonna come. And nobody\'s down here. Okay?

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And then we can go outside
after we practice

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the blessing, alright?

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Mark, look at me.

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Excellent, excellent.
Very, very, very nice.

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Okay, you want to go outside then?

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Okay, let\'s go. By yourself, by yourself. Oh, there he is. He parks
over there while he was waiting for you. Come on, let\'s get ready.

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Ya, he\'s gonna come around, he\'s gonna come around the
corner. Slow down, slow down, slow down, slow down.

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Slow down, slow down, Marky. Mark he\'s
gonna pull up. You need to slow down.

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That\'s it, that\'s it. Okay, go on up.

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Okay, go on in.

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[music]

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Would you like milk with your cereal?
Ya. Good.

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Do you want some fruit?

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Ya. Okay.

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Alright, Mark, look Mark what are
you saying? Thank you. Thank you.

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This is Mark\'s physical therapy session and we
do a lot of gross motor activities. One which

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includes the bicycle. And he\'s
improved tremendously on the bike.

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You want to get on it? Ready? One
of his favorite activities...

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Slow down a little bit.

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Good job. Excellent. Okay. We\\re gonna make

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that turn. Ready to make that turn? Whoa,
beautiful, you did it all by yourself.

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He has a very very very
very unusual sense of

00:23:00.000 --> 00:23:04.999
humor. He will probably not do things that you
know he can do, just to see how much of a rise

00:23:05.000 --> 00:23:09.999
he can get out of you. Four
over there and fix it.

00:23:10.000 --> 00:23:14.999
Look at what you\'re doing. Look at
what you\'re doing. Is that right?

00:23:15.000 --> 00:23:19.999
Okay. You know, if we give
him a magazine to read,

00:23:20.000 --> 00:23:24.999
he\'s just such a social being that if he\'s
sitting for more than a minute, without – in a

00:23:25.000 --> 00:23:29.999
conversation with someone. He goes nuts.

00:23:30.000 --> 00:23:34.999
You know he will call across the
room to get someone\'s attention.

00:23:35.000 --> 00:23:39.999
Or go to the other room. Yes, he\'ll get up
and walk to the other room. Hi. Excellent.

00:23:40.000 --> 00:23:44.999
Now Lily is here,

00:23:45.000 --> 00:23:49.999
but she\'s not in the room.
Do you see Yolanda?

00:23:50.000 --> 00:23:54.999
Uh, Mark, do you see Yolanda? Thank you very much. Okay,
we need someone to take our attendance to the office. Who

00:23:55.000 --> 00:23:59.999
wants to go? Okay Mark.

00:24:00.000 --> 00:24:04.999
Okay, you want to go? Okay?

00:24:05.000 --> 00:24:09.999
Okay.

00:24:10.000 --> 00:24:18.000
[music]

00:24:30.000 --> 00:24:34.999
Hi, what do you have for him?

00:24:35.000 --> 00:24:39.999
What do you have for him?

00:24:40.000 --> 00:24:44.999
Is that today\'s attendance? Yes, thank you.
Thank you, good job.

00:24:45.000 --> 00:24:49.999
Good work.

00:24:50.000 --> 00:24:54.999
Bye bye.

00:24:55.000 --> 00:24:59.999
Bye bye.

00:25:00.000 --> 00:25:04.999
Bye Mark. See you later.

00:25:05.000 --> 00:25:13.000
[music]

00:25:40.000 --> 00:25:44.999
I pretty consistently took
with the – with the goals.

00:25:45.000 --> 00:25:49.999
And so, I get results. I – I never have a problem with that. I don\'t
know – now I want to know how much is he transferring at home?

00:25:50.000 --> 00:25:54.999
Zero. That\'s what we were just discussing. He\'s
taking advantage of you, because you\'re mom.

00:25:55.000 --> 00:25:59.999
He can\'t do to us what he does to you.
Okay. Great.

00:26:00.000 --> 00:26:04.999
Thank you. Thank you. Mark, mark, this – this is a
nice lady. You\'re gonna stop it no stop it Mark

00:26:05.000 --> 00:26:09.999
You\'ve got to step back and not do it.

00:26:10.000 --> 00:26:14.999
Okay? You alright?

00:26:15.000 --> 00:26:19.999
You have to calm down. He\'s
not always nice to people.

