What makes this feeding
support site/group/network special? It is being developed
by parents for parents with children
that have severe feeding disorders. We are here to help
out of the love of our hearts, because we have been
there day and night, and we know what it is like
from the inside out. Our daughter, Grace was
diagnosed with a feeding disorder at 2 ½ years old.
We've
been through it from her birth continued to the present
day: failure to thrive, the ng (nasogastric) tube, g
(gastrostomy) tube, feeding tube dependence, oral and
facial defensiveness, food refusal, severe food selectivity,
food allergies, sensory integration problems, neuro-muscular
dysfunction (hypotonia), oral motor weakness, and discoordinated
bowels, etc. all of this without having a primary diagnosis.
Our child couldn't, wouldn't, didn't eat. We didn't
even know feeding therapy existed (or what it was) until
6 months too late (and from a developmental perspective,
6 months is a long time). We advocated for our child
from the time she was born. We were all she had, we
were all we had. We wished there were feeding support
groups, resources and information for feeding specific
issues/problems, and just someone, one
person who really knew what it was like. It wasn't until
Grace was admitted to Kennedy Krieger Institute's (KKI)
Pediatric Feeding Disorders Program that we finally
learned that we were not the only ones, we were not
alone, and we were not crazy. We were with moms and
dads that said and felt the same way as we did: "Nobody
understands", ","There is not enough information and
resources out there for us". Even better, is that our
child felt like she belonged too. Grace could lift her
shirt and compare "tummy tubes" with other girls h er
age and older. Can you imagine a 7 year old feeling
self conscious because of a tube in their stomach, and
then meeting other 7 year olds just like you? It was
at that point I realized we needed to reach out across
the divide between them and us, so that our children
can belong too. As hard as it is for us parents, as
lonely as we may feel, our children, they are the ones
that fall between the cracks of the system, and know
they are not like other children, but they just cannot
help it, but someone can.
We've
been through it from her birth continued to the present
day: failure to thrive, the ng (nasogastric) tube, g
(gastrostomy) tube, feeding tube dependence, oral and
facial defensiveness, food refusal, severe food selectivity,
food allergies, sensory integration problems, neuro-muscular
dysfunction (hypotonia), oral motor weakness, and discoordinated
bowels, etc. all of this without having a primary diagnosis.
Our child couldn't, wouldn't, didn't eat. We didn't
even know feeding therapy existed (or what it was) until
6 months too late (and from a developmental perspective,
6 months is a long time). We advocated for our child
from the time she was born. We were all she had, we
were all we had. We wished there were feeding support
groups, resources and information for feeding specific
issues/problems, and just someone, 
one
person who really knew what it was like. It wasn't until
Grace was admitted to Kennedy Krieger Institute's (KKI)
Pediatric Feeding Disorders Program that we finally
learned that we were not the only ones, we were not
alone, and we were not crazy. We were with moms and
dads that said and felt the same way as we did: "Nobody
understands", ","There is not enough information and
resources out there for us". Even better, is that our
child felt like she belonged too. Grace could lift her
shirt and compare "tummy tubes" with other girls h er
age and older. Can you imagine a 7 year old feeling
self conscious because of a tube in their stomach, and
then meeting other 7 year olds just like you? It was
at that point I realized we needed to reach out across
the divide between them and us, so that our children
can belong too. As hard as it is for us parents, as
lonely as we may feel, our children, they are the ones
that fall between the cracks of the system, and know
they are not like other children, but they just cannot
help it, but someone can.