Naked In My Robe

C'mon. You've all done it. Throw a robe on to make a trash run, or to grab something out of your car. I, for one, will never again be caught naked in my robe. Surely if I'd been fully clothed I wouldn't be typing this entry one handed!

Let us take a walk back in time to...say...Wednesday, March 12th. At 9:00 a.m. I was just sending Angela out the door when Dean called, "Don't send Angela out the door alone! There is a huge patch of ice and she's going to fall." So, I slipped just my toes into my tennis shoes, and started Angela out the door...with me naked in my robe. You know, the kind you have to re-tie every 8 seconds? We have this horrible patch of ice right on the front step that is quite large and is head injury waiting to happen. Angela has very poor balance. I held her up and skated her across the ice sheet, then watched to make sure she made it down the rest of the driveway ok.

Quick, before the bus came...because I was naked in my robe...I turned to go back into the house. I approached the ice carefully, but as you all know, once the fall begins, you're S.O.L. I could see that my head was aimed straight for the cement step, and my immediate instantaneous thought was, "ooohh Don't hit your head! You'll be out here awhile..naked in your robe!" It must have been in that second that I stuck my arm out to...I don't know, push away from the step maybe?

The next thing I knew, 3 body parts hit the ice at once. My left hip (it's a lovely shade of green now) my left cheek (cracked one tooth that now needs to be repaired) and my left hand/wrist/elbow-all-at-once as I heard a horrible C-R-A-C-K sound. The pain told me what happened. I screamed "oh my GOD I broke my ARM!!! Oh my GOD!!! Oh God Oh God!" and then I looked up at my arm (and my hand that was where it shouldn't have been)....and passed out. I'm sure it was only for a few seconds. What woke me up was the feeling of wanting to vomit. That and the cold ice against my now-bare front side.

I tried to just breathe. From where I was laying I could see Angela standing at the bus. Good..she's safe...she didn't hear me screaming. Breathe...the pain was like nothing I'd ever felt before. Breathe...

Getting up and off the ice. My naked front side had made the ice melty and slippery. Well, I'm not exactly sure how I did it, except I do remember trying to get hold of the posts on the deck railing. I was tangled in my robe, and my knees and good hand were slipping on the ice. Makes for a great visual, doesn't it? I managed to get into the house, but by then the world was spinning badly. I found my cell phone but couldn't for the life of me figure out how to open the darned thing. When I finally did I couldn't remember Dean's number. Oh yeah...speed dial.

(your difficulty reading this is the same trouble Dean had understanding me screaming in the phone.)

Dean: Hello?
Me: OHMYGODIBROKEMYARMGETHOME!!!!!!!!!!!!!
Dean: What? Who is this? Leah? What's wrong? What happened?
Me: GETHOMEIBROKEMYARMOHMYGODITHURTSGETHOME!!!!!
Dean: You broke your arm? Honey, I'm THREE HOURS AWAY! I can't get home. Is the neighbor home?

I heard "cant get home" and "neighbor" and hung up the phone. I remembered that speed dial thing and found my neighbor's cell phone on it.

Cindy: Hello?
Me: CANYOUTAKEMETOTHEHOSPITALIBROKEMYARM
Cindy: Huh? Who is this?
Me: Leah... can...youtakeme...tothe....hospitalI.....brokemyarm
Cindy: Oh..oh..I'll be right there! Right THERE!

I got off the phone and realized all 3 big dogs are running around outside, and the neighbor isn't exactly fond of dogs. The puppy was dancing around my feet trying to trip me. I hollered for them all to come in, and got them downstairs into their kennels, carrying the wiggling puppy who hasn't yet mastered stairs in my good arm.

