Blogging about life and 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!"

Tuesday, March 31, 2009

For my chocolate loving readers


Admit it! You love chocolate, and you know it! Do you know that some of the best chocolates in the world are made in Serbia? Well, I know a boy named Grifyn who was born in Serbia, and a year ago found his forever family right here in the U.S. 

Grifyn has Down syndrome, and you know from reading my blog what happens to children with DS born in Eastern Europe. They are placed in orphanages, and if they're not adopted by the age of 4 they are sent to a mental institution where most die within a year due to the poor conditions. (think starvation, malnutition, dehydration, lack of  heat,  children tied to cribs, and pretty much any other horrible image you can think of and you'll be on track.) But Grifyn was one of the lucky ones! A family chose HIM! In fact, he was the first child with Down syndrome to ever be adopted out of Serbia. The Bedford family also went to Ukraine and chose his brother Xander!

And now they're at it again, only this time they'll be traveling to Bulgaria, where they're SAVING this child who has already be transferred to an institution. It is very rare that a child is allowed to be adopted once they've already been transferred. Once the transfer is made, the child is usually, for all intense purposes, dead to the government. But THIS child...this child will be saved from what is usually a death sentence. 

In honor of Grifyn's one year anniversary of  his "Gotchya Day", he is giving away a basket of Serbian chocolate! Every $10 puts your name in the drawing for the basket, with all the proceeds going help bring his newest brother home! Go here to find out more details!

You can use a lot of words

Offense Taken

Today's the day!!!

SPREAD THE WORD TO END THE WORD

A personal message from John C. McGinley

Hi, I’m John C. McGinley. I’m an ambassador for the National Down Syndrome Society, and today I’m teaming up with Special Olympics to bring you a message that’s important to me.

John C. McGinley and his son
John C. McGinley and his son, Max

So many times in life you are asked to change…

Change your clothes. Change lanes. Change jobs. Change the sheets. Change flights. Change your tune. Change horses midstream. Change your latitudes and your attitudes!

Change, and the ability to adapt, is to the human condition as air is to the lungs. We change, and in the doing, we thrive!

In fact, we just elected a president who promised, above all else, to “change.”

What if, on March 31, you elected to change the way you use the words “retard” and “retarded”?

Hardly seems like the largest of sacrifices. Not when you consider the changes in language that you have, so willingly, already elected to integrate into your vernacular. You no longer use the words nigger, or kike, or faggot, or jap, or kraut, or mick, or wop.

Why would you? Why on earth would you? Those are all words that hurt. Those are all racial and ethnic slurs and epithets that perpetuate negative stigmas. They are painful! And that is not okay. It is wrong to pain people with your language. Especially, when you have already been made aware of your oral transgression’s impact.

Make no mistake about it: WORDS DO HURT! And when you pepper your speak with “retard” and “retarded,” you are spreading hurt. So stop it. Stop saying “retard” and “retarded.” Those words suck! You are better than that and you definitely do not need to be “that guy.”

There is no longer any acceptable occasion to lace your dialogue with the words “retard” and “retarded.” Without fail, those words are the stuff of hurt. They, straight up, are. So, stop it! Stop using the “R-word.”

The 7 million people with intellectual disabilities (around the planet) who are on the receiving end of this hate speak are genetically designed to love unconditionally. These “retards” are NEVER going to return your vitriol. Ever! So what could possibly be the up-side of continuing to use the “R-word” in your daily discourse?

We love you. We do!

And, just in case you missed it and you need an extra hug? We love you!

You do not need to love us in any kind of reciprocal fashion. You don’t. (It’s not that kind of bargain.)

But, how about on March 31, you elect to change? A word? Two stinkin’ syllables?

On March 31, join us and “Spread the Word to End the Word.” And the word is “retard!” It HURTS! So help us to cut it out.

Thank you! We do love you!
John C. McGinley

Learn more about spread the word to end the word

Take the pledge to stop using the r-word


I'm upright today...sorta.

For those who talked to me, or had calls fielded by Dean, you know I was sick. We're pretty sure I had food poisoning, because it came on so suddenly and violently. But, when I started running a high fever we weren't so sure. Thanks to google, we found that yes, you can run a fever with food poisoning, it just depends upon what bacteria you were lucky enough to eat. 

Talk about a weight loss plan that includes a colon cleanse...I lost almost 6 pounds! I've manage to stay out of the bathroom since about midnight last night. I haven't been able to keep any liquids in me, so I'm just getting a sip here and sip there. My hands say I'm really dehydrated but my mouth is watering so I guess I'm ok. This morning I'm a little shaky and have a killer headache, but even that is much better than I was yesterday! I have one more post to make, and then I'm headed back to bed for a few hours. I'm hoping to do some picking up around here cuz the house is a mess. 

