Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, October 31, 2008

Staying Active

Angela is involved with a lot of different activities. All my kids were. When I had 5 kids in the house, and lived an hour from everything (even the nearest grocery store was 1/2 hr away) I made a point of keeping my kids active. On the weekends and during the summer months, the TV was turned off at 10:00 a.m. The kids didn't usually get up till around 8:30 or 9 anyway, so they didn't get much, and then it couldn't be turned on again until 6:00 pm. But, during the summer the kids were rarely in the house before dark. On school nights the TV couldn't be turned on until after dinner, and then only those who's homework was done could watch it.

All my boys, even the skinny scrawny ones, played football. Some played for only a year, and others played for several. All played baseball for several years too. Tyler was in gymnastics (on a team that was an hour away, since boys teams were VERY difficult to find!) and we traveled all over the 5 state area for meets. I don't know how I managed all this with all the boys, but I did. Their dad never went to games or tournaments, nor did he get to any practices, so I must have been spread pretty thin. LOL

My goal wasn't to keep my kids busy, my goal was to keep them ACTIVE. Yeah, they could go out in the yard and toss a ball around, but we lived way out in the country with only a couple neighbors, and they wanted to play organized sports. I'm all in favor of trying out lots of different things while a kid finds their niche. You never know if you like/dislike something until you give it a try. We always had a rule though, that if they joined a team, they had to play the full season. No quitting 1/2 way through. You joined a team and made a commitment, and now the team is counting on you. No quitting...follow through and then don't sign up again next season!

So, with Angela being the only kid left at home, it seems like a piece of cake to have her involved in stuff. I'm even more determined to keep Angela active than I was my boys. Most people with Down Syndrome have a tendency to put on weight quickly and easily. There are a few who will remain thin and in good shape, but the majority will gain quickly once puberty sets in, and Angela is no exception. It's up to me to keep her active and healthy. I mean, left to her own devices she's sit in front of the TV 24/7, getting up once in awhile to act out the show. If I don't keep her active now, obesity lurks around the corner in her teens.

So what do we do to keep her active?

First, she swims at least 3 times per week, sometimes 5 depending upon how busy our week is. She doesn't always want to go. In fact, she almost always says, "Lets skip it tonight." Unfortunately for her, she doesn't get that option. No, MOM says we're going swimming, so lets go! Sometimes I have to use a lot of humor to get her into the car, and sometimes I have to bribe her, and sometimes it's really a lot of work to get her going, but never ever ever will I give in to the "lets skip it", because if I cave once, it will forever be a problem. (Besides, I don't always feel like working out, and I've caved to myself and look where THAT got me! LOL I don't want Angela to develop the same bad habits.) But once we're in the car, she's all smiles, and she LOVES to swim. When Angela swims, she doesn't just sit in the water. No, her coach has her doing laps either with a kick board or swimming one of the strokes she's working on. Then the last 15 minutes she gets play time. Her coach doesn't charge a penny, and is at the pool 7 days a week. I'm always amazed that this gift is available to us. It takes far more effort on my part than it ever did for my boys, but isn't Angela worth that? Isn't her health worth it? Besides, it's FREE! How often does something like that get handed to you???? I would be doing my kid a disservice by not taking accessing it.

Another activity Angela is in is SOS players, which is a theater group. This is a wonderful social activity for her, and yet at the same time she's learning incredible theatrical skills. She's learning to speak in front of an audience. She's learning to use her imagination (well, she doesn't really need any practice with THAT, but it's definitely an outlet for it. LOL) and she's learning even more independence. All that, for only $50 per YEAR.

Voice lessons is another activity Angela goes to. When I first got her into this, I thought, "Maybe we can teach her to sing?" Really I had NO IDEA how beneficial the voice lessons would be. Angela has a moderate bilateral (meaning both ears) hearing loss, and without her aids misses approximately 40% of everything that is said. Voice lessons are teaching her to LISTEN to what she hears, to moderate her own voice, to control her pitch and volume. It's also another form of speech therapy as we work on annunciation and not leaving out words. She's learning about high notes, and low notes, and her teacher Debbie and I are both learning how Angela processes some things that I never knew! When I first started looking for a voice teacher, I got pretty frustrated at the responses I received. Lots of comments like, "I don't work with kids like that." or just plain no response at all. But Debbie's response was different. She took it as a challenge, and welcomed Angela as a student. She's been very creative in finding music that is with Angela's very limited vocal range, and clearly has a heart for ALL her studends. And, voice lessons are CHEAP..only $15 per week for an incredible form of auditory training and speech therapy. LOL

Next week we'll be adding therapeutic horseback riding. My hope is that this will have an effect on her balance, strength and coordination. It should affect her self confidence as well, but Angela is a pretty confident kid! I don't know if she actually NEEDS help in this area. LOL There is a whole other world of vocabulary, sights, sounds and smells associated with horseback riding, not to mention working on responsibility. She'll be assigned a horse, and will be responsible for making sure the horse is brushed and cared for before she leaves each day. Right now we're looking at twice a week, but who knows if that will change. There are several adaptive horseback riding programs around, and they charge an arm and a leg! This place is only $45 for an hour lesson, or you can buy packages at a discounted rate. (we're very fortunate to be able to put this on Angela's waiver!) And..it's close!

Angela bowls for her special olympics team. During the practice season she bowls twice a week...once with the family and once with the team. During the off season we go a couple times a month as a family. She finally got her own ball this year, which she is thrilled with!

During the spring and summer she does Special Olympics track and field. This is pretty funny to watch because Angela isn't much of a runner, but she sure loves participating in this! For those who really don't run there are walking events too. But, the most important part is that they're having fun and making life-long friends.

So yeah, Angela is a pretty busy kid. She has different friends at each of these activities and loves to go to all of them. (well, except for swimming. She loves the actual swimming, it's the getting there part that she hates. LOL) And really, it's thrilling to see her try hard at everything she does. And, seeing the smile on her face when she accomplishes something on her own...priceless!

Bit the bullet

I finally bit the bullet and bought Angela her own bowling ball last night. She LOVES to bowl, and is bowling for Special Olympics this year. We bowl every Sunday morning, had our area tournament a couple weeks ago, with a bigger state tournament on the coming up November 8th.

Usually Angela just uses one of the balls from the alley, but the smallest they have out is 7 lbs and every bowler under 15 seems to want those! Not only are they hard to find when there is 300 people bowling, but Angela's hands and fingers are very small, so the holes are always too far apart for her.

I originally wanted to get her a really cool ball with some fun picture on it. Yeah...that was until I looked at the price tag on them. Well, last night we picked up Dean from his bowling league, and stopped into the pro shop to see what we could get, and how fast we could get it. Here's the ball we ordered her. It's 6 lbs, and will arrive on Thursday next week, just in time to get the holes drilled and be ready to use it for the tournament an Saturday!

Thursday, October 30, 2008

Finding Support

Lately there have been several families who've visited my blog, who've recently found themselves holding their newborn as their doctor utters those words. You know the ones...the ones that say, "There is something wrong with your baby." Somehow they've found their way to my blog. I wish I could give them a hug!!! Some of the babies have DS, and some do not. All of them are beautiful, but their families are struggling, lost and confused. How I remember those days.

I've come across this website, that lists a wide array of support listservs for those who want them. You can find it here There's a lot there, so take your time and find what you need.

Tuesday, October 28, 2008

I'm going to "push play"

Really..honestly...I'm going to do it. I'm going to "push play". Even though I have ZERO ambition today, I'm going to push that button.

Does this sound like code to you? Go to beachbodies.com and you'll see what I'm talking about.

push play...push play...push play.

