Oh *&%#

Today was review for my first anatomy test, which will be next week. Four words...

I am so screwed.

Answer of the day

Molly asked: "What's one thing you wish people knew about DS?"

This might sound a little obscure, but I wish that people knew that if a person has DS, their ability (or inability) to talk has nothing to do with their ability to understand and comprehend. I have one friend who's daughter hardly talks at all. At 14 years old, she only says what is really important to her, and does a lot of grunting and growling. And yet, she reads and comprehends above grade level, loves math, and is a fantastic bowler.

I actually know a lot of people with DS who are like this, and everyone sells them short. Remember the old saying, "Never assume ANYTHING!"

Angela talks A LOT! She talks incessantly. Often she's talking to people I can't even see (the Jury is out as to weather or not SHE sees them!) Driving in the car with her can be painful to your brain unless she's sick and falls asleep. And yet, for reasons unknown to us, she doesn't read very well. Actually her reading is regressing I think, partly because she HATES to read. We have yet to find something that interests her enough to read about it. (can you tell this frustrates me?) She hates to write too, though that is due to the damage to her fine motor skills done by a stroke. She will pretend write, the same way a typical child does around age 3 when they're just getting interested in writing. But Angela will use a computer and do some writing using a keyboard. It's still like pulling teeth to get her to do it though. Angela understands pretty much everything you say to her, and she will joke with you, and harass you. But don't expect her to read you a story!

ummmm...uhoh?

This morning I had to wake Angela up after 14 hours of sleep so we could go to bowling practice. She dragged herself out of bed, got dressed, a shower and ate breakfast. Other than seeming sleepy, she was fine. She then slept all the way to bowling (about a 15 minute drive.) Hmmmmmmmm

After bowling we went to swimming. She normally swims 60-90 minutes depending upon which of her friends are there. (if a good friend is there she'll swim longer because after doing laps they get time to horse around a bit.) Today she swam about 45 and was ready to get out of the pool.

We got home at 12:25, and she was asleep on the couch at 1:00. It's now 4:00 and SHE'S STILL SLEEPING!!!!!

I want to go feel her forehead, but I don't want to wake her up since the house is so peaceful. And yet...I worry. H1N1 is in full swing in our area. I just today found out a girl we know who has DS is in the children's hospital in critical condition, on a vent, in heart/lung failure due to complications from H1N1. This flu is a very scary one for those of us who have kids who are vulnerable to respiratory problems.

And so, Angela sleeps. I'd appreciate a prayer or two that whatever she's fighting off goes away quickly, and that it's NOT H1N1!

Film prize for actor with Downs

Very cool article in the BBC! A must read!

A Spanish actor with Down's syndrome has picked up the best actor award at the San Sebastian film festival.

Robert Pio Hajjar

Motivational speaker Robert Pio Hajjar tells it like it is. Oh, by the way, he has Down syndrome.

Q & A time

I have nothing clever or witty to say. No humor found in life this week. And, since I feel like I'm writing to myself, I'm having trouble writing. So, it's time for another Q & A. Last time only two people asked questions. Hopefully this time more people will come play with me, and I'll come up with something else to write about!

Volunteer Corn

I first met my friend Tamara almost 4 years ago. One of our puppies had come back to us, and Tamara's family, including her son Shawen, (who has Down syndrome and is the same age as Angela), was ready to add a family member to their home. They're from southern Illinois, and I'm in Minnesota, so we both made a road trip and met in Iowa. Since then, Tamara and I have gotten to be good internet friends, and it's been fun watching Shawen grow up through is mom's blog.

This morning Tamara writes about "Volunteer Corn". A message worthy of spreading!

Woman with DS swims Boston Harbor

I had the pleasure of meeting Karen Gaffney a couple years ago. A very neat young lady, and an exceptional athlete too!

Competitive Swimmer Karen Gaffney to Complete 8-Mile Swim Next Week; Media Invited to 'Ride Along'

BOSTON, Oct. 1 /PRNewswire-USNewswire/ -- The following is being released by the Massachusetts Down Syndrome Congress:

WHO: Karen Gaffney, an accomplished swimmer/athlete and the first person with Down syndrome to complete a relay swim across the English Channel, completed a 9-mile swim across Lake Tahoe, and multiple competitions across San Francisco Bay.