Yesterday when Angela came home from school, she played nurse to me for a little bit (we had to hide her phone because she was determined to call the hospital, and I know it would have meant dialing 911! LOL) then disappeared for some TV time. A little while later she came up to my bedroom and said, "I watch a movie on demand." which is her way of saying she's tired but not wanting to admit it. Sure enough, I found a movie for her and she was asleep in 5 minutes. She slept for TWO HOURS! I guess she was still making up for whatever sleep she lost while at camp. (speaking of which, I'll post about camp later today.) When she woke up, she was FULL of energy! As I floated in an out of consciousness in the bedroom, she gave Dean a full Seussical concert, right in front of the T.V he was trying to watch. LOL Thankfully he remembered that it was basketball night and off the went. (I think he secretly enjoys taking her to practice and visiting with the other parents. LOL) After all that napping I was shocked when she was asleep by 9:00 last night.

Alright, enough from me. I'm back to bed.

Friday, March 27, 2009

You drop me off, ok?

When we pulled into the parking area at camp, Angela turned to me, "Mom...I'll get my suitcase. You drop me off, ok?" In other words, "I don't want my mother escorting me! So just leave already!" 

"Well Angela, I have to meet with the nurse first to check in your meds, and I just *might* want to see where you're going to be staying this weekend. You know, thats kind of my job as the mom."

She let out a big frustrated sigh, then got her suitcase out of the back seat. We went into the main building, and were told we'd need to wait just a minute to meet with the nurse, so the staff person who greeted us asked if we'd like to see Angela's room. 

It was a large room with (I think?) 8 beds. Angela's was a hospital bed, which is what she sleep in at home. (she has to sleep at a significant angle because her esophagus collapses when she lays flat.) Somewhere in the registration papers there was a question asking if the camper sleeps in a hospital bed. I checked yes, but noted that she doesn't sleep in one while at her dads and seems to do fine. Still, they had a hospital bed for her, which is great! 

We unpacked her clothes. I had divided her clothes into sets which are put into gallon ziplock bags. So one is marked "Saturday" and has her clothes for saturday in it. That way she doesn't have to think, just put on what's in the bag. Then there is "Saturday Pajamas" that has pj's and a pull-up inside. This works great for her! The only time it's trick is during the summer when the weather in the midwest could be 90 or it could be 60. LOL 

Next we checked in with the nurse. We went over all her meds and the time she gets them. It only took a few minutes, and Angela is able to tell you what meds she gets in the morning. She can't tell you how much, but she can tell you the names of them. She takes 6 different meds, so I think that's pretty good she can do that!

As soon as we were done going over meds she looked at me over the top of her glasses, "Ok, you can leave now!" 

I gave her a quick hug and a kiss, and out the door I went. I'll be honest, I spent the whole 15 minutes I was there with my jaw clenched in an attempt to hold back the tears that were threatening the make an appearance. I managed to get into the car before one slipped down my cheek.

I looked at the car clock....6:40. Plenty of time to get home at a semi-decent hour. I got back at 10:30! I can't wait till Sunday when I pick her up. I'm sure she'll have plenty of stories! Now, please pray we have a weekend without any phone calls from camp staff!!!!

Thursday, March 26, 2009

Hodge Podge Post

This post will have a little of everything in it, so bear with me.

First: I think this has been our healthiest winter on record. Not only for Angela, but for me too. Dean rarely gets sick, so I think it's par for the course for him. Anyway, she had what we think was Whooping Cough back in November. By the time we realized what was going on she was already on antibiotics for something else so it would have skewed the test. By her symptoms, it was whooping cough. AND, she'd just had her 12 year booster for it in July, so that's kind of odd. When our school district announced an "epidemic" of chicken pox (it was even on the news!) I got a little worried. Even though she's been vaccinated for it twice, so had several of the kids who developed the pox in her school! She had a sinus infection in February, and other than that she's done really well! I'm knocking on every wood surface near me though, because I've learned that whenever I say stuff like that, things happen the very next day! With her leaving for camp tomorrow I don't want anything to happen. LOL

Secondly: TIA's and headaches.... About a month ago Angela had a TIA. In the average person, if they have a TIA you call and ambulance and hope they're not going to suffer a massive stroke right before your eyes. But Angela isn't your "average" person. She has a long history of TIA's, so when she has one we just make note of it. The last time she had one was 2 years ago, but it took her several weeks to get ALL of her motor skills back. Usually it's only a matter of hours. So, when she had this one, I didn't even notice there was something going on. We arrived at her riding lesson and her instructor was like, "Why is she walking different?" and when I finally studied her I was like "hmmmm...interesting. Haven't seen that for awhile!" We went ahead with the lesson, but it was really tough to get Angela up on the the horse, as she was really weak on her left side. When she got up there she was collapsing to the left. She always does this when she's tired, but that's after riding for an hour, not right when she gets on! They went about 30 feet when Angela said she was tired and wanted to be done for the day. 

So when I got in the car, and called her neurologist's office, the nurse who answered my call was like, "You need to hang up and call 911!!!" and I'm like, "Um....no....she just does this." I'm sure she thought I was nuts! The neurologist on call finally called me back and said to just watch her and if she started another to bring her in. Within a couple of hours Angela was back to 90%. Her motor skills were back to normal, but she was a bit tired. 