21 things about Angela

As 31 for 21 is coming to an end, I realize just how many days I skipped. But, while I skipped days, I still have 34 posts so far! LOL

Today I'm going to list 21 things about Angela:

1. Angela is a total tomboy. For some reason when I was pregnant with her I had dreams about having this little girly-girl, which is funny considering I am SO NOT THAT!

2. Angela is going to be a Knight for Halloween. Not a princess, not a fairy, not a cute bunny. No, she's going to be a knight with a shield, sword, helmet, and chest plate. No girly stuff for her.

3. Angela loves stripes, and will do anything to wear stripes every day. The other day she was watching "Cory In The House" while I was dozing on the couch. I heard her say, "I like that shirt!" to the air in general. I opened one eye, and sure enough, there was Cory wearing a shirt with wide stripes. LOL

4. Angela will only watch The Disney Channel. If I want her to watch a show on another channel she will for a few minutes, but only until she realizes that little Disney logo isn't in the corner of the screen, then she wants the channel changed.

5. Angela has the Disney Channel line-up for the next week memorized. Every week they run adds for things like a movie that will be on over the weekend, or a new episode of Zack and Cody coming up, and she will spend the week reminding me that it's going to be on.

6. Angela still loves Zack and Cody, although she doesn't seem to like the new show as much as the old one. Bummer for her they had to let the characters grow up!

7. Something not TV related: Angela loves to work with the dogs. Each dog knows different tricks, and Angela loves to run each of them through their paces. She also loves to do agility with them. Sadly I don't think we have time for Jr. agility this year, which she really loved last year.

8. Angela is going to be moving to a downstairs bedroom. That is, if I can ever get it cleaned out and repainted. It was the bedroom of 2 of her brothers, and there is just a lot of junk in there! She's both anxious and worried about moving to this room. We're doing it because her current bedroom is the coldest room in the house, and she likes to sleep with the door closed. The basement bedroom is the warmest room in the house and she'll be much more comfortable. That is, if she isn't scared down there! LOL

9. Angela loves to cook. Unfortunately she got a mother who does not, which means I really hate teaching her how to do it (probably because I don't have a clue what I'm doing.) but I'm trying.

10. Angela is very excited that she'll be starting horseback riding lessons in a couple of weeks. We found a place right down the road from us that will take her. One of her former PCA's would take her riding at her barn all the time, and Angela was in heaven. At this place she'll learn a lot about caring for a horse and that kind of stuff. The woman who's teaching her was a special ed teacher in a neighboring district until this year, when she decided to teach with kids who have disabilities to ride.

11. Angela loves loves loves middle school. She is SO independent there, I can see why she loves it! She moves about the building on her own, and knows where she needs to be and is all business about getting there.

12. Angela's birthday is June 6th. Since June 7th of this year she's been planning her 13th birthday party. She says she's going to have a dance party. It sounds like she's planning her sweet 16 party!

13. Angela's favorite friend is Adam (hi Monica!). Adam is turning 10 and also has DS. The two of them together are like a little old married couple. If they end up getting married someday, Adam's mom and I are in trouble!

14. I've lost count of how many surgeries Angela has had in her short life. Most of them were GI related. I know she was over 20, but I'm lost from there.

15. Angela knows where every children's hospital is within a 20 mile radious. This is a little scary since there are a lot of them!

16. As long as she's been there once, Angela can give you directions to anywhere. Last week her PCA was bringing her to swimming. He got turned around and a little bit lost, but Angela knew exactly where they were, and how to get back to swimming!

17. Angela loves swimming, but she hates getting ready to go. Sometimes getting her out the door takes some very clever thinking, but once she's in the car she's ready to go swim.

18. Angela is learning to do the Butterfly stroke, and it's pretty funny to watch. She's also learning how to put her face in, swim a couple strokes, then take a breath and do it all again. I, on the other hand, can't put my face in the water.

19. Angela does not have a favorite food that I know of. She will eat anything but eggs, but if she doesn't KNOW it's eggs she's eating, she's fine. ;-)

20. Angela has 4 big brothers. I know I don't talk about them much here, but she does! They are Robbie 22, Noah 21, Tyler 19 (20 next month) and Bryon 19. Robbie has 3 kids and lives in Southern ILL, so Angela only gets to see him a couple times a year at best. Noah lives nearby but is a stranger these days, and the same goes for Tyler. Bryon just joined the Army and is currently in AIT. Angela misses all her brothers something awful! We all wished they lived closer and were more involved with her. Being young men, I don't think they realize just how much she misses them!

21. Angela knows no limitations. She strives to be independent and just one of the crowd, and is probably one of the funniest kids I know!

Monday, October 27, 2008

Love Thy Neighbor - Or NOT!

Neighbors can be really important in your life, except that sometimes you don't know it until the moment is upon you and you have to ask their help. Our neighborhood is laid out kind of different, heavily wooded with the houses far apart. In the summer, when the trees are full, you can't even see any of their houses, but in the fall when the leaves disappear it always amazes us how close they are! LOL

My neighbor Cindy was the one who helped me last spring when I shattered my wrist. She braved the ice that I'd fallen on, and got me to the best place I could possibly go to have my arm repaired. And, I know that when Dean's wife Fae was sick and dying, they often brought meals over. I can see Cindy's house and yard during the winter, but during the summer there is only a hole through the trees just big enough to see their front door.

We have two other sets of neighbors who, although we don't know them well, I have no doubt would jump at a moments notice to help in an emergency. Like Cindy's house, during the summer I can't see their houses from ours, even though one of them is right on the street.

And of course, Dean and I would help any of our neighbors if need be. With anything!

And then there are the nutty neighbors....There are two sets of them. The first couple we have only met twice. I don't even remember their names. Well..yesterday I thought I did, but today I'm not so sure. Anyway, I think the guy has OCD. We can't see their house at all during the summer, but several times per week, for a couple hours at a time, you can hear his shop vac going as he (I think?) vacuums out his garage. When you drive by, if their garage is open and you can see inside, it's IMMACULATE! They often open their garage door, and put up a big screen instead so their cats can play "outside". I think he must be vacuuming up the cat hair or something. It's very strange, but I'd like to bring my truck down there and say, "Hey, if you really want to see progress, you can vacuum out my truck!"

And then there's the other guy on the other side of us. He's retired, and sadly his wife passed away a couple years ago. (We didn't even know she'd been sick, and felt really bad when we found out she'd passed away!) He travels a lot, so has started renting out his basement to a guy who's probably in his late 30's-early 40's.

We didn't know anyone else was living there until one day Angela was laying on her bed watching out the window. "What are you watching?" I asked, thinking it was a bird or rabbit. "The boy. The boy outside." WHAT BOY? I looked out my front window to see a kid of about 10 riding up and down our VERY STEEP driveway on some kind of scooter thing. Keep in mind, our house sits about 100 feet off the street, and he was way up at the top of our hill by the garage, then would turn and ZOOM down the driveway, right into the street. Our driveway is a blind approach. I went out and said, "Umm...hello? Whatchya do'in?" He replied in a "oh my gosh you're dumb lady" tone of voice, "Umm...riding my scooter." I then told him most people don't go into other people's yards unless they needed something, or were looking for someone to play with, etc. "No, just riding my scooter." and he left.

The next day, Dean and I were on a motorcycle ride and came back after dark. We'd just put the bikes away in the garage and unloaded everything when this voice comes out of the pitch darkness, "So, you guys ride?" I almost needed a clean set of clothes after that! It was a woman, and she was clearly intoxicated. She wanted to tell us of a biker event coming up the following weekend that we should be sure to attend, the staggered her drunken self back down the driveway. Kinda creeped me out, really.

