harassment encouragement, I entered the blogosphere to document the delightful (or otherwise) and unexpected moments of my younger daughter's life. Hannah was born in 1998. She surprised us with her extra chromosome, and continues to surprise us with her humor, intellect and obstinacy. She takes our breath away. As my elder daughter once wrote, when Hannah was born, our family went from ordinary to extraordinary.
January 31, 2009
They arrived on Thursday but it took me until tonight to snap a picture. Forgive the cookie crumb face, please. Yes, Nutter Butters. No, they were not tainted.
She is gradually adjusting to the bifocals. She noticed right away that she could read better, but she doesn't always use the upper lens as much as she should. She also was sneaky and switched back to her old glasses twice today. I think we need to go back and get the ears adjusted, they may be too tight.
You can see that the bridge of the frame is much lower than on a regular frame. The temples have also been lowered. This keeps the lens up higher on the face, rather than dropping down. Individuals with Down syndrome have low set ears. Regular frames have the temples at the top of the lens. With low ears, regular glasses automatically are lower than they should be for optimal viewing. Add in the typically flatter bridge of the nose and you can get an idea of how difficult it is to get glasses to fit. They just droop.
If glasses droop down, then the first thing a kid with low muscle tone does is tilt their head back so they can see through their glasses. Well, I think the first thing anyone does would be to tilt back their head. But if you had low tone, when you tilt your head back, your jaw will jut out and drop open. If your jaw is open, your tongue is relaxed (try it and feel what your tongue does). A tongue that is relaxed cannot produce clear speech. Articulation is virtually impossible. Try talking with a relaxed tongue and a weak jaw. It doesn't work.
I can see that I'm getting off on a tangent--one of my pet peeves is the notion that everyone with Down syndrome has an enlarged tongue. I'll have to save it for a post of its own! Let me just say that individuals with Down syndrome are not born with a large floppy tongue. It's not caused by glasses frames either...but ill fitting frames can contribute.
And now you know more about glasses and tongues than you did before. Aren't you much happier and enlightened with your new knowledge? (I wish there was a font that was called "Sarcasm". Then everyone could automatically tell that I'm joking around. At least those of you who don't personally know me, who can't read the inflection of my typing.)
January 30, 2009
Her love for drawing and coloring is great because she is always happy while waiting (doctor's offices, restaurants, meetings) or in the car. Like most homeschoolers, we also have a period of time on most days where we "car-school".
A few days ago she drew these, which are good examples of the things she likes to draw. (click to enlarge if you like)
January 29, 2009
The girls also participated in a class about skeletons. Here's Hannah with Mr. Bones. We got to see many types of skeletons, and several live animal examples as well. Hannah's favorite was the Screech Owl. My favorite was the bull frog.
Now back to our regularly scheduled schoolwork...I don't wanna.
January 26, 2009
Sam I am
When we finally got around to the contraction, "I am=I'm" she said:
"I am Sam. Sam I'm."
This girl cracks me up.
On to more gross topics. Proceed with caution if you are squeamish about innards or are vegetarian.
This afternoon: Dissection Class! Today it was frogs. I was busy working in the library while Nan was in class. She came out towards the end of class to find me and her camera.
I think we'll be hearing about this for quite a while. She just loves it all!
January 24, 2009
Hannah and I took a little trip last weekend to visit Wendy and attend the DSAVP's monthly meeting. We had fun visiting with the little girls at Wendy's house, and seeing all our old friends at the meeting.
(As long as they sit still and listen! See previous post about noisy preschoolers!)
There was a visitor at the meeting who came to talk about her experience with Special Olympics. Amy is 30 years old and participated in the National Special Olympics. She was terrific! I love meeting adults with Down syndrome. (and pretty much anyone else with Down syndrome...)
I was healthy on Tuesday, so Hannah and I went to our friend Grace's house for an inauguration party. It was a fabulous time sharing the joy and excitement of the day with several families!
Hannah was finally fitted for her new glasses--they should be arriving within a week or two. We chose the specs4us frames even though the options were limited (only two of the frame styles come in her size, and only one of those can carry bifocal lenses). It's hard to find frames that complement Hannah's coloring--most the girls' styles are pink, red or purple. These new frames are burgundy. Since we're under strict instructions to have frames that absolutely fit, we have to make some fashion compromises!
