Friday, November 07, 2008
Today's smile maker
Do you ever feel like your kids are making you run in too many directions at once? Go watch this video, then picture the mom and dad in about 2 weeks, when these skills have been perfected!
Thursday, November 06, 2008
It's almost here...winter
It's going to be winter soon. Do you feel it where you are? On Monday it was crazy warm here, 73 degrees which tied some old record. Here in Minnesota, you don't get 73 degree days in November. And what did I do with that warm weather? Well, go for a ride, of course! It was warm, and sunny, with the scents of fall filling my nose as I ran all my errands on Nooner. (formerly known as Red.)
Nooner is my friend who helps me solve the problems in my world. Well, he doesn't do it, but he does bring me closer to HIM, who DOES! Some people go for prayer walks, or hikes. Not me, I go for prayer rides.
I'm so glad I decided to get my own bike, so I don't have to wait for Dean to ride with me. Dean likes to ride, but he doesn't itch for it like I do. On beautiful days when I'm driving around in my Tahoe, I notice every bike on the road, and my stomach twists just a little bit tighter, reminding me that I should be out there too, not trapped in this steel cage that is my truck. Whenever I see them, instinct tells me to give them "the wave", except that if I'm in my truck and I do that they won't understand. So instead I just stare...and try not to drool.
Just like having Angela has lead me to people I never would have met otherwise, the same is true for Nooner. People seem to be fascinated by a woman on a bike. Little kids stare and point. Men look as I go by, with a "I wish my wife would do that.", or the "Now there's a pround woman." kind of look. But the look I like best happens at stop lights. It's from the women who are in their 40's or so. You can see their eyes sayng, "I wish I had the guts to do that!". Ok, I know they're probably REALLY thinking something along the lines of "Ugh! Those things are so annoying! I can't hear my cell phone when they're next to me." But I prefer to think the other way. LOL
So, every warm day that passes is one day closer to snow, and one less day of riding. It makes me hate winter even more than I did before!
Nooner is my friend who helps me solve the problems in my world. Well, he doesn't do it, but he does bring me closer to HIM, who DOES! Some people go for prayer walks, or hikes. Not me, I go for prayer rides.
I'm so glad I decided to get my own bike, so I don't have to wait for Dean to ride with me. Dean likes to ride, but he doesn't itch for it like I do. On beautiful days when I'm driving around in my Tahoe, I notice every bike on the road, and my stomach twists just a little bit tighter, reminding me that I should be out there too, not trapped in this steel cage that is my truck. Whenever I see them, instinct tells me to give them "the wave", except that if I'm in my truck and I do that they won't understand. So instead I just stare...and try not to drool.
Just like having Angela has lead me to people I never would have met otherwise, the same is true for Nooner. People seem to be fascinated by a woman on a bike. Little kids stare and point. Men look as I go by, with a "I wish my wife would do that.", or the "Now there's a pround woman." kind of look. But the look I like best happens at stop lights. It's from the women who are in their 40's or so. You can see their eyes sayng, "I wish I had the guts to do that!". Ok, I know they're probably REALLY thinking something along the lines of "Ugh! Those things are so annoying! I can't hear my cell phone when they're next to me." But I prefer to think the other way. LOL
So, every warm day that passes is one day closer to snow, and one less day of riding. It makes me hate winter even more than I did before!
Tuesday, November 04, 2008
I Voted, did you?
I am so very glad to be putting this election behind us. It's been miserable, hasn't it? I won't miss the phone calls every evening reminding me not only to vote, but who to vote for and why. I think the calls should be illegal. Does anyone actually listen to the whole call? I had a call from the RNC the other day and the guy accidentally ended his sentence with, "So don't forget to check the democtatic...I mean I mean republican candidates."Mostly, I'm ready to be done with the mud slinging and arguing. In the past 2 weeks I haven't seen ONE commercial that wasn't a negative ad about the other candidate. No more "vote for me because" ads. No, those were done weeks ago. Instead it's the "don't vote for Joe, because Joe is planning to blow up the world next week!" type of ad. UGH!
Sadly, this election has brought out a side of people I never knew existed. I have some pretty passionate online friends, and I've seen them engage in conversations and arguments (they weren't debates, they were arguments!) that were not only shocking, but made me really question the integrity of some of the people. Clearly they've shown only one side of theirselves all the years I've been talking to them, and this election brought out the side they've had tucked away. I can't say that I've seen one single online debate stay nice and on topic. No, they've all been awful.
Today I went to get my hair cut, and was wearing my "I voted" sticker. The young stylist asked me, "So, who did you vote for?" (She's young remember...early 20's tops.) I told her, "You know, I won't even discuss politics with my husband, but I'll gladly discuss religion with you if you'd like!"
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!
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!
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.
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.
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!
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!
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!
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!!!!
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!
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.
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?????
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.
........................................................
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.....
........................................................
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
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.
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!
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!
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