This is especially true for raising a special needs child. After all, there are plenty of how-to books on raising kids, but what if your child has a learning disability? Stimulation or sensory issues? Physical disabilities? No two cases are the same, and even something more common, such as autism, cannot be addressed with a generalization.

Namine’s heart defect (double-inlet left-ventricle) is a well known defect. The three surgeries needed to amend it (I won’t say “fix,” because there is no fixing it) are just as well documented, but even that can vary. Namine herself provides the perfect example – her heart surgeon had to adjust the first surgery in order to suit Namine’s unique physiology.

But caudal regression is whole different story. Even the name for the defect is just a generalization – it basically means something went wrong on the tail end of the body. Treatment depends on the patient. Is there a partially formed sacrum or no sacrum at all? (Namine’s is partially formed.) What about the pelvis? Are the hips dislocated? (Yes.) Are kneecaps present? (No.) Can the patient move their legs? While Namine can move her legs, her hip movement is restricted, and her left knee hardly bends at all.

Each child is unique, and each child develops and progresses at his or her own pace. Not everything goes smoothly; Namine needed a trach, thus pushing back her vocal development. She can talk now, but still has trouble with plosive sounds. She was born with clubfeet, so she is only now, at two years old, learning to walk – and that would not be possible without the repair surgery, which has had its own complications.

But children are stronger than we know, and perhaps more than we give them credit for. Namine has proven this to us time and again, and still we forget. Today is another reminder, and another milestone: in therapy, Namine walked with a walker. And every day, she climbs and stands using anything she can reach that will support her. Chairs, the couch, boxes, you name it. Far from avoiding work, she strives for it and uses anything she can to strengthen her legs and feet.

  • CindyB

    Walked with a walker! That had to be absolutely precious to see!!

  • Iliana

    “something more common, such as autism, cannot be addressed with a generalization.”

    Very, VERY true! I was born with autism, and the second-greatest unrealistic expectation I contend with (the greatest being that I behave “normally) is that I am expected to behave like someone’s child/sibling/cousin/friend with autism. I’m stereotyped into many categories that are very different from the person I am. I am expected to have an affinity for math and science; while I’m good at these things, my passions lie in the arts — I can’t go an hour without making up a story, and I’d be happy spending the rest of my life designing costumes.
    I’m not and have never been speech-delayed. I never to my knowledge threw a tantrum in a public place. And while I may shy away from the contact of strangers, I have never had a problem touching or hugging my friends and family.

    Also, I want to commend Namine’s parents for their acceptance of her AS SHE IS. As I mentioned above, the single biggest expectation of me is that I can and should learn to behave “normally”. (What is “normal” anyway?) I will never be able to tolerate loud noise or flashing lights. I will always have a need for a personal-space bubble greater than others. Much of my childhood was driven by people trying to erase my “quirks” (I was not officially diagnosed until I was thirteen). Things that might have been fun became chores because I was being pushed to do them the way other children did, and in some cases was forced into them in the first place in an attempt to force me to socialize. The example I use is dance. From the time I was little, dance was associated with pressure, with being forced to do things I really didn’t want to and then being told I wasn’t doing them well enough (I innately lack motor skills). In my junior year of high school, I took my last dance class, and was glad it was done and over. About five months later, I discovered myself listening to certain songs and picturing in my mind movements to accompany these songs. I began to take the movements out of my mind and onto the floor, and it was then that I rediscovered the sheer joy of dancing. Now I want to complain that I don’t get to dance enough. Who knows how much sooner I would have discovered it if I hadn’t been forced into it. And who knows what other things that I now despise could have been joyful under other circumstances?

    Keep accepting Namine, differences and all, and insist that the world do the same.

  • ‘ad-lib’ indeed. I call parenting a constant judgment call. That is if a parent chooses or learns to think about their own behavior and its effects on their child. (oops. going off on a tangent here.) You are so correct in that many diagnoses only categorize a child’s issues – not specifies them for protocol intervention, or parenting. Both autism and cerebral palsy are quite individual in presentation. The individuality of each child is a primary reason to be suspicious of treatments that ‘treat all’ children in (esp many) diagnostic categories.