In July or so, we were woken up at 3:30 on a Monday morning to drunken laughing as the renter and his girlfriend sat on their front porch enjoying a fire. Except that, their front porch is about 50 ft from our bedroom window! They may not have known that though, since they can't see our house AT ALL because the trees are so thick. Their laughter turned to drunken arguing, and I debated calling the police and complaining, but decided to let it go instead. After all, there's never been one thing to complain about with that neighbor, so why cause problems when they're having ONE night of fun...even if it was the workweek for the rest of the world. Dean was a bit irritated though, as he was woken up just an hour before he had to get up for work.

The following week the exact same thing happened, again, in the wee hours of Monday morning. I was just going to call the police when, in the midst of their very loud argument, there was a SLAM of the door as they moved the activity inside the house. My clock said 3:45, and Dean's alarm went off 20 minutes later.

The next week the exact same thing happened. This time I DID call, and it was soon quiet over there. But, Dean and I wondered of D. (the man who owns the home) even knew what was going on. He travels for several weeks at a time, and we never know when he's there or not. We suspected these events happened when he was gone. As it turns out, the renter and his girlfriend are bartenders, and so would come home from work ready to tie one on. Lovely.

Fast forward to today...I ordered some products from an online store last week and expected them to arrive today. I checked the tracking code and was surprised to see "delivered 10/24" listed. I never got them, so I assumed they were delivered to neighbor instead. Well, the owner was out of town, so the renter got the package. And...guess what??? HE OPENED IT!!!! Can you BELIEVE THAT? It has my name, it has my address. Isn't that...like...a federal offense or something? Not only that, but he had it for THREE DAYS! So he says to me, "Yeah, we got a package. It's videos, right?" and I'm thinking, how did he know that? Then he handed me the open package. OMG...what if, it was like...something really personal or something?

I kind of feel violated, and am tempted to report it to...someone. I probably won't though, but man, I never ever ever want to order anything by mail again!

Thursday, October 23, 2008

Order glasses... CHECK!

Yep, got 'em ordered! But I'm going to be smart this time (bet it comes back to haunt me. LOL) Before we've always ordered a pair, then they get broken or lost and we have to wait a week or more till they're either found, repaired, or replaced.

This time I ordered THREE pairs. One is covered by insurance, and the other 2 are out of pocket. Now we'll always have a back-up pair! YEAH!!!! All three frames are the same, but in different colors, so she'll be style'in!

Angela; the most responsible person in the house

Angela is the most responsible person in the house. I know this because she ALWAYS puts things away where they belong!

So for the past week I've been on a hunt for her hearing aids. I knew they weren't at school. And I was pretty sure the last time I saw them was while we were waiting for her dad to pick her up. She doesn't wear hear aids to her dads because..well..he'd loose them. And because he never has her wear them anyway. (seriously, he says trying to get them on is too difficult. Give me a break. But I digress...) So while we were waiting I realized she still had them on.

And here is where my memory failed me. I couldn't remember if I had *her* take them off and put them away, or if *I* took them off her. That was an easy puzzle to solve, because she ALWAYS puts them in her room, in their case, on her desk. I looked and no, they weren't there. That means that *I* took them off her and they could be anywhere!!!!

Being one who has a habit of shoving stuff in my pockets, I panicked. Did they go through the wash? UGH! If so, they're trash now. I always check my pockets before I wash ANY of my stuff, but things have been known to slip through the system. I went through the pockets of all my clean jeans, and still didn't find them.

I resorted to prayer for the 10th time. "Lord, I KNOW they are here in this house somewhere! I just know it! Please put them in front of me, or put the idea in my head of where to look next!" Several days went by, and still nothing, so I was convinced they weren't in the house.

A little bit ago I was in my bedroom, and for the 50th time this week was rifling through the stuff on top of my dresser, sure I had to have set the aids somewhere. My hand came upon one of my bandanas that I wear when I'm motorcycling, and as it did, a picture flashed before my eyes: Angela and I standing outside, waiting for her dad. She was wearing a jacket, and I was wearing my motorcycle jacket because as soon as she left I was going for a ride by myself. I also heard myself telling a friend of mine something about putting things in the breast pocket.

I ran to the closet, pulled out the jacket, and put my hands in the breast pocket...FOUND 'EM!!!!!

WHOO HOO! Now I can go get her fitted for glasses too, since I needed the aids to do that. THANK YOU LORD FOR ALWAYS BEING MY MEMORY WHEN IT FAILS ME, AND WHEN I DO STUPID STUFF LIKE NOT PUTTING THINGS AWAY WHERE THEY BELONG!!!!

When simple isn't simple anymore

Ok, so Angela needs a new pair of glasses. (Actually, I'm going to buy a couple pairs at once so we have back-ups! LOL) I really wanted to try the Specs4us glasses, since they're specifically designed to fit the faces of kids who have DS. Typical glasses have never worked well for Angela, which is part of the reason she's not so good at wearing them. Like most kids with DS, she has NO nasal bridge. (it's just starting to develop and is still very small) This causes her glasses to slip down so she's looking over the top of them, which defeats the purpose. Her head is very small, so to find glasses that fit the width of eyes AND her small head shape is difficult. Her ears are closer to her face than typical kids, making the bows of most glasses much too long. Her eyes are wide-set, which means the distance between her pupils is wider than in typical kids, and most glasses don't accommodate for that so she ends up looking through the inside corner of her glasses, which is not the best area to access the prescription.

The woman who runs Specs4us has worked with many Walmarts and had them order directly from her. Yeah..our Walmart wouldn't even consider picking up to phone to call and see how it worked. Nope...they're not gonna do it! I went to the more expensive place next door, and they can only order from people on their supplier list, or from this big book of ALL the manufacturers, only Specs4us wasn't in that book, so they won't do it either..............sigh..........

There is another place called Glasses Menagerie, and I know a lot of people who go there, but why in the world should I need to go across town when there are umpteen places within a few miles of me? What a pain in the neck.

And...I need to fit the glasses with Angela hearing aids. Oh, one small problem. WHERE IN THE WORLD ARE ANGELA'S HEARING AIDS???????????????????? That's only...oh, $8,000 or so that is MISSING!

Wednesday, October 22, 2008

Finally!


Well, we've been working on this for over a year, but yesterday it FINALLY happened! The behavior specialist came to visit! WHOO HOO!

First we went over all the areas in Angela's life where behavior becomes a problem and/or interferes with her making progress in learning or independent living skills. Umm...that part took about an hour. LOL Actually, Angela's been doing really well for several months, but there are still those days. And yes, everyone has them, but until you've seen Angela in action, you have no idea just what "one of those days" can be like. I had a very close relative once comment "It's amazing how one little girl can run a household." This ticked me off to no end. First of all, that person sees Angela only a couple times of year at best, and secondly, Angela isn't trying to "control" a household. Angela doesn't process thins the same way another child her age does...or even a child much younger than her. She can't say, "You know, I really hate this store and I want to leave....NOW!" If she could, we'd leave immediately because it would be fair warning that a blow-up is about to ensue. Instead, Angela just blows up, which IS her way of saying, "This is too much for me!" We don't know why she attacks little kids, we just know that she does. We also know she targets kids who are weaker than her. For example, a child with CP who she might be able to tip over easily. Many of her actions are totally unprovolked, leaving us all on edge.

Also, talking with the specialist yesterday made me realize how much we have to think ahead with anything we do with her. I mean things like, if I'm going to be telling her it's time to take a shower, I have to start prepping ahead of time for the reaction that she might have. She COULD go to the shower nicely, and if she does I better have everything ready. She COULD do the "flop-n-drop", in which case I have to have an alternative way to handle her already in my head. Say the wrong thing, the wrong way, and the shower won't be happening. She COULD get combative and start whipping remote controls around the room, or pushing electronics off the shelf, so just in case...before I even bring up the subject...I will walk around the room doing damage prevention! (ei, gathering the remotes, protecting the electronics, putting vulnerable Roman in his crate and the other dogs downstairs.) All before she even knows I'm going to be asking her to do something. Unfortunately, there's no way to predict the kind of reaction she's going to get. It doesn't matter if she knew two hours ago that "After you do (insert activity) it'll be time to take a shower." Actually, with Angela, this often makes the problem worse, as it intensifies her anxiety over whatever the thing is you want her to do. Confusing? TELL ME ABOUT IT!!!!!!

