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.