life with DS child

[Anonymous]

Anonymous wrote:
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?

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.

[Anonymous]

I have a child with Ds. I haven't read all the responses to your questions, but I'll answer them and add my comments

- you can expect to take your child to the doctors' offices X times a week EVERY CASE IS DIFFERENT, BUT NOT MUCH MORE THAN USUAL. WE DID AND DO ALL THE USUAL WELL BABY AND CHILD APPOINTMENTS, AND IN THE PAST YEAR, I THINK DC HAS HAD 2 OR 3 SICK VISITS. ONE OF THOSE WAS FOR REFLUX. WE ALSO SEE A GENETICIST, ONCE PER YEAR, AN ENT AND OPTHALMOLOGIST ABOUT 3-4 TIMES PER YEAR.
- counties provide great services in these areas; expect a social worker to go to your child's daycare I WOULD EXPECT EARLY INTERVENTION SERVICES TO GO TO DAYCARE. SERVICES AREN'T GREAT THESE DAYS--YOU NEED TO KNOW YOUR RIGHTS.
- you will need to budget this much for out-of-pocket expenses not covered by insurance DEPENDS ON YOUR INSURANCE. WE DO ST AND OT PRIVATELY, BUT OUR INSURANCE PICKS UP A SIGNIFICANT PORTION
- it's not really realistic for two parents to be working full-time in demanding jobs (or it is!) DEPENDS ON WHAT SUPPORT YOU HAVE--FAMILY, GREAT NANNY, FLEXIBLE SCHEDULE, SHORT COMMMUTE?
- you need to consider what retirement will or won't look like DEFINITELY NEEDS TO BE LOOKED AT MORE CLOSELY, BUT NOT IMPOSSIBLE

Having said all that, each child with Ds is different. Our child didn't have any cardiac issues, no gastro issues and was born at 38.5 weeks. We had a longer hospital stay only because of feeding issues and have never been in hospital again. Then again I know kids who have had cardiac repairs and other surgeries and are still doing really well.

Therapy appointments are tedious, but if you get decent early intervention services, they will come to your home or daycare. We did not have great EI services, so did a lot of private therapies which were time consuming but worthwhile. I would say I spent and still spend most time on education activities--reading, promoting language, developing math skills, working on self help skills, etc. I have a background in education, so I find it interesting, but time-consuming.

Hope this somewhat disjointed post helps. Feel free to ask more questios. I'll try to check back.

- and other factual things I am sure I haven't thought of

[Anonymous]

OP. I have a child with DS and first want to say congratulations on your pregnancy. I want to be helpful but for most of your questions if really depends on what your child's medical issues are, the severity of their developmental delays,your insurance coverage, your HHI and how aggressive you are about finding resources that are available to you that being said we live in DC and receive weekly therapies -OT, pt, and st - through DCEI and supplement privately. We have a waiver and they cover what ins doesn't so we no longer come out of pocket for anything. I cut back on work after our child was born but my husband and I both work FT. We have a nanny but that is by choice no reason it is needed. We also have another child. We have a HHI of about $220k. I hope this is helpful.