WEBVTT

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Our guide on our diet

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on hardest part come out with a disk
first off the acceptance of deafness

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as children she had been shared with broken
hearings and show those shows again timber.

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I think it\'d be difficult for me to
imagine to imagine this particular term

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this particular type of spring the first
thing I have initially to diminish in mind.

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Most parents first wish for
their child is that it is born

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healthy But more than 10% of the
children in this country have

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a disabling condition no parent
has ever truly prepared for

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the complex task of meeting the special
needs of a child with a disability.

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Especially in the context of a world
designed to reward the fastest.

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The smartest the most physically
attractive as countless professionals

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move in and out of their lives sometimes
helpful sometimes not the only certainty

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for these families is that
their lives will be forever

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changed this is the story
of five such families

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I\'d like to live at least 14
million for some 30 years old.

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I\'ve seen wife. Three decades.

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Ready Dan you loser

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My household consists of myself
my 16-year-old son Matthew

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has Duchenne muscular dystrophy
his half brother Danny.

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Who goes to school at UNC and will we ever
woman that lives downstairs for name is Kerry.

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And she helps us with a lot of the
night stuff that goes on around

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here we\'re only reasonably
GridView everyday

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123 Matthew

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was vibrant

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and healthy and he had developed so

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normally it wasn\'t like I had any
thought that there was something

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seriously wrong with him
that day I took him to

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the doctor I acted to
be told that there was

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a sensory integration problem
that there was something it

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never occurred to me that I would
find out that he was terminally ill.

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I am really grateful that
I had those for six years

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without that knowledge
I\'m glad I didn\'t know

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what I would say that at

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that point in in a lot of ways Matthew
did actually die that morning or

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that afternoon and since
that time we\'ve had

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to reintroduce myself to a
different child and and

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a different life in

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a different expectation y y.

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Any law As mapView

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is gotten older he\'s got to the point where
he had almost no physical abilities.

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It\'s very difficult to
separate the thing that

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you hate the most in the world existing
within the thing that you love

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the most in the world when he was little we
used to have a punching bag that we called

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muscular dystrophy that instead of taking

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our anger or frustration out on each other

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we would try to take it
out on the punching bag.

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As he\'s gotten older you can more clearly

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identify that this really
hurts or I really miss that

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And I didn\'t get to do this or I
really wish this wasn\'t happening

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to me so you really get up to

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two years ago the night before Matthews
birthday I was transferred Linda

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bad and I fractured root
zones in one of his legs

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and when I did that I realized by
couldn\'t no longer take care of him but

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myself and thanks to the orthopedic
surgeon who set his leg.

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He was able to help us get the
help that we\'ve needed through

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Medicaid One part that today

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this disease wasn\'t a pap
major a major loss that was

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about one little tiny loss after
another there were about 35 losses

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before Matthew actually equip

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walking and was the not being
able to bump stairs there was the

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not being able to stay flat on its
feet the actual watching of the

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lost what was very long and there was just

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one continuous long after
another in that ability.

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Before you He lost it right

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now it\'s just little things
you know it\'s it\'s watching

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her struggle to feed
himself his inability to

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write more than his name and have that
take him on with ten minutes just to write

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his name a simple task
that that he could have

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done easily a few years ago he
can\'t he can\'t do that anymore.

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Hmm on Elvis One of the
most difficult things about

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the daily care of Matthew is that he feels
everything he\'s almost ultrasensitive.

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He\'s got osteoporosis.

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Which makes his bones brutal they break

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easily and so what we have to be
real careful with his body or he

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does endorse a lot of pain the
disease is taken on a point

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where it\'s really starting to deform
the body you can see as Peter.

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Are way too small and never grew
because he never stood on with enough.

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His toes overlap.

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It\'s not an infection in his toes.

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When Matthew was diagnosed I
actually sat down with him and I To

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him what was wrong and why I was having

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such a hard time and why I was so sad and

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let use first question to me
was it like in a die from

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this My response to him was that yeah that
he probably was gonna die from it but that

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none of us knows for sure one we\'re going to
die and that that was a long way away and

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sometimes thinking about death

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but we can\'t let that bother you
because the truth is you don\'t know.

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I think there are times where you could
you could save your life my dad.

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Smart but some of those cases you can\'t

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avoid you\'ll have entered into a great.

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I think we look at life differently.

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I think that it\'s about Seeking
out moment and it\'s always.

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Only about any given moment if I\'m

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doing something that\'s really hard
for me to do or hard for me to cope

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with we will make a job we
will do something to change

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how that moment fields but one
thing that we do is humor

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that would be the major thing that we laugh
at things that aren\'t funny and and make

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T thing a real way of life Matthew has
an open wound at the top of his rectum.

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It\'s about Two inches long and
about a quarter of an inch

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deep and it reopened all
the time it\'s ugly it\'s

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awful it\'s painful and we call it his third

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I heard the new data that chili peppers.

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Now a lot of people did this task before

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me and then leave anything behind.

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Then leave their story about how they did

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it I looked and looked and
looked A book about how to do

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this and are lots and
lots of books written by

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parents after their children die
and there\'s always this level

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I\'m so glad I had this opportunity

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or we feel really blessed that
having had this opportunity

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that\'s really nice as far
as like being able to see

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okay yeah I can survive past
this but I\'ve yet to see

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anything about just the nitty gritty
day-to-day I\'m so tired I can\'t

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move I am in so much pain I
can\'t breathe I don\'t want

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to do this with every inch of
your body telling you I don\'t

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want to do this today and knowing
that there\'s nowhere to run.

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We\'ve had lots of help
from friends and family

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and and if it hadn\'t been
for that I think we would

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probably be homeless or in some kind of

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shelter situation because
there is no system setup

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for the physically disabled child who
is not also multiply handed count.

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There is non-assistive milk there for them

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The technology of the world is that math
you could have all kinds of options

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available to him but there
is no money to pay for

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those options and that no system regards

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quality of life as an issue there though

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I want a kid symptom or people
in general think I\'m retarded.

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Because I\'m in a wheelchair
but a beggar and he taught.

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His idea they probably saw way
or a way that he isn\'t dome.

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He knows a lot more Arduino\'s
lot more neat looks like

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he knew what told people
to wear one retreat.

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Like a human being with 16-year-old in my.

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I want people to talk to me
this much you with somebody

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else but oh it\'s a taut because
But it\'s especially girls.

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They would pass me for some reassurance.

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They probably think I like
rock music the way address and

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stuff but I showed them
I liked what they like

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even though I\'m in a wheelchair
I liked the same things

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with a bar on dress and say
find the same kind of first

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One of the things that\'s important
for me for my fuel and Marie

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is that the next student or

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the next boy to go through
the school district

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or another child or an adult
in this neighborhood.

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Not have to go and fight the
exact same battles that he

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did that we would be passed
that could freely move or have

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access to his own
neighborhood as he\'s gotten

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older and I\'m able to sort of see
what some of my parenting skills

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did it makes me very sad that I will know him
as an adult men I won\'t Get that reward of

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knowing what I did right and how you

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meet a human being he would become
phi died we want to eat but

00:14:15.505 --> 00:14:19.868
he said I don\'t want heavy metal coins

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at my few minutes.