Then, a couple weeks ago, she started waking up at night with really bad headaches. Those who know Angela know that she doesn't actually cry tears unless something is REALLY WRONG! I've always joked to school staff that "If you see real tears, call an ambulance!" She just doesn't cry tears unless she's in excruciating pain. So a couple weeks ago she wakes up up at 3:00 in the morning, standing by the said of my bed sobbing, "Mom...my head HURTS!" And she was holding the side of her head. I gave her some tylenol and laid with her till she fall back to sleep. When morning rolled around she still had the headache. Another round of Tylenol and by 9:30 or so she was acting fine so I brought her to school. 

The next night was the same thing, then again a few days later. 2 days ago she had another. Yesterday we had a check-up with the pediatrician, and she was adamant that I get Angela back into the neurologist very soon. She said headaches that come and go during the day are nothing. Headaches that wake you up in the middle of the night are a bad thing. The headaches, combined with the TIA last month are, apparently, quite a cause for concern.

But I refuse to get worked up this time!!!!! Two years ago all the doctors were freaking out, and I was told she was at risk for a massive stroke. When I asked what the warning signs would be, the neurologist looked at me and said, "Ummm, there won't BE any! By the time you see something, it will be too late." which is what launched us into a battery of testing at Mayo, and the whole Make A Wish journey, and here we are 2 years later. She's still walking and talking, even after this last TIA, so I'm just sitting on the fact that nobody has a clue what is happening inside her head and I refuse to worry anymore!!! We are living life, and we'll get to the neurologist next week.

Did I mention we're just living life? Tomorrow Angela leaves for a weekend camp put on by the Easter Seals of Wisconsin. She is SO EXCITED to be going to camp!!!! She has been beside herself all week. Today we got some running around done, and her bag all packed. It's a 4 hour drive to camp (whoo hoo!) and Angela loves road trips so we should have a good time. I wish I had something to do out in that area because I'd just stay out there rather than turning around and driving home, only to do it all again on Sunday! But, I'll survive. I wouldn't normally send her to a camp this far away for just a weekend, but there are extenuating circumstances that make it kind of necessary in order for her to attend summer camp there. (as in, they need to get to know her to know EXACTLY which summer program is best suited for her.) 

And, the last order of business is a question I have a Vagal Nerve Stimulation. Angela's OT has suggested it for her oral motor skills, along with her swallowing difficulties due to achalasia. In Angela's case she has no peristaltic wave. Combine that with the fact she had nissen fundoplication done at 11 months and basically her swallowing is a mess. Most of the time she's able to manage it, but once in awhile she gets into trouble. So, Vagal Nerve Stimulation used to be used to treat epilepsy, but in recent years has been found to be effective in treating swallowing disorders, AND in improving the nerve impulses to the muscles that control peristalsis! So this is something she wants to see if Angela is a candidate for. It means repeating her swallow studies, but for her that's not really a big deal, just one more appointment. I guess we'll see how it pans out.

So that's concludes my update for today. Tomorrow Angela and I will head to the Wisconsin Dells for camp!

Wednesday, March 25, 2009

Funniest phone call ever!

7:30 a.m.: It's spring break. I don't have to get up to d.r.a.g. Angela out of bed, so when the phone rings at 7:30 in the morning it's quite irritating.

Me: (sounding very tired and probably a little irritated.) Hello?
Caller: (breathy voice) Hi mom.
Me: (grinning ear to ear) Hi Angela. Good morning.
Angela: Good morning mom. Today is Wednesday. We're going to play with Caleb, then go to see Dr. Mary.
Me: Right. What are you doing right now?
Angela: Um, I dunno.
Me: Remember you need to bring your laundry downstairs and make your bed.
Angela: Ok mom. Bye. Oh!...Mom!.... I love you!

So, who wants me to add their phone number to her contact list??? Disclaimer: You'll get calls at all hours of the day!

Tuesday, March 24, 2009

A compliment

Tonight there was a small party thrown for the younger athletes on Angela's Special Olympics team. As we were getting ready to for the party, I put new ear rings in Angela's ears, and a necklace around her neck. "You look beautiful Angela!" I told her. Later in the car, I realized she was staring at me. "What's wrong?" I asked. "You're beautiful mom. Same as me!" as I realized for the first time we were wearing close to the same outfit. As we sat at a stoplight I looked over at Angela's hair. She has my hair. It doesn't like to lay nice and neat, and always has fly always, (and mine is getting thinner!) but the color of our hair is identical. She turned and saw me looking at her and she smiled her "you're crazy!" smile at me. My smile. My eyes. My sense of adventure. My love of a good time. 

Well, it must have been what I needed to hear tonight, because one of the moms came up to me after the party and said, "You know, she looks JUST like you!". 