00:26:20.000 --> 00:26:24.999
To be blunt about it, he spits at them. But it was always very –
on a very limited scale, and then in the last year really it\'s

00:26:25.000 --> 00:26:29.999
kind of escalated. Take one, and we\'ll
go out. No, everything\'s okay now. It\'s

00:26:30.000 --> 00:26:34.999
finished. I\'m sorry.

00:26:35.000 --> 00:26:39.999
Part of the reason that the problem is so untrackable
is that, everyone is so sweet and so understanding

00:26:40.000 --> 00:26:44.999
when he does these things to them that no one gives him
honest feedback. Come on, we have more places to go to.

00:26:45.000 --> 00:26:49.999
Okay, come on. And if someone actually did
get angry with him, it would really be

00:26:50.000 --> 00:26:54.999
a blessing.

00:26:55.000 --> 00:26:59.999
Mark. It\'s not personal, I\'m sorry.

00:27:00.000 --> 00:27:04.999
Everyone has their up
days and their down days.

00:27:05.000 --> 00:27:09.999
So when Mark\'s having a
down day, he just does it.

00:27:10.000 --> 00:27:14.999
He\'s spitting like crazy. I have never
seen him do any of these things.

00:27:15.000 --> 00:27:19.999
I have to tell you that the last
time he gave me the finger,

00:27:20.000 --> 00:27:24.999
I think he\'s still regretting it. He did that deliberately,
so that\'s why I know it was deliberate. Because

00:27:25.000 --> 00:27:29.999
that boy has phenomenal control of... I\'ve
never seen him do anything like that. The only

00:27:30.000 --> 00:27:34.999
thing I did see him do once was pat someone on the behind.
One of the girls was in front of him. You can be firm

00:27:35.000 --> 00:27:39.999
without being mean. Right. But it has to be your own style.
Yes. I couldn\'t do it. No you can\'t. It wouldn\'t work.

00:27:40.000 --> 00:27:44.999
Throughout his life, I\'ve been the only one
who\'s kind of said no to him. Alright,

00:27:45.000 --> 00:27:49.999
throw it now Marky.

00:27:50.000 --> 00:27:54.999
Hello. I try to treat Mark, how
a normal human being should be

00:27:55.000 --> 00:27:59.999
treated. Because he\'s not
always going to get his way.

00:28:00.000 --> 00:28:04.999
What is this supposed to be?

00:28:05.000 --> 00:28:09.999
As much as we try not to short change him

00:28:10.000 --> 00:28:14.999
and give him attention. It was not possible
to give him all the kind of attention

00:28:15.000 --> 00:28:19.999
that we wanted to. That a boy.

00:28:20.000 --> 00:28:24.999
I had a –a smaller brother, and I
can remember my resentments of

00:28:25.000 --> 00:28:29.999
how people doted on him. And there was no
comparison with what goes on in this house.

00:28:30.000 --> 00:28:34.999
Very nice.

00:28:35.000 --> 00:28:39.999
Look at that, Nicholas look.
Do it some more Marky,

00:28:40.000 --> 00:28:44.999
show Nicholas. Want a kiss?

00:28:45.000 --> 00:28:49.999
You got your kiss. You give me one.

00:28:50.000 --> 00:28:54.999
Thank you.

00:28:55.000 --> 00:28:59.999
[music]

00:29:00.000 --> 00:29:04.999
It\'s very difficult to say no to Mark.

00:29:05.000 --> 00:29:09.999
Very difficult, I mean I don\'t think anyone here has ever said no to
Mark. Aw. He can come in here and ask for anything and we\'d give it to

00:29:10.000 --> 00:29:14.999
him. That\'s how, that\'s
how difficult it is.

00:29:15.000 --> 00:29:19.999
You are cheating the guy.

00:29:20.000 --> 00:29:24.999
Even though he has this, you know, this disability.
It\'s no reason for him to get everything all the time.

00:29:25.000 --> 00:29:29.999
Whenever he wants.

00:29:30.000 --> 00:29:34.999
In the basket.

00:29:35.000 --> 00:29:39.999
[sil.]

00:29:40.000 --> 00:29:44.999
Sorry man.

00:29:45.000 --> 00:29:49.999
People frequently try to give him things.

00:29:50.000 --> 00:29:54.999
It sometimes makes me uncomfortable
for him to accept a gift.

00:29:55.000 --> 00:29:59.999
I don\'t want people to

00:30:00.000 --> 00:30:04.999
dole things out to him out of pity. I\'m going
to give it you because you\'re a nice guy. Okay.

00:30:05.000 --> 00:30:09.999
Children, do you want

00:30:10.000 --> 00:30:14.999
to give some of these to children?
You think we have enough of these?