I climbed back upstairs and went to the front window to see Angela just stepping onto the bus, and my neighor Cindy down there as well. That's when I looked down and realized somewhere along the way I'd lost my robe. Now I was just naked, with my hand hanging at a sickening angle. I headed for the bedroom and grabbed my "comfy clothes" which would be jeans and a sweatshirt. Obviously I wasn't thinking too clearly, huh? I managed to button the jeans with one hand (making any OT proud, I'm sure!) and figured out how to get the now tricky sweatshirt on. While hollering "ow...ow...ow" I pushed my broken arm through the sleeve, then pulled the rest over my head. The thought of the pain when I did this still makes me nauseous.

I looked for my shoes, but realized one was still laying out on the ice. I slipped my toes into one shoe and tiptoed outside. There sat my shoe, in the middle of the patch of ice...well out of reach. Grabbing a nearby shovel I dragged the shoe to the safety of the cement and stuck my toes in.

About this time Cindy arrived at the top of the drive with her van, but I couldn't get to her because I had to cross that darned ice, and I told her don't even try it or there won't be anyone to get us to the hospital! Somehow she coaxed me over the death patch, and got me hoisted into her huge 15 passenger van, then asked, "Which hospital should we go to?"

We arrived at one of the area hospitals, got my arm in a sling and some drugs into my system, only to be told it would be a 4-5 hour wait before I'd be seen!!! Cindy had a light bulb moment, "One of my kids had hand surgery at this orthopedic center a couple years ago, and I remember seeing an "acute care center" sign in the building. I wonder if they do stuff like this?" A couple phone calls later (quick, before I was too loopy to sign anything) we were on our way. At least the drugs were kicking in so I wasn't in excruciating pain anymore!

This place is amazing! It's called "Tria Orthopedic Center" It's been there a couple years but since this is the only area of specialty Angela has never needed, I didn't even know it existed!

To give you and idea of the type of care a person gets there, when we pulled in front of the doors, the concierge came to get me from the van! I was wheeled up to the intake area, and within just a few minutes was taken to X-ray. I have horrible memories from when I was 15 and broke my elbow and the techs forcing my arm into a position it didn't want to go. This tech was so very gentle, and instead of making me turn my arm all over the place, she slanted the table and made the necessary adjustments that way. I was then brought back out to Cindy, and almost immediately brought back to an exam room.

A couple minutes later the Dr. stuck his head in. "Oh..oops..wrong room. I'll be seeing you next. But, just to let you know, you have a really bad break and are going to be needing surgery." Then he disappeared.

GASP

He was back just a minute later and pulled up my xray. I had 3 breaks, a small one on the end of the ulna (the small bone on the outside of your arm) and two breaks on the end of the radious (the larger one on the inside of your arm) and would need a plate or two and some screws installed to put it back together. He asked when I had last eaten and was very excited to hear I hadn't eaten since the night before. It was now 11:00 (I broke my arm at 9:00) and they could get me in for a 1:00 surgery. Had I eaten I would've had to wait until the next morning!

But Dean wasn't there yet, and I really wanted him there before I went in for surgery! He ended up arriving at 12:40. Cindy said a quick prayer for me before leaving us, and we were so very thankful she was able and willing to help me that morning! Without her knowlege of Tria I probably would have gone up to 2 days before having surgery.

Eventually we were brought back and I was seated in a surgical chair. I had an IV placed, and was given some more drugs, and met with the surgeon. (and Dean got to see the xray for the first time. He turned white.) Then the anesthesiologist came in to give me a nerve block in arm. They did this by putting my arm up over my head sticking a v-e-r-y l-o-n-g needle into my arm pit. I felt electrical shock-like sensations zipping through my arm, and Dean said, "Oh cool!" as my fingers jumped around. That's the last memory I have prior to surgery. Dean later told me that after the electrical zingers in my fingers they took a bigger needle and shot stuff right into the bones of my arm. BLECH! Glad I don't remember that!

The next thing I remember is waking up in the recovery room, my head hanging on my chest, and wiping the drool off my chin. I asked for Dean and he appeared from some far away fog. We sure didn't sit there very long! I know I was in surgery for about an hour and a half, and we were home by 5:30!