This week, while I've been sick, Hannah has been studying several cookbooks we borrowed from the library. I guess she'd like to have some real food rather than hunting and gathering in the pantry. She has made a list of menu options. Friday morning she wanted to make this:
She only needed a little help (separating the egg--she doesn't like yolks).
Tonight she has plans to make "Perfect Pasta" (ziti and Italian sausage). I think that will require a little more intervention on my part! If I play my cards right, maybe over time I can abdicate my position as Queen of the Quitchen.
Hannah was scheduled for her CPAP sleep study this Sunday night. I decided to postpone it because I fear she'll be coming down with my cold. She has a cracked lip, which is usually a sign that a cold is coming soon. And even if she doesn't, my cough will wake her up during the night! She is re-scheduled for February 8th.
Now I'm being paged to help her retrieve her saved Princess Wii game so she can play again...lazy Saturday for us.
January 19, 2009
January 16, 2009
Inside and out
Hannah does not fit the stereotype of “happy, easy going, sweet” individual with Down syndrome. I don’t know many people with Down syndrome who do. I would characterize Hannah as “ornery, funny, ridiculous” (of course I say that lovingly). She can be downright mean as well. Today, however, she said the sweetest thing.
Hold on to your hats now! Our family has joined a gym! This afternoon Chris and I are going to have our “orientation”. No, I am not excited. Neither is Chris. Hannah is though, because there is an indoor pool, even a big water slide! And there is a kids’ place to do games, watch videos and arts and crafts. I was preparing Hannah for her time in the Kids’ Gym. I mentioned that probably all the kids there will be younger than she is, and it would be a good time for her to practice being nice to them. (She frequently gets irritated by preschoolers—they are noisy and intrusive—toddlers are even worse. Babies are acceptable, even wonderful, as long as they are quiet.)
January 15, 2009
Fully Fund Medicaid Waivers for the Developmentally Disabled
The last day of voting for the Ideas for Change in America competition is today! On Friday we will present the top 10 ideas to the Obama administration at the National Press Club in Washington, DC. We'll then connect the winning ideas to leading nonprofits and launch a series of national advocacy campaigns to turn each idea into federal policy.
You have voted for the following idea:
Voting ends at 5pm Eastern this Thursday, Jan. 15.
We started the Ideas for Change in America initiative in the hope that we could translate the energy behind the Obama election into a citizen-led movement for change around the major issues we face. With over 500,000 votes thus far, each of you has helped deliver a clear message to the Obama administration that the American people want to participate in their own government again.
For that, we thank you. And we can't wait to work with each of you to continue this momentum after the competition ends.
In the meantime, best of luck for each of the ideas you support!
- The Change.org Team
She also likes to make up her own impromptu lyrics. One of her favorite songs is, "I'm a Believer" (Monkees). The song goes, "I thought love was only true in fairy tales....", and she might sing, "I thought Mom was taking me to a restaurant..."
Then there are songs where she tries to sing the lyrics but she can't quite figure out what they are. There is this song about "The Wheels on a Big Rig" (Trout Fishing in America), where they count up to 18 in different ways--backwards, by even numbers, odd numbers, divided by pi, etc. First off, Hannah has been interpreting the lyrics as "Wheels on Big Red"--isn't that a gum? Secondly, I think that she just doesn't understand the song. When they sing that they're going to count the wheels in Roman Numerals she sings "Let's count the wheels in Ramen Noodles!"
January 14, 2009
Barry Baker lived in Brighton, England
Are people with disabilities not worthy to live? Expendable?
Go to Dave Hingsburger's blog to read his post for today.
January 13, 2009
A thousand pictures is worth one word
January 12, 2009
Back to School
I'm just going to go through how Hannah is doing with some of her academic subjects and other activities. It might sound like a lot of stuff, but really, we rarely "do school" for more than 3 hours a day, and usually that's only three or four days a week at most.
We always take a decadent amount of time off from homeschooling over the holidays. Something like six weeks! We had a few days last week where we sat down and fiddled around with book work, to get our feet wet. But today we hunkered down and knocked our heads together and got some good work done.
Hannah is working on alphabetizing words and looking them up in the dictionary. For Christmas she/we got the game Bananagrams. Since she's not much of a speller, we used the tiles today (similar to Scrabble tiles) to make her spelling words rather than writing them out, and then put them in alphabetical order. Later we organized all the tiles by letter and made a graph of how many of each letter there were. To count them, we put them in Numicon shape order. It was nice to see that the school break did not slow down her numeracy knowledge!