Next she told us how they develop a behavior plan. First, the observe both home and school. They work with school to learn how they implement Angela's umteen page behavior plan, and what strategies work there. Then they figure out what are her triggers at home, and how to have continuity in behavior management between school and home, and figure out what things are used at school that may not work as well at home, etc. Then they'll come up with a plan and work with her awhile on it, and tweak what needs to be tweaked, eventually training us and her support staff (PCA's) how to implement it as well.

But there is MORE! Because of Angela's age, and her disability, they ALSO work in independent living skills. As with most kids Angela is more likely to have a behavior problem with one of her parents than anyone else. So, lets use that shower for an example again. Angela spends so much time avoiding the shower, and displaying very difficult behavior while taking one, or trying to bargain for a bath instead, or just plain trying to get out of it, that it's very difficult to actually teach her the SKILLS she needs to eventually do this task by herself. Having an outsider teach her the skills is sometimes more productive. They also have proven methods for teaching the skills to a kid who has trouble learning the stuff, not to mention tools to adapt some things that are difficult for her because of her gross or fine motor limitations.

One thing I did ask is if I'm nuts. No...really...I asked that. Angela is 12, and in the house is actually quite independent. If she has clothes that don't have fasteners, (no buttons, zippers, snaps or laces.) She can get dressed herself. She can cook a couple different items, and every week is learning one more thing to cook. (all microwave stuff, no stove/oven.) As I mentioned in a previous post, this is the first year she's getting off the bus without the driving needing to SEE me, instead just dropping her off like every other kid.

So, I realized I have only about 6 or 7 years to teach her how to be alone in the house. I know...sounds scary, doesn't it? But, when she comes home from school, she's perfectly capable of doing what other 12 years old kids often do when they get home. Come in, take off her stuff, get a snack, then go turn on the TV! LOL Last spring we had the incident where I broke my wrist, and everyone was scrambling to find someone to meet her bus. Finally my brother in law answered the call and drove the hour here to do that. But now, she's old enough and capable enough, so we need to teach her.

We'll start out by developing the habits of what she needs to do when she comes home. (come in the house, drop shoes, hang up jacket, read a simple note on the table that says where mom is, get a snack, go watch TV.) Once we know she's got all this down and is RELIABLE about doing it, then I'll start not being here the first 5-10 minutes after she gets home, gradually lengthening the amount of time she's alone, working up to just an hour or...maybe 2 if I'm lucky...

Anyway, our visit was very nice, and I loved hearing the specialists impression of what she thinks Angela is capable of doing. She said I'm NOT nuts! That this is a realistic goal for Angela RIGHT NOW. Not years down the road, but right now. That really it won't take long for her to reach this goal. (probably just a couple weeks) She also says she has several clients who are "Angela, but at 19 or 20 years old" who are living in assisted living programs where they just have someone checking on them once or twice a day, but are otherwise independent. That will SO be Angela in just a few years!

Monday, October 20, 2008

Here we go again

So this morning Angela had an appointment with her ophthalmologist. (also known as "the eye doc".) She was supposed to be seen every 3-4 months to keep an eye on her cataracts, but...(I know, call me the bad mom here.) we haven't seen him in a year.

First, last year he wrote a script for glasses. Her vision in each eye was actually ok, slightly farsighted, but didn't HAVE to have glasses. What the glasses do is keep her left eye from turning all over the place. Well, we got the glasses and she smashed them a couple days later. We got insurance to pay for another pair, and those lasted less than a week. A couple weeks later I bought her yet another pair, and within 24 hours she ditched them somewhere between the bus and bedtime, never to be seen again.

I gave up on the glasses.

Well, a few weeks ago, right after I set up this appointment, her eyes started watering occasionally. She's had tear duct problems in the past (was totally missing one and had to have plastic surgery to create one, and a stent in the other one.) so I kind of hoped the problem was from that, and not eye strain. However in the last few days the watering has gotten much worse, really almost constant.

The verdict? Her farsightedness has increased, and the tearing is from eye strain. He left eye is crossing worse than it was before. Thankfully her cataracts are unchanged. "Just little flecks" is how he referred to them.

So we're back to the drawing board with glasses. Part of the problem is she also wears hearing aids, and she doesn't tolerate BOTH things on her head very well. Her ears are very small and soft, and don't really have room for both the aid AND the glasses, so this is going to be quite tricky. She used to wear in-the-ear hearing aids (wow, getting insurance to pay for THOSE for an 9 year old kid was interesting!) but she fed one to the dogs, and insurance has understandably denied paying for them again.

I'm at the point that if I have to choose vision or hearing, her vision is going to win out and we'll ditch the aids, which really sucks since she tolerates them so nicely. But without decent vision reading is very tough for her, as is writing. She has a lot of trouble with visual-perceptual skills, and not being able to focus with one eye just adds to the problem. But with hearing, we can compensate in various ways. (and she'd prefer to not wear her aids at all. LOL)

Like the eye doc said today, she's one year older, and more mature, maybe this time around it won't even be an issue. But just in case, I did have enough money for 3 pairs of glasses written into her budget, and insurance will cover one pair.

Friday, October 17, 2008

Invisible people

They say having a good imagination a sign of intelligence. If that is true, then Angela is our Einstein with an extra chromosome. Seriously, this kid has THE most vivid imagination I've ever seen.

We often have extra people with us. At least, I assume they're people, because I can't SEE them. A year or so it got to the point that I had to remind Angela that "Invisible people have to wait in the car." when we'd go to a store or something. She's also not allowed to mention them in conversations with people outside of our home. Here's an example:

Hair cut lady, she cuts Angela's hair: What do you like to do when you're not in school?

Angela: Ummm...play with Zach and Cody.

Hair cut lady: Oh, are Zach and Cody your brothers?

Angela: No, my brothers are Noah, Tyler, Robbie and Bryon. Zach and Cody are my friends?

In case you don't know who Zach and Cody are, they're characters on a Disney Channel show, "The Suite Life of Zach and Cody".

Angela often asks me to set a plate for the invisible people, even though every time she does this I say, "Sorry, I don't cook for anyone I can't see." (well, ok I don't cook for anyone, but you get the point.) When she buckles her seat belt she ALWAYS buckles the other one too, so whoever is with us that I can't see stays safe. I certainly wouldn't want an invisible person to go through the windshield now, would we? When she goes to sleep at night, it's only after a long conversation (which includes giggling and "Oh Zack, you're too funny", and other similar phrases.)

Yesterday Angela's good friend Adam went out of town. Apparently she's missing him because "he" was with us all day yesterday. In fact, the two of them built a fort in my living room, played fetch with the dogs, and had a popcorn party in the above mentioned fort. I expected that "Adam" would be with us again today.

Angela woke up before me and was watching T.V. When I got up I said,

"Good morning Angela. How are you this morning?"

Angela: Good morning mom! I'm fine!

As I turned to let the dogs out she yelled, "Wait! Don't forget to say Good Morning to Abby!"

and so now I wonder, who in the world is Abby?????

Wednesday, October 15, 2008

Angela's Birth Story

Last spring, for SOS players, Angela told her birth story. In honor of Down Syndrome awareness month, here's a repost of that post.
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For four months I have tried not to be a stage mom. I have sat back and watched Angela create a mask, and work on developing it as a character. I have watched her learn to use her voice in ways she's never thought of, both loud and soft, and in different tones. She even learned how to use a voice that could be heard from the stage.