That night was all about heavy drugs and lots of sleep. Well, really the next two days were. By Saturday I was off everything but Tylenol, which of course I had to overdo a bit, putting me back on drugs for Sunday. If you called during those first couple of days, it's likely I don't remember it, and cannot be held responsible for any promises of "I'll call you back"!

crack

just a short one handed note. mpre details later cuz i'm on heavy drugs right now. fell this morning. broke my wrist in 3 places, surgery to fix it. dean says what are you doing on the puter? more tomorroe. bye

To worry or not to worry....

Tonight I came home to find a note on the door, from a mom of one of the other kids that went to Ca. with Tyler. She couldn't find my number but remembered where we live (we're kind of hard to find) wondering if I'd heard from the boys. Turns out one kids dad did buy them bus tickets, and about a week ago had them sent to a UPS office near where they were staying. The tickets were for a bus home at 4:30 this afternoon. To his knowledge the envelope was not picked up. We're waiting for him to confirm this.

Nobody has heard from ANY of the boys in 10 days, which kind of has everyone worried. I did look around in the county jail system there to see if any of them had been picked up, but they're not in custody.

Now what? Any suggestions? We can't list them as "missing" because they're adults (or at least the legal definition of one!) It's very strange that NONE of us has heard anything from them. One boy's mom said he was calling her every couple of days, then just stopped 10 days ago. Exactly the same as my contact with Tyler was going. They're resourceful enough to find a phone and contact one of us, but they're also kids and if they've managed to get into trouble will avoid us. I'm hoping that's all it is.

If anyone reads this who is in San Diego County, specifically Poway, drop me a note, will ya?

What's New With the Queen?

Many of you have emailed to ask what's new with Angela? To be honest, I'm having a really hard time writing anything positive right now. Her behavioral issues have been off the charts since we came back from our trip. Actually, the trip itself wasn't so smooth as far as behavior goes but it's continued to get worse.

About 2 weeks ago we decided it's time for a medication change. The only problem is we have to start the new one and get it to maintenance level and THEN start decreasing the old one. That means that now she goes from crabby to very sedated and sleeping. UGH! Poor kid! We've had to miss a few things (like her favorite last night, agility) because she's just too sleepy. Her behavior is improving some. I just can't wait until we're done with the change.

Last week she was able to go downhill skiing for the first time, which she absolutely LOVED!!! This was a 5th grade field trip, and the adaptive P.E. teacher went along. She told me there are lots of great pictures so I'm waiting for her to send them. Angela even rode the chair lift, which confirmed that it was a good thing I didn't go along! LOL

The Special Olympics area swim meet is coming up soon, and she's looking forward to that! Can you believe it? The same kid who in September wouldn't put her face in the water can now swim 20 meters unassisted. That may not seem far to some, and she still has a long way to go before she's doing a regular freestyle (she's doing pretty much a dog paddle right now) but still she's made major progress!

The Fledgling

The Fledgling (aka my son Tyler) is coming home. You may remember my post a couple weeks ago when he decided to up and move from Minnesota to California. No money to speak of, no job, just an adventure of sorts. You know...the kind that cause mothers to go gray.

He's been calling me every couple of days or so, just to check in and tell me of their latest escapade. By his 3rd day out there he was complaining about how hot it was. By the end of the first week none of them had found a job. ("Mom! All immigrants have the minimum wage jobs!"...something we warned him about being 20 or so miles from the border.)

About a week and a half ago he called me and sounded really down. "You were right mom. I should have listened to you. How come you're always right about stuff like this? Anyway, we're coming back we just have to get bus tickets. Only problem is we only have $70 left and it costs $175 for two of us. (they went with 3, turns out the 3rd kid is staying out there.) I offered to buy him bus tickets but no, he didn't want me to do that. I offered to wire him some money so they could EAT on the trip home but no, he didn't want me to do that either.