00:30:15.000 --> 00:30:19.999
Think we have too many of these?
I – I agree with you.

00:30:20.000 --> 00:30:24.999
I think we could give some of
– some or all of them away.

00:30:25.000 --> 00:30:29.999
Where? Where children?

00:30:30.000 --> 00:30:34.999
We\'ll have to find some.

00:30:35.000 --> 00:30:43.000
[music]

00:31:10.000 --> 00:31:14.999
What gift would you want? That you
couldn\'t touch and you couldn\'t feel.

00:31:15.000 --> 00:31:19.999
B-L-E S-S-M-E

00:31:20.000 --> 00:31:24.999
Bless me.

00:31:25.000 --> 00:31:29.999
W-I-T-H

00:31:30.000 --> 00:31:34.999
-S-P-S

00:31:35.000 --> 00:31:39.999
-P-U-P-C-H

00:31:40.000 --> 00:31:44.999
Bless me with speech.

00:31:45.000 --> 00:31:49.999
[sil.]

00:31:50.000 --> 00:31:54.999
Bagel?

00:31:55.000 --> 00:31:59.999
You earned them. You really did.

00:32:00.000 --> 00:32:04.999
Uh, what did you do with
daddy across the street?

00:32:05.000 --> 00:32:09.999
In the water, you did S-W

00:32:10.000 --> 00:32:14.999
Facilitated Communication is a technique where you give
physical support to the person\'s hand. The person is then

00:32:15.000 --> 00:32:19.999
able to spell out just
thoughts on the letter board.

00:32:20.000 --> 00:32:24.999
Are you ready? Get your pointer finger out.

00:32:25.000 --> 00:32:29.999
You don\'t move the hand. You just give
support. The person moves his hand by himself.

00:32:30.000 --> 00:32:34.999
Because of Facilitated Communication he was
able to tell me things that he was afraid of.

00:32:35.000 --> 00:32:39.999
And things that worried him and,
uh, things that upset him. And he

00:32:40.000 --> 00:32:44.999
had never been able to do that before.
I-C-E-T-O-S

00:32:45.000 --> 00:32:49.999
Uh, Margaret had always felt that he
had something he was trying to say.

00:32:50.000 --> 00:32:54.999
Wasn\'t somehow or another wasn\'t able to say it. But
frankly, I, you know, he doesn\'t facilitate with me.

00:32:55.000 --> 00:32:59.999
He does not. I was wondering. Has anybody ever
told you that they don\'t think that you\'re really

00:33:00.000 --> 00:33:04.999
facilitating? I-H-A-

00:33:05.000 --> 00:33:09.999
I-H-A-T

00:33:10.000 --> 00:33:14.999
–E-T-H-E-P

00:33:15.000 --> 00:33:19.999
Facilitated Communication is
very controversial. People

00:33:20.000 --> 00:33:24.999
believe that the person who\'s holding
the hand is really the one who\'s

00:33:25.000 --> 00:33:29.999
doing the communicating. And the
person with the disabilities is not.

00:33:30.000 --> 00:33:34.999
I-N-N-B I hate the people
who don\'t believe me.

00:33:35.000 --> 00:33:39.999
Come on Mark, later. Finish
your signing. I\'m here.

00:33:40.000 --> 00:33:44.999
It\'s because...

00:33:45.000 --> 00:33:49.999
I asked him why he wouldn\'t facilitate with daddy, and he said because daddy doesn\'t believe it it.
He still doesn\'t facilitate very much with other people aside from me. He facilitates a word or two.

00:33:50.000 --> 00:33:54.999
But I\'m really the one he
does it with most. W-H

00:33:55.000 --> 00:33:59.999
[sil.]

00:34:00.000 --> 00:34:04.999
That\'s gorgeous. How long...

00:34:05.000 --> 00:34:09.999
Tomorrow, not today. Today we\'re going
shopping and buying your Talit today.

00:34:10.000 --> 00:34:14.999
What do you think? Do you like that one?
Do you want to look at some more?

00:34:15.000 --> 00:34:19.999
I like it. The most difficult piece of this over the last
three years has been trying to figure out how we were

00:34:20.000 --> 00:34:25.000
going to explain Mark\'s Torah portion.
His Parsha.

00:34:30.000 --> 00:34:34.999
Margaret asked me to teach her to chant Torah,
so that she could read in Mark\'s honor.

00:34:35.000 --> 00:34:39.999
But also she asked me
would I study with her.