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Literally Jacqueline Hi this is you know

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the sweetest most affectionate
child I\'ve ever seen and in

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this other person and he becomes
doesn\'t even really know who I

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am Reading

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no waiting I naught snow

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lose our family consists of three
and Alan and align myself and

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Ellen and I were both professional
couple both CPAs and then we had

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Eli and He Lie had problems Since he was
born Eli spin diagnosed with autism.

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He also have about 14
or 15 other diagnoses.

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Which include things like eating

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disorder and he has he\'s missing
two of his digestive enzymes.

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The list is pretty endless
he has a sleep disorder.

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So in most of the things that we take for

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granted the things like eating
and sleeping and being able to

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eliminate waste and things like
that those are the things he

00:16:01.249 --> 00:16:04.669
has trouble with and now
he\'s seven and we\'re still

00:16:04.670 --> 00:16:09.468
working on his health issues and he\'s
stymied every medical Specialist in

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the Denver Metro area and that consumes

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our life the whole bedroom around

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his bed as padded with four-inch thick
padding for up to the ceiling and we\'ve

00:16:24.290 --> 00:16:26.808
put rails on there and
padded that bought furniture

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that was all padding so if you
did try to slam his head into

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the wall or to the bed that it
was all padded the nurses and

00:16:33.289 --> 00:16:37.249
L and a nice log a lot of hours
in that bed with him trying to

00:16:37.250 --> 00:16:43.098
get him comfortable and prevent him
from hurting himself is sleep patterns

00:16:43.099 --> 00:16:46.069
they they keep changing he went
to bed at nine last night got

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up at 345 so that happens online.

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Often still Because of you
lives sensitive hearing

00:16:53.090 --> 00:16:59.553
and his problems we spent a lot
of time in complete silence and

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that is incredibly difficult you can\'t
even express yourself because it will

00:17:07.234 --> 00:17:11.419
irritate your son and
he fell even think it\'d

00:17:11.420 --> 00:17:16.263
be difficult for anyone to imagine
this particular type of life.

00:17:16.264 --> 00:17:21.034
Although I would say it
has parallels to maybe.

00:17:21.035 --> 00:17:26.849
Leaving the secular world and
going to join a monastery.

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We can play puzzle. Or cookies.

00:17:30.425 --> 00:17:38.425
What do you want What

00:17:38.620 --> 00:17:45.329
the monkey okay this plate them on
your scope with the market Houston.

00:17:47.340 --> 00:17:50.409
Generally when their
self-injurious behaviors there

00:17:50.410 --> 00:17:53.709
for tension or because
there\'s difficulty with

00:17:53.710 --> 00:18:01.710
communication pieces with Eli

00:18:02.259 --> 00:18:06.428
we it\'s very difficult to
single out when he does to

00:18:06.429 --> 00:18:12.049
himself as a result of being in pain
or if it\'s because he\'s frustrated.

00:18:13.830 --> 00:18:19.069
One of the things With the traditional
medical community is that they

00:18:19.070 --> 00:18:23.719
would see the word autism and that
would be the behaviors would be

00:18:23.720 --> 00:18:27.154
considered strictly related to
the fact that he had autism

00:18:27.155 --> 00:18:31.860
and we knew that he was in pain

00:18:35.530 --> 00:18:41.089
we were dismissed by a pediatric
gastroenterologist who

00:18:41.090 --> 00:18:46.399
essentially said Get over it
or get used to it it took me I

00:18:46.400 --> 00:18:49.368
don\'t know eight months to
get up the gumption to go to

00:18:49.369 --> 00:18:55.338
a second pediatric gastroenterologists who
only spent five minutes examining Eli and

00:18:55.339 --> 00:18:58.804
could readily Ascertained
that he was missing

00:18:58.805 --> 00:19:04.909
at least one digestive enzyme and when they
did a biopsy found out that he was missing or

00:19:04.910 --> 00:19:08.149
extremely deficient in two
of the digestive enzymes

00:19:08.150 --> 00:19:11.779
that you need to digest sugar and
that this in conjunction with

00:19:11.780 --> 00:19:16.923
severe constipation was causing him
excruciating agony and that it was all real

00:19:16.924 --> 00:19:23.958
and that other people hadn\'t given
UI that kind of consideration.

00:19:23.959 --> 00:19:28.594
They were confused they were confused
about the fact that he had autism.

00:19:28.595 --> 00:19:33.919
Which does play a role in this but
it\'s not the exclusive cause of

00:19:33.920 --> 00:19:38.734
the problem what up today
we talk a little bit about

00:19:38.735 --> 00:19:44.404
Some of the needs that Eli has in order to
stay at home and some of those will be.

00:19:44.405 --> 00:19:47.839
Obviously things like
having a mom and dad I feel

00:19:47.840 --> 00:19:51.138
the head of elides team is
most definitely his family.

00:19:51.139 --> 00:19:55.998
His parents and most specifically
his mom I think it\'s evolved out of

00:19:55.999 --> 00:20:01.099
necessity necessity because
no one can care like

00:20:01.100 --> 00:20:09.079
a parent can the things that Eli needs is Betty
has said many times are not luxuries but

00:20:09.080 --> 00:20:13.069
necessities for them to stay
together as a family when

00:20:13.070 --> 00:20:17.523
he\'s in pain his adrenaline makes them
so strong that it takes to people.

00:20:17.524 --> 00:20:20.149
So Alan and I even when we get

00:20:20.150 --> 00:20:26.178
Um help assistance we get one person and
that means that one of us we never spend

00:20:26.179 --> 00:20:29.329
time alone together anymore like we used

00:20:29.330 --> 00:20:32.508
to go out every Saturday night on
a date that was something that I

00:20:32.509 --> 00:20:35.209
made him do that but we can\'t do

00:20:35.210 --> 00:20:38.179
that anymore one or the other of
the testicle out because if he has

00:20:38.180 --> 00:20:42.678
an episode mean he one of his
nurses is six foot one and weighs

00:20:42.679 --> 00:20:47.179
190 and he knocked him
out cold and he can\'t be

00:20:47.180 --> 00:20:50.898
here with somebody who\'s out cold
the parent is the lead person

00:20:50.899 --> 00:20:55.129
and that\'s a very difficult role to
assume because nobody wants you to have

00:20:55.130 --> 00:21:00.139
that role they do want to feel that
they are the professionals that they

00:21:00.140 --> 00:21:05.914
do know what they\'re doing but if
If you don\'t take charge then.

00:21:05.915 --> 00:21:09.229
Time is wasted and time is
lost while people are fumbling

00:21:09.230 --> 00:21:12.799
around this is not about people\'s egos.

00:21:12.800 --> 00:21:16.158
This is about a child who\'s
suffering this is about

00:21:16.159 --> 00:21:20.149
a child who needs to recover
and I\'m the one who can

00:21:20.150 --> 00:21:24.424
coordinate I\'m the one
who is interfaced with

00:21:24.425 --> 00:21:29.554
all the medical people with all of the private
therapy team with his educational team.

