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[quote=Anonymous]I don't have a DS child, but some families I am close to do.  I can tell you about some commonalities.  I'm also going to respect your logical request to hear about the demands rather than the joys at this point, but feel compelled to simply point out that there can be a lot of joy in parenting a DS child.

-- You can expect to have many of the same experiences that other families have, whether it's reading together or teaching your child to swim, or traveling, but the timeline for these things may be different.  You can also expect at some point that you'll deal with the common challenges that other parents face, from toilet training, to discovering the opposite sex, to various misbehaviors.  Again, the timeline for these things may be very different.   You may also find that some of the challenging stages of parenting (e.g. toilet training!) last longer and require more effort, persistence and creativity.

-- You can expect health problems during the first couple of years, be it gastro problems, or heart problems, or difficulties feeding.  Most, but not all DS babies and toddlers have some kind of complication.  These problems can range from very manageable to life threatening, and can involve commitments from a few doctor's appointments and some therapies, to long hospitalizations.  For many kids with DS these health problems seem to diminish over time but they generally don't disappear, and sometimes new problems will crop up as the child grows.

-- You can expect that your child will need supports at school, such as therapy and enhanced staffing, and specialized instruction, although it's hard to tell exactly what combination of these things and how much.  You can also expect that you'll need to develop expertise in understanding these areas of service in order to advocate for your child.  If you choose to self pay at a private school, you'll likely to have to pay for these services as well.  If your child is in public school these services will be free.  Either way, you can expect to spend a fair amount of energy advocating for your child to be well served at school.  If you live in MCPS or FCPS, this advocacy can lead to some very strong services.  If you live in PG or DC it's less of a sure thing.

-- You may decide to supplement your child's education with private services that may or may not be covered by insurance.  Many families find that their children benefit from tutoring, or extra speech and OT and PT, or drama, ballet, horseback riding or swimming lessons that are adapted.  You can expect that these services will cost you a fair amount of money, even if insurance is contributing, and that you'll spend a fair amount of time arranging them, driving to them, etc . . .

-- If you're a working parent, you can expect that childcare will be challenging but not impossible.  When your LO is young you may decide that a nanny makes more sense than a daycare center.  A nanny will make it easier for your child to access services, as they can drive or be home for home therapists.  A nanny can also cut down on your child's exposure to germs, which can be helpful when they are young and fragile.  Once your child is older and in school, you may find that aftercare and summer camp are more complicated.  Simply signing up for aftercare at your local school or the same camp your neighbors all carpool too may not work, and you may need to research programs carefully and juggle schedules creatively.  You may also find that you have to advocate hard for your child to be accepted as some programs can be resistant to including kids with visible disabilities.

-- You'll probably be able to continue a career, but will probably find that you need to make choices that lead to more flexibility as there will be more Dr.'s appointments and days you need to leave early, than for typical kids.

-- You will find that there are moments of great joy as your child exceeds people's expectations, and that there are moments of heartbreak as your child navigates a world that can reject them.

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