00:34:40.000 --> 00:34:44.999
She chose the very very difficult portion
of the Torah for Mark\'s Bar Mitzvah.

00:34:45.000 --> 00:34:49.999
In this section are the requirements
for service in the temple.

00:34:50.000 --> 00:34:54.999
And one of the requirements
is that the priest

00:34:55.000 --> 00:34:59.999
be physically perfect. The
Hebrew is \"Moom\", or defect.

00:35:00.000 --> 00:35:04.999
And a priest has to be \"Blee
Moom\", without a defect.

00:35:05.000 --> 00:35:09.999
No man with a broken leg or broken arm.

00:35:10.000 --> 00:35:14.999
Or who is a hunchback or a dwarf
who has a growth in his eye.

00:35:15.000 --> 00:35:19.999
I was awed by her choice.

00:35:20.000 --> 00:35:24.999
That she wanted her son to have
an understanding of the full

00:35:25.000 --> 00:35:29.999
tradition. And not just the parts that are
nice. And not just the parts that are easy.

00:35:30.000 --> 00:35:34.999
But he shall not enter behind the curtain or
come near the alter, for he has a defect.

00:35:35.000 --> 00:35:39.999
Mark and I keep saying what does this mean?

00:35:40.000 --> 00:35:44.999
How can this be here? How can we read things
that are just so hateful and hurtful?

00:35:45.000 --> 00:35:49.999
After Mark studied that same Parsha, over and over and over again.
He finally came to realize that the reason we were learning it

00:35:50.000 --> 00:35:54.999
was because it made us sad. And because
it made us upset, and that we needed to

00:35:55.000 --> 00:35:59.999
grapple with it to try and
understand it better.

00:36:00.000 --> 00:36:04.999
This wasn\'t something that I could just ignore.
I couldn\'t just turn the page and go on.

00:36:05.000 --> 00:36:09.999
Because it was about him. It would be a terrible
thing if people really did think this way.

00:36:10.000 --> 00:36:14.999
That life doesn\'t have as much
value if you\'re not perfect.

00:36:15.000 --> 00:36:19.999
[sil.]

00:36:20.000 --> 00:36:24.999
Let\'s do the parts where you –
where I need to be here. Okay.

00:36:25.000 --> 00:36:29.999
Well I think it would be a more
dignified way of doing it.

00:36:30.000 --> 00:36:34.999
There were moments when everyone involved

00:36:35.000 --> 00:36:39.999
felt unsure.

00:36:40.000 --> 00:36:44.999
Whether it was wise or necessary to have chosen
this Torah portion. I just do funny, if not

00:36:45.000 --> 00:36:49.999
dignifies.

00:36:50.000 --> 00:36:54.999
Mazel Tov. You are very very special.

00:36:55.000 --> 00:36:59.999
Both of you. Thanks Marty. Thank you
for coming. Okay we\'re gonna go.

00:37:00.000 --> 00:37:04.999
Susan you open the – you
open the – you\'re not what?

00:37:05.000 --> 00:37:09.999
[sil.]

00:37:10.000 --> 00:37:14.999
Okay, can we talk later? When Margaret told
me about the Parsha that she had chosen,

00:37:15.000 --> 00:37:19.999
my feeling was that it was good to bring

00:37:20.000 --> 00:37:24.999
this parsha up as – as a an example

00:37:25.000 --> 00:37:29.999
of Torah. That, isn\'t – isn\'t – doesn\'t

00:37:30.000 --> 00:37:34.999
really give a good message.

00:37:35.000 --> 00:37:39.999
Okay. But I had a lot of
strong feelings about Mark

00:37:40.000 --> 00:37:44.999
being an example and so I
worry about his dignity.

00:37:45.000 --> 00:37:49.999
Look when are we gonna talk? Okay, can
we put the Torah back so everybody

00:37:50.000 --> 00:37:54.999
can go. Okay.

00:37:55.000 --> 00:37:59.999
When someone you love or something that\'s very important
to you presents itself in a way that you can\'t accept.

00:38:00.000 --> 00:38:04.999
You don\'t just you’re your back on it. You struggle with it
to try and make some sense of it and go forward from there.

00:38:05.000 --> 00:38:09.999
Okay, come, let\'s go. Okay, um,...

00:38:10.000 --> 00:38:15.000
[sil.]

00:38:20.000 --> 00:38:24.999
You\'re excited for your party Mark? Ya.