00:21:29.555 --> 00:21:32.959
I\'m the one who\'s there and I\'m the
one who\'s going to be there for

00:21:32.960 --> 00:21:39.558
now and the future It\'s very

00:21:39.559 --> 00:21:43.593
important that people
support me in that role

00:21:43.594 --> 00:21:48.108
but parents originally there so
afraid they want somebody to assume

00:21:48.109 --> 00:21:53.478
the leadership roles and people are
really happy to extend that out

00:21:53.479 --> 00:21:56.268
there that they I can handle
this this is what I do

00:21:56.269 --> 00:21:59.298
I\'ve worked with thousands of
children with the label of autism.

00:21:59.299 --> 00:22:03.333
I\'ve worked with this I can do this and
we\'ll handle this for you don\'t you worry.

00:22:03.334 --> 00:22:07.444
But that\'s not the reality
and a parent has to

00:22:07.445 --> 00:22:12.348
not give that power away and has to
be respected for keeping that power

00:22:12.349 --> 00:22:15.109
and a parent also has to learn how to grow

00:22:15.110 --> 00:22:17.779
into that role because they
didn\'t Ever plan on having

00:22:17.780 --> 00:22:22.488
it if you\'re in

00:22:22.489 --> 00:22:28.833
a service provider rule I feel it\'s so important
to learn how to behave without judgment.

00:22:28.834 --> 00:22:32.344
I think the best way to do
that is to walk the walk.

00:22:32.345 --> 00:22:36.738
Provide respite services for the
families who deal where they need

00:22:36.739 --> 00:22:42.604
you desperately and it\'ll be a learning
experience that\'ll take you out of yourself.

00:22:42.605 --> 00:22:46.638
We need to be able to serve each other
without judgment and that\'s very

00:22:46.639 --> 00:22:51.063
hard because I\'m a very
judgmental person myself Eli

00:22:51.064 --> 00:22:53.029
doesn\'t understand safety
issues and once on

00:22:53.030 --> 00:22:56.898
a playground a mother watched me
hovering over him while he was teetering

00:22:56.899 --> 00:22:59.269
up on the top of the slide And she

00:22:59.270 --> 00:23:02.028
came and took it upon herself to come
over and say you know you\'re the

00:23:02.029 --> 00:23:04.503
most over protective person I\'ve ever seen

00:23:04.504 --> 00:23:07.593
and I tell you the most
judgmental person I\'ve ever seen.

00:23:07.594 --> 00:23:09.348
She knew nothing about what I was actually

00:23:09.349 --> 00:23:11.688
facing because he lie
looks like a typical kid.

00:23:11.689 --> 00:23:16.218
We find ourselves offering our judgments
to people when when that\'s not

00:23:16.219 --> 00:23:23.464
really what\'s needed what\'s needed
is either support consideration.

00:23:23.465 --> 00:23:28.639
Even if we don\'t want to give it
the other thing that\'s hard is

00:23:28.640 --> 00:23:34.113
is to lose it is to lose it it\'s it\'s some

00:23:34.114 --> 00:23:38.509
mortifying personally I may
be here home alone but I can

00:23:38.510 --> 00:23:43.029
feel myself losing it and That
I need a break and I need

00:23:43.030 --> 00:23:44.498
a vacation and I can\'t have

00:23:44.499 --> 00:23:48.908
one support people they need to
assess how could apparent get into

00:23:48.909 --> 00:23:52.598
an abusive situation children with disabilities
especially those that aren\'t able to

00:23:52.599 --> 00:23:57.189
speak for themselves are the
highest risk of being abused.

00:23:57.190 --> 00:24:03.038
Plus if you add the stress of the situation
like ours on top of that it\'s real possible

00:24:03.039 --> 00:24:05.589
that abuse could occur people need to say

00:24:05.590 --> 00:24:08.933
what can I do to make certain
that this child is safe.

00:24:08.934 --> 00:24:11.708
There is no more
institutionalization for children

00:24:11.709 --> 00:24:14.769
like these with a point is
they need to stay at home but

00:24:14.770 --> 00:24:22.179
that home needs to be supported properly so
that if you use does not occur even though

00:24:22.180 --> 00:24:25.638
we have all the support Get
from private insurance and

00:24:25.639 --> 00:24:30.109
Medicaid waiver program and
some public funding agencies.

00:24:30.110 --> 00:24:38.110
We still have 20 to $30 thousand in
out-of-pocket costs here Alan wasn\'t employed.

00:24:38.359 --> 00:24:41.898
We would have to reduce
ourselves to poverty level in

00:24:41.899 --> 00:24:45.409
order to qualify for SSI so that
we could continue with Medicaid.

00:24:45.410 --> 00:24:47.868
That people who get stuffed a lot are

00:24:47.869 --> 00:24:51.649
the middle-class because you make
too much money to qualify for

00:24:51.650 --> 00:24:55.429
some programs but it\'s so expensive to keep

00:24:55.430 --> 00:25:00.199
a childlike Eli at home that
there\'s a lot of sacrifice.

00:25:00.200 --> 00:25:03.018
I\'m an optimistic person I\'m I\'m looking at

00:25:03.019 --> 00:25:06.739
an optimistic future I don\'t think it\'s
always going to be like this I think

00:25:06.740 --> 00:25:10.819
UI\'s going to in one way
or another he\'s going to

00:25:10.820 --> 00:25:16.920
come out in the sun and the quality of
our lives can improve dramatically.

00:25:20.590 --> 00:25:25.563
I would never have chosen this life couldn\'t
have conceived of having this life.

00:25:25.564 --> 00:25:28.759
I\'m very grateful to whatever versus that

00:25:28.760 --> 00:25:33.889
be that this happened to me in the fact
that it broadened me out of being.

00:25:33.890 --> 00:25:38.989
I think having an insignificant life
having a life that was consumed with

00:25:38.990 --> 00:25:44.193
things that really aren\'t a priority
don\'t really matter and so.

00:25:44.194 --> 00:25:52.080
Although I wouldn\'t have chosen it it
certainly On a better direction in my heart.

00:25:55.150 --> 00:25:59.988
Well red font is 16 now so
when she became a teenager.

00:25:59.989 --> 00:26:07.680
I was just so up here on debt there were
things that were just not right with red font.

00:26:08.050 --> 00:26:14.884
I really didn\'t know how to deal with it
and I felt like I was humming abusive with

00:26:14.885 --> 00:26:19.549
her because I I try to control

00:26:19.550 --> 00:26:26.039
the situation and I couldn\'t use
my MBA Defoe and intelligent

00:26:35.670 --> 00:26:43.670
I know. I needed

00:26:45.699 --> 00:26:48.399
some more peaceful environment and

00:26:48.400 --> 00:26:53.719
also we just needed to make a move
to change our lives a little bit.