WHAT: In a unique and never-been-done-before fashion, Ms. Gaffney will challenge herself to an 8-mile swim across Boston Harbor to raise awareness of Down syndrome and undoubtedly prove that the genetic diagnosis does not equate to a lack of abilities -- rather -- a show of amazing ability. Gaffney will follow the route of the 'Boston Light Swim,' a local tradition in the region since 1907. In addition, she will be an honored guest at the Massachusetts Down Syndrome Congress (MDSC) Buddy Walk and Family Picnic being held the Sunday following her swim.

WHERE: Boats chartered for the media will launch at 8:30 a.m. from the Boston Harbor Yacht Club (1805 Columbia Road, South Boston) towards Little Brewster Island where Gaffney will start her swim. Boats will follow Gaffney throughout her swim past George's Island and Rainsford Island, under the Long Island Bridge, around Thompson's Island and completing at the L Street Bathhouse (Curley Community Center; M Street entrance, 1663 Columbia Road) in South Boston approximately 4-5 hours after start. Those interested in cheering on the swimmer can gather on the beach of the L Street Bathhouse around 1:30 p.m.

WHEN: Thursday, October 8, 2009; Boats must depart on time (due to tide/currents) and seating must be immediately reserved. Gaffney will also participate in the 13th Annual MDSC Buddy Walk on Sunday, October 11.

WHY: Gaffney is undertaking this effort to celebrate Down Syndrome Awareness Month (October) -- so decreed by Massachusetts Governor Deval Patrick last year -- and to prove that those with Down syndrome can accomplish their dreams. Now 31 years of age, Gaffney has successfully mastered a string of 'firsts,' completing 16 swims across San Francisco Bay - including the popular "Escape from Alcatraz" relay triathlon. In September 2007, she successfully navigated a nine-mile swim across Lake Tahoe and became the focus of a DVD documentary, Crossing Tahoe: A Swimmer's Dream. Gaffney opted to swim Boston this year to also raise funds for the Massachusetts Down Syndrome Congress and its support programs leveraged by thousands of families across the Commonwealth.

**To support Team Gaffney, visit http://mdsc.kintera.org/gaffney.

CONTACT: Massachusetts Down Syndrome Congress, 800-664-MDSC

SOURCE Massachusetts Down Syndrome Congress

31 for 21

Here we are again. October. The smells of fall have finally arrived to Minnesota. The weather has gotten cooler, school is in full swing, and Angela can now legitimately talk about Halloween. (She started in June!)

October is also Down Syndrome Awareness Month. For the past 3 years, Tricia over at Unringing The Bell is heading up the 31 for 21 blog challenge. During this challenge, those of us who have an interest in the Down syndrome community commit to blogging every day during the month of October to raise awareness about DS.

In past years, I haven't always made my posts DS related. Why? Because my life is not ALL about DS. (though I'm sure sometimes it seems like it!) My life has many facets, the world of Down syndrome being just one of them. I don't know what I'm going to do this year, but I do know that I'm commited to the 31 for 21 challenge. If you'd like to join us, please visit Unringing the Bell for more details.

WOW

Ukraine's Got Talent....sand art depiction of the effects of WWII on Ukraine, and really all of the former Soviet Union. The songs the the story along with the art. Beautiful, emotional, extremely sad, and Amazing!

Repost: Power tools

I'm reposting this, because right now, sitting in my garage, is this very machine again!!! Seriously! Oh, and guess what? You can wash AREA RUGS With them! Yep! I couldn't believe it either. Bummer that they take days to dry though, because my attention span isn't really that long. Oh, and Dean got a new toy this weekend too, I'll tell you about it later.

.........................................

Insert Masculine Laugh Here

I'm talking about the laugh made by Tim Allan in "Home Improvement".