I have to say, the director of this troup is FANTASTIC with Angela! She only expects Angela to do her best, and if that means she can only say 2 lines for her monologue, than that's all she expects her to do. But she's also a great one for adaptation, and she has figured out a way to keep Angela on the stage longer and help her through.

When Angela auditioned I had her read her birth story. She read it painfully slow, and the director helped her...a lot...but had her read the entire thing. She said Angela made it in because she didn't give up, even when she was frustrated. The other kids were assigned a monologue, but that proved to be a bit tough for Angela (and several of the other kids.) So Angela's monologue was changed to a dialog, but she wanted her to do her birth story because it's something meaningful to Angela, and thus easier for her to memorize.

So here it is, her stage debut. The beginning of the video shows The Boogaloo, which is one of the games they play at SOS. You'll see Angela wearing jeans and a black shirt. (look for the tall adult in green and you'll find Angela.) then comes her dialog with Greg. What you don't see is what happened when I stopped recording. You can hear people start to cheer in the background. When Angela heard that she turned and did her usual jump for joy that she does when she's proud of herself. When **I** turned around, I found that the audience was giving her a standing ovation! Yep, that did me in!

So...enjoy.....

So what causes Down Syndrome?

I realize not all my "31 for 21" posts have been about Down Syndrome. Hey, the rules of the game are that you can blog about ANYTHING, it doesn't have to be about DS. LOL

Anyway, I figured since this is Down Syndrome awareness month, I'd actually post something about DS, and what better thing to post about than a little explanation about what causes it? Please keep in mind this is a VERY simple explanation for those who are unfamiliar with DS.

Everybody is made of lots of tiny pieces, called chromosomes, and each chromosome carries the genes that make up who we are and what we look like, and control how our body develops. The average, genetically "normal" person is made up 46 chromosomes, which are matched up into pairs. So everyone is supposed to have a PAIR of Chromosome 1, PAIR of chromsome 2, etc, which comes out to 23 PAIRS of chromosomes.

But for people with Down Syndrome, at the moment of conception, as mom and dad's genetic material was exchanged, there was an error in duplication and the baby got an extra 21s chromosome. So, instead of 2, there are now 3. So, where the average person has 46 chromosomes, people with Down Syndrome have 47. Here's a picture of what the chromosomes look like. Notice the arrow that points to the extra 21st chromosome.


This is called Non-Disjunction Trisomy 21, and is the most common form of the syndrome, and every cell in the person's body carries the extra chromosome.

Sometimes that extra chromosome is sneaky, and at the moment of conception, instead of sitting next to it's matches, it attaches itself elsewhere, most commonly to the 14th pair. Sometimes it can stick ONTO one of the other 21st chromosomes. It doesn't just sit NEXT to them, no it sticks ONTO one of them. This is called Translocation Trisomy 21, and like non-disjunction, every cell in the body carries the extra pair. But chromosomes are touchy little things, and sometimes the extra piece attaches to different pairs, which are considered to be incompatible with life. For some reason those other pairs don't do well with extra material attached to them, and those babies don't survive.

There is one more type of Down Syndrome called Mosaic Trisomy 21. Where Non-Disjunction and Translocation happen at the moment of conception, Mosiac Down Syndrome (MDS) happens at the 2nd or 3rd cell division. That means that there will be some cells in the body that carry it, and some that do not. Some people who have MDS don't have the same features that others with DS do, and other people with MDS have stronger features. Ya just never know! People often ask me if Angela has MDS because of her mild facial features, but no...Angela has the garden variety Non-Disjunction Trisomy 21.

So what do the chromosomes DO? Well, within those chromosomes are smaller pieces called genes, which make up who you are, what you look like, your personality, etc. We know that the 21st chromosome affects organ development, because when there's an extra copy and Down Syndrome occurs, there are lots of heart defects, digestive malformations, etc. There are also distinctive physical characteristics as well. But every child is different, and where my child with DS has no heart defect, the next child might have one or several all at once.

Thanks to Down Syndrome, scientists know that Alzheimers is also controlled by the 21st chromosome. They know this because a very high number of people with DS develop Alzheimers. They also know that somehow cancer is connected to the 21st chromosome, because people with DS have a higher incidence of certain types of cancers, and for some reason they also have a higher cure rate. Now if only scientists could get it all sorted out, maybe they could find a cure.

So that, my friends, is my very short (lol) very simplified explanation of Down Syndrome.

*Karyotype picture from www.clinicaltools.com

And on a happy note

18 year old Kristin Pass, from Aledo High School in Texas, has Down Syndrome. Anf now she also has a crown. You see, last week she was crowned Homecoming Queen at school. Way to go Kristin. To read more about Kristin and her crown, you can read the article here.

An Eye for an Eye

It's stories like this that make me have trouble with forgiveness. The story is about a young man in our area who is cognitively disabled. Over the weekend he was lured into a car BY ADULTS, and brought to a remote area in the woods where he was tortured and beaten, burned with lighters, and left for dead.

How can a person forgive monsters like these? Do you think Justin can forgive them? Do you think Justin's mother and other family members can forgive them? If they're capable of that, they are much bigger people than I. I know that I haven't forgiven the woman who assaulted Angela in school last year. No, instead I'd like to plaster her name all over the news, and make sure every human resources person in every school district in the state of Minnesota has her name so she never works with a vulnerable student again.

One of the men who assaulted Justin is 33 years old, and works in a program for disabled teens and adults. He helps them get ready for school and work, gets them to and from, and cares for them when they return home each day. His employer states he's a quiet guy. I say he's a snake, lying in wait for a victim to cross his path. The others are vultures, seeking to prey on those who are vulnerable so they can satisfy the sick cravings they have for torture and control.

I say, an eye for an eye.

For now, I pray for emotional and physical healing for Justin. That the vision in his damaged eye returns to normal, his kidneys begin to function as they're supposed to, and that somehow, by the grace of God, his fears can be forever wiped away.

Monday, October 13, 2008

We're adding time! WHOO HOO

Angela is doing so fantastic in school this year!!!! So far, there has been ONE DAY where there was a potential problem. Today at conferences her teacher told me, "There was a day last week when I asked her to do something and her body kind of stiffened, and she gave me a sideways glance so I quick thought of something to ask Angela about what she was doing after school and all was well."

Wow..that is a LONG WAY from how things were going last year!

Angela is also one of the "copy" kids. She and another student take a cart and go all over school picking up/dropping off copies for the teachers. At first I was not thrilled with this job, except that it gets Angela out of the room when she needs a break. Then I realized just how great this job is!

First of all, it gives very social Angela a chance to meet EVERY SINGLE TEACHER in the building, and EVERY student in every grade knows who she is as well. She has quite a following. Wink

This job also involves all kinds of skill learning that is snuck in there:

There is a card file, with an index card for every teacher in the building. She has to put them back in alphabetical order.

The teacher name cards are color-coded, and there is a map of the school that is color coded as well. So Angela has to see which part of the building that teacher is in, THEN find their class room on the school map.

There are different keys to different elevators in the building. Angela has been dubbed "the key master" because she's the most responsible with the key. Last week the special ed teacher couldn't get the elevator to work right, and Angela showed her how to fix the problem. Laughing

She has learned that if she gets to a classroom and that teacher is teaching, she cannot talk to them. She quietly goes in and checks their copy box and takes out the necessary papers. If she's delivering copies she sets them on the teacher's desk. One teacher has treats for her on occasion. LOL

For two plus years Angela has been coming home from her HALF DAY and sleeping for 1-2 hours after school. This year she comes home and is wanting to know "What's next?" So, it's time to start adding time to her school day. On the 27th (have to get transportation arranged) she'll get an hour added to her day, and we'll see how she does with that.

