Jaylyn officially turned 15 months old the other day and had her well visit and age appropriate vaccines. The visit had jostled some thoughts and feelings.
First, the nurse goes down her list of questions about insurance, family history, changes in the home...etc...and then she comes to the list of milestones Jaylyn should be meeting or should have already met. She treaded lightly this time. I guess she recalled the tongue lashing I had given her last time. When you see a child that visably and obviously cannot do certain things, why would you put the parent in that situation to even ask? It hurts enough to know my daughter cannot walk or talk. But to be reminded like that? Looked at and judged as if it was something I did as a parent?
I sincerely wish more of the staff in the pediatrician's office were more savvy and experienced with special needs children. One particular pediatrician in that practice has been its saving grace from me switching providers. I have used this practice for years (my oldest is 20) and never had an issue with the care of my children. Then again over the course of our countless visits and time spent in the waiting room, I do not recall seeing even 1 disabled child. The fact that some of the nurses were staring at Jaylyn in her MAFOS makes me wonder how much it was even touched upon in nursing school and where they did their peds rotation. Maybe because I have been working with special needs children so long, it doesnt phase me in the least when I see a disabled child with adaptive equipment.
So after the nurse finished her bla bla bla list of things Jaylyn cannot do, the doctor comes in and goes over the growth chart, where Jaylyn is and where she should be. Again putting her in a "typical" box. And then the milestone list with the doctor. Can she do this, can she do that....no, no AND no. BUT...she can do this, this AND this! And because of her physical limitations, Jaylyn has been deemed to be on the level of a 6 to 9 month old developmentally. It doesnt matter that she has quadriplegic cp yet will reach for my fingers, scootch off my lap and expect me to support her as she goes through the appropriate one foot in front of the other motions. It does not matter that she has the absolute desire to walk. My favorite question that I have been asked at every single appointment since Jaylyn turned 6 months old is "can she drink from a sippy cup"? Hmm lets see....she had an intrauterine stroke that affects her entire right side...including her mouth. Due to that, even with a bottle, at least 1/3 of its contents winds up down her chin. With a sippy cup? Its more than half! So do we risk hydration and calories for the sake of a milestone? Can she hold the sippy cup with a contracted right hand? These are the things that make me irate. As often as Jaylyn is seen, every visit feels like an introduction. As if they do not know by now that Jaylyn is not typical yet persue the avenue that she is with some of the questions and expectations.
We then touched on the subject of Jaylyn's sleeping habits. Or lack there of. Of course the suggestions offered were things we have tried. And then it was suggested that Jaylyn should have a sleep study done to rule out seizures. Considering her MRI findings, I wouldnt be surprised if her brain abnormalities have something to do with why she is so nocturnal and has trouble sleeping. Or perhaps its hereditary. Myself and my oldest child are night owls.
Not every child is a perfect cookie cutter mold that fits into the perameters and growth charts. And children like Jaylyn should have their different-abilities takrn into consideration during appointments. Especially with a medical practice that will be following her throughout her life.
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