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[quote=Anonymous][quote=Anonymous]
OP here, this is really helpful. Again, completely recognizing that there is no such thing as "typical," I'll ask it anyway: what is typical in terms of these kinds of appointments? Is it possible to quantify? I totally get taking one's child to the doctor "more than the average child," but what could we expect that to mean? It's so hard to envision - I know it's the same for children without DS as well, but... I have this image of my life becoming one in which I become more of a caretaker, driver-to-doctor's and therapists appointments, than anything else, and a life that may be constantly plagued by the worry of some really big deal thing manifesting itself in my kid (or, dealing with a life in which some very likely "big deal" thing happens to my kid). Clearly, that can happen with any child, but I guess the question is: how likely?
 
[/quote]

I'm the PP at 20:36, 21:40, and 16:10.  I think the answer here is that it depends a lot on 2 things.  One is your child's health.  Clearly, for example, a child with a heart defect will need a lot more support than one without, at least during the first year.  The other is your family's approach to intervention.  I know families of kids with DS who, whether due to philosophy or finances get all of their therapeutic services at school from very early on.  I know other families who choose to have their kids in therapeutic activities up to 4 or 5 times a week.  Their kids might see an OT, a speech therapist, a tutor and take adapted ballet or horseback riding or swimming lessons.  I will say that the latter families are likely the same families who would otherwise choose to have their kids in travel soccer, and Kumon, and violin lessons by second grade.

I'm also the parent of a child with a different diagnosis who went to the Dr. "more than the average child" as an infant or toddler.  By that I mean we were probably at a Dr.'s appointment at least once a week until his first birthday, plus I was taking him across town to a special daycare for medically needy kids, and spending a lot of my time advocating, dealing with insurance companies, and giving home medical treatments.  I will say that even though those things were hard, and time consuming, I never felt like I was more of a "caretaker" or driver than anything else.  My identity was still very much as "mom".  Although in many ways my experience parenting my oldest was different from other people's experiences, or my experience with my younger child, at it's core it was very much the same.  Mixed in with the traffic, and the medication vials, were many moments of playing peekaboo in the waiting room, and having my breath taken away for the millionth time by how cute he was, and telling stories, and drying tears etc . . . I'm a professional caregiver, and I like and care for my students very much, but the feeling of love I have for my own child, and the anxiety and sense of purpose that went with it, is entirely different, and wove it's way through every step of a way.

I would also encourage you to remember that kids with DS grow up.  That seems really obvious, of course, but I think it's really hard, when you think "how will my life change" to remember that it will be a life that's constantly changing.  The parts that are hard or easy, or frustrating or joyful at 6 months will be very different from the parts at 7 years or 15 years or when you're retiring.  I'm not sure that's helpful at all, but I think it's important to remember. [/quote]

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