00:26:53.880 --> 00:26:58.629
This is a picture we worked
with to help us get on we have

00:26:58.630 --> 00:27:02.439
a lot of work to do yet
it took a lot of time and

00:27:02.440 --> 00:27:05.468
effort in a lot of work to get into

00:27:05.469 --> 00:27:08.828
this health is withdrawal determined
to get away from that neighborhood

00:27:08.829 --> 00:27:12.128
the entire neighborhood is
surrounded by all the games

00:27:12.129 --> 00:27:17.538
in My daughters are
influenced to be a part of

00:27:17.539 --> 00:27:25.020
that longest favorite place

00:27:27.580 --> 00:27:35.580
I have four children the two older ones
are 2426 years old and then I have

00:27:35.900 --> 00:27:39.948
two teenage daughters
that are 1516 years old

00:27:39.949 --> 00:27:45.693
and their aunt Doris is staying with us right
now when read one was three months old.

00:27:45.694 --> 00:27:48.918
I adopted her from my cousin

00:27:48.919 --> 00:27:55.848
And I\'ve had her since then from the
very beginning respond had problems like

00:27:55.849 --> 00:28:03.849
her digestive system was completely formed
and she had a severe allergy to milk which

00:28:04.249 --> 00:28:12.249
nobody had found until she was three
months old and she was very very small.

00:28:15.670 --> 00:28:19.819
Her biological mother drink off and on.

00:28:19.820 --> 00:28:23.959
During her pregnancy the doctors
have told us that it did in

00:28:23.960 --> 00:28:28.448
fact have something to do with
the development of the fetus.

00:28:28.449 --> 00:28:33.619
It he didn\'t he couldn\'t tell us When
she was a baby how it would affect her.

00:28:33.620 --> 00:28:41.620
Later development but he told us that you know
to be prepared for behavioral problems not

00:28:43.549 --> 00:28:46.893
having the proper nourishment in

00:28:46.894 --> 00:28:53.299
not just physical nourishment but emotional
nourishment as well it it had a lot to do

00:28:53.300 --> 00:28:56.279
with red phone behavior

00:28:59.530 --> 00:29:04.819
there are certain things that are not
affected like with funds learning ability.

00:29:04.820 --> 00:29:07.669
She\'s very very bright and she has.

00:29:07.670 --> 00:29:15.670
She\'s she has so many gifts But
the areas that she short in are

00:29:16.030 --> 00:29:18.789
the things that people can\'t see she has

00:29:18.790 --> 00:29:21.669
attention deficit disorder
syndrome nothing is

00:29:21.670 --> 00:29:25.074
very relevant for her
for any length of time.

00:29:25.075 --> 00:29:30.339
She\'s not able to really control
her anger and her temper and she\'s

00:29:30.340 --> 00:29:35.614
been to the anger management classes in and

00:29:35.615 --> 00:29:40.419
everything is all right
for a little while but I

00:29:40.420 --> 00:29:45.249
think she was capable of changing
her behavior she would she felt

00:29:45.250 --> 00:29:47.499
really bad that it causes
a lot of problem for

00:29:47.500 --> 00:29:50.889
everybody and I think that she would if she

00:29:50.890 --> 00:29:57.754
could but she can\'t I don\'t
care Really mad row row quick.

00:29:57.755 --> 00:30:04.208
But if I\'m in a bad mood
then I\'ll go off real quick.

00:30:04.209 --> 00:30:08.134
If I mainland goodwill
then it would take awhile.

00:30:08.135 --> 00:30:12.274
That\'s one of the really troubling things
about red faunas that she\'ll be all right.

00:30:12.275 --> 00:30:15.784
But when she gets frustrated. There\'s no.

00:30:15.785 --> 00:30:21.019
Switching gears It\'s just from
one extreme to another it can

00:30:21.020 --> 00:30:25.909
just snap a onetime I my mom
put basket of clothes on

00:30:25.910 --> 00:30:33.910
my desk and I thought she lost my diamond
hearing and often to my TV and everything

00:30:34.565 --> 00:30:42.559
diverting on floor And she called
the cops read Kuan has been at

00:30:42.560 --> 00:30:46.129
the courts probably on

00:30:46.130 --> 00:30:52.594
20 different cases and the majority of the
cases or for fighting in disturbance.

00:30:52.595 --> 00:30:56.688
The teachers that are always saying
that they\'re afraid of her and that to

00:30:56.689 --> 00:31:01.113
own the other kids are afraid
of her when she gets angry.

00:31:01.114 --> 00:31:09.114
She\'s a little tiny girl and she weighs
95 pounds but when she gets angry

00:31:09.544 --> 00:31:17.544
she\'s a rule dynamic little powerhouse in
Xi She has heard other children you know.

00:31:18.710 --> 00:31:24.108
She has broken their noses and
she\'s hurt them you know a very.

00:31:24.109 --> 00:31:32.109
Again troubled and I\'ll go to jail for
a long time everybody talks about

00:31:32.329 --> 00:31:36.540
social services and violence prevention

00:31:36.580 --> 00:31:42.018
in all the problems that all the youths
are having but there really isn\'t any

00:31:42.019 --> 00:31:47.149
any Buddy healthier to really actually
work with a child like red phone.

00:31:47.150 --> 00:31:48.589
She has been dismissed from

00:31:48.590 --> 00:31:54.919
every single school day treatment program
she went away from the psychiatric ward.

00:31:54.920 --> 00:31:58.668
I wanted her to Be in some kind of

00:31:58.669 --> 00:32:02.763
a treatment program and to get the
counseling and the help that she needed.

00:32:02.764 --> 00:32:06.618
While she was still a juvenile
because I know that when she turns

00:32:06.619 --> 00:32:13.383
18 years old and she acts out with his
behavior she\'s going to end up in prison.

00:32:13.384 --> 00:32:19.189
When they I got crazy idea that
I would take my car for arrive.

00:32:19.190 --> 00:32:23.059
I stole it we had to go to court
and she was put on probation

00:32:23.060 --> 00:32:26.509
as a result of that she\'s
on a home detection

00:32:26.510 --> 00:32:29.358
for about maybe six months so hooked up to

00:32:29.359 --> 00:32:33.694
the phone and it determines that
she\'s home at a certain time

00:32:33.695 --> 00:32:37.729
everybody always tells me that I
look like a 100 pages touched

00:32:37.730 --> 00:32:42.424
my ankle It\'s sort of a pager.

00:32:42.425 --> 00:32:46.219
If I knew what would helper I would
have done it a long time ago we

00:32:46.220 --> 00:32:49.939
have done in exhausted
as many things as we can

00:32:49.940 --> 00:32:57.844
think of we pray for her we had
ceremonies and largest or her we\'ve done

00:32:57.845 --> 00:33:02.239
those kind of spiritual themes
that we know how to do they

00:33:02.240 --> 00:33:07.324
say that the children like
her that have the AD DS.

00:33:07.325 --> 00:33:11.719
That if they can be in a very
controlled environment that they do

00:33:11.720 --> 00:33:17.328
better but we don\'t we don\'t
live that lifestyle we live

00:33:17.329 --> 00:33:21.138
a more traditional lifestyle
or retried too And

00:33:21.139 --> 00:33:25.668
then they go back into the main
stream and everything they learn

00:33:25.669 --> 00:33:33.434
there is in contrast to what they learn
at home another feet where she have

00:33:33.435 --> 00:33:38.328
tiniest alcohol is one
of the worst problems

00:33:38.329 --> 00:33:43.458
we have I think what happened to the Indian
is they weren\'t they took their spirit

00:33:43.459 --> 00:33:46.099
away from them they took
their religion away from

00:33:46.100 --> 00:33:48.889
them they took the food away
from them that they were

00:33:48.890 --> 00:33:54.754
used to having and so they they go to
alcohol or they go to something stronger.