00:38:25.000 --> 00:38:29.999
Who\'s coming? David? Ya.

00:38:30.000 --> 00:38:34.999
Happy Birthday. Open the door.

00:38:35.000 --> 00:38:39.999
Hi Mark. Happy Birthday.
Hello, Oh we\'ve got... Hi

00:38:40.000 --> 00:38:44.999
Karen, how are you? Good to
see you, nice to see you.

00:38:45.000 --> 00:38:49.999
He\'s a very nice person to be with.

00:38:50.000 --> 00:38:54.999
And he well and he every gave me.
Happy Birthday to you.

00:38:55.000 --> 00:38:59.999
Happy Birthday dear Marky.

00:39:00.000 --> 00:39:04.999
Happy Birthday to you.

00:39:05.000 --> 00:39:09.999
Yay.

00:39:10.000 --> 00:39:14.999
One two three. Whoa.

00:39:15.000 --> 00:39:19.999
Very good, Mark.

00:39:20.000 --> 00:39:24.999
You can tear this paper. We used to get all
these toys for him. We got wonderful toys.

00:39:25.000 --> 00:39:29.999
His electronic keyboard, so that he can play. We got some other
musical instruments and certain games. Um, we got him videos. No.

00:39:30.000 --> 00:39:34.999
Finished?

00:39:35.000 --> 00:39:39.999
He always wants to be with someone
basically. He can\'t play by himself.

00:39:40.000 --> 00:39:44.999
He does not pick up a book. He does not play
with a toy. He wants you to play with him.

00:39:45.000 --> 00:39:49.999
Whoever\'s around has to give him
attention, um, all the time.

00:39:50.000 --> 00:39:54.999
He just won\'t watch television for example. The only think
he will watch are home videos that we made on our vacations.

00:39:55.000 --> 00:39:59.999
We used to go to Maine every
summer, with the whole family.

00:40:00.000 --> 00:40:04.999
You know, he likes to watch
himself, his brother and us.

00:40:05.000 --> 00:40:09.999
And that\'s it.

00:40:10.000 --> 00:40:14.999
He will not pay attention to anything else.
Once a camper is on that bus, you

00:40:15.000 --> 00:40:19.999
are not allowed on that bus what so ever.

00:40:20.000 --> 00:40:24.999
Look at me. This is great.

00:40:25.000 --> 00:40:29.999
[sil.]

00:40:30.000 --> 00:40:34.999
They wanted me to send him for three weeks.

00:40:35.000 --> 00:40:39.999
And I just really couldn\'t do it. We\'re going
to go boating. Do you want to go boating?

00:40:40.000 --> 00:40:44.999
That\'s my Mommy.

00:40:45.000 --> 00:40:49.999
I kept anticipating how he would feel.

00:40:50.000 --> 00:40:54.999
And thinking that he would never survive for three
weeks. Not knowing when the end was coming.

00:40:55.000 --> 00:40:59.999
But, he did.

00:41:00.000 --> 00:41:08.000
[music]

00:41:20.000 --> 00:41:24.999
The feeling of freedom
and relief and release

00:41:25.000 --> 00:41:29.999
is – is difficult to convey.

00:41:30.000 --> 00:41:34.999
When I go out by myself when I don\'t
have to walk at Mark\'s pace and make

00:41:35.000 --> 00:41:39.999
all kinds of accommodations to him,
it is the most wonderful feeling.

00:41:40.000 --> 00:41:48.000
[sil.]

00:42:00.000 --> 00:42:04.999
Left by the busload\'s, thousands of people
with disabilities and their caretakers

00:42:05.000 --> 00:42:09.999
flock to Albany. They held a massive rally at
the state capital to protest the recent cuts

00:42:10.000 --> 00:42:14.999
in disability program funding.

00:42:15.000 --> 00:42:19.999
These protesters accuse the governor of being insensitive to the needs of the
disabled. Do the right thing they chanted and restored funding for the development

00:42:20.000 --> 00:42:24.999
of additional 500 community beds for their
loved ones. The waiting list for my son

00:42:25.000 --> 00:42:29.999
is about 45 years. I can\'t put him
even on the list until he\'s at

00:42:30.000 --> 00:42:34.999
least 21. I\'ll be dead before
he has a place to live.

