Quote:
Originally Posted by calf
1000 times this. Before kids, my wife and I were all "we'll never be like those helicopter parents out there". After our son was born it became "ok, yeah we need to be careful and stuff sure, but boys need to be boys".
Then he was diagnosed with a bleeding disorder at 7 months, and everything changed. Thankfully the treatment is straight forward if he bleeds, and we provide preventative treatments that works for a couple days before wearing off. Bleeding episodes so far have been every few months (bleeds longer, not easier or more profusely).
A few weeks ago he was shifting position in the tub, slipped a bit and busted his lip. Cut was too small for stitches but although we treated it, it bled a bunch for a few days and then off and on for another week...about 12 days total. I am still beating myself up for this.
But I am so worried that we might not catch something internal and not as obvious in time. Or something happens to my wife or I and we aren't able to explain to a first responder what to do since it is a rare condition that is rarely encountered.
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That's a tough thing to have to deal with. This is coming from the perspective of a teacher who works with kids all day every day, and I imagine you're already doing this, but the more tools you give him to advocate for himself - to understand his ailment, what it means, how serious (or not) various situations are, and to have the words to describe his own needs is
invaluable.
I see an immense difference between the kids who are comfortable with their ability to self-advocate and those who only understand "I can't do that" or "I'm unwell." Kids with significantly greater disabilities, but a clear understanding of their disability, are
so much more confident in a gazillion different ways than kids with, say, a bee-sting allergy but no real understanding of what that means beyond "Mom says bees will kill me."