I have owned a handful of houses in my adult life. With home ownership comes power tools. But today I discovered a tool I'd never owned before. (still don't actually, as this one belongs to my brother in law.) It is a called a "Pressure Washer". Is it ever a ton of fun! I know lots of people use these every day, but this was a new thing for me! Warning, if you are prone to obsessive compulsive behavior, a pressure washer is NOT for you! Why? Because if you touch it, you will not be able to put it down. But I didn't know that today until AFTER I touched it.

So this thing has been sitting in our garage for a couple of months, waiting to go to said BIL's house. I had suggested to Dean that I might use it sometime to wash the floors in the 3 season porch (aka the puppy room) before our big party. Then today we were at Home Depot (I swear we're there every Saturday and Sunday morning!) and I was eying new cushions for the lawn furniture. I asked Dean "Do you suppose I could just take the old ones and spray 'em down with that pressure washer thingy?"

That was just the beginning.

When we got home, Dean pulled the thing out of the garage and showed me how to start it. He turned it on and started spraying off an old railroad tie at the base of our front deck, wiggling the wand back and forth, making marks all over in the wood. It only took me about 5 seconds to see that he was doing it all wrong of course. I took the wand from him, adjusted the spray, and proceeded to follow nice straight lines down the length of the board. As I did so, images of other similar objects came flashing into my head. Things that have been yucky looking for years that I could spray down and make new again.

The 20 year old railroad ties now all bright and shiny new looking, I headed for the back deck, lugging hoses and the thingy along with behind me. I removed all the deck furniture from the back deck, threw away all the junk flower pots and other junkie looking items that have collected back there, and turned on the machine. It is amazing to me how dirt collects over the years...on wood! Even green mossy/slimy stuff. I meticulously sprayed down each and every board, revealing brand new boards that had been hidden underneath the gunk. It occurred to me that this was MUCH more fun that stripping the wallpaper in my kitchen, a project that still sits nearly, but not quite, completed.

With a deck that now looked new, I accidentally aimed for one of the rocks on the retaining wall. WOW!!! When you spray ROCKS they turn all kinds of colors! I sprayed 10 or so of 'em before I realized the pressure was going to make the wall fall apart and that I'd better not do that anymore. Instead I grabbed those lawn chair cushions and started spraying those. They do look better, but they do not look good, and so I'll have to continue to work on Dean about getting new ones before the party. The furniture itself though, now THAT stuff looks great! And here I was thinking about throwing it all in a dumpster! I even sprayed the cement steps in back, making the cement look like it was just poured today. Interesting.

Next came the front deck. This area has been bugging me for quite some time. Somehow it is a collection spot for anything that gets emptied out of vehicles, or stuff from the yard that doesn't yet have home. Basically it is "flat surface disease" that has struck a very large, outdoor surface! It drives me nuts when people come over and on their way to the door they're walking past coolers, boots, a crappy looking grill, old empty planting pots and a throw rug that has been tossed out the door because a dog puked on it. So I grabbed the wheelbarrow and hauled away all the shed-worthy items and tossed the rest.

I sprayed down the cement step and discovered it looked better dirty. (oops) Under the dirt were splotches of paint, and bleached looking areas in the shape of paint cans. I sprayed down every board on the deck just like I'd done on the back, and just like the back it looks awesome! (it also needs to be re-stained. LOL) And about those rugs...the machine works great on those too, and they're now hanging to dry over the railing. I so wish I'd thought to take before and after pictures. It really is amazing. Later Dean and I were headed for some dinner, and I told him, "We need to get one of those machines!" He said there was no need to, since I'd now sprayed down every possible item. Little does he know what that thing could do inside the garage!

Psychologist & Patient

So, I have to write this paper. Not a "Paper" as in research and stuff like that, but a dialog between a psychologist and his patient about time management. Seriously? I get to play the psychologist? I wanna wear a cool suit coat while I do it, is that alright? Can I also imagine a couch for my patient to sit upon? Because in the movies, all psychologist have one of those funny chaise lounges, right? And, remember when they used to always show the patient getting hypnotized and stuff? Wait, maybe that was just in the movie "Sybl"? (oh, and doesn't the mention of THAT movie bring back horrible images????) Anyway, I put off writing this thing till the last possible minute. Bet it will make my instructor wonder if I was paying attention to our classroom discussion about "Time management skills".