00:33:54.755 --> 00:33:59.629
But I know it\'s because their
heart and their mind and

00:33:59.630 --> 00:34:04.638
their religion and everything was
taken away from them and Then

00:34:04.639 --> 00:34:07.729
the soul has lost almost

00:34:07.730 --> 00:34:11.959
gone the reason the alcohol doesn\'t
have such a prevalence in our family

00:34:11.960 --> 00:34:15.709
is is because my mother didn\'t
drink and my grandmother didn\'t

00:34:15.710 --> 00:34:20.178
drink I\'d I don\'t drink and I tried
to pass that down to my daughters.

00:34:20.179 --> 00:34:22.864
If everybody in the family drink then

00:34:22.865 --> 00:34:26.328
the children are more likely to drink
and their babies are more likely to be

00:34:26.329 --> 00:34:31.789
affected the only way to break
that cycle is to stop it

00:34:31.790 --> 00:34:34.908
altogether stop the the
things that are going to

00:34:34.909 --> 00:34:38.523
affect our children because
the damage is irreversible.

00:34:38.524 --> 00:34:40.789
These kids know that already
you know they\'re they\'re

00:34:40.790 --> 00:34:43.548
only teenagers and they
know they know everything

00:34:43.549 --> 00:34:46.968
already And we didn\'t know that when we
were teenagers we didn\'t know that we

00:34:46.969 --> 00:34:50.943
weren\'t going up when he didn\'t know that when
she was growing up but she knows that no.

00:34:50.944 --> 00:34:56.523
Now I see what she\'s talking about and
now I. I understand and i hate it and

00:34:56.524 --> 00:35:02.554
I don\'t want to raise my kids
you know there is hope for her.

00:35:02.555 --> 00:35:07.039
But you\'ve got to want to be
able to do it you can\'t expect

00:35:07.040 --> 00:35:11.689
somebody else to make the grade for you and

00:35:11.690 --> 00:35:15.258
what I was telling her about
healing yourself you do have to

00:35:15.259 --> 00:35:19.068
work with your doctors in your
trainers and everything but

00:35:19.069 --> 00:35:23.718
in the meantime you take your arms
and your hands and put them around

00:35:23.719 --> 00:35:28.624
your head and you can feel A vibration

00:35:28.625 --> 00:35:31.369
whatever\'s bothering you or
whatever is hurting you you

00:35:31.370 --> 00:35:34.519
take them and you offer him
up and take them away from

00:35:34.520 --> 00:35:36.994
your body and throw him
up and say I am what

00:35:36.995 --> 00:35:40.459
my power of healing to heal
myself grandfather please give

00:35:40.460 --> 00:35:43.339
me that power you find that eventually get

00:35:43.340 --> 00:35:46.458
it if you work at it long
enough I would just like for

00:35:46.459 --> 00:35:49.428
understanding from a non-Indian people and

00:35:49.429 --> 00:35:53.449
people in social services and people who are
teaching our children and people who are

00:35:53.450 --> 00:35:56.463
administering programs to
our children you know to

00:35:56.464 --> 00:35:59.929
have a better understanding
of why things are the way

00:35:59.930 --> 00:36:01.608
they are and you know we still have

00:36:01.609 --> 00:36:06.829
the highest infant mortality are
people Have a least longevity.

00:36:06.830 --> 00:36:10.039
He can\'t get well by ourselves
we have to deal with

00:36:10.040 --> 00:36:13.488
social services we have to send
our children to public schools we

00:36:13.489 --> 00:36:16.968
have to live within the
society you know if there was

00:36:16.969 --> 00:36:20.643
a way that we could go
away and heal ourselves we

00:36:20.644 --> 00:36:23.448
would do that we would choose to do

00:36:23.449 --> 00:36:27.109
that but it isn\'t possible we
have to be here and we have to do

00:36:27.110 --> 00:36:35.110
the best we can with whatever there
is here we will find placement

00:36:36.950 --> 00:36:41.809
for Nathan if it\'s not through the state and
we will find something we will we will have

00:36:41.810 --> 00:36:47.013
to work out something with With another
family maybe draw up a contract or Nathan.

00:36:47.014 --> 00:36:50.973
Is that their home during the
week and he\'s home on weekends.

00:36:50.974 --> 00:36:58.919
We\'ll find something for an eighth and
because I will find something for Nathan.

00:37:04.240 --> 00:37:09.228
Most tiny Barry and I have been married.

00:37:09.229 --> 00:37:14.029
Almost 25 years it\'ll be
25-years in July and I

00:37:14.030 --> 00:37:18.994
have an older son he\'s 21 his name
is Gary Charles and he\'s married

00:37:18.995 --> 00:37:26.995
and then we have Nathan who
just turned 17 years old Yeah

00:37:33.610 --> 00:37:41.610
okay good jack Nathan was diagnosed at
approximately 2.5 years old with cerebral palsy he

00:37:43.715 --> 00:37:47.509
myoclonic that means he
has low muscle tone and

00:37:47.510 --> 00:37:53.658
so he just would like wet noodles
or spaghetti he just would flop

00:37:53.659 --> 00:37:57.528
all over him had a hard time
sitting up and holding his head

00:37:57.529 --> 00:38:01.819
up and standing or doing anything
because of his low muscle tone and

00:38:01.820 --> 00:38:05.224
then of course he he\'s also
being diagnosed with multiples

00:38:05.225 --> 00:38:09.738
Yours and mental retardation
also if you want

00:38:09.739 --> 00:38:17.739
this one up here. you get your other Hannah I
remember finding out about Nathan and I felt

00:38:19.460 --> 00:38:24.199
physically I actually felt
my heartbreaking I I I can

00:38:24.200 --> 00:38:28.909
say that I felt physical pain when I\'ve went
someone came in the room and told me you

00:38:28.910 --> 00:38:33.618
know Nathan\'s going to be handicap
et cetera and and so I think in

00:38:33.619 --> 00:38:38.689
that as always that little bit that
chronic sorrow there that that no matter

00:38:38.690 --> 00:38:41.599
what you do no matter how hard you try to

00:38:41.600 --> 00:38:45.409
accept even when you do accept and
you feel good about your life

00:38:45.410 --> 00:38:48.168
and you\'re happy and you
can go on There\'s still

00:38:48.169 --> 00:38:52.414
that little bit of sorrow and
regret against that things aren\'t.

00:38:52.415 --> 00:38:58.860
What they could have been Jack.

