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"Normal" for Down Syndrome

Posted Jan 15 2009 4:53pm
The DS chat board that I frequent currently has a running thread about what is "normal" for our kids. It's lovely - so many beautiful descriptions of so many wonderful kiddos. Here's mine:

La Principessa Sofia Phoebe Daniella was born 4 weeks early, the day after we ordered the minivan (our first call the next morning was to Toyota, to say we would NOT be in that day to pick up the vehicle...).

We knew about the extra chromosome ahead of time, so she'd already had 3 fetal echos. Had a regular echo on Day 1 - minor heart issues including ASD, VSD, prolapse mitralvalve, pulminary stenosis, and a PDA. So far, things are healing nicely on their own, and she has not needed any cardiac intervention. After her sedated echo last summer, they dismissed us for 2 years.

She had to be "finger-fed" for about 3 weeks, until she woke up enough to latch on. Once she started nursing, she was a pro, AND she slept through the night until after her second birthday. The finger-feeding was tough, but since I knew what I was doing with nursing, I was able to hang in with the pumping. I'm not sure I would have been able to succeed if she'd been my first child.

Let's get the health issues out of the way: I stayed off of dairy for her first year while nursing. She nursed for 22 months. This year we are treating her as if she has a wheat allergy - blood tests have been negative, but we saw some significant positive results (rash went away, distended belly calmed down), and it's worth the experiment.

She eats just about EVERYTHING. Peas and Edamame are her favorites, along with Grits (EVERY morning) and yogurt. And anything that doesn't move too fast... She can use a fork and a spoon and a knife better than her 9 year old brother, and she's very ladylike with her napkin.

She will turn 4 in one month - oh my! After three very full years of Early Intervention, she goes to preschool now 5 mornings a week. She gets Speech Therapy 3 times a week, OT I think 2 or 3 times, and PT twice a week.

She loves school, and I'm told the kids in the inclusion classroom love her. They flock around her when she shows up late, and at parent events, all I hear is "Oh, that's Sofia! My child talks about her all the time!"

Miss Sofia entered preschool last year with more than 200 signs (thank you, Signing Times), and has added to her sign vocabulary over the year. She has also had a huge verbal spurt this year, and I've lost count of how many words she can say. But she will only put words together with prompting (want-more-crackers- please). We are working on building multi-word phrases. Her IEP had specified Signed Exact English, but we have quickly moved into more verbal prompting, since she's doing so well.

She's very bossy! And opinionated. If she wants you to sit down and read with her, she will say firmly "DIT. BOOK." And if you sit in the wrong place, she'll let you know. When playing ball on the floor, she wants you to have your legs in the same position as hers - which is generally not possible, since she is so flexible. I've NEVER been able to do a split, and she just sits like that!

She started walking on her dad's birthday when she was 26 months (makes it easy to remember). She can run, march, walk, jump. Sometimes she takes me through Target directing me as to how to move.

She can also climb. Everything. In the winter, she's mostly limited to her brothers' bunk bed (and then she proceeds to dismember everything big brother has on his shelf, so we keep the boys' door locked). In warmer weather, she tackles the playground at the elementary school with no problem.

We have a swing in a doorway in the kitchen, and she loves to hang over it and swing, or spin around (sometimes bonking her head on the doorframe). She also likes to hang by her hands - I have to watch her with towel bars.

She loves imaginative play, and will play with baby dolls for hours. She will also follow her brothers around with a sword or light saber - as long as she has properly accessorized with a purse, also!

She just switched from months of "Madagascar" every day - now we are stuck with "Monsters, Inc." (which she specifies with a huge scary roar).

She knows most of her colors, both verbal and sign. She still gets red and pink confused, and purple is tough to distinguish. Her favorite color is yellow.

She knows lots of animals, all by sign and some verbal (many she can at least do a noise). She has NO fear of animals, and will try to approach dogs three times her size.

She adores her brothers, in very different ways. She calls Sam "Boy" with great adoration - he's the gentler brother. Micah is more of a play organizer. She also loves her babysitter, Emily (she says "emilemily"). And she's got Mommy and Daddy totally wrapped around her little finger.

She wants to be my baby, so there are many things I know she can do for other people (like teachers or Daddy or Emily) that she refuses to do for me - putting on her shoes, getting dressed, etc. When possible, I try to have someone else work with her now (even 9 year old Sam can get her to do more than me).

She usually poops on the potty (unless she's really engrossed in something), but still wears pullups all the time. She won't always sit on the potty for me, but will for Daddy and Emily.

She wakes up early - 5:45 - and hungry and demanding. "Mama - wake - eyes (glasses) - grits - walk" and then she pulls the blankets off me. Yeah.

She totally disses most women - won't even look at my sister. But she's a complete flirt with men. I anticipate some problems when she gets older.

Recently she's gotten slightly less outgoing, as she gets more stubborn about who to talk to. But she's a charmer, and will say "hi" (or more likely "bye") to everyone. Loves to dismiss people with "bye" and sometimes a push.

In recent months she's taken to chewing on her fingers, and pciking at her nails when I force them out of her mouth. I'm at my wit's end on how to stop her.

She's been my generally healthiest kid - minimal ear infections, less issues than her brothers.

When she goes to her brothers's school, she thinks SHE goes there (perhaps she thinks she owns the place), and she makes a beeline for the kindergarten classroom. We are hoping she'll be able to join them there in another year and a half (it's a private Jewish Day School).

She knows what to do when I light the Shabbat candles on Friday nights, or when we do other religious rituals in the house. When she sees the candles ready, she yells "hat - hat", and runs to get a yarmulka. Then she comes back, gets in place, and covers her eyes (similar to what I do when lighting).

She loves music and dancing. She adores Angelina Ballerina (yuch!) and plays with Dora toys quite a bit.

When frightened or upset, she doesn't usually cry, she just hides her face and freezes. Cries usually only when physical injury occurs.

She is so much FUN to be with (unless I'm trying to nap). Oh, and she's figured out how to use my iPhone to call people on my Shortcuts list. Smart little cookie.
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