In math we are working on learning "doubling". She also is getting quite comfortable with tens so I know hundreds won't be far behind. She still favors "story" problems.
I'm glad that Hannah is getting more independent with her language arts work. We are using the Pathway Readers and workbooks. She has a workbook page to do before she reads the chapter, and one or two pages to do after the chapter. The workbook pages focus on comprehension, some phonics, and other grammar topics. I'm not big into grammar. In fact, I never taught my older kids any grammar. Everything they know about grammar has come from studying a foreign language! I really like the Pathway readers because, even though we are obviously not Amish (really?), the stories are sweet and not cluttered with social overtones.
Hannah is almost finished with her book on maps. She has really enjoyed learning how to find things on a grid and following directions on a street map. I will have to find another book for her. This one is for Grade 3, and I don't thinks she's quite ready for the 4th grade book, so I'll have to look for a different publisher. In addition to the geography book, she's been working on memorizing the States and can point out about 30 of them on a blank map.
We're still doing Handwriting Without Tears to work on getting smaller print. We still have not gotten her new bifocal glasses due to various roadblocks, but hopefully later this month we'll have it all sorted out.
For reading she chose a Magic Tree House book. We had been reading a Boxcar Children book before our break, but that was a very slow process, the font is small. For pleasure reading Hannah prefers easier books like Arthur or Magic School Bus. I have no idea what reading level she's on, but I'd guess it's somewhere towards the end of 3rd grade.
We are also studying Health. Hannah is developing into a young lady, and we are learning about the changes in her body. I am hoping we won't need this information for at least another year, but she is growing quickly and there is no way of telling. She is an eager student--of course--it's "medical". I am using the book "Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality". I posted about this book a few months ago, and I still love it. It is appropriate for preschoolers on up through teens (even adults if they have not had enough appropriate instruction). Don't be put off by the title--there is good information in it. I really like the materials and worksheets in the appendix.
Today was the start of a new session at our local homeschool enrichment center. Hannah is in a dissection class. She is really excited about this! Today they dissected an earthworm (with a lab partner). I was not in the class, but the teacher said Nan asked some very good questions (I know one was, "Where is the brain?" because I could hear it out in the waiting room. When she came out of class she said, "Guess what Mom? A worm has ZERO brain!"). Did you know that a worm has five hearts? I did not remember that from 7th grade science. I think they are not really hearts, but something like an aortic something (I am so precise...it's a wonder my kids ever learn anything!).
Hannah's other new activity for Mondays is a dance/movement class called "Miracles in Motion". This is the first class/activity that she's been in that is for kids with special needs. We went to observe it in December, and she loved it. I was skeptical about it since the ages range from 5-17. There are only about 7 kids in the class, and the dance instructor has an adorable two-year old boy with Ds. Hannah comes out of the class proud and happy.
Piano lessons started last week, so Hannah has some new pieces. Her new sheet music is titled "Circus Jugglers". As challenging as it is for her, she is quite enthusiastic since the circus is coming to town next month! When she was younger she wanted to be a ringmaster when she grew up.
Swimming lessons are scheduled back-to-back with Theater class, so we can knock them out in one trip. We live sort of out in the middle of nowhere--it takes 20-30 minutes to get any place, so I try to consolidate trips. Our busy days are Mondays and Thursdays. For the most part, we are flexible the rest of the time--taking in a homeschool park day or go bowling with friends in the afternoon.
Now I'm tired just thinking about it all. Maybe it's time for another school break?
Chris started his semester today as well. He is taking Chemistry, Biology, Human Development (Psych), and Logic at the community college. He's also taking German 4 online and English Literature with me. He will be starting his Scuba course soon. For a Christmas/Graduation present my Dad (almost 76 years old!) is taking him on a Caribbean Scuba trip this Spring! Dad needs to re-certify--it's been more than a few years since he last went diving.
Kate is back in Minnesota, wanting a dog sled to get her to and from class! There's plenty of snow and frigid temperatures there! Her school has a 4-1-4 schedule, so in January she only has one class for a few hours every day for several weeks. She's taking Music in the Digital Age (or something close to that). She loves the January term because she likes to focus on one subject at a time and really delve into it deeply. She wishes it could be this way through the whole school year. She'll be home again in early February for another break before her final semester.