I really wanted this dialog thingy to be a little bit funny. I mean, can you imagine being the instructor and having to read through all these things, when...(insert sound-byte of angels singing) she comes to my paper! So, I asked The Bloggess if she would like to be my patient and help me with the patient end of the dialog, since I'm pretty sure she might have had experience in that department. Unfortunately I don't think she was interested, and really my last few posts have shown absolutely no humor at all (not counting the one that links back to her blog!) so she'd have to dig a bit to find anything here that would make her think she'd want to write something with me. Besides, she's a paid blogger, and I'm "just a blogger", so...well....you know.

Anyway, I wrote the thing, and it is SO BORING! Like you can totally see some boring old stuffy psychologist in his dark office, with all heavy velvet curtains closed, and dark wood paneling on the walls, checking his watch every 30 seconds to see if, by some miracle, this boring woman is going to get out of his office already!!!! I am always good at finding the humor in any situation, and yet, I couldn't find it in this dialog. Oh wait, it's FAKE! I forgot that I made it UP! It is not REAL! When Angela starts talking about "I have a soccer tournament tonight!" I have to remind her, "Angela, you don't play soccer. What you're talking about is 'pretend', but right now we're talking about going to school, FOR REAL!" And then she's all like, "Mom, It IS REAL!" while tapping her head as if to say it's all up there in her brain, so it must be real.

But my psychologist and patient are NOT real. They are PRETEND, just like Angela's soccer tournament.

So my psychologist is supposed to help the patient come up with ways to solve some of her time management problems where balancing school, family life, and work are involved. Lets just say the husband in my make believe family was not doing ANYTHING around the house, and between work and school the wife was actually gone from the home more than he was, only they didn't realize it. So, since I have an emotionally stable fictional family, and the husband could win "Father of the Year" award for his willingness to help out of his wife would just ask, the psychologist in me was able to get everything all worked out!

I am DA BOMB of a psychologist!

A boobie kind of blog

Ok, if you are in need of some humor tonight (or..er..I guess it's technically morning now.) you MUST go read this blog! (by the way, thanks Tom for posting it!) But, don't stop there, cuz the CoMMENTS are just as hilarious as the blog post! Oh, but do NOT read out loud with kids around. Don't say I didn't warn ya! There are bad words, but just read past 'em, because it's still funny.

So, without further ado, for your reading pleasure: CLICK HERE

Email Problems

Hey! I am having server issues! Apparently emails that I've sent out aren't getting to the recipient. Instead they're lost somewhere in cyberspace!

Shelley, I've emailed you 2 or 3 times, and assume you haven't gotten then because I haven't heard back from you. Please tell Andrea I emailed her as well, and feel free to pass along my phone number.

Linda (Lund) I emailed a response to you.

Renee, I've emailed you a couple of times.

Ann, I've emailed you.

I have no idea how to fix this, but it's becoming a problem! I've emailed assignments to professors and they haven't received them. Lovely. NOT!

Homecoming

This past week was Homecoming week in our school district. Since Angela is now in 7th grade, and her middle school is attached to the high school, she's become much more aware of some of the social things that go on outside of the school day. Dean and I decided it was time to get a little more involved with them, show some school spirit, and go to the game.

Angela LOVES sporting events. She loves cheering on the home team, and she loves the energy. But mostly, she likes the food. LOL When we bought our tickets she was a little miffed that there were no hot dogs coming out of the ticket window and complained, "What? No food???" Of course, we had to walk past all the food to get to the bleachers. Poor kid. She is so deprived.

So Angela, Dean and I enjoyed the game, and the spirit that comes with school sporting events.

However, I have to admit I was distracted, and having a hard time.

