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Were you hiding?
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Hannah, she's our second child and she was the one
born with CHARGE Syndrome.
There are physical limitations that come with
her diagnosis.
And the CHARGE Syndrome has been what makes her
deafblind.
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Samantha: Hi, my name is Samantha Teed and
I'm here with my husband Ricky Teed.
Ricky: We're proud parents of five kids.
Hannah: Hi, my name is Hannah and I'm 11 and I'm
deafblind.
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Ricky: So, Hannah was born to us and right
away there were some issues.
And so the doctors were taking care of her and
running a lot of tests on her.
One of the doctors was able to diagnose Hannah at
two days old with CHARGE Syndrome.
And because of that she is deaf and she is blind,
which gives her the deafblind diagnosis among
other sensory losses that she has.
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Samantha: In the beginning it wasn't really
that we were focused on interventions of what can
we do for her hearing and her vision, but what do we
need to do to keep this child alive, because she
has got a heart condition and this and that.
Samantha: Anything you want to share with us
about your life or your family?
Hannah: I was a very small baby, like very tiny,
I had to have heart surgery.
That's why I have that scar on my chest.
Samantha: That's right.
What else?
Hannah: And by the time I turned 6 months old I
started using Sign Language.
Samantha: Yeah.
Can you tell us about your hearing?
Hannah: I don't really hear that much with my
left ear when I don't have a hearing aid on.
But I do if I take this one off and I still can
hear because of my right ear hears much better.
Samantha: Right, because you're considered deaf in
your left ear and you have moderate hearing in your
right ear, right?
Hannah: Yep.
Samantha: Yeah.
And what are some other ways you communicate?
What did we use first to learn how to communicate?
Hannah: Sign Language when I was only 6 months old.
Samantha: And do you communicate with Sign
Language for your friends that are deaf?
Hannah: Yes.
Samantha: And how about when you're learning at
school, do you use Sign Language?
Hannah: I use my voice for people who don't know Sign
Language.
Samantha: And so you can do both, you speak and you
sign.
Do you prefer to speak or sign when you are talking
to others?
Hannah: I prefer to speak.
Samantha: To use your voice.
Hannah: Yeah.
You'll probably go to the other sign to pass me.
Samantha: For your vision do things need to be far
away or close?
Hannah: Close.
Samantha: Why?
Hannah: Because I can't see far away.
Ricky: And how close do you need like a book when
you're reading?
Hannah: This close.
Ricky: Yeah, about four inches.
Samantha: And do you -- what type of equipment do
you use to help you see better when you need to?
Hannah: I use a globe.
Samantha: So what does your globe do?
Hannah: It makes things bigger.
Samantha: Mm-hmm, like a magnifier, huh?
Hannah: Mm-hmm.
Samantha: And then what does your mat connect to?
What do you use that for at school?
Hannah: To blow things up.
Samantha: It blows things up.
Hannah: Yeah.
Samantha: You can zoom in and you can make things
bigger.
Hannah: Yeah.
Samantha: It's kind of like your eyes in a
classroom, huh?
Hannah: Yeah.
Samantha: Yeah.
Anything else?
What are some of your favorite things to read
about or learn about?
You like maps.
Hannah: Yeah.
Samantha: Why do you like maps?
Hannah: They take me somewhere.
Samantha: Because they take you somewhere?
That's right, they do, don't they?
(water rushing)
Samantha: We have never let the
diagnosis define her.
Hannah is not her syndrome.
And even though she has these things that make
life more difficult they don't define her, she
defines herself.
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Samantha: She is in fifth grade this year.
With the assistive technology and devices
that she has she is able to test out and be at the
level that her peers are, so similar to somebody her
age without a disability.
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Ricky: Hannah being at grade level with
her peers hasn't been easy.
But she has been doing therapy since just a baby
and she can hear, she can talk to us and have
conversations just as a hearing person can, but
she does struggle.
And it is fatiguing for her.
And so a lot of people they'll see her and they
don't understand why she needs an interpreter or
they don't understand why does she need certain
accommodations.
But because of those accommodations that we
have been able to get for Hannah she has been able
to excel in life.
And so we struggle and it's a continual fight to
try to keep those accommodations.
And fortunately we have an excellent team around us
that helps us and supports us in that.
Samantha: In 2014, we found out that she was
losing some hearing in her right ear, which is
typical.
They can have continued vision or hearing loss.
Her eyes are at risk for retinal detachment.
She is training with a deafblind cane so that she
has that accessibility as she needs it when she
needs it.
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Ricky: And I think with all that said, our
kids, all her siblings, they see her and they
understand and it can be hard, well it is hard on
them sometimes because it does give them extra
responsibilities.
It is a family effort and I think we're making it
work right now.
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Samantha: Our new family motto is hard
moments don't make bad days.
I do feel like Hannah is kind of the glue that
keeps us all close and helps us remember what is
important in life.
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Ricky: When Hannah got her adaptable
bike, that was a tremendous day and she
didn't see herself any different from her
siblings that day because she was able to ride her
bike next to them.
So all these normal milestones that we just
have grown to expect, when you go through these
struggles they are even more tremendous.
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Samantha: We don't have time to worry about
the little things in life that sometimes we can get
caught up in.
We also have to be okay with what is happening
right now and in this moment.
Especially at the beginning of Hannah's life
there were a lot of things that we just had no
control over.
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Samantha: So as far as the future is
concerned, I do know that she does not intend on
living with us.
She has made that very clear.
We can come visit her.
She, at this point in her life, is fully intending
to have a family and wants nothing more than to be a
mother.
And I hope that that will be true for Hannah.
She is doing very well.
She seems to be able to make choices for herself
and move forward and she's starting to cook, she's
starting to take lots of responsibilities.
So we have a very hopeful outlook for her future and
what that will be.
And we're okay with whatever it may be.
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