When our children are born with Down syndrome, one of the things we wonder is if that child will look like the rest of the family. Sometimes it's hard to remember that while they share most of the same features as their peers who also have DS, that is only ONE tiny piece of genetic material, yet ALL of their genetic material comes from us, their parents. So of course our children will look like us, and yet they'll also look like others who have DS. 

For those of you who know my boys, you know they only look a little bit like me. They really look like their dad, so Angela was my last chance for a mini-me. Well, here's a post I wrote in September 2007 on the same topic! I'm glad someone reminded me tonight.
...................................
I want to get Angela's hair cut. Something short and sassy, but still feminine enough that she won't be mistaken for a boy. I went to Stellure.com and did a one month membership that allowed me to upload a photo and select hairstyles to view with Angela's face super imposed in them. (It was interesting, but not worth the $20.)  

Part of the process of using this program is establishing certain points on the face that become landmarks the computer uses for making a digital rendition of the subject. Zooming in on Angela's eye I mapped out the exact corners, the center of her pupil, the arch of her brow line, her perfect eye brows. As I marked the bridge of her nose, I discovered she finally has one! (most babies with DS lack a nasal bridge.) I tried on some funky hairstyles, then decided to mess around with my face. 

As I mapped out my eye, I re-discovered that Angela and I have exactly the same eyes. I was reminded of a time when I was a little girl around 11 or 12 years old. I was at a friend's house and her little sister (then about 6 or so) asked me, "Are you chinese? You have Chinese eyes." Well, I'm very much german caucasion, but I definetly have almond shaped eyes. These eyes match my daughter's and my mothers. Nobody else in our family has these eyes.  

As I matched Angela's nose it reminded me of a nose I'd seen before. I pulled out a picture of my son Noah at about 9 years old, and one of me at 10. Sure enough, all three of us have the same nose.  

I mapped out Angela's mouth; the down-turned corners that are a marker of her extra genetic material. Except that they also mark her family, as I have the same downturned mouth. (I just have more creases in the corners of mine!)  

I mapped out her ears, the right one being slightly over-curled, and both set low on her head. Funny...that's where mine sit too.  

Examining Angela's features this way brought back memories of the day after Angela was born. I stood at her bedside in the NICU as the neonatologist went over her body, feature by feature, showing me what things pointed to Down Syndrome. "But...she just looks like me!" I said. Really...she looked just like me. I'm sure they thought, "Oh that poor mom. She just doesn't want to see that something is wrong with her baby." But no....really....she just and still does, look just like me.

Monday, March 23, 2009

Salad anyone?

One thing we KNOW Angela inherited from her dad is his psoriasis. She doesn't have it anywhere near as bad as he does (actually, if you see psoriasis medicine flyers with HORRIBLE cases of  psoriasis, they are probably pictures of him. For real, as he's been in lots of studies because his is so bad!) Anyway, Angela has a few patches on her body, but her scalp is covered with it. If you've never seen scalp psoriasis, go google it. It's not pretty.

Recently her dad called and asked that I try this on her. It won't get rid of the psoriasis, but it will get rid of the awful scales for a few weeks. 

First, you cover the head in olive oil. Doesn't Angela look thrilled?


Next you add a shower cap, so that the oil soaks in. Wear the cap to bed so the oil stays on the head all night.


Then you give your mom a big smile to show her how much you appreciate her trying to clear up your scalp, and just exactly how much you love the feeling of oil on your head, under a shower cap, AND the prospect of wearing it all night long!


Well, you didn't say there was a TREAT in it for me! DUH!


So, how did it work? Well, the next morning we washed out the oil. It washed out very easily with two washings. Oh my gosh, I've never felt hair so soft! Even 3 days later it's still super soft!!! And the scales are GONE! She still has red spots of psoriasis, but no scales! Works for me!

Tuesday, March 17, 2009

Taller and taller



I took this picture of Angela this morning after she got ready for school. (by the way, notice the colors? Not only did I not send her to school in kelly green, but I sent her in pirate colors! LOL) Shortly after taking the picture, I went to get a class out of the cabinet, and had to have Angela duck her head because she's now tall enough for her head to get knocked by the upper cabinets! Wow, when did THAT happen? 

And so I measured her, and she's now 4 ft 9". That's tall for a girl with DS at 12 years old. In fact, it's tall for an adult woman with DS. I noticed this weekend that she's taller than several adults with DS I know, but she's also shorter than a few too. I've been told, however, that she's not going to grow much more, and really, her velocity has slowed considerably in the past few months. Now, instead of growing UP, she's growing in other directions. LOL

Speaking of those other directions, Angela is quite proud of the new parts she's acquired lately. Before getting into the shower she spends a lot of time in front of the mirror admiring all those parts too! A sense of modesty didn't come with them though, and she frequently walks out of the bathroom buck-ass-naked to tell Dean something really important about her day, which sends Dean's hands over his eyes and him calling, "ACK!!! No naked girls in the living room!!!" 