I haven't heard from him since. His phone is now disconnected, and I know he doesn't have any money left.

And so the mother worries.

More on Big Brother...no, the OTHER one

I'm talking about THE "Big Brother". The one that watches over us all, only I really didn't realize how much! Last night I was reminded if an incident that happened a couple months ago.

Angela and I were on our way home from play rehearsal, which is about 30 miles away in Hudson, WI. It was late evening and we were on the 3 lane interstate when I ended up in the center lane behind a car that was weaving all over the place. He weaved 1/2 way into the right lane, then back to the center then slowly 1/2 way over into the left lane, and continued on that way.

I pulled out my trusty cell to call the state patrol to report the erratic driving. They asked my mile marker, and to describe the car w/license plate (as I tried to read the plate it occurred to me my vision might be getting worse. LOL) They asked me to stay on the phone and stay behind him, letting them know if he exited, of if he does anything else unusual.

After about 2 minutes the dispatcher says to me, "Did you just turn your blinker on to move to the left lane?"

Me: Ummmm....yeah?
Dispatcher: You're in the Suburban, right? Is it Silver or beige?
Me: Beige kinda.
Dispatcher: Yep, I see you.

I'm thinking? You SEE ME?

Me:(after about 15 miles) "They guy is exiting now on .....road. Holy cow! He just went way over the curb! Good thing it was a low one!"
Dispatcher, "Yeah, I saw that!"

So I followed the guy into a McDonalds drive through.
Dispatcher: Once he goes around the corner of the building, he'll be out of my sight. Can you park on the other side? I have a patrol next door in a car lot but he won't be able to see the car until it's on the street, BUT he can see your headlights, so just flash them as the car gets ready to pull onto the street.

This whole thing amazed me. They were able to watch our every move with the exception of the few minutes we were waiting for him to go through the drive-through. How freaky is that? I kept looking around for a helicopter or something, but didn't see anything. LOL Finally I asked, "WHERE are the cameras?"

Dispatcher: Wouldn't you like to know?

With the best intentions

Sometimes, when you're a parent, you're forced to make decisions you don't want to make. They're decisions nobody warned you about when you decided to become a parent. As many parents of children who have disabilities will tell you, we're thrown into this position far more, and with more serious implications, than the average parent.

Let's see...what decisions have I had to make? How about when your child needs a life saving surgery, but its considered "elective", which means you have to CHOOSE if it's the best choice for your child, but the POTENTIAL side effects of the procedure could be worse than the reason for the surgery in the first place. Yet not having it would be risking your child's life. Yeah...been there a couple of times.

Making decisions about your child's education is another area. This may seem very simple to some. Most people just send their child to school every day, attend a conference or two each year, read their child's report card. They might even talk to the teacher a couple of times on the phone. I know parents who don't even know the name of their child's teacher! Most never have reason to talk to the building principal, much less anyone higher up in the ranks. Yeah...there are many days when I think "Ingnorance is bliss" is the place I'd rather be.

No, when you have a child who has significant learning issues (and in our case, significant behavioral issues) you don't get to sail through the school years. In the upcoming weeks I have Angela's 3rd or 4th IEP meeting of the year (most parents of kids in special ed. only need to attend 2...we'll have another before school gets out.) I know just about every specialist in her building because I HAVE to, and because they attend all these meetings as well. I speak with Angela's teacher several times per week, and if I go a few days without talking to her we wonder what's wrong! As a parent you have to decide where is the best place for your child. Your neighborhood school is very possibly not the place. You might not even be able to send your child to school within their district, but to send them elsewhere. You put your child who cannot defend themselves, or speak up for themselves, on a bus with strangers and hope that they'll be ok. You entrust them to people who are supposed to be the "experts" but keep having to remind yourself when it comes to your own child, YOU are the real expert. Every day will bring a challenge you hadn't anticipated, and sometimes you'll go to bed at night wondering how you'll get through tomorrow.