00:42:35.000 --> 00:42:39.999
There are no emergency placement. Manhattan is a Borough that is full
up. There are no vacancies. There was a suit against the government

00:42:40.000 --> 00:42:44.999
in Florida that they needed to provide
for people who weren\'t on the

00:42:45.000 --> 00:42:49.999
waiting list. In the end the result
was the decision that Florida had

00:42:50.000 --> 00:42:54.999
to provide residential placements within 90 days. The only way you could do that is
put up institutions again. There\'s no way you could develop that many beds that fast.

00:42:55.000 --> 00:42:59.999
The governor knows that

00:43:00.000 --> 00:43:04.999
we would not accept a
reinstitutionalization.

00:43:05.000 --> 00:43:09.999
That\'s the nightmare that we
don\'t ever want to reenter.

00:43:10.000 --> 00:43:14.999
[music]

00:43:15.000 --> 00:43:19.999
Even though I\'ve been an
advocate for many years,

00:43:20.000 --> 00:43:24.999
and I know about all the progress. And
there\'s been tremendous progress.

00:43:25.000 --> 00:43:29.999
When I think about Mark\'s future
at the core of my feelings,

00:43:30.000 --> 00:43:34.999
there\'s always a residue of Willowbrook.

00:43:35.000 --> 00:43:39.999
I don\'t think Willowbrook could happen again. But, knowing
all of the things that could go wrong paralyzes me.

00:43:40.000 --> 00:43:44.999
And makes it impossible
for me to take action.

00:43:45.000 --> 00:43:49.999
[music]

00:43:50.000 --> 00:43:54.999
I don’t want to leave him to

00:43:55.000 --> 00:43:59.999
somebody else\'s possible good will.

00:44:00.000 --> 00:44:04.999
I\'d rather take him with me.

00:44:05.000 --> 00:44:09.999
[sil.]

00:44:10.000 --> 00:44:14.999
I\'m getting so anxious to see him. I
really miss him, right at this moment.

00:44:15.000 --> 00:44:19.999
I\'m looking for the bus.

00:44:20.000 --> 00:44:24.999
[sil.]

00:44:25.000 --> 00:44:29.999
My mom, she gives, like, her whole life to him.
Like that\'s what she, that\'s what revolves

00:44:30.000 --> 00:44:34.999
that\'s – that\'s like the center of
her everything. I know, I know.

00:44:35.000 --> 00:44:39.999
I don\'t –

00:44:40.000 --> 00:44:44.999
I don\'t know...

00:44:45.000 --> 00:44:49.999
It depends on what time we get home, okay.

00:44:50.000 --> 00:44:54.999
As soon as he comes back, we both revert to our
patterns. And he expects me to do for him. And

00:44:55.000 --> 00:44:59.999
I do do for him, too much.

00:45:00.000 --> 00:45:04.999
It\'s not the best thing for him. It would be much better if I were able
to let him maintain the independence that he does work on and develop.

00:45:05.000 --> 00:45:09.999
And, um, I need to let him
do that more than I do.

00:45:10.000 --> 00:45:14.999
[music]

00:45:15.000 --> 00:45:19.999
You look terrific Mark.

00:45:20.000 --> 00:45:24.999
[sil.]

00:45:25.000 --> 00:45:29.999
I know that Mark feels the Bar Mitzvah is
more marking his passage into adulthood.

00:45:30.000 --> 00:45:34.999
But Mark\'s

00:45:35.000 --> 00:45:39.999
adulthood will be opposite
of a typical adulthood.

00:45:40.000 --> 00:45:44.999
He won\'t be the one who\'s taking
care of the next generation.

00:45:45.000 --> 00:45:49.999
There will always have to be
someone who\'s taking care of him.

00:45:50.000 --> 00:45:54.999
That is nice, that was really good Mark.

00:45:55.000 --> 00:45:59.999
I think I was little bit in denial

00:46:00.000 --> 00:46:04.999
that it could actually happen to her.

00:46:05.000 --> 00:46:09.999
It is real scary, anyone
would, you know, would worry.

00:46:10.000 --> 00:46:14.999
Ya, Hi Judd, I\'m just calling to let you know that, I don’t know
if you\'re aware but Mrs. Puddington had a heart attack. And I just

00:46:15.000 --> 00:46:19.999
need to focus right now on trying to get,
um, people to provide some extra respite

00:46:20.000 --> 00:46:24.999
while she\'s in, uh, the hospital.

00:46:25.000 --> 00:46:29.999
So, um, I just hopefully you\'ll
get this message. Bye bye.

00:46:30.000 --> 00:46:34.999
Step down.

00:46:35.000 --> 00:46:39.999
[]Step down. Come on, right into.