Coming soon: Hannah's Photography Gallery!
p.s. the Praying Mantis was laid to rest over the weekend. She was so interesting! We'll see how the eggs do in the spring!
January 11, 2009
Of course, her first meeting was all about cookie sales, which start on Wednesday...so if you're in the mood for a cookie (or several boxes!), you know where to find her (or me, and I'll pass on the info).
January 8, 2009
Hannah is scheduled for another sleep study later this month. They'll be giving a CPAP machine a test drive to see if Hannah will tolerate it (she will if a doctor tells her she has to!).
Don't you want to have fun like this?
Hannah really doesn't mind the actual sleep study, it's getting off the sticky stuff that they use for the EKG leads that really bothers her.
From my point of view, the worst thing about sleep studies is that I get to sleep on one of those "comfortable" fold-out vinyl chairs. And get approximately 4.5 hours of sleep. You'd think that they'd encourage sleep at a sleep lab! The poor technologist works all night, coming in and out of the room to adjust wires and leads. Then he wants to go home in the morning! At 6 a.m.! All I want to do is sleep a couple more hours. Instead, while it's still dark out, we have to unhook the 20+ wires and take off the O2 and CO2 monitors, pulse oximeter (Nan's favorite--she likes to pretend she has a glowing finger like E.T. "I'll be riiiight heeere."). Getting those adhesives off gently takes a while. Then Hannah and I usually head out to IHOP and come home for a nap.
I am looking forward to this (hopefully) last sleep study. It is in a free-standing sleep lab, and I will get my own bed! Ahh, the decadence of horizontal sleeping! Thank you, VCU!
I liked this doctor, but he didn't really tell me anything new about Hannah. I was interested to hear his statistic that 80% of individuals with Down syndrome have sleep apnea. He also added that most sleep doctors believe that the other 20% also have apnea, but the doctors just were not able to catch it!
Apnea was not a surprise to us. We can sit and listen to Hannah stop breathing. She is quieter now that her tonsils are out; not as much snoring. But she does stop breathing frequently. We expect Hannah to need some sort of positive air pressure device for the rest of her life. I'm wondering how much extra energy Hannah will have once she adjusts to the machine. This could be trouble!
Update on Fish-ka-bob: Yes, it is the fish's name. For short, Hannah's been calling him "K-Bob".
January 6, 2009
One of the fish (Nemo) died a couple months ago, so yesterday we finally bought a replacement.
On the way home from the pet store Hannah was trying out names for the new fish. It, apparently, is a boy.
Here is a partial list of naming options:
Goldie (when questioned whether the fish was actually gold, the answer was, "Oh yes, mom, gold is a kind of orange.")
Robert (the guy in "Enchanted")
And then, the best fish name I've ever heard:
January 3, 2009
January 2, 2009
The Planets (according to Hannah)
(she always turns things into medical terminology!)
January 1, 2009
Happy New Year!
We had a very nice Christmas, with just enough joy and just enough relaxation. Hannah's favorite gifts were her very own digital camera and a Playmobil hospital. I should have chosen a camera with a rechargeable battery--this girl likes to take pictures!
Katie's winter break from college has been filled with doctor's visits to complete her Peace Corps paperwork. She has been offered a nomination to work in Special Education the Mid-East, and we are very excited for her! Kate also has found time to visit with friends and spend plenty of time with Hannah.
Chris is spending the week with friends in North Carolina, so he missed our big party last night! We have a history of hosting a "New Year's @ Nine" family party. Everyone arrives about 7:00, but we move the clocks three hours ahead and celebrate "midnight" with crazy hats and noisemakers. Everyone can get home to put kids to bed at a reasonable time and nobody is on the road when the crazy people are driving. This year we were a little ambitious...we were expecting 47 people! And 27 of them were kids!! I never took a complete headcount, but I think we were only one person shy.
Our house has had a revolving door of guests for the past two weeks. It's been fun to see family and friends. We've also had a longer-term guest--a tiny two year-old girl with Down syndrome. We are providing respite care for her and it is a joy! She is a delightful baby, crawling, cruising, and starting to talk and use sign language. She's about the size of a 10 month old. I'd love to post her picture, but really don't think I should, so here is a series of pictures that don't show her face but do show how cute she is!