Ctrl Alt Delete - the rebooting of Baby Jude

2013-05-20 10:10:47 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.

In the disability world there are tons of phrases, abbreviations and acronyms to learn.  Ways to describe what is happening with your kid in understandable terms. I translate them below for my own use.

Engineer his environment for Torticollis/Severe Plagiocephaly (flattened head syndrome): Push all toys to the left so he will turn his head off the flat side. And don’t let your toddler move them back, even for a second.  For low vision, offer color contrast and lighting, which equals moving the highchair so many times you eventually force your husband to clear the dining room of all furniture.  For motor skills, make every move intentional. When you slip up and just be a mom, don’t lie awake at night replaying the time you picked him straight up from prone, without a side sit in-between. You shouldn’t do this to yourself. I did for a long time. It ain’t a good idea.

BCMH LOA - Bureau for Children with Medical Handicaps Letter of Approval: The Golden Ticket for a kid in Baby Jude’s shoes.  It can act as a 2nd insurance for a child with disabilities. I keep copies in the daytimer, purse and diaper bag.  I HIGHLY recommend pursuing this, if it is an option.  Ask for help in applying. Thank you public health RN and Noelle at Akron Children’s NeuroDevelopmental Science Center!

Respect his boundaries for feeding: Don’t force him to eat. Offer him play and exploration with food. Keep it pleasant, and remember not to reassure with “you’re ok.”  Just describe the foods. Yummy…isn’t that spicy or sweet or whatever the case may be. I know. I even annoy myself.

Hip helpers: These are one-legged spandex shorts. They pull in frog-legged hips. Baby Jude’s hip helpers are electric blue.  Think of the character Lamar in Revenge of the Nerds (that reference is courtesy of Vance).  These suckers look funny but work like a charm.

Parent’s level of acceptance: This is a good one. You may hear it as a whispered question in an initial evaluation from one service provider to another. They are asking how crazy you are by this particular point. It isn’t meant to be rude. But they do have to know if you are a lunatic.  They are in your home discussing all aspects of your family and child’s life. Crazy parent or not is helpful information, I would think.

Spasticity: We were given a folder on this in September of last year. I didn’t open it long enough to read past the first brochure. I guess my “level of acceptance” wasn’t quite there yet.

IFSP - Individual Family Service Plan: This is the manna from heaven when it comes to coordination of services from outside folks - Summit DD Board, Help Me Grow, Cleveland Sight Center. The only family plan I ever dreamed my family would have is a Roth, State Farm and a couple of pre-paid funerals. Times have changed.

Hostile uterine environment: The kindest, gentlest way a really smart and awesome doc used to describe what Baby Jude was (and was not) exposed to before being born. I still need to thank Dr. M for using kid gloves. It sounds way nicer than Baby Jude’s fetal reality.

Flat affect: This WAS Baby Jude. He spent the better part of his 1st year with little or no expression. No social smiles (another new term), no response to typical baby stuff. He could rupture an ear drum before he would cry or tug at it. The kid was a veritable bump on a log. Cute as the dickens, but he sure made us wonder if he had a hamster in that wheel upstairs, if you know what I am saying.

Rebooting of Baby Jude: This is a new analogy given about Baby Jude’s progress. It is as if his brain and body are being rebooted like a computer.  Now he smiles, laughs, coos, plays peek a boo. He is learning to communicate. He signs more, gives air kisses for me, clearly says “Da-Da” and “Uh Oh” and lots of other sounds. His affect and personality are emerging. He is even getting a temper, a little too similar to that of his sister's - not good!

When Help Me Grow Tim and I were talking about this rebooting, it dawned on me. That is the perfect way to describe the explosion of development for Baby Jude. It took all the people on his team to hit Ctrl Alt Delete at the same time. Rebooting, as much as we can, his in-utero life and logging onto his new developing life.

Grateful, Prayerful & Hopeful.

Read more of Sarah's Hey, Jude! blog.

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