Some of you know we chose her current time to come home because it coincides with when the other 6th graders go to art. Ummm...Angela doesn't DO art, and this year I agreed I wouldn't push the issue any more, as it was hell for everyone involved. Well, a week or so ago Angela suddenly became obessed with drawing. You have to realize that where drawing is concerned, Angela is at about a 3 year old level. Her people don't even have bodies on them yet, just big eyes and a mouth. Well, now she wants to go to art, because she hears the other 6th graders talking about their clay masks. So, we'll see how she does with a SHORTENED art experience.

Also, right now she leaves school before the other kids eat lunch, so she's been eating alone in the classroom. This is actually ok, because she hasn't been able to handle the school lunch room for several years. It's just too much for her and she hates all the noise and commotion. Also, with her blood sugar issues, even though she gets a snack in the morning they eat way too late for her. Well, adding time to her day she's still going to eat in the room, but when the other 6th graders eat lunch she'll have short snack with them and have a bit more social time with her friends.

Assuming there are no problems. (we are moving into winter, and she usually starts getting sick in November) then after the 1st of the year we'll revisit the issue and see about extending her to a full day. I can't wait! Maybe, just maybe, I could go back to work!

Doodle people are weird

Doodle people (as in Goldendoodle or Labradoodle owners) are a little bit weird. Everyone knows it. It happens because our dogs are very much like people under their fur. No...really...you can see it in their eyes! Anyway, one of my litters turned a year old over the weekend, and her family sent me these pictures of her birthday party. Is this too cute or what?

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Friday, October 10, 2008

Can't call her a rock anymore!

You may remember this post that I made about this time last year. Somewhere I have a video of it. And a few months later (this past April) I posted this update with a video. Last week I did a new video of Angela's swimming progress. I can't believe how far she's come, particularly in the area of self confidence! (make sure to watch both videos so you can see the difference!)

Fruit Flies

My last night in New Jersey we were trying to finish up the Funky Monkey ingredients, when we notices there were fruit flies everywhere. It doesn't take much to entertain us. Well, the fact that we can't SAY "Fruit flies" should be an indicator why! (I only know of 4 people who will actually find this funny, but hey...I'm running out of blogging material!)

Tail of the Dragon

The first week of April, 2009, my friends Tink, Scharlett and some others are planning a trip to Deals Gap to ride the Dragon's Tail, which is on the Tennessee/North Carolina state line. This ride is NOT for the faint of heart. In fact, here's a video from one guy who had a camera on his front fork. I sure hope I can make it on this trip! Oh...and I can't watch more than 2 minutes of the video because watching stuff like that makes me motion sick. (can't play car racing video games either. LOL)



The big question is how I get down there. April isn't really riding weather here yet. It's pretty cold, and...well...I get cold really easy. LOL Yes, I could wear a heated vest and heated gloves would help as well. But that is even MORE money that I don't yet have to spend. Maybe Santa will bring me some of these things for Christmas???? Anyway, I could trailor my bike to some point further south, then meet up with the group somewhere enroute. Lots of things to consider between now and then.

Oh my gosh, I missed a day!

Uh oh. I can't believe I missed a day. Shame on me! So what can I tell you that's interesting?

Well, SOS Players started up again. This is a theater group Angela is involved in that is absolutely wonderful. They do two "demo's" every year...winter and spring...so Angela is now working on her monologue to be performed sometime around Christmas.

You might remember the one she did last spring, with our friend Greg. This time, (well, as of right now, we might change it) she's doing all on her own. All the kids do monologues that are about real-life situations (but are written by someone else.) For Angela, it's easier for her to memorize if it's something meaningful to her. Where last time she told her birth story, (which made for a lot of tears in the audience!) this time she's explaining Down syndrome, and I found a way to address the "R word" in there too!

Wednesday, October 08, 2008

Special Exposure Weds

Today you can watch Angela grow up in pictures.

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5 days old
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a few days old
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4 months old
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26 months
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3 1/2 years old with the most amazing hair!
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7 years old
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8 years old
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Posing at 8
Hacky 1
Hacky Sac at 9
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9 years old
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9 going on 15
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Still 9!

Turning 10
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Not happy about sleep studies at 10
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Unless, of course, it involves ice cream!

Finally 11!
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6th grade and 12 years old. My little tomboy. Wonder where she got that from?
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Think Before You Pink

October is Down Syndrome Awareness month, but it's also Breast Cancer awareness month. Today I saw an yogurt ad on TV, something about pink tops and proceeds going to benefit breast cancer research (or something along those lines.) But tonight, one of the blogs I read that is written by a woman who was diagnosed with breast cancer 3 (?) years ago wrote a very interesting post called "Think Before You Pink". Go have a read there, and then...do as she says...Think Before You Pink!

Time to Say Goodbye

Yes, sadly, it's that time of year again. In just a few short weeks the snow and ice will start blowing here in Minnesota, and as usual I'll spend the winter dreaming of moving south. (Actually Dean says if I can find a job for him in a southern state, he's there! LOL Unfortunately the chances of that are very slim for several reasons.)

So what does this mean? Time to say goodbye to Nooner and Spank for the winter. I'm going to miss them a lot! I spent 6,000+ miles on the seat of Nooner this summer, and Angela spent a fair amount riding in Spank.

For the sake of space they'll spend the winter separated, on opposite sides of the garage. I hope they don't miss each other too much, and I hope the mice leave Spank alone! I probably won't seem them again until the end of March or so, which seems like forever away right now. I have tentative plans for a big trip in April, (which seems even further away.) And then Dean and I have plans to ride several big charity runs next summer.

Goodbye Nooner. Goodbye Spank. I'll miss you!

Tuesday, October 07, 2008

How cool is this?

You may remember my posts about High School Musical, and meeting our new friend Dante Russo, one of the cast members.

Well, today I was googling my blog to see where else it shows up, when I found this. It's the opening speech for a large fundraiser gala that was held in New York. I am truly touched!

Monday, October 06, 2008

You Have Superpowers!

Lifted from the "Love Notes for Special Parents Gallery".

Win a Bedroom Set!

5 Minutes for Mom is running a contest to win a new bedroom set for your child. All you have to do is enter a photo of your child sleeping. Sounds simple, doesn't it? Go here to find out more!

I have lots of photos of Angela sleeping, and some are better than others. In some, she was clearly not well, and the picture shows it! Particularly the ones when she got her new hospital bed. There are others that she looks like a sleeping angel. I think it best I post an "angelic" picture, huh?

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Bowling

Angela had her area bowling tournament yesterday. (and of course, I forgot to bring the camera!) Dean took her to the last practice she attended and with his coaching she did great, but I was a bit worried because she missed the last couple of practices all together. To get some practice in quick she and I went bowling on Saturday at the same lanes the tourney would be held at. She's very familiar with the place since it's where Dean league bowls on Thursday nights. Yeah...our little practice didn't go so well. The first game she didn't hit ONE single pin! Every ball was in the gutter. They're not allowed to use bumpers in the tourney, so I wanted her to bowl at least one game without them. The second game I put them up, and although she never once hit them she scored a 52.

So yesterday there were 8 kids between 2 lanes, all of them around the same age and ability. The first 6 frames of the first game NOT ONE PIN was hit between the 8 kids. They were all quite frustrated. Keep in mind that for the tourneys coaches can't coach, and parents can't be down on the floor either. So those of us with control issues sometimes give ourselves a timeout to the parking lot. (we'd go to the bar, but it's closed for this event. LOL) Anyway, finally all the athletes found their groove. Angela ended up scoring a 58 the first game, and 54 the second. She even picked up two spares. Needless to say she was quite proud of herself.