00:39:00.400 --> 00:39:04.654
I think one of the key
things for me was the fix-it

00:39:04.655 --> 00:39:08.689
person in the family in order
to make something wasn\'t right

00:39:08.690 --> 00:39:12.529
that I\'d go off and try to
find the right resources

00:39:12.530 --> 00:39:16.369
if you want and get it fixed
a whole does happen if you

00:39:16.370 --> 00:39:18.318
tried to find different
doctors tried to find

00:39:18.319 --> 00:39:23.418
different Cures and if you want
you know most men I talked to you

00:39:23.419 --> 00:39:26.358
that\'s again there that
the leader of the family

00:39:26.359 --> 00:39:31.014
the breadwinner and once again when something\'s
wrong it\'s their job to make it right.

00:39:31.015 --> 00:39:34.308
And it faced. Unfortunately
though when it comes

00:39:34.309 --> 00:39:38.809
to families with kids with
developmental disabilities.

00:39:38.810 --> 00:39:43.729
When the father can\'t fix
it they take it personal.

00:39:43.730 --> 00:39:46.939
Okay and that\'s why I
think part of what you\'re

00:39:46.940 --> 00:39:50.329
obviously a lot of single parents
and usually again the mother.

00:39:50.330 --> 00:39:53.643
Because the father just
can\'t deal with it anymore

00:39:53.644 --> 00:39:57.138
not maybe not so much not dealing
with a particular child but can\'t

00:39:57.139 --> 00:40:03.499
deal with the fact that
he failed Junior walker

00:40:03.500 --> 00:40:10.624
OK. Say that Nathan\'s care
involves 24-hour monitoring.

00:40:10.625 --> 00:40:14.418
He is not toilet trained and he needs

00:40:14.419 --> 00:40:18.619
constant monitoring he needs
people by him because he will fall

00:40:18.620 --> 00:40:22.139
he\'ll trip and fall he\'s
broken his job he\'s not

00:40:22.140 --> 00:40:27.353
disparate tooth out just my fall in it you
know when he\'s walking with his walker.

00:40:27.354 --> 00:40:33.784
And started about I guess maybe
four years ago having in-home help.

00:40:33.785 --> 00:40:37.158
Up until that point all
the care I\'d say was

00:40:37.159 --> 00:40:43.339
mine I used to give Nathan
his baths and and that was

00:40:43.340 --> 00:40:48.228
Very difficult on my back also
so after a while I just could

00:40:48.229 --> 00:40:52.489
not even give him a bath and
so then my husband took

00:40:52.490 --> 00:40:56.179
over the duties of bathing
him giving him a shower in

00:40:56.180 --> 00:40:59.988
the morning and helping dress
but up until then I was

00:40:59.989 --> 00:41:07.989
responsible for all of his care we
were just like any other young couple.

00:41:08.509 --> 00:41:11.103
In fact when we picked out Nathan\'s name.

00:41:11.104 --> 00:41:16.099
We\'ve spent a lot of time doing
that because Nathan Alexander.

00:41:16.100 --> 00:41:19.098
We pick that a name that would be good
for president we we said that each

00:41:19.099 --> 00:41:23.043
other and then when he was born you know.

00:41:23.044 --> 00:41:25.909
I\'d say you can do as good
as Java someone but And

00:41:25.910 --> 00:41:30.393
time is certainly not
going to be President.

00:41:30.394 --> 00:41:34.849
So it\'s our dream child if you want that on

00:41:34.850 --> 00:41:38.868
net they died because he\'s
not going to be able to do

00:41:38.869 --> 00:41:42.619
the things that we wanted
the hardest part for me

00:41:42.620 --> 00:41:46.983
having a child with a disability
is first off the acceptance.

00:41:46.984 --> 00:41:49.173
That\'s been That was tough.

00:41:49.174 --> 00:41:51.424
Since now I accepted my guess.

00:41:51.425 --> 00:41:54.889
Now I\'m looking for other people
to accept the integration in

00:41:54.890 --> 00:42:00.094
school that\'s one of my big things
is to get him into regular classes

00:42:00.095 --> 00:42:06.154
in some teachers can understand why
would want him in A history class

00:42:06.155 --> 00:42:13.574
or a science class and this is well what\'s
he going to learn while he\'s in there.

00:42:13.575 --> 00:42:18.979
So the knock-in math it\'s not going
to learn is 123 so you know.

00:42:18.980 --> 00:42:20.733
But at the same time I don\'t.

00:42:20.734 --> 00:42:23.569
He\'s gonna learn when it\'s
appropriate to be quiet.

00:42:23.570 --> 00:42:25.519
He\'s got his own goals and he\'s

00:42:25.520 --> 00:42:33.520
the worker circled type tails

00:42:35.060 --> 00:42:38.850
presents the easy we\'ll see spider.

00:42:39.220 --> 00:42:42.959
Down came the rain

00:42:51.370 --> 00:42:56.433
About four years ago my
oldest son he\'s 21 now

00:42:56.434 --> 00:43:01.578
move moved off to college I think
maybe that was the start of it for me

00:43:01.579 --> 00:43:04.128
was for me to start thinking about

00:43:04.129 --> 00:43:08.269
that I was feeling even before
Nathan turned 18 it was time for

00:43:08.270 --> 00:43:12.829
him to move on to that I\'ve
given 14 or 15 years of my life

00:43:12.830 --> 00:43:18.108
24 hours a day and my
physical stamina to him

00:43:18.109 --> 00:43:21.618
and feeling like it it\'s about
time for him to move on to

00:43:21.619 --> 00:43:25.738
so and that was really
difficult to come to grips

00:43:25.739 --> 00:43:29.629
because I think as a parent It\'s normal

00:43:29.630 --> 00:43:33.739
for an 18-year-old to move out and
go on to college but when a child

00:43:33.740 --> 00:43:37.968
is is has disability and

00:43:37.969 --> 00:43:42.379
a lot of people see you thinking
about them moving out is as you know

00:43:42.380 --> 00:43:45.228
a bad mother or not carrying I was even

00:43:45.229 --> 00:43:49.893
asked a year ago because I moved
out of the home because I was so

00:43:49.894 --> 00:43:52.953
stressed out about Nathan I
was even asked if I loved

00:43:52.954 --> 00:43:56.989
my son and that has nothing
to do with it I mean I moved

00:43:56.990 --> 00:44:00.018
out because I needed to save
my life I can tell Robin

00:44:00.019 --> 00:44:03.078
was having problems okay
with taking care of Nathan

00:44:03.079 --> 00:44:06.949
and with the stress and such before
she ended up in the hospital instead

00:44:06.950 --> 00:44:11.358
things And that\'s again
where my solution to

00:44:11.359 --> 00:44:14.148
it really was to have someone to
come into the home to assist with

00:44:14.149 --> 00:44:19.353
it and her solution was
more so of it had to be

00:44:19.354 --> 00:44:22.548
taken care of him saying you
know use respite care more

00:44:22.549 --> 00:44:26.509
often that sounds easy but
when you look through

00:44:26.510 --> 00:44:30.378
the list and the list says no heavy
lifting everyone has restrictions

00:44:30.379 --> 00:44:35.369
that are not wheelchair accessible nobody
else wants to come over on weekends.