Even our trip was by no means easy. There are a lot of times we had to make a hasty retreat from some activity because Angela was starting to get too aggressive. Or the time at at Sea World, while watching the baby dolphin tank, when Angela grabbed the hair of a little girl who was unfortunate enough to be within arms reach.

But with all the decisions I've had to make on Angela's behalf, some of the worst have been related to her medical issues. Right now it's in the form of choosing what/how much/when/why we would want to use medication to get a handle on the behavioral issues. Angela has been on behavioral meds in one combination or another since she was about 5 years old. Some with great success, and others...not so much. But for some reason, for kids with Down Syndrome, even the successes with meds don't last very long before you're scrambling for a new combination.

Our longest success started in July of '06. That little magic pill(s) had Angela go from being a child I could take in public, to her happy, energetic, funny self again. She was truly a joy to be around and take everywhere. I had the pleasure of talking with one of the Guru's in the field of neuro-behavioral disorders in people with DS who confirmed what I already knew....that this success would be short-lived.

It lasted a long time for Angela, well over a year, before things started to go downhill. I started discussing a medication change with her doctors back in October, but then things kind of settled down so I decided to hold off. Well, we can't hold off any longer, so have started the slow process of adding a new drug, then eliminating the old. This isn't something you can do overnight. Instead it takes weeks to allow blood levels to slowly increase or decrease, depending upon the change that you're trying to make. Increase too fast, and you can cause serious liver or kidney damage. Decrease too fast and you can cause serious withdrawals.

What I hate most though, is the fact that I'm pumping my kid full of drugs. One morning last week I cried as I got Angela's morning meds ready. There were EIGHT pills! Some of her meds are not behavior related, like the prevacid she takes for reflux disease, colace to keep her "going", and a vitamin supplement. As I placed her pile of pills in front of her I had to wonder, "Do I even KNOW the REAL Angela anymore?" I know she was without meds for several weeks in the spring of '06 and....well...to say it was "difficult" is an understatement, which is partly why our "miracle drug" seemed to have such a dramatic effect.

Yesterday I cried on the phone to the pediatrician. I hate this. I really really HATE it! How can I keep doing this to my kid? She reminded me that the drug on it's way out is a low dose, and it won't take long to get her off it, and we have a long way to go on the new drug before it's at maintenance level, but I don't feel any better about it.

I just want a happy kid. Right now, Angela is NOT happy! She's spending more and more time in isolation at school because having her with out kids is just not safe much of the time. She's also spending more and more time in her own world doing self-stimming behavior, which I know is drug induced, and makes me want to take her off EVERYTHING. An interesting observation though...I find myself in this same med-change situation at the same time every year. It's definitely cyclical, which makes me wonder about all kinds of other things.

I've heard from lots of parents who's kids with DS are now adults, and they tell me this was the worst age BY FAR! That by high school things settled down quite a bit. I'm hanging onto those thoughts with every ounce of my being.

What Big Brother Doesn't Know

I have one of the biggest smiles I've ever had on my face at this very moment. Why? Because finally someone is going to feel the consequences of using the "R" word on national television. Remember this post?

From the New York Post

February 27, 2008 -- THE "Big Brother" contestant who stirred up a controversy when he called autistic children "retards," has been fired from his job.

But Adam Jasinski, who worked for the United Autism Foundation, doesn't know he's been canned.

He is sequestered in the "Big Brother" house in LA, cut off from contact with the outside world, in keeping with the show's rules.

The foundation announced his firing on its Web site yesterday.

At least one advertiser pulled out of the show following the public outcry over the crude remark and several autism groups even called for CBS to cancel the reality series because producers chose to air the remark in an edited version of the program.

Jasinski was heard on the program saying that he could call children with autism whatever he liked because he worked with them.

"Mr. Jasinski will no longer work for or represent the United Autism Foundation since he caused tremendous damage to UNIAF," the announcement read.