I have decided to get her a ball of her own though. There were about 50 athletes there yesterday who all needed a 7 pound ball, which are hard to come by. I'm going to let Angela pick a really cool one like Hello Kitty or one of the other million design choices.

Dean left early Friday morning to go hunting/fishing/mostly male bonding with his twin brother Dave, while Angela and I just hung out and bowled.

Sunday, October 05, 2008

Deaf Couple on Super Nanny

The Friday, October 10th episode of "Supernanny", will feature a family headed by a deaf couple. This episode should provide insight into the interesting situations you never thought about when the parents are deaf, kids are hearing.

Here's a link to a preview, although I just discovered there's no sound. LOL Anyway, it's the mom giving a synopsis about how they got on the show, the interview process, etc.
http://www.aslclips.com/mar2008/supernanny_marie.swf

Saturday, October 04, 2008

For the mothers

This was forwarded to me tonight, and I thought I'd share it here, since it IS 31 for 21 month. This is for all "those mothers". You know who you are.

Some Mothers Get Babies With Something More
written by: Lori Borgman Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the cliches and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

New project

I'm working on a new project (the full idea will be announced sometime later...when I know what the full idea is. LOL). Here is my first-ever attempt at sculpting clay, specifically a clay baby. I was going to make a WHOLE baby, but notice I stopped at the whn I finished the head. LOL This will eventually be a Down Syndrome related project, but right now it's just me playing around with clay, trying to make a baby that looks...well...not as ugly as my first one! LOL

Did I mention

Did I mention that my dog is going to be famous too? My Zurri (pictured below) will be appearing on the front of "Loyal" dog food, a brand that can be found nationally. We had a photo shoot a couple weeks ago that was really a lot of fun! Unfortunately she won't be called again for awhile. She came in heat the morning of the shoot, and we managed, but hopefully we'll announce a pregnancy in a few weeks and she'll be out out of commision for awhile!

Don't ask me if we'd ever feed this dog food! I can't reply on the grounds that my dog would loose her job! LOL

Friday, October 03, 2008

So you want to get a puppy


(puppies pictured above produced by D & L Doodles)
This post is in response to the 10-15 emails I get every week from people who are interested in getting a puppy for their family. These aren't people looking to buy one of my puppies per se, but after reading my website decide I'm a safe person to ask some specific questions. Guess what? They're right!

First, never ever ever ever ever buy a puppy from a pet store! EVER! Was that pretty clear? 99% of pet store puppies come from puppy mills. If the store owner says, "Our puppies come from local breeders." Ummm yeah so? Does that say ANYTHING about the conditions of the breeding operation or the number of puppies they produce? Not only that but NOT ONE GOOD BREEDER, who knows ANYTHING about canine puppy development would sell their puppies through a pet store! Ok..I'll stop there. If you want to read more on that topic go here.

AKC registration means NOTHING about a dogs health or quality. Think of the AKC as a large file cabinet, keeping track of the heritage of each litter of puppies registered to them. That means if I have a puppy born with deformities or health problems, I can still register it with the ACK. It's still a purebred. There are many breed groups who hate the AKC because they don't REQUIRE health testing (see below) on the parents of litters registered. This eventually ruins breeds, and is how they end up with a high incidence of things such as hip dysplasia.

Health testing. This is NOT THE SAME as "All my dogs/puppies are vet checked." I would hope that every breeder has their dogs "vet checked". No, Health testing is much more involved, and much more expensive. What does "Health Testing" entail? It depends upon the breed. Each breed is known to carry specific genetic disorders that you do NOT want passed on. However, you don't know the dog has one of them until they've been tested for it. Hip Dysplasia is one problem that is prevalent in MANY breeds. Let me use the Standard Poodle as an example. First, there is blood work: Subacious Adenitis (SA) is a skin disorder common to poodles, and involves a skin biopsy. Von Wilebrands Disease (vWd) is a bleeding disorder similar to hemophilia in people. It is a genetic disorder and found by a blood test. The hips, eyes, elbows and heart should also be xrayed and sent off to the Orthopedic Foundation for Animals (OFA) to be read. The eyes should be examined by a CERF vet. This is a special canine opthalmologist. They will rule out things such as juvenile cataracts (prevalent in MANY breeds!) that cannot be seen using the tools a regular vet has.

To get all the testing completed on one adult dog is approximately $1,000 depending upon where the breeder lives and how easy it is for he/she to get to the appropriate clinics. Some tests need to be repeated. CERF should be done yearly, and Hips done somewhere around a year, and again after age 2. ALL of the tests should be done and paperwork back before a dog is ever bred!

Health Guarantees: Breeders who do the health testing appropriate for their breed will have no problem giving you a 2 or 3 year health guarantee against genetic problems. Breeders who aren't SURE their dogs don't carry any of the breed disorders...IE those who don't do the health testing, will be reluctant to give you ANY guarantee. Some states like MN require a minimum of a 1 year guarantee under the MN Lemon law for pets. Unfortunately 1 year doesn't get you much. Most genetic problems such as hip dysplasia don't show up until after 1 year of age.

And what does that health guarantee say? Does it say, "We'll replace the dog."? Do you really want another dog from the same breeder if there is a problem? Does it say you have to return YOUR dog, whom you've grown to love, in order to get a replacement? QUALITY breeder contracts will say something to the affect of, "We'll refund up to the original cost of the puppy, OR give a replacement puppy." In other words, you get the choice. Most won't say, "But we have to have the original puppy back first!" Who wants to give up their baby?

Most of the breeders I know also have a re-home policy. That means, if something happens in your life next year, and you find you can no longer keep your dog, the dog comes back to ME. I don't want ANY of the dogs I've produced to end up in a shelter ANYWHERE. I want them HERE. If there are problems, I want to know about them. If there's a behavioral issue, I will retrain the dog before re-homing him.

USDA registered breeder. If the breeder you're considering is a USDA registered breeder, don't assume that's a good thing. The only reason to have a USDA number for dog breeding is to produce high numbers of puppies. Here's a link to a list of USDA "Class A" breeders. I believe this is the current 2008 list. Here's the link to the Class B list. (meaning they can sell their own puppies through pet stores AND sell puppies from other breeders as well!) Use your computer's search function to find those listed in your state. I searched MN and found it VERY interesting that a breeder I'm quite familiar with now has their operation listed under the name of one of their adult sons. Hmmmmmm Makes you wonder, doesn't it?

Spay/neuter agreements.
Good breeders will, at a MINIMUM, require you to sign a spay/neuter CONTRACT which they ENFORCE! This is to prevent people who don't know what they're doing from becoming back yard breeders. Some breeders (myself included) spay/neuter their puppies before they leave for their new families. We found it quite difficult to follow up on spay/neuter contracts on puppies that are on the other side of the country. We did our research, and agree with the opinion of our reproductive specialist who was president of the MN verterinary medical association for many years, that the benefits of early spay/neuter far outweigh the potential risk to the dogs later on.

A common misconception is that the "small breeder" means "backyard breeder". Which is backward thinking. A "small breeder" is just that. Only producing a couple litters per year, but still doing all the appropriate health testing. A "Backyard breeder" is one who might produce a lot of puppies, but they don't do the appropriate health testing for the breed, incorrectly ASSUMING their dogs don't have/carry any of the disorders known to their breed. It has nothing to do with size, and everything to do with knowledge. Backyard breeders tend to breed puppies they don't have homes for. You can easily find them in the paper saying, "price reduced!" etc. Most quality breeders don't have any problem selling their puppies. Ours have always been sold before they're even BORN, which is how a lot of breeders I work with also sell their puppies.

I hope, if you're in the market for a family pet, that some of this information has been helpful, or at least enlightening!

Next, watch for my "So you want to be a breeder?" post!