This is my fault though. It's not unheard of for me to get out of the shower and realize I still need clothes, and run down to the laundry room to get some. I waited a long time for my boys to get out of the house so I could loosen up a bit, and now I need to go backward again because Angela doesn't get why it's ok for me and not for her. LOL So, now I've been hamming it up, "GASP! Dean! No boys in the bathroom when I'm in the shower!" "ACK! Dean! No boys allowed in the bedroom when I'm getting dressed." and stuff like that. 

Not too long ago, when Angela was in bed for the night, I had climbed into the shower (which is also my evening decompression chamber. LOL) and Dean decided to join me. (No really, It's because we went green and are trying to conserve water.) We were talking about our day and didn't hear the bathroom door open, which is funny since it's very rare Angela is actually QUIET! So we're chatting away when all of a sudden we hear, "GASP! Dean! No boys allowed in the shower with my mom!!!! You get out NOW!"

Yeah, we about died laughing too.




Swimming Videos

For those of you who are waiting to see the video of your kids that I took on Sunday, I'll try to get them up tonight. For now, here are a couple of Angela's races! Sadly I didn't get a video of the her relay team. It was the best race of the entire day! Her team took second, and it's hilarious to watch that particular race. 1/2 the athletes are too busy smiling at their cheering fans to actually swim the race. LOL

15 Meter Freestlye. This one they start in the middle of the pool, so their coaches bring them out to the starting point. I love how she cheers for herself at the end! LOL



This one is a hoot! Angela getting one of her awards for the day.


25 Meter Backstroke. This is Angela's most difficult event, and she ALWAYS stops to see where she is, which disqualifies her. This time she didn't stop! WHOO HOO!


25 Meter Freestlye

Just a couple

Just a couple of my favorite pictures until I have more time.

Hey Monica, tell Adam "Thanks a LOT!"

Me and Angela, a rare photo since I'm usually the one with the camera. LOL (notice the peace sign.)

Area Swim Meet

Sunday was the area swim meet. What an exhausting day! We arrived at 8:00 a.m. and I don't think we left until after 3:00. If I was tired, Angela had to have been totally wiped out. She almost fell asleep between her 3rd and 4th race. Poor kid!

Anyway, she did great! She got two 4th place ribbons, one 6th place, and her team took 2nd fro the relay! Tons of pictures and videos to come!

yittle teeny tiny toofers

Angela's teeth are teensie weensie little things. Yesterday at the orthodontist they were TRYING to fit the bands that go around 4 of her molars, which, when it's all put together, will keep the palate expander in place. They really had to dig to find bands small enough, and the ones they found they'll have to make some modifications to. 

Yesterday was all about fitting the bands, then taking another impression with the bands in place. The impression is used to make the palate expander that will go into her mouth next week. She wasn't super thrilled with the band fitting today, but she still did great! Even when somethings bothering her she keeps her sense of humor and has the staff rolling. LOL

Monday, March 16, 2009

It's a great day!

Even though Angela's morning started out rough, and I had to drive her to school (she was going to try walking, but it's about 4 miles. LOL) today is BEAUTIFUL outside! One of those days that just makes you want to get up and get moving. So, I got some errands run, then went to the Y and worked out. I even STOPPED eating the German Chocolate brownie I'd started putting in my mouth in favor of a glass of water! It's part of a morning prayer I'm saying every morning, but that's a different post.

I'm on my way out to pick up some stuff for Angela's room, then we're off to the orthodontist! I think today is "expander day", but I forget where we're at in the process. LOL

Friday, March 13, 2009

Arrrggh!

Progress on the pirate room is slow, but steady. I now have the whole room cleaned out, and just need to move the furniture out so the new flooring can go in. 

As long as Angela has been talking about the pirate room, she's said, "it has a wheel, and a window!" So, a ship's wheel and a port hole. Angela isn't allowed in that room now until I'm done with it, so the final product is a complete surprise. Among the surprises is this little item that arrived today! (only it's not so little, about 24".) 



He's just not that into you

Sadly, someday, that might be something Angela will come to realize about her dad. This INFURIATES me to no end, and yet, it really shouldn't surprise me. 

When our boys were little, and into all their little boy sports, he was "too busy" to come to any of their games or meets. When he did he had nothing but criticism for how the did/didn't perform. None of that "Hey, you tried your best!" for him. No, none of that. 

So Angela has a big swim meet on Sunday, and scheduling has become an issue. Mostly because....gasp...the meet falls on her dad's weekend. Yeah, like I can tell the state of MN special olympics committee, "Um....excuse me, but that date won't work for us, because she's supposed to be with her dad that weekend."

Ok, the solution is simple, HE can get her to the meet, and WATCH IT, and CHEER HER ON, right? What DAD doesn't love to watch their kid shine? I can name one.