00:44:35.440 --> 00:44:39.394
They don\'t want people that
are aren\'t toilet trained or

00:44:39.395 --> 00:44:43.968
so you\'re limited in some part
of me said you have to do

00:44:43.969 --> 00:44:47.658
this you\'re the mother you
love your child you are

00:44:47.659 --> 00:44:51.648
you\'re responsible when Robin
wasn\'t Well and we were

00:44:51.649 --> 00:44:56.569
having some problems I guess I\'ve
presented a lot the fact that

00:44:56.570 --> 00:45:02.013
I had to an almost make a decision
between my wife and my son.

00:45:02.014 --> 00:45:08.219
A choice and that I did I presented
that paid us back the hardest

00:45:16.750 --> 00:45:21.843
I would have nightmares recurring
nightmares that on my tombstone.

00:45:21.844 --> 00:45:27.164
It was going to read here
lies Robin maintenance mom.

00:45:27.165 --> 00:45:31.339
Yes that\'s all that was
written that lies night and

00:45:31.340 --> 00:45:37.189
Mt And I felt like I was not even alive.

00:45:37.190 --> 00:45:41.598
Before he ended up in the hospital I
recognized that I was going to hurt myself I

00:45:41.599 --> 00:45:43.669
would never hurt Nathan but I sure

00:45:43.670 --> 00:45:46.950
what hurt me because I didn\'t
want to go through this anymore.

00:45:49.330 --> 00:45:53.689
We tried to have respite care
on weekends so they fit would

00:45:53.690 --> 00:45:57.138
be gone and after a while the
weekend recipe cared wasn\'t

00:45:57.139 --> 00:46:01.278
enough it wasn\'t satisfying my need and

00:46:01.279 --> 00:46:05.688
we\'d go pick them up and in the van and
I\'d sit in the fan and cry because

00:46:05.689 --> 00:46:08.478
we had to bring him home I
did not want him to come

00:46:08.479 --> 00:46:11.839
home because I knew it was
can start all over again

00:46:11.840 --> 00:46:14.928
The diapers the feeding the lifting the you

00:46:14.929 --> 00:46:18.344
know that chronic pain
all over again and that

00:46:18.345 --> 00:46:25.428
overwhelming feeling and so finally
my husband and I talked to him about.

00:46:25.429 --> 00:46:29.808
Perhaps you know putting Nathan in foster
care for a few months just to have

00:46:29.809 --> 00:46:34.503
a break into c. What we could
do with our lives and I saw.

00:46:34.504 --> 00:46:38.688
Having Nathan gone as freedom
and basically what it

00:46:38.689 --> 00:46:43.159
came down to was he saw
having Nathan gone as him

00:46:43.160 --> 00:46:46.308
abandoning Nathan placing
Nathan outside of the home

00:46:46.309 --> 00:46:49.758
is something that I\'m still I still
struggle with a little bit and that\'s

00:46:49.759 --> 00:46:53.509
so much that he would be
living someplace ounces or

00:46:53.510 --> 00:46:57.909
so The fact that for me I
need to know he\'s taken care

00:46:57.910 --> 00:47:02.423
of we just had a friend of ours there

00:47:02.424 --> 00:47:05.079
their son died and as a sudden at

00:47:05.080 --> 00:47:08.154
the funeral that the biggest
thing I was wondering about was.

00:47:08.155 --> 00:47:11.830
How\'s he going to check i
in the mixture is okay.

00:47:12.270 --> 00:47:16.779
And that\'s when I think it really
dawned on me that that was

00:47:16.780 --> 00:47:20.918
my real concern not that
he has to live with us but

00:47:20.919 --> 00:47:24.758
I just need to feel comfortable in my own
mind that he\'s being taken care of in

00:47:24.759 --> 00:47:29.018
his knees okay our auctions are minimal.

00:47:29.019 --> 00:47:37.019
Right now with the state financing and when
Nathan is on a waiting list of course And

00:47:39.130 --> 00:47:43.129
he\'s second or third on
the waiting list for

00:47:43.130 --> 00:47:47.599
a group home placement
but many people that are

00:47:47.600 --> 00:47:51.408
moved into group homes are no live for for

00:47:51.409 --> 00:47:55.489
many many years so could be
years and years before Nathan.

00:47:55.490 --> 00:47:57.484
Has a slot open.

00:47:57.485 --> 00:48:01.849
Very frustrating to know that you\'ve
made that decision that conscious

00:48:01.850 --> 00:48:06.453
decision separate and this is
good for your family but so what.

00:48:06.454 --> 00:48:09.648
There\'s no place for him to
go so here he is he\'s he\'s at

00:48:09.649 --> 00:48:17.649
home Loving in respecting

00:48:18.410 --> 00:48:23.209
each individual within the family
for who they are what they are that

00:48:23.210 --> 00:48:28.563
was just so ingrained in me and so that\'s
natural and in dealing with Blair.

00:48:28.564 --> 00:48:35.358
That helped me to accept her for who she is I
don\'t see Blair\'s being an imperfect child.

00:48:35.359 --> 00:48:37.860
Where\'s my sweetie.

00:48:44.500 --> 00:48:52.279
Actually my daughter was my inspiration
for me wisdom Blair is her name and

00:48:52.280 --> 00:49:00.280
she She was born premature and her
development in all areas is delayed.

00:49:00.995 --> 00:49:05.688
Pretty significantly and
because of her I am doing

00:49:05.689 --> 00:49:11.208
we wisdom because holding a
conventional job just didn\'t give me

00:49:11.209 --> 00:49:16.099
the necessary latitude to eye
fields damn top of it play

00:49:16.100 --> 00:49:21.574
a clap your hands If today did
aptly she doesn\'t wanna do it

00:49:21.575 --> 00:49:25.909
layer has the label of
deaf blind because she has

00:49:25.910 --> 00:49:30.439
a degree of vision and hearing
loss she\'s not totally

00:49:30.440 --> 00:49:38.440
deaf or blind but she does have a significant
degree of loss in each area Come on email

00:49:39.320 --> 00:49:46.219
have to Blair\'s introduction

00:49:46.220 --> 00:49:51.814
and to her family was very stressful
and it continues to be stressful.

00:49:51.815 --> 00:49:56.959
It affected all facets and my wife.

00:49:56.960 --> 00:50:00.768
Unfortunately our marriage
denser bye-bye can\'t say that

00:50:00.769 --> 00:50:05.374
just the introduction of blaring to the
family was the cause of our divorce.

00:50:05.375 --> 00:50:11.149
Because there were other issues but
yet and still it was effector.

00:50:11.150 --> 00:50:16.309
We each had to deal with the fact
that Blair is the way she is

00:50:16.310 --> 00:50:21.588
that was a very hard Listen I just can\'t I

00:50:21.589 --> 00:50:25.399
can\'t say it any other way
it was just it was gut

00:50:25.400 --> 00:50:29.719
wrenching it made me look
at what\'s important in life

00:50:29.720 --> 00:50:32.959
and what\'s not important and
it also made me realize

00:50:32.960 --> 00:50:37.818
hell to a degree we can get
caught up in material things and

00:50:37.819 --> 00:50:42.229
get caught up in careers and
get caught up in all types

00:50:42.230 --> 00:50:46.999
of I label it extra curricular
things when your children

00:50:47.000 --> 00:50:53.029
your family that\'s what\'s the most Thing
in Blair drove that listen home to

00:50:53.030 --> 00:51:00.529
me and we\'d been

00:51:00.530 --> 00:51:04.999
working on feedings it she was
totally fed by her mom or whoever.