There is also a comment on the United Autism Foundation website

Angela's Wish

Photo and video editing at www.OneTrueMedia.com

The Fledgling Called

Tonight Tyler called to give me an update on his new life in California (or "Cali" as he prefers to call it.) He's applied for jobs at a couple of places, including Taco Bell, where he was working here. Hey, it's a job!

The grandmother of one if his friends gave them some tents, so they're going to be striking camp...hopefully somewhere it's legal to do so!

He's having fun and enjoying the adventure, and I guess that's the most important part, right? I've said all kinds of prayers for him, and try to remember that God loves him even more than I do. I pray that he listens to that still, small voice and makes good decisions. That he stays out of harms way. That he's able to keep enough money in his pocket to eat, stay warm and dry, and to pay his cell phone bill so he can keep calling home!

So Where Is It?

So where is the photo montage everyone is asking me about? It's COMING!!! I finally got my photos yesterday (Friday) and am working on getting everything uploaded.

The most difficult part isn't doing the pictures, it's finding THE perfect music to go with them. Not only does the song have to PERFECTLY fit the mood I'm trying to convey, but it has to be the right length as well! (otherwise you're stuck adjusting how long each photo displays, how it transitions, etc. which becomes even more time consuming than the project started out to be.)

Several people have said, "Can't you just use some Disney music? Anything Disney will work!" But this isn't quite so. I have downloaded every Disney song there is that has to do with wishes, hopes and dreams (and often several versions of each one) and they're not quite right for what my heart wants to say. And so, I keep looking.

I also have this issue about timing certain pictures to what's happening in the song, (watch my "An Amazing 11 Years" video and you'll see what I'm talking about.) I know...I know!!! Throughout most of my life I'm a pretty random and scattered person, but somehow, when it comes to these montages the perfectionist side of me comes out! Believe me, it drives me crazy too.

Spreading His Wings

For about 3 or 4 weeks my 19 year old son Tyler has been talking about going to California. Well...not "going" really, more like "moving". Cuz, you know, he has a minimum wage paying job, the clothes on his back, and that's about it.

I thought it was all talk, except that while we were on the Make A Wish trip there were lots of phone conversations with his friends about buying bus tickets, who's paying for what, etc. I began to get a little worried, some of it for him, and some of it for Angela. She already has one brother who she sees only once every year or so, and she misses him terribly. She's very attached to all her brothers, and I worry how this will affect her that yet another one has moved away. But I digress.

Tyler and his friends really didn't have much of a plan aside from buying tickets. No jobs waiting for them when they get there, and no place to stay. You know, a well-thought out adventure that I had to sit back and watch unfold!

We arrived home on Sunday evening, and he left almost as soon as we got in the door to "get things done" before getting on a bus Monday night. Things like one of the boys didn't have an I.D., and driving around to say goodbye to everyone. And, since none of them have a car, they rented a U-haul to drive around in. Cuz...you know..they have all kinds of money to spare! LOL

Monday afternoon he came back, just for a few minutes, to say goodbye. He gave me a hug, and then hugged Angela. She asked him, "You're coming right back Ty? Tomorrow you come back?"

I answered, maybe incorrectly but I wanted her to understand, "No Angela. Tyler won't be back tomorrow. He's going to be gone for a long time, like Robbie."

She got big tears in her eyes and gave Tyler another hug, then watched at the kitchen window as he walked out the door. His friends were waiting in the cab of their rented truck, but when Tyler left he walked around the side of the garage, staying out of sight for several minutes. I know he went there to cry, that he realized just how big this really was, and that it wasn't just about him, it was about all of us.

The bus was supposed to arrive in the bus station around 9:30 pm that night, but he called me at 10:30 asking if I knew a way to check the bus schedule because it hadn't arrived yet. When the bus did finally show up there weren't enough seats on it (how does this happen when one buys a ticket? And, I didn't realize there were still that many people who traveled by bus.) After spending the night who knows where, they finally got a seat the following morning.