Instead he has spent the day bitching about it. You know, he's going to miss his brother's birthday dinner. WHAT? Because Angela can't go? And wait a minute, DINNER is in the evening, her meet will be done mid-afternoon. Can't she go after the meet? And why can't he go without her? Oh, and he has to pick someone up at the airport but he doesn't know what time. Of course, calling and asking what time the flight comes in would be too difficult. Because, you see, everything for him is "too difficult". I mean, the airport is ON THE WAY to the meet!  Even the smallest things are reasons to get all stressed out and are more than he can  handle. 

Now yes, I'm not supposed to schedule stuff on his visitation weekend. But when the sign up for swimming comes out, I'm not counting ahead 3 months saying, "Oh sorry honey, you can do swim team this year, because that meet falls on your dad's weekend." The kids in special olympics always get the least desired times for ball fields, pool time, etc. Softball is always 6:00 Sunday evening. Who wants THAT time? And that time sucks for every child with divorced parents, and you know 1/2 of all children with disabilities have parents who divorced. I told him, "You know, Angela's opportunities in life are already limited, I'm not going to limit them any more than they already are because of a stupid visitation schedule that you don't give a crap about unless you KNOW it's going to somehow mess up my schedule. THEN suddenly you care." 

But really, all these things were excuses, because....finally.....

the real truth came out. "That's your thing with her. That's not my thing." 

"What do you mean it's not your thing? You mean going to watch your daughter, and cheer her on isn't your thing?

"Yeah, that might be your thing, but it's not my thing." 

"You know, Dean isn't her dad, but HE loves to go watch her do this stuff. He loves seeing the look of pride on her face when she finishes. He LOVES to give her a hug afterward and tell her what an amazing kid she is! He LOVES seeing her succeed. And yet, you...her DAD...says, 'it's not my thing'? SHAME ON YOU!!!!!"

I'm so sad for Angela. I know she would be so very excited to have her dad there in the stands cheering her on. I can just picture the smile of pride on her face as she screams "I did it!!!!" I guess I have to say I'm very lucky to have found Dean, and Angela is lucky too. Because Sunday Dean will be there, and he'll get to hear, "I did it Dean! I did it!!!!" and he'll cry tears of pride right along side me. HE is "that into her"!!!!

School Play

(edited to add: This is one of those random posts that skip around in no particular story order. I think it's just me processing the day, really. LOL)

Tonight Angela and I skipped SOS Players so that we could go see her middle school's production of "Willy Wonka". They did a great job, and she had several friends who were in it.  The Oompa Loompas were a.d.0.r.a.b.l.e! 

I did get extremely annoyed with the high schoolers sitting right in front of us TEXTING through the entire first act. Now, I could care less that they're texting, it was the glow of their phone screens driving me nuts! And, you all know how good I am at keeping my mouth shut! At intermission I let them know it was very distracting and disrespectful to those sitting around them, not to mention how rude it was for the people on stage! I'm happy to report there were no glowing phones during the 2nd act!

So I have to back up a bit. It seems lately that I'm constantly being reminded that I underestimate my daughter. I'm amazed at how frequently I do this. I'm not sure how it happens, because I'm very aware of the things she's able to do. Maybe it's my fear in watching her grow up, and letting her try even more things than she already does. (is it possible for there to be MORE???) We ran into a group of teachers who all said hello to Angela. She informed them, "No SOS tonight. I'm seeing Wonka wonka instead. (she calls it wonka wonka. ROFL) One of the teachers asked me about SOS, then said, "You do keep her very busy"! 

UGH! I know she's busy! I know because every day when she comes in the door, I'm getting ready to get her to some activity or another. Now most would say I'm doing too much with her. Let her just be a kid. but they're all things she's asked about doing, and I've agreed to give them a try. Besides, Angela and boredom are a BAD combination! On the weekends we stick pretty close to home, and she drives us crazy most of that time, making for very long weekends. It's turned out to be not-so-great having friends over, as they either end up being scared to death of the dogs, or they get the dogs so wound up that I'm going nuts. That, and she just doesn't have much here for friends to do. She doesn't "do toys" and hasn't for a  long time. In fact, I just got rid of the last of them. (why store them if she doesn't touch them?) She likes her pretend play, and her friends are very much beyond that. She likes to play Wii, but if a friend is here she prefers they play "jail" with her and ALWAYS be a willing victim of the handcuffs.  

Don't get me wrong, Angela is excellent about entertaining herself, but there's only so many hours she can do that.  Since it's just the 3 of us, Dean and I are the constant playmates, and we're really getting tired of "jail" and "hospital". If I hear another "hands behind your back, you're under arrested!" I'll loose my mind! I always wanted to have one more baby after her, because I didn't want her an "only" for so many years because the siblings moved out. I was in exactly the same place at her age, and  had a tendency to adopt neighborhood families. LOL But God had other plans, and there is no younger sibling. 

I consider myself VERY lucky right now. Angela is the only kid at home, and I'm not employed outside the house, so I have the ability to get her to all this stuff. When my boys were this age they were limited to one sport/activity per season, because I had to get 4 of them to everything while dragging the little sister along. (although the little sister loved it, and now loves to cheer on her cousins at all their games!) Next year, if I find myself back in school, things might be a little more boring around here for her. I bet I'll be employing more PCA's!