While Angela and Dean were watching the game, I was watching all of Angela's classmates run around without their parents. The girls trying to figure out how to flirt with the boys. The boys totally oblivious. The giggling and whispering, and squeals if "There he is!" as one group went chasing after another. I loved their clothes, and their hair. Their tiny jeans, that I bet didn't need $30 worth of alterations for them to fit. Angela needs the zippers removed and replaced with velcro, and about 12-14 inches off the length.

All the while, Angela sat between us.

Several of her friends said hello, but nobody invited her to come hang out with them. The mother of one of her friends was sitting near us, along with a much younger sibling. Her friend came and got her little sister and brought her to the concession stand. A few minutes later they came back and the little sister was handed over to her mom, while the classmate took off with her friends again. Later, on the way home, Angela said, "Maybe next time S will take me to get a snack?"

Oh man....my heart ached with her.

Our district is HUGE, with 15 elementary schools, 5 middle schools, and 3 or 4 high schools. There were thousands of people at last night's game, and there's no way I would have been able to let Angela go on her own, but I know that in the company of friends she would have been fine.

So, after I had my pity-party cry, I decided Angela needs to start going to all the home games that she can. There aren't quite so many people at those, and I could start to give her a little more freedom. And, if we always sit in the same area, she'd learn very quickly how to find her way back. Once she's comfortable, (and I'm comfortable!) and her friends see her in a different environment other than school, maybe some more social stuff will start happening for her.

Ok, pity party OVER! Time to move on!

He Arose

This brought me to tears!

Thanks for sharing Renee!!!

Note to self

The next time I have a decent amount of time to blog, remind me to tell you about the tailor, free dinner, and behavior management. (3 different posts!)

2:20 a.m???

Why am I up??? Because an hour ago I finished my homework, and went to bed, only to lay there thinking about several VERY important things that MUST get done tomorrow, and freaking out that I would forget one of them! My heart started to race as I thought of all these things, and then kept remembering MORE!

Finally I got out of bed, made a list, and set it on the kitchen table. I put an exclamation point next to the couple of things that were most important. Then I realized every one of them needed an exclamation point. Then my heart started to race again.

And so, here I sit, because I can't wind down enough to get to sleep.

So, what are these important things that have to get done tomorrow?

Here's my list:

Pay the garbage bill, or they don't come on Friday.

Pay my health insurance premium or I don't have insurance for October.

Write a 500 word essay that's due tomorrow. (500 words is nothing, it's the topic that's a problem!)

Go online and fill out the rest of the financial aid forms before I get kicked out of school before I even take my first test.

Send a package for an order that came in yesterday.

Not on the list is "Take Angela to Sos", and "Step Class". (I have the feeling the step class is going to fall off my list, because I'll be too preoccupied to pay attention, and I'll end up tripping on my step and fall flat on my face!)

Oh yeah, and take a medical terminology test online. Oh, and be a mom to Angela. Oh, and be a wife, and think about what we're eating for dinner. Let the dogs in/out a few times.

Who's idea was it to go back to school, anyway???? One week. I have only been back in school one week. I'm not exhausted though. In fact, I've been quite energized! ALL the laundry is done, and the house is mostly clean. How can that be????? Those who know I have narcolepsy will laugh when I say, I'm hardly sleeping at all. Not because I don't want to, but because my brain just doesn't stop when I need it to. And yet, I'm afraid to take anything to help me sleep BECAUSE of past experiences. Before long it's all going to catch up to me, in a really bad way, I'm sure.

And now, I realize in the time it took my to write this post, I could have paid those two bills if I knew exactly where all the information was! LOL

Alright, enough. I'm going to try that sleeping game again.

I am struggling

It's just with one class, but it's one of my bigger classes. Of course, it's too late to drop the course! UGH!

It doesn't help that the supplemental disk, which holds all the review material, is lost somewhere in my house. I know exactly when/where I saw it last, and then, POOF! It's just gone! I have turned the house upside down, and if it's here, it's well hidden.

Of course, I can't move forward without that darn disk! So, if you could offer up a prayer that it turns up tonight, I'd appreciate it.

And yes, I know those who know me are laughing because this happens to me ALL THE TIME!