00:46:40.000 --> 00:46:44.999
You got it Mike, you can
do it, I\'m here. Mark

00:46:45.000 --> 00:46:49.999
come on. Mark, the bus has to leave.
Let\'s go.

00:46:50.000 --> 00:46:54.999
Let\'s go.

00:46:55.000 --> 00:46:59.999
Let\'s go, one more, come on, come on.

00:47:00.000 --> 00:47:04.999
Come on, you got it, there you go.
There you go, okay.

00:47:05.000 --> 00:47:09.999
Good Mark.

00:47:10.000 --> 00:47:14.999
So next time even faster, right.

00:47:15.000 --> 00:47:19.999
You wanted to talk to that lady, I know.

00:47:20.000 --> 00:47:24.999
But the bus is waiting, so let next time really fast, okay.
Cause I can – I know you can do it really fast, alright.

00:47:25.000 --> 00:47:29.999
Okay, good. Let\'s go to the zoo.

00:47:30.000 --> 00:47:38.000
[music]

00:47:45.000 --> 00:47:49.999
Flip it around, flip it
around again Mark. The...

00:47:50.000 --> 00:47:54.999
Take it out for one second. Let me show you. This
side here, this side needs to be facing you.

00:47:55.000 --> 00:47:59.999
It needs to be face up. And the
stripe needs to be face down, okay?

00:48:00.000 --> 00:48:04.999
You got it. There you go, perfect. Perfect.

00:48:05.000 --> 00:48:09.999
I\'m wondering have you
made any changes since we

00:48:10.000 --> 00:48:14.999
last spoke in terms of making plans
or arrangements for Mark\'s future?

00:48:15.000 --> 00:48:19.999
I actually haven\'t made
any plans for the future.

00:48:20.000 --> 00:48:24.999
And you would think that after
the heart attack I – I would.

00:48:25.000 --> 00:48:29.999
I\'m just not able to face making
provisions for Mark\'s future without me.

00:48:30.000 --> 00:48:34.999
It\'s too painful.

00:48:35.000 --> 00:48:39.999
Nothing can happen to me I\'m hoping
until he\'s completely settled.

00:48:40.000 --> 00:48:44.999
I don\'t know what that means.

00:48:45.000 --> 00:48:49.999
Let\'s just say, nothing
can ever happen to me.

00:48:50.000 --> 00:48:54.999
[music]

00:48:55.000 --> 00:48:59.999
Nice to see you. How are you?
Nice to see you.

00:49:00.000 --> 00:49:04.999
I came to visit you a couple of years ago. I\'m
Margaret Puddington. Hi. This is my son Mark.

00:49:05.000 --> 00:49:09.999
I hear you\'re the Mayor. So I need your endorsement. Ya,
you think we should vote for him. You think I should

00:49:10.000 --> 00:49:14.999
vote for him?

00:49:15.000 --> 00:49:19.999
So will we. When he gets to be 21 there\'ll be no more school for
him. Oh, I know, I know. And that\'s why all of us who have kids...

00:49:20.000 --> 00:49:24.999
I always think

00:49:25.000 --> 00:49:29.999
about Mark\'s future, always. What will happen to
Mark when Margaret and her husband pass away?

00:49:30.000 --> 00:49:34.999
I want him to show and prove to everyone

00:49:35.000 --> 00:49:39.999
that although he\'s disabled he can still build
whatever anyone – whatever anyone can build.

00:49:40.000 --> 00:49:44.999
He\'s a little fighter and you

00:49:45.000 --> 00:49:49.999
see that, and, eh, he wants
to be part of the world.

00:49:50.000 --> 00:49:54.999
And we want to let him. And I do

00:49:55.000 --> 00:49:59.999
wonder will he be able to
support himself one day

00:50:00.000 --> 00:50:04.999
at a job? Where will he end up if he lost his family? I always
think about him. Hoping that he get a little better, hope for

00:50:05.000 --> 00:50:09.999
anything hope for a miracle.
That\'s what I really hope for.

00:50:10.000 --> 00:50:14.999
I love you always Mark.

00:50:15.000 --> 00:50:20.000
[music]

00:50:25.000 --> 00:50:29.999
Everybody we have to be out by 4:30, so everybody could
you please sit down. Where do you want us to sit?

00:50:30.000 --> 00:50:34.999
Any place just scatter around, so like
your – have some in the back too.

00:50:35.000 --> 00:50:39.999
So you\'re going to be standing here
and I\'m going to be standing here.