Last fall, in the week before school started when we were there for orientation doing things like getting school pictures taken, lunch accounts taken care of, etc. there was also the opportunity to sign up for the school play. They do a regular play in the fall, and a musical in the spring. I didn't let Angela sign up because we're way too busy, and I wanted her to stick to SOS for the year.

Guess what? Next year there is NO WAY she's going to accept that reasoning! Some of her activities are going to have to go. She wants to be ON stage with her friends. I don't think she'll accept being one of the tech crew. Though she loves having a job, she really wants to be ON THAT STAGE! Her whole world is about acting out some show, or reenacting her school day at home. She memorizes things very quickly. Last year's performance for SOS was ok. It was her first time on stage, and brought many tears to the eyes in the audience, but there is always room for improvement. This year she's working really hard on how to deliver her lines with the emotion intended, the same way she does when playing at home.

Oh yeah, the play.....

After the play, she found each cast member and told them what a great job they did. She also purchased a rose for one of her teachers who's on the crew and was very excited to give it to her. Next year, she's going to want to be on the receiving end! LOL

Tuesday, March 10, 2009

Burn'in and slim'in!

Angela has started taking private swim lessons with her Special Olympics coach, "Coach Keanne" at the local Y. We've been members there for about a year but haven't used it NEAR enough! Angela really enjoys walking the track there, but wants me to "go away" so she can be on her own, only she wasn't old enough. Well, they've recently changed some of their rules there, which now allow Angela to use the track and some of the fitness equipment unsupervised if she goes through a fitness assessment AND is granted a certain color wrist brand.

So, today she and I had an appointment for her fitness assessment. I really just wanted her to be able to walk the track on her own and didn't think she'd be interested in the equipment. When will I stop ASSUMING I know what this kid will want to do?

Yes, Angela wanted to learn all the equipment she's allowed to use at her age. Of course, I can't remember the name of any of them. LOL Except her favorite, the ROWING MACHINE! UGH, my kid likes the rowing machine. LOL She did really well on that one too. There is even a fish game on it that is based on how fast/slow they're rowing, or how hard they pull back. Kinda cool1 Of all the machines she learned, the only one she didn't like was the recumbent bike. Funny, that's what she rides all summer! 

After she spent 45 minutes working out with the trainer, and earned her bracelet, we headed up to the track so she could learn the rules. She was already tired by this point, but she still walked 9 laps, which is just 2 laps short of a mile. Good for her! Next time I'll bring her MP3 player along so she has something to listen too. Her biggest concern was that I not be within her eyesight so she could be on her own. 

Angela once had a teacher who described Angela just right, "Fiercely Independent!"

I always try to keep Angela's weight in mind. When her activity level decreases, even for a week, she puts on weight REALLY fast! Think of all the adults with DS that you know. How many of them are at an average weight, vs. how many are overweight? Angela might just be in that category when she gets older, but I will know I tried to keep her active. Besides, keeping her active means I have to be active too. 

But Angela is STUBBORN, so I have to really think how to word things before I approach her. Word it the wrong way, and forget it. But, I can used her independence to my advantage: "Hey Angela, I'm going to the Y. Wanna come along, and walk the track by yourself?" This almost guarantees I'll get her out the door. LOL


What will you do to help stop it?

Friday, March 06, 2009

Proven wrong..AGAIN

I don't know why I thought Angela would have a problem with this. Clearly she doesn't! I just wouldn't be a mom if I didn't worry, right? LOL  Just an FYI, Angela is already asking to put other numbers in the phone, and yours could be next!


Monday, March 02, 2009

More on the cell

Oh good grief, these people are irritating. Here's the latest reply from them:

Dear Leah, 

Thank you for your reply.  

I do understand that the phones mentioned in the previous email are not 
as simple as Jitterbug.  However, if we compare the prices all these 
handsets with Jitterbug, it is almost the same.

Moreover, as mentioned in the previous email, we do not offer Jitterbug 
handsets.

We appreciate your understanding in this regard.


First, if they would have someone respond who speaks fluent English, it would be nice. Secondly, when did I ever say anything about PRICE? gggggrrrrrrrrrr Here's my next reply. Why do I bother wasting my time?:

Thank you for your response. Obviously price wasn't what I was looking for. I was looking for SIMPLICITY, which is the purpose of the Jitterbug. I was wondering if Sprint has anything similar? The jitterbug is made by samsung, (all my previous phones are by samsung) is there any reason sprint can't carry it?

Cell phones

So, I'm in the  process of teaching Angela how to use a cell phone. She doesn't NEED to know this yet, but as with all things, I have to teach her BEFORE she needs to. It's called "pre-teaching". 