He called me several times throughout the ride, to tell me where they were and about the various people on the bus. They finally arrived in Poway, CA yesterday morning. A friend of a friend picked them up, and the first thing they did was visit a beach. (I think this is hilarious, considering while we were in Florida we couldn't get Tyler to go in the ocean past his ankles...because...you know...there's sharks and stuff.) They climbed some big hill, and swam in someone's pool. Today they plan to look for jobs and a place to live, because between the three of them they have about $800 left, and that ought to get them an apartment on the beach, huh? Never mind food!

So why am I telling you about this? I'm writing to tell you about some of the requirements of motherhood that nobody told me about. Like the part about letting go. Letting them fall on their own butt, but being ready to help them back up if need be. The part about sitting back and watching them, knowing exactly the mistakes they're making but really not being unable to say anything about it. Don't think I didn't try talking him out of this big adventure. Don't think I didn't try to help him come up with some plan of action, like saving money first! I did all those things, but in the end it comes down to one young man wanting to strike out on his own (and get out of the sub-zero temperatures of Minnesota) and find his own way.

I'm still going to put some money aside for an airline ticket for him...just in case.

Home and crying!

We are HOME, and I'm crying. You might think it's because we left the 85* sunshine to come home to snow, but no...it's not that. Instead I'm crying because I have a disk of 400+ pictures I took that the tech guy at the Give Kids the World Village took from my memory card and put onto a disk...AND I CAN'T OPEN THEM! Oh no!!!! I emailed him but don't expect to hear from him until Tuesday or so. I'm just sick and trying not to cry!!

Not breathing easy

12:45 a.m.
In just 3 hours and 15 minutes I have to wake up everyone in the house, so we can climb in limo for a ride to the airport. Seems way too easy, doesn't it? Angela thought so to, so she decided to spice things up a bit.

Tonight we brought the dogs to the boarding kennel, and on the way Angela sounded h-o-r-r-i-b-l-e!!! I could hear the peds voice echoing in my ear "If she gets worse, bring her in for a chest x-ray before getting on that plane!"

So I brought her into the ER around 7:00 tonight( or would that be last night?) because she was wheezing too bad, and she sounded kind of pneumonia like. Three neb treatments and a chest x-ray later, she does NOT have pneumonia, but was having a very bad asthma attack. Her oxygen sats were only so-so, but once we finished the last neb they were back up where they were supposed to be. The Dr. said he had no problems with us getting on the plane, and said the Florida air will be great for her. I sure hope he's right! Oh, and I don't remember who I was talking to today when I said something about how flushed she was. (she actually looked flu-ish which REALLY had me worried!) I found out that was from the Decadron. Nobody told me that might happen. Oh well...live and learn. We also came home with Zithromax as a preventative so she DOESN'T develop pneumonia (which she is so prone to do.)

Ok, I'm off to catch a nap before it's time to load up. Thank you everyone for the well-wishes. It all seems kind of surreal, this whole Make A Wish thing. I've been walking around numb for the past couple of days, just trying to take everything in. I didn't even cry at the salon yesterday, so I KNOW my brain is on disconnect mode.

I'll have lots of pictures to post in a week or so. Man..now THAT montage will take forever to put together!

Angela's day at the Spa

Angela's day at the spa, courtesy of "Make A Wish" of Minnesota

Make video montages at www.OneTrueMedia.com

The Mother at the Swings

This was shared with me on the Down Syndrome Listserve. Beautifully written.

