CVI First aid

5E6B9D4E-A5A3-4F2A-9CDC-DCB4BCDCBA4BSome days the hardest part of your child’s cortical visual impairment (CVI) is not trying to make sense of his vision, but trying to make sense of your sensory kiddo. At least this is how it is whenever it comes to dealing with boo boos or injury, illness, sickness or trauma.

When any kind of physical ailment is a Great Big Deal for your child – whether a knee scrape, stubbed toe, falling down – it can make it impossible to gauge the severity of the problem. Even trying to determine the bodily location, or extract an explanation of the complaint, becomes a mental exercise.

“Is it your leg? Or is it your tummy?? Can you point to where it hurts? With your finger? Did it hurt as soon as you got up? Did something happen? Did you bump into something?” Because bumping into things, unexpectedly, unintentionally happens all. the. time.

“Yeah it hurts more when I walk.” But does it really hurt more when he walks or is it because I just finished saying so?

Parents of children who cannot speak are left to decode cries and expressions and moans and body movements, in the struggle to figure out the origin of their child’s pain. We know our children best but in those moments you feel utterly helpless.

“Although blood could be dripping from my veins and I wouldn’t notice – their pain I sensed on my nerve endings,” as Joyce Maynard nailed it. Possibly the best description of mothering ever.

Not knowing the nature or seriousness or source of your child’s discomfort leaves the parent in a perpetual state of heightened alertness, not a good or healthy place to be for any amount of time. You silently explore potential maladies from a simple pulled muscle to emergency appendicitis (which is always an emergency). You cannot feel calm because what if it is an emergency to be? Do we go to the park or wait it out at home? We decide to head out to the store, in pragmatic, wait and see fashion, the extra phone charger tucked into my bag, lest we end up at the ER.

Most of the time, reinforcement is sought. “I’m not asking you to solve this over the phone but I just need to talk to another medical professional – I mean a medical professional…” I’ll be the first one to call the doctor or the nurse with concerns and have happily paid the price of many an office visit co-pay for a semblance of  reassurance, of, You are doing the right thing.

You fondly recall the days of infancy and toddlerhood, when his threshold for pain seemed to know no bounds, an equally  unnerving circumstance. Injury brought little response, did that fall even register? Compared to these days when his awareness of everything around him has increased, when the most minor bump brings instant tears and wailing, “Will it be better by Christmas??” It always needs to be better by Christmas.

In the midst of the boo boos and injury and medical drama you would at least think that nurturing would be some compensation but figuring out what helps in his sensory world, is difficult. Lacking your own childhood model of nurturing, you want to do better.

Let’s get cozy with a nice soft blanket…

“No cozy!” “No soft!” “No BLANKET!!

Why don’t you get comfy and put on some pajamas and watch movies?

“No pajamas!!

Well maybe your fleece pants?

“No FLEECE pants!

Unless you are comforting him following a Great Big Deal like a seizure – or something more ordinary like influenza or whooping cough – then it is different. Especially following seizure it is, can you crawl into the hospital bed with me. And you do it.

Don’t even try to get within an inch of him with the intention of applying a band aid. The mention of the prospect of the band aid only makes matters worse.  The wound is intolerable but the fix is unimaginable. Coban, liquid bandage, actual band aids (Batman, Nemo, pizza etc), he wants nothing to do with any of them. We have left the toy store amidst high drama when a band aid was unacceptable but so was freely bleeding in a toy store, of all places. Offers such as “If you want to put on the band aid, we could stay at the toy store longer” only escalate his meltdown. It is time to go.

Ice is a preferred substance – but not when it comes to injury. On a drive across the country, a simple cup of ice could preoccupy him for an hour but the suggestion of holding ice to a wound is impossible. He tries it for a few minutes before declaring, “It’s not BETTER! Will it be better by Christmas?!?” Besides, ice has the unfortunate quality of melting, right when you need it most. In spite of a love of the water, droplets of water on the skin are unbearable.

And so on and so forth…

There is a saying about why kids behave badly when their mom is around, or as soon as kids come home from school. Because home/you are their safe space. But for the parents of children with a disability, at the end of the day, where is our safe space?


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