When we joined the Down Syndrome Parenting League last year (no, that’s not really a thing), two major events happened.
First, we built an impenetrable wall between us, a.k.a. the “responsible” parents, and those without children, a.k.a. the “fun-loving, free-spirited” young people. We didn’t realize there would be such a divide, but as we started abiding by rules such as beer should be sipped, music should never be played so loud that you have to shout over it during a conversation, and driving 25 [mph] really can save lives, we realized we’d made our bed as old people.
Second, we were given premier, lifetime access to an exclusive club, with privileges ranging from extended insurance coverage to government assistance. (I’d love to say, “government assistance, no questions asked,” but New Jersey has a long way to go when it comes to special needs services.) Throughout this club, the parents are advocates, the kids are gems, and the bonds run deep.
But there’s nothing that can make you feel more like an outsider than entering into a conversation midway through. The Down syndrome community has made incredible strides, from research to interventions to advocacy, and as DS information has become more familiar, colloquialism has forced out actual words for abbreviations. So, let’s catch you up to speed:
DS = Down syndrome. Depending on your crowd, this abbreviation could be your lifeline. This isn’t just an abbreviation for your child’s condition, but also a saving grace when you find yourself speaking with someone who has a different sensitivity setting than you do. For example, many people in the community find that saying “Down’s” is offensive, whereas others don’t like making mention of the word “syndrome” or even taking the time to say “Down syndrome”—yes, it can be a mouthful. You’ll also see “DS” written without any previous mention of Down syndrome. Get used to it.
NDSS = National Down Syndrome Society. I wouldn’t be surprised if most people who say “NDSS” understand it conceptually but don’t know exactly what it stands for. What everyone does know, however, is that the NDSS is a relentless advocacy network for members of the Down syndrome community.
EI = Early Intervention. Hopefully you were visited by a social worker following birth before leaving the hospital and were given information on statewide Early Intervention Services for your child. Or maybe your pediatrician informed you of your child’s automatic qualification for services based on a DS diagnosis. Either way, whether you want to enroll your child in state-run therapies or private therapies covered by insurance, it’s best to get your child on the books via a referral so that you have the opportunity to opt in and out as you need.
IFSP = Individual Family Service Plan. Parents rarely use this abbreviation, but your EI service coordinator and therapists may reference it in everyday conversation. The core of Early Intervention in New Jersey is in developing an IFSP, which includes goals and checkpoints from birth to age 3, updated at regular intervals during this period in your child’s life. The IFSP is very important, and the child’s caregiver is included in all meetings, evaluations, and reviews.
PT = physical therapy/therapist. The first therapy your child will likely start with is physical therapy. Physical therapists do many amazing things, but the main focus is on gross motor skills, which include rolling, crawling, walking, and the zillion steps it takes to develop these skills safely in a child with hypotonia, or low muscle tone.
OT = occupational therapy/therapist. Physical therapy and occupational therapy overlap a great deal in infants, but an occupational therapist will likely enter your child’s treatment plan for fine motor skill building, which includes grasping, playing, self-feeding, and, just like in PT, the zillion and ten steps required to do these things successfully.
DI = developmental interventionist. This individual is an early childhood educator, who provides services for developmental delays, including communication therapy. However, the DI is not necessarily a speech language pathologist, which has raised some concern by parents. Hope doesn’t yet have a DI, so I will begrudgingly send you off of AtHerOwnPace.com to visit an experienced speech language pathologist’s site for more information. What I do know, however, is that our friends who have begun to work with their DIs are pleased with the services they’ve received thus far.
IDEA = Individuals with Disabilities Education Act. Part C is the reason your child is eligible for therapy starting as early as birth. This is a critical piece of legislation for our families.
LC = lactation consultant. The new mom of a baby with Down syndrome will hear over and over again that her baby will never be able to breastfeed. Due to physiological limitations, some babies with DS will never successfully breastfeed, or, like Hope, will settle on a combination of breastfeeding and bottle feeding to ensure adequate nutrition. But as with most life skills, our babies may simply require a little extra guidance. An LC experienced with Down syndrome will help with latching, supplemental feeding, positioning, etc., to help you fulfill your dream of breastfeeding, which is wonderful for bonding as well as strengthening the muscles in baby’s mouth for later chewing and speaking.
This is a growing list. If you have any to add, please feel free in the comments below!