Anyway, I have a second phone on my plan that has just been sitting here to send along with PCA's who might take her places, but they all have their own cells so they don't need it. I figure if she can repeatedly get into computer files I told her to stay out of, she can get into the directory on the phone, so the only numbers in it are me,  Dean,  home, and her dad. It does not have internet, text, or picture capabilities. 

Even as simple as the phone is, I've been looking around for an easier one. The Jitterbug is just what I'm looking for. It's not baby-ish looking like the Firefly is. It's designed for adults, yet very simple. 

Unfortunately, Sprint, who I've been with for 7 years, doesn't have this phone available, and I need something that can be used with my plan. So I emailed Sprint to ask some questions about getting the Jitterbug. 

Here's the response I got from them:

Thank you for contacting Sprint. I am glad to assist you about the 
handsets available for you son.   

We do offer different handsets for specially able person. Though, we do 
not have the Jitterbug handset with us but we have phones with similar 
capabilities. 

I have provided the list of the handset below: 

BlackBerry Curve 8350i Smartphone for $149.99 
BlackBerry Curve 8330 (Red) for $99.99 
BlackBerry Curve 8330 (Titanium) for $99.99 
Centro?by Palm  for $79.99 
Rumor by LG for $49.99 


Umm HELLO!!! What part of simple does a blackberry, a Centro, or a Rumor meet? (I have the Rumor phone, by the way) I emailed them back and asked them to have someone who knows what they're talking about to contact me back. 

please please please

Please watch the video linked below. First of all, this is so totally Angela. Secondly, the end will catch you.

Go watch this video!!!! 




To my adult children who have "moved out"

A note to my adult children who have moved out. 

You forgot to take your stuff with you! Remember when I called you a few months ago and said, "Come pack up this stuff that you left in the basement bedroom, or I'm throwing it out!" Remember that? 

Well, two of you came (there have been 3 of you in that bedroom in the past 6 years and you've each left stuff behind!) and you each packed up a couple of boxes, and then LEFT THEM. What is wrong with you? What part of "come get your stuff" is so tough to understand? 

Ok, so I tried to be understanding. I know when you're couch hopping that you can't really ask the owner of the couch if you can store stuff there. But it seems you've both been settled in various couches (or are they beds now?) for a few months. To me that's called "living there" and not "couch hopping". Especially when you're paying "rent". 

Do you remember two weeks ago, when I called again and said, "No, really, I'm throwing the stuff OUT!" Neither of you have shown up, so I am now assuming what is in that room is no longer important to you, so I have spent the past 2 days bagging up stuff. 

I am shocked at what I am finding. 

Not just the items themselves, because I don't think anything would shock me. (well, one sent chills up my spine!) It's the sheer VOLUME Of stuff that was in that room. I had NO IDEA a you boys could cram so much SHTUFF into such a small area!!! 

Since you haven't actually SEEN that room for some time, I'll remind you that it's L shaped and approximately 200 square feet. There was A SMALL walking path in there, and that's it! I knew there was a bed somewhere, and I found it today! 

I have moved everything to the main living are of the basement and sorted it into three piles. There is the "donate" pile, which includes amy item of clothing that is still wearable. There are EIGHT garbage bags of clothes in that pile, some of them brand new. If you have found that you're short on clothing, I suggest you get over here before the goodwill truck comes on Tuesday. 

There is also a "craigslist" pile. I'll use the items in this pile to make a little bit of cash, which will be used to repaint the walls you have collectively wrecked, and replace the carpeting that is beyond any steam cleaner made. 

The last pile is the "trash" pile. I really need to rent a dumpster since there is so much of it. Unfortunately that's not in the budget, so instead I'll throw out a couple of bags per week. 

The rest of the stuff that is in the closet belongs to Dean. Today I made the mistake of saying, "Hey, look what I found!" This created a small fit of excitement, as he wondered what else was in there that he hasn't seen in YEARS! It didn't take me long to realize I wouldn't be able to go any further until he is away at work. 

Apparently what had been in that room was vacuum packed, because once I moved it to the living area, it expanded exponentially. It literally tripled in volume. The living area, which is about 800 SF is FULL. I actually sat in the middle of it and CRIED because now I have this HUGE mess to deal with. 

The good news is, one day with Dean gone and the room will be completely cleaned out. Your sister will soon be moving in there. After all, she LIVES HERE, and yet has been stuck with the smallest room in the house. Thank God she doesn't collect stuff!

__

My blogaversary

Imagine that number of pages before you. Yes, my friends, today is post number 500 for me! It sure took me long enough! I guess I'm not the die-hard blogger that some of my bloggie friends are. LOL 

I was going to post about this right after my previous entry, but I wanted to post something special for my 500th post. Unfortunately nothing brilliant came to mind. I do  have a couple cool things coming up, but nothing 500-ish. Well, I could do a give away of some of the 500 items I found in the basement bedroom yesterday. Anyone wear a size 6 sorrel snowmobile boot? I have a pair that is brand new, never worn. 

I guess, in the real worl, 500 is just another day.