00:50:40.000 --> 00:50:44.999
My son is going to be either standing here or sitting down, okay?
And then my son will come up, okay? And we are going to say

00:50:45.000 --> 00:50:49.999
a blessing for you. Okay, we\'re going
to bless you. So we\'re gonna put....

00:50:50.000 --> 00:50:54.999
So do you mind if put this
over your head like this.

00:50:55.000 --> 00:50:59.999
It\'s okay? Uh,

00:51:00.000 --> 00:51:04.999
It\'s okay, you\'re okay? Okay. The
Torah presented a challenge to us

00:51:05.000 --> 00:51:09.999
to understand what a defect is.

00:51:10.000 --> 00:51:14.999
That was a defect 3000 years ago.
It is not anymore.

00:51:15.000 --> 00:51:20.000
Ready?

00:51:45.000 --> 00:51:49.999
But

00:51:50.000 --> 00:51:54.999
we don\'t clap in synagogue. We don\'t
clap in synagogue during services

00:51:55.000 --> 00:51:59.999
This is rehearsal so they can do it now,
but they will not do it on Shabbat.

00:52:00.000 --> 00:52:05.000
[music]

00:52:10.000 --> 00:52:14.999
It is a unique event. It is something that
will never be able to be captured not by

00:52:15.000 --> 00:52:19.999
10,000 cameras. That moment,
when that be recorded, will be

00:52:20.000 --> 00:52:24.999
engraved in hearts

00:52:25.000 --> 00:52:29.999
and minds and soul.

00:52:30.000 --> 00:52:34.999
Mark, where are you mark? Mark, you
did such a wonderful job today.

00:52:35.000 --> 00:52:40.000
[music]

00:52:45.000 --> 00:52:49.999
I think Mark, kind of just stands and knows. I know he does, what
a special and wonderful day it\'s been. Um, and it\'s not over.

00:52:50.000 --> 00:52:54.999
[music]

00:52:55.000 --> 00:52:59.999
Mark made a gift for Susan

00:53:00.000 --> 00:53:04.999
which he would like to present to her now.

00:53:05.000 --> 00:53:09.999
There are times in life that are so confusing
for me that I made the wrong decision.

00:53:10.000 --> 00:53:14.999
And Mark was enjoying himself. If he didn\'t
feel like a spectacle, then who was I to become

00:53:15.000 --> 00:53:19.999
paralyzed in that way.

00:53:20.000 --> 00:53:24.999
I think it\'s

00:53:25.000 --> 00:53:29.999
great his – his mother, his
mother\'s speech was great.

00:53:30.000 --> 00:53:34.999
And(crosstalk)

00:53:35.000 --> 00:53:39.999
David, I\'ve been waiting to meet you.
It\'s nice to meet you.

00:53:40.000 --> 00:53:44.999
If my

00:53:45.000 --> 00:53:49.999
parents told me they felt bad about paying more
attention to my brother then they did to me.

00:53:50.000 --> 00:53:54.999
I would tell them that, I
mean, don\'t worry about it.

00:53:55.000 --> 00:53:59.999
No one, no one has to go through
what Mark goes through.

00:54:00.000 --> 00:54:04.999
[music]

00:54:05.000 --> 00:54:09.999
I believe that his Bar Mitzvah
is a kind of validation of his

00:54:10.000 --> 00:54:14.999
being, um, a real human being. And
not just someone who\'s retarded.

00:54:15.000 --> 00:54:20.000
[music]

00:54:25.000 --> 00:54:29.999
People realize at the Bar Mitzvah
that Mark had worked very very hard.

00:54:30.000 --> 00:54:34.999
They saw him without pity
because they all saw what he

00:54:35.000 --> 00:54:39.999
could accomplish. So that he had dignity.
If another family came

00:54:40.000 --> 00:54:44.999
to me with the fears that I have, I would
– I would point them in the direction of

00:54:45.000 --> 00:54:49.999
their child.

00:54:50.000 --> 00:54:54.999
You cannot just sit and
give in to your worries.

00:54:55.000 --> 00:54:59.999
Mark was a big part of the service
but not the whole service.

00:55:00.000 --> 00:55:04.999
And that\'s what we want for our kids.

00:55:05.000 --> 00:55:09.999
To be just in the flow of life.

00:55:10.000 --> 00:55:14.999
Not the centerpiece, but
just in the flow of life.

00:55:15.000 --> 00:55:23.000
[music]

00:56:55.000 --> 00:57:03.000
[sil.]