00:51:05.000 --> 00:51:07.669
And you know she\'s a
progress from just accepting

00:51:07.670 --> 00:51:10.429
stuff from a spoon to do and
most of it yourself right

00:51:10.430 --> 00:51:13.278
now the main thing that we\'re
working on is getting a little bit

00:51:13.279 --> 00:51:16.773
more of a scoop on there she\'s not playing.

00:51:16.774 --> 00:51:20.748
I have to have trained professionals and

00:51:20.749 --> 00:51:25.128
experts to help support me
to support where we have to

00:51:25.129 --> 00:51:33.129
work as a team it\'s no no one player
has any more power or It\'s held with

00:51:33.469 --> 00:51:35.118
anymore regard than any of

00:51:35.119 --> 00:51:43.119
the other players as a minority parent
trying to interface with professionals.

00:51:43.775 --> 00:51:47.508
Sometimes they do
stigmatize you according to

00:51:47.509 --> 00:51:51.438
what they see as opposed
to getting to know you as

00:51:51.439 --> 00:51:55.698
an individual and I say
that because I do a lot of

00:51:55.699 --> 00:52:01.219
my leg work by phone and I have
things lined up and coordinated

00:52:01.220 --> 00:52:05.088
and then when we arrive
there little surprise

00:52:05.089 --> 00:52:08.868
because whatever vision
why voice prompted in

00:52:08.869 --> 00:52:16.869
their head did not match up with my lovely
face when they saw me So I detect that through

00:52:17.465 --> 00:52:20.493
a lot of nonverbal types of

00:52:20.494 --> 00:52:26.479
interaction they they kind of have that
can\'t be overt with it obviously but

00:52:26.480 --> 00:52:31.834
it\'s subtle but it\'s there but I ignore
that because I let them know that

00:52:31.835 --> 00:52:37.593
my mission is seeking help for Blair and
I understand that you can help her.

00:52:37.594 --> 00:52:40.849
Now if I\'ve been led wrong then I\'ll

00:52:40.850 --> 00:52:45.420
see you later and I\'ll you know
I\'ll be on to the next stop.

00:52:45.850 --> 00:52:49.848
The first thing I would
say to a professional.

00:52:49.849 --> 00:52:54.228
That\'s dealing with me
initially is to please keep

00:52:54.229 --> 00:53:00.093
an open mind Don\'t come to me
with any preconceived notions or

00:53:00.094 --> 00:53:03.949
ideas or or with a prescription
because you\'ve read

00:53:03.950 --> 00:53:08.629
the case history that\'s fine
that just treat that as as

00:53:08.630 --> 00:53:12.984
some background knowledge
and come with an open mind

00:53:12.985 --> 00:53:18.588
and bounce it back down to
the wonderful thing about

00:53:18.589 --> 00:53:22.669
diggers as I\'m the only one the only

00:53:22.670 --> 00:53:29.688
one you want molar molar.

00:53:29.689 --> 00:53:32.869
My philosophy is that all children are

00:53:32.870 --> 00:53:37.548
special and should be loved
and respected for who they

00:53:37.549 --> 00:53:45.549
are I hate to pigeonhole kids do to level
of activity level of ability their child.

00:53:47.134 --> 00:53:55.134
They\'re innocent they don\'t need
all these labels Josh could I

00:53:57.614 --> 00:54:05.614
helped her feel safe again the children
don\'t even see the barriers that we see

00:54:07.385 --> 00:54:11.969
they just see that that\'s a
kid and they want to play

00:54:16.210 --> 00:54:24.210
B Religion

00:54:25.700 --> 00:54:28.068
is a very important part

00:54:28.069 --> 00:54:31.908
of my life in that I was raised as a in

00:54:31.909 --> 00:54:37.158
the Baptist Church probably as long as I\'ve
been breathing I\'ve been going to church.

00:54:37.159 --> 00:54:39.903
Because my mom or grandma.

00:54:39.904 --> 00:54:44.164
Was taking me my religious beliefs and

00:54:44.165 --> 00:54:49.788
practice do help me deal with
stress as well as I would say again

00:54:49.789 --> 00:54:52.999
my family because they\'re
there at least to listen if

00:54:53.000 --> 00:54:56.478
they can\'t do a thing at
all but they\'re there to

00:54:56.479 --> 00:55:00.289
listen and we all live You know very

00:55:00.290 --> 00:55:04.939
close to one another in fact
my sister lives next door and

00:55:04.940 --> 00:55:08.929
that home actually has a
lot of significance to me

00:55:08.930 --> 00:55:14.134
because it was my grandmother\'s
house mean living next door.

00:55:14.135 --> 00:55:19.428
It means a lot because it\'s kind
of a sense of who I am in a.

00:55:19.429 --> 00:55:22.979
An a chunk of family history.

00:55:24.190 --> 00:55:30.364
Maybe you are here maybe you
mean when she stands up.

00:55:30.365 --> 00:55:34.819
Yeah yeah that\'s my helper
do that to television year.

00:55:34.820 --> 00:55:40.549
Challenge. She\'s really big she\'s
she\'s almost about here she\'s

00:55:40.550 --> 00:55:45.618
right Here it here he helps her stand them

00:55:45.619 --> 00:55:53.619
sometimes blip rice is is active in all
phases of Blair\'s life I mean he\'s

00:55:55.399 --> 00:56:01.098
just been right there the whole
time it CSE they talk to each

00:56:01.099 --> 00:56:09.099
other for a while I didn\'t realize that I
could have the same expectations for Blair.

00:56:09.904 --> 00:56:14.389
And the same hopes and dreams for
blair As I do for my son Bryce

00:56:14.390 --> 00:56:18.949
who has no quote unquote
challenges which I beg to

00:56:18.950 --> 00:56:22.759
differ but I I have just learned

00:56:22.760 --> 00:56:30.653
that Any limitations that are placed
on Blair they replaced Uponor.

00:56:30.654 --> 00:56:34.133
Do that plea. She didn\'t
play some upon or sell

00:56:34.134 --> 00:56:38.259
email and to a degree I did
that because I was like.

00:56:38.260 --> 00:56:44.798
Where can\'t do this or where can\'t do that
and instead of thinking about what she can

00:56:44.799 --> 00:56:52.759
do and she sure can make me happy and that\'s
the richest give that she could ever give me

00:57:08.440 --> 00:57:11.340
I know that

00:57:26.380 --> 00:57:27.648
I

00:57:27.649 --> 00:57:27.919
Know

00:57:27.920 --> 00:57:35.920
what you mean

00:57:47.050 --> 00:57:51.784
So we can write that

00:57:51.785 --> 00:57:59.764
sometimes when I\'m writing.

00:57:59.765 --> 00:58:02.069
Sometimes

00:58:02.950 --> 00:58:05.609
I check

00:58:14.950 --> 00:58:17.339
here