Stone Soup Group - "Why We Are Here"


Uploaded by ProgressiveMediaAK on 15.09.2011

Transcript:
[Slow Guitar Music]
Stone Soup Group came into being
because families have stories to tell about healthcare
and the needs that their children had,
and service providers knew that they weren't
meeting the needs of families as well as they could.
We brought our experiences as families
and the service providers brought their knowledge of the service system,
and we put those together into the pot, so to speak,
and came up with the concept of Stone Soup Group-
where families support other families, help them along the path.
Well, the main thing with Stone Soup Group
is everyone there at Stone Soup Group has
a special needs child or a family member.
It uses families that experience those issues
to reach out and help other families.
It's not “take a number.”
These people are here to help you,
and that's why they're there, because they love what they do.
[Slow Guitar Music]
Parent navigation as a philosophy started at the very beginning
of Stone Soup Group when we first started talking
with service providers about the needs of families.
There are so many things that we as parents face…
because we expected all through pregnancy,
sometimes to labor, even taking the child home, that we
were going to have a normal, healthy baby.
It's really hard when parents find out you know at first-
“Oh I have a child-" with whatever the type of the need may be.
You always think it's just you or "why me".
Sometimes you do feel like nobody understands .
It's not every day that you're able
to look at things in such an upbeat note.
There are some days that you just want to
throw your hands up in the air... and there is help out there.
When you realize that our journeys as parents
with kids with special needs has been really rough.
Not many people understand how complicated and stressful
life can be when you’ve got a kid with multiple disabilities.
My daughter was born with an ectodermal dysplasia,
which affects her hair, skin, nails, and teeth.
There was a lot of pain when she was younger.
There's no enamel, so she's frequently put under anesthesia
to fix her teeth and make sure that we stay up on taking care of them.
Every family is different.
Every family needs a different level of service,
and some kids just need a recreation program or families are looking for
summer care or other families need a lot.
My son has cerebral palsy, a seizure disorder;
he has Cortical visual impairment which means
the area of his brain that should see doesn't see.
Needless to say, he's medically involved and multiple handicapped
and cognitively delayed, profoundly.
[Slow Guitar Music]
We came up with this concept of parent navigation,
where veteran parents that had been on the path on for a while
would mentor families who were just getting a diagnosis.
When you have a parent navigator, it's a person that's beside you
enabling you to find a way- find the resources
that are going to help you and your family.
Sometimes it's very scary and it's overwhelming
when you just get a new diagnosis of a child
and you don't even know what the words mean.
The parent navigator can help you understand:
what does it mean to have a child with "autism,"
what does it mean to have a child with "cerebral palsy,"
what does it mean- "Asperger's syndrome."
They're a parent who's been down that road before
and so they know the journey
and they can help others feel more comfortable talking
about what's going on with their child.
And just be the liaison sometimes between
agencies and programs and the actual family.
You know so every family that comes then we meet with them
and talk over what their wants are and desires are for their child.
And then going also with the recommendations of the doctor
and try to plug them into those services.
Everybody who works there
their heart is very much involved
in the whole mission of Stone Soup Group, which is to support and sustain
families and children with special healthcare needs.
[Slow Guitar Music]
A parent coming to Stone Soup Group can expect
a good listening ear, a person to help work out their problems - their issues
and a person who's going to be really compassionate and understanding.
I think that they could expect to get some direction
to their search for help and answers.
They are really the entity that brings
different pieces of the puzzle all together,
so that there's a great future that's formed.
Stone Soup Group is so important to the community
because it helps educate people.
It brings awareness.
They've reached out to so many families in so many different ways
that they've really just proven that that's why they're there-
the pure love of helping other people.
We may be with them for just a little bit of their journey.
We may be somebody who they come back to
every time they hit a rough spot in the journey.
But the idea is that we're not leading the boat.
We’re not drivers.
They are the people that are in charge.
We’re there to support them and help them
get what they need for their kids-
and for their families to be as successful as they can be.
[Guitar Music]