Thursday, October 02, 2008

Win a laptop-Help an adoption

I'm an avid blog reader. (wish I could get paid for it. LOL) One of the blogs I follow "The Sunflower Chronicles" is written by a mom who has 3 kids. A 12 year old son, a biological daughter Caelia who has DS, and Valeria who aslo has DS and was adopted from Ukraine this year.

They are also in the process of adopting another child who has DS. However, there have been some policy/political changes and their expenses have dramatically increased. To help with their adoption process they're holding a raffle for a Dell Mini Inspiron laptop. Entries are just $5!

If you'd like to learn more, please visit her blog post here. Or, if you'd like to just enter, click on the "chip in" button below.

Underarrested

Monday, as we were driving through beautiful Pennsylvania, a state patrol officer decided he'd like to have a little conference with me on the side of the interstate.



Angela, sitting in the front seat engrossed in a movie, wasn't even aware that we'd pulled over. Suddenly there was a State Patrol standing next to her window that I had just rolled down.

With eyes as big as saucers she said, "Uh oh! Was I bad? Am I underarrested?" He assured her that no, she was not. Pointing at me with her thumb she asked, "Is my mom underarrested?" No...your mom isn't under arrest either. "Is my brother Tyler underarrested?" No, not even Tyler.

He proceeded to ask me for all the necessary documentation. The insurance card was right where it was supposed to be, but I couldn't find the car registration. I couldn't even think straight enough to plead my case and get away with a warning instead. Hard to do when you're doing 82 in a 65. Doggone Sante Fe has a mind of it's own!

Anyhow, $150 needs to be sent to the state of Pennsylvania this week.

Wednesday, October 01, 2008

Times Square... we're HOME!

I can't believe a week went by! As Angela would say, "Holy cows!"

First, the drive out (20+ hours of driving) went very well. Angela did GREAT and we didn't have one single issue. NOT ONE! She slept for a whole 40 minutes of the whole trip. For her, the highlight was swimming at the hotel. LOL

We got to my friends in NJ on after getting only a tiny bit lost (can you hear the sarcasm?) at 10:30 pm on Thursday.

Friday was a fun day! We met Erin Leigh and her family at Chuck E Cheese. Angela had a BLAST playing video games and stuff. Dillion is a DOLL child and it was so fun to see him in person. Say a prayer for Erin Leigh, as she's having c-section this week on Friday. She's anxious to be DONE! LOL

Saturday we went to watch my friend's daughter at her Fencing practice. I've never seen fencing before, and knew NOTHING of how it worked. Angela had fun watching too...that is when she wasn't asking for money to go get snacks from the lady at the snack table. Typical 12 year old! LOL

Sunday was THE BIG DAY we had come for! Oh my gosh..where do I begin? How about getting to the train? We had to leave the house at 7:15, and were up in plenty of time, but Angela was pokey eating breakfast so we didn't leave until about 7:25. Bad...bad...We were to meet Stephanie at 8:00. My friends husband lead the way, and I followed behind in my car. We pulled up to the station at 7:58, and he ran in to get our tickets while Angela and I parked the car, did a record-fast unload, and raced to the building. I order her to "SIT NOW!" in her stroller and we RAN down the hallway to where the train was. As I scanned the crowd for Steph and her family, my friend turned the corner to this big flight of stairs...and me with Angela in her chair. No time to wait for the elevator, I ordered Angela to walk fast down the stairs (yeah right) while I carried the chair down, and David held the train. Before I knew it we were on and headed on our way. I called Steph, and they had just gotten to the station and would be catching the next train so we met them at NYC Penn Station.

Ok, the first time I cried was when I got to hug Steph! We've met before, and it was great to see and "old friend"! And a HUGE relief that I was no longer alone. SHE was the woman of knowledge that day and got us everywhere we needed to be. I don't know what I would have done without her. I came out of the train station looking like a tourist with my video camera rolling. LOL

We made it to Times Square just as the video was starting. As soon as the first picture came up, I got all choked up and couldn't even talk. The coolest thing was every time someone's kid came up on the screen, you'd hear their family cheering somewhere in Times Square. It gave me the chills! For us, Megan's picture came up first, and it was so exciting to see beautiful Megan up there! But I couldn't share in the celebration, afraid that if I took my eyes off the screen I'd miss Angela. To give you a reference point, it's hard to see in this picture, but there is a patch of sidewalk in the MIDDLE of the street. Right smack dab in the middle of Times Square, that THAT is where we were standing! In the background you can see people crowded on the sidewalk, but there is another street right behind it. I was very nervous that Angela would step into the street and the traffic that was ZOOMING by!


On that picture, notice the black screen that says "Panasonic". That's the screen Angela was on. It's about 5 or 6 stories off the ground, and is 40 feet tall.


And then all of a sudden there she was...40 feet tall for all the world to see, right there in Times Square. She was SO EXCITED to see herself up there, but I was too choked up to say ANYTHING! I did video tape the event, but one of Steph's entourage snapped a still shot.


And then it was done! About that time it started P-O-U-R-I-N-G. We were supposed to catch a shuttle bus to Central Park, and all morning I'd been torn about going or not. Steph's group wasn't, and I had yet to meet Tom and Michel. Fortunately the weather made my decision for me, and we went back to the square.

And there stood Tom and Michel!!! The Mommy and Daddy of Downsyn! I can't tell you how thrilled I was to finally meet the two of them, and especially Mikey! Of course, we all know Tom is a very smart man, and right away he said, "You look MUCH younger in person than you do in pictures!" What a schmoozer. Wink And Michel was full of compliments on my beautiful Angela. All of us looked like drowned rats by that point, but at least we were happy rats.

Here's a picture of Michel, Megan, Stephanie, Angela and me, taken while taking cover under an awning in Times Square. It was POURING out!


I have more pictures, and lots of touristy video, but I have to fine my firewire to get them off the video camera!


We "did lunch in the city", with Mikey flirting with Angela the whole time. It was interesting to see Angela's reaction to the couple of love punches Mikey had for her. Tom...really...it gave her a dose of her own medicine! She looked quite offended at first, but once I explained that Mikey used his hands to talk, and that he was saying he liked her, she changed her approach and started engaging him. Well, that and dishing up stuff for him. Mikey lasted a LONG time in a crowded restaurant. When he made it clear it was time to be done Angela announced, "Someone's having a bad day." in a sing-song voice. Then Tom came back for a bit and Angela had her TRUE love all to herself for a bit! She no longer had to share him with that Michel. LOL She would have gone home with you in a heartbeat Tom!

When it was time for Tom and Michel to head home we said our goodbyes and went to Toys R Us with Steph's group. It is right on Times Square, and is Toys R Us on steroids! Holy cow!

Before we knew it, it was time to head back to the train, where I got to spend the best time with Megan!!! Olivia was busy sleeping, so Megan got my undivided attention. She and I sang songs, and I taught her a new one which she loved. She is the most beautiful child! Talking tons, and reminds me so much of a blonde Angela at that age. We had a tearful goodbye at the station (ok, I was crying, everyone else was fine! LOL) and we made it back to the house without even getting lost.

Angela and I headed for home Monday morning, and after a small detour in the Poconos, we were on our way. Note: while the colors in the Poconos were BEAUTIFUL because they were peaking, we weren't SUPPOSED to see them! LOL When I saw, "Last rest stop in Pennsylvania" I thought "Wait a minute. Pennsylvania is MUCH bigger than THAT!" Sure enough, I'd missed a turn which added about 100 miles to our trip. LOL

We're home now. By 8:00 last night it felt like we'd NEVER make it home, but we did at 9:30. Angela is anxious to get back to school today. As for me, after a grand total of 45 hours of driving, I think I'm laying low.

I have to go buy another fire wire for my video camera so I can get the pics off it.