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Miles was born a typical child and at four
weeks old he started having seizures.
In the process of learning about why Miles was having
seizures at such a young age, which is not typical,
we discovered that Miles has a really rare genetic
mutation.
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My name is Rita Fredericks and with
me is my husband.
I am Nate Fredericks and we are parents of a child
who is deafblind.
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Rita: Miles has eyes and ears that
function but his brain does not want to process
the vision and the hearing that comes through.
Miles is otherwise physically disabled as
well as cognitively or intellectually disabled.
(Miles giggling)
Rita: He is a very joyful, happy
child.
He really loves to spend time with people and to be
touched and to feel others around him.
Miles is non-verbal.
That is not something that will change for Miles.
He also doesn't have good movement or use of his
hands to try to learn Sign Language or to try to use
Braille as an option.
His communication isn't super formal but it's
formal for our family and it's formal for Miles and
that comes in the forms of different squeals,
different tones, different loudness, different ways
that he holds his feet and his legs, different ways
that he might move his arms.
Rita: There's a lot of those small clues that you
have to pay quite a lot of attention to and of course
it took a lot of time for us to understand the
development of that communication for Miles.
We call them gestures.
We have a gesture dictionary and it is
videos or descriptions of these gestures so that
when there's someone new they might be able to
understand more quickly.
(Miles gesturing)
Rita: For Miles, when he was
really young and prior to us knowing and
understanding all that he is, he would get really
irritated in the bath.
So, if you can imagine, Miles has no access to
that incidental environmental information.
So he does not hear the bath water running or the
shower coming down or that he's in the bathroom, for
instance, versus in his bedroom or in the living
room.
So now when we go to give him a bath, you know, we
present some water, put his foot in the bathtub.
If we can use some of those contextual
environmental clues we can give him more information
and we can create meaning around this routine.
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Nate: We have a couple of different swings
that we have put in the house to give him some
different areas on the floor with some soft tiles
where he can explore.
He'll just kind of maneuver and it's just really
exciting to kind of see where he ends up and know what that might
tell us about him and his day and how he is feeling
that day.
He is kind of a little explorer.
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Rita: We also have a son, Liam, who is 10
currently.
Liam really enjoys being a big brother.
He has really learned quite a lot about taking
care of someone.
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Liam: I show my brother that I love him by
I cuddle with him, I pester him a lot.
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Liam: I worry about him from day-to-day.
He pukes a lot, so I help with the cleanup part.
I brush his teeth a lot when my parents are doing
other things.
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Let's see if we can get you going fast.
Rita: Liam is pushing him right now on an in-ground
merry-go-round.
So it's something really big that Miles can feel.
As we're spinning and he starts moving his feet and
he starts raising his hands, that is how we know
he's enjoying it.
His eyes came open.
Rita: Even though we have great information about
Miles and we know what he loves to do, his epilepsy
and his seizures take away from us some of the
communication that we typically have with Miles.
That has been very hard.
Today he's not showing a lot of excitement or
happiness.
But we can still tell he's alert, his eyes are
opening.
Rita: We like that he is friendly and accommodating
and that he is flexible with us and he is very
chill and goes with the flow.
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Rita: We go hiking as far as we can with
Miles in the wheelchair.
It doesn't scare us.
Liam really loves to swim.
In fact, Liam and Miles both love to swim.
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Rita: Liam is on swim team and has been on
swim team for some time and all of the pools that
he would go swimming at were not handicap
accessible.
And so those were activities that we just,
we couldn't take Miles to.
And so if both of us wanted to be at a swim
meet then we had to really think through who was
going to take care of Miles in our absence and
those folks are very limited in number.
People get very nervous to take care of him and to be
responsible for him.
There's a lot to think through.
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Rita: You know, I think in all of the
challenges that have come with having Miles, there's
a lot of wonderful life lessons and joys, things
that we have learned from having a child like Miles.
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Rita: We're certainly closer as a
family.
I think that we have had a lot more opportunities to
be home together and to experience some new
environments like the therapy clinics and in
that we have met a lot of new families, new friends.
(Miles gesturing)
Rita: As far as Miles' future goes,
our goal is to make sure that he attends school and
that he gets out of school what he is able to and
that we teach him and try to create some more
meaning in different activities so that he has
some other things that he understand with his body
or his mind, his cognition, and some
additional people in his life.
Rita: He does have a shortened life expectancy.
There is a lot of grief in parenting and
understanding the work that has to be done around
knowing that you're likely going to outlive your
child and the likelihood is very high and that
there is a really high likelihood that your child
will not always live in your home but will always
need the full care.
When the time comes and when we're ready to make
decisions or choices that are different than Miles
being in the home as he is right now with all of us,
we don't feel afraid anymore.
Nate: Just that type of knowledge just really
enables you to take it one day at a time, one week at
a time, one month at a time and just knowing that
tomorrow is going to be another day and we've just
got to work to make sure it's going to be as best
as it can.
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