
Baby Ballerina
Special Blessings, Special Vocabulary
By: Kimberlee Kadar-Kallen
Kimberlee Kadar-Kallen is mother to Eliza, born with Down
syndrome and AVSD. Eliza spent her first months in heart
failure until her heart repair. But now at almost four years
of age, she is thriving as a homeschooled child alongside
her six siblings. Kimberlee blogs at Pondered in My Heart.
When a family first receives the news that they may have a
child with Down syndrome, they are likely to encounter some
new vocabulary not previously part of their everyday
lexicon. Over time these new, unfamiliar words lose their
cumbersome feel and become a comfortable part of everyday
life, much like an unyielding new pair of shoes softens and
grows familiar. I thought I would explain some of these
terms and what they have come to mean for our family.
Nuchal fold – This is the delicious area of skin at the
back of the neck that is extra thick and soft and smooshy in
children with Down syndrome and therefore the perfect place
to snuggle, nuzzle, bury-your-nose-in and cuddle your sweet
baby. Michael says it’s his favorite spot to kiss Eliza.
Trisomy 21 – Trisomy means there are three copies of each
chromosome instead of two, and it has been discovered that
cuteness is located on the 21 st chromosome. Be prepared for
unprecedented levels of cuteness, even if you have many
other children who you think are cute.
Hypotonia – Sometimes referred to as poor muscle tone, what
this really means is that all of Baby is super soft and
cuddly. Synonyms for this condition are smoosh-ball,
teddy-bear, snuggle-puss, honey-love, and so forth.
Squeezing and hugging Baby is a frequent and irresistible
temptation.
Short stature – Children with Down syndrome are typically
short in stature due in part to short limbs. This just means
parents and other loved ones will have abundant opportunity
for exercise in the form of deep knee bends.
Speech therapists- This is another word for siblings. These
are the children who will spend countless hours teaching
your child with Down syndrome to talk and speak clearly.
They will mimic sounds, invent oral exercises, play word
games, demonstrate proper mouth movements, repeat key
phrases, practice letters and numbers and loads more ad
infinitum. Some therapists have unique methods such as
requiring the client to say, ‘Guard, release the faun!’ in
order to have the car sear unbuckled or repeating unusual
words like ‘gastrovascular’, but you have to just put up
with their quirks.
Developmental delays – What this really means is that for
once you don’t have to say, ‘Oh, they grow up so fast!’ The
delight of babyhood and toddlerhood is prolonged and there
are ever so many more moments of it to savor. Baby will grow
and learn in a slow and gentle manner and there will be
plenty of opportunities to practice cheerleading along the
way. You will also marvel and appreciate each little
milestone that you may have taken for granted in all of your
other children.
Congenital heart defect – This is really one of several
code phrases for an intensive training course in learning
the true meaning of Jesus, I trust in you. This training
involves great spiritual growth and opportunity for
deepening and greatly magnifying one’s prayer life. There
may even be a special retreat involved where one can really
progress in prayer. The special code term ‘open-heart
surgery’ is often used for this unique retreat that takes
place in a hospital.
Special needs child – All children are special and all
children have needs. Both of these facts can sometimes be
taken for granted, but that is less likely with special
needs parenting. This child will force you to see things
more closely to the way God sees things, which is very, very
contrary to the way the world sees things. The ‘special
needs child’ instantly and unequivocally obliterates the
blather of the world’s view of life. Each and every life is
a precious gift from His hand, of equal value in His sight,
and the special child makes that especially clear, every
moment of every day.
By: Kimberlee Kadar-Kallen
Kimberlee Kadar-Kallen is mother to Eliza, born with Down
syndrome and AVSD. Eliza spent her first months in heart
failure until her heart repair. But now at almost four years
of age, she is thriving as a homeschooled child alongside
her six siblings. Kimberlee blogs at Pondered in My Heart.
When a family first receives the news that they may have a
child with Down syndrome, they are likely to encounter some
new vocabulary not previously part of their everyday
lexicon. Over time these new, unfamiliar words lose their
cumbersome feel and become a comfortable part of everyday
life, much like an unyielding new pair of shoes softens and
grows familiar. I thought I would explain some of these
terms and what they have come to mean for our family.
Nuchal fold – This is the delicious area of skin at the
back of the neck that is extra thick and soft and smooshy in
children with Down syndrome and therefore the perfect place
to snuggle, nuzzle, bury-your-nose-in and cuddle your sweet
baby. Michael says it’s his favorite spot to kiss Eliza.
Trisomy 21 – Trisomy means there are three copies of each
chromosome instead of two, and it has been discovered that
cuteness is located on the 21 st chromosome. Be prepared for
unprecedented levels of cuteness, even if you have many
other children who you think are cute.
Hypotonia – Sometimes referred to as poor muscle tone, what
this really means is that all of Baby is super soft and
cuddly. Synonyms for this condition are smoosh-ball,
teddy-bear, snuggle-puss, honey-love, and so forth.
Squeezing and hugging Baby is a frequent and irresistible
temptation.
Short stature – Children with Down syndrome are typically
short in stature due in part to short limbs. This just means
parents and other loved ones will have abundant opportunity
for exercise in the form of deep knee bends.
Speech therapists- This is another word for siblings. These
are the children who will spend countless hours teaching
your child with Down syndrome to talk and speak clearly.
They will mimic sounds, invent oral exercises, play word
games, demonstrate proper mouth movements, repeat key
phrases, practice letters and numbers and loads more ad
infinitum. Some therapists have unique methods such as
requiring the client to say, ‘Guard, release the faun!’ in
order to have the car sear unbuckled or repeating unusual
words like ‘gastrovascular’, but you have to just put up
with their quirks.
Developmental delays – What this really means is that for
once you don’t have to say, ‘Oh, they grow up so fast!’ The
delight of babyhood and toddlerhood is prolonged and there
are ever so many more moments of it to savor. Baby will grow
and learn in a slow and gentle manner and there will be
plenty of opportunities to practice cheerleading along the
way. You will also marvel and appreciate each little
milestone that you may have taken for granted in all of your
other children.
Congenital heart defect – This is really one of several
code phrases for an intensive training course in learning
the true meaning of Jesus, I trust in you. This training
involves great spiritual growth and opportunity for
deepening and greatly magnifying one’s prayer life. There
may even be a special retreat involved where one can really
progress in prayer. The special code term ‘open-heart
surgery’ is often used for this unique retreat that takes
place in a hospital.
Special needs child – All children are special and all
children have needs. Both of these facts can sometimes be
taken for granted, but that is less likely with special
needs parenting. This child will force you to see things
more closely to the way God sees things, which is very, very
contrary to the way the world sees things. The ‘special
needs child’ instantly and unequivocally obliterates the
blather of the world’s view of life. Each and every life is
a precious gift from His hand, of equal value in His sight,
and the special child makes that especially clear, every
moment of every day.
I love this!!