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home
drawing cartoons with my husband and I'm swinging my six-year-old son
Evan at the park. Evan laughs and giggles and with each wide arc of
the swing, his smile grows ever larger. The mother next to me smiles
herself and says, "Boy, he really loves that, doesn't he? I mean,
kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to
swing isn't the same reason her daughter, in the swing next to us,
loves to swing. My son loves to swing because he is blind and non-
verbal, because he has what is termed "sensory integration
dysfunction" and requires enhanced "vestibular input." Swinging gives
my son the kind of stimulation other kids, those who can see and talk
and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs
louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's
not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how
high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he
definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a
pound. His twin sister died four days after birth when we removed her
from life support. Evan was hospitalized for six months and came home
blind, with feeding difficulties, chronic lung disease and global
developmental delays. Soon after that, he developed a serious seizure
disorder and was on medication until his fourth birthday. He did not
walk until he was five, still does not eat anything other than pureed
baby food and formula from a cup, and has only a word or two --
variations on "muh muh" -- which he uses indiscriminately for "more"
or "mama" or "open." I have watched my friends' newborns become
toddlers and school-age children who can walk and laugh and talk and
read, all while my son continues to function at the level of a two-
year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow
only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a
handout, a road map for the potential reactions of friends and family
members to our new status as parents of a super preemie. Potential
support people came divided, according to the handouts, into the
following categories: the rocks, the wanna-be-theres, and the
gingerbread men. It warned us that people we might think were "rocks"
could unexpectedly turn out to be "gingerbread men." Just like the
story, they run, run as fast as they can from you when they hear of
your baby's birth.

I quickly found that the guide was right, that I was supported by
only one or two rocks, and that the rest of my friends and family
members had become gingerbread men. As Evan's disabilities became
more obvious, after he left the hospital and in the time that
followed, I found new rocks and said goodbye to the gingerbread men.
And I found a new category for the characters in the social worker's
handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her
observations, and why she pretends there is nothing different,
nothing dissimilar about her child and mine. All kids love to swing.
The mother at the swings would like for me to tell her what it's
like, how my son is different, and how he is the same. She wants to
know about the cane he uses, and the challenges of having a non-
verbal child, and how I manage to understand my son and communicate.
She'd like to ask, What does his future look like? And How are you
with all this?

She wants to know but she doesn't know how to ask. And so she tells
me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the
swings, and how to say it. To reveal the truth, graciously. To let
her in and help her understand. To tell her that yes, all children
love to swing, and my son loves to swing and the reasons are both the
same and different. That it's hard to watch her daughter, with her
indelible eye contact and winning smile, and not mourn for what my
son can't do. That some days my grief over my son is stronger than my
love.

It has taken me even longer to appreciate the mother at the swings,
to know that she and I have more in common than I once thought. To
know that her curiosity is a mother's curiosity, one borne out of
love and tenderness and a desire to understand a child, my son, one
who happens to be different. That she will listen and sympathize when
I offer my observations. That her compassion and thoughtfulness mean
she will take the knowledge I share and use it to understand other
mothers like myself, some of whom could be her neighbor, her cousin,
her sister, her friend. And, finally, that she wants to know so that
she can teach her own child, who also loves to swing, how to embrace
and treasure what makes us all different. And the same

4:30 a.m...

Please pray that Angela gets better FAST! Airport security isn't fond of nebulizers as carry-ons. Decadron helps, but I just gave her the last dose of it and I think that's all she's allowed. The poor kid is on EIGHT different drugs right now!

Response from the Department of Education

2 1/2 months.

Because of the holidays, it took nearly 2 weeks to complete the investigation, and two full months for me to get the report from the Minnesota Department of Education, Division of Maltreatment. Things take time.....I know...it's hard to be patient. Please not that any highlighted text is mine, and was not included in the report.

So the report starts out with lots of explanatory stuff, including the definition of maltreatment.

Minn. Stat. 626.556, Subd. 2(g),physical abuse

• Physical abuse means any physical injury, mental injury or threatened injury inflicted by a person responsible for the child's care on a child other than by accidental means, or any physical or mental injury that cannot reasonably be explained by the child's history of injuries or any aversive or deprivation procedures, or regulated interventions, that have not been authorized under section 121A.67.
• Corporal punishment means conduct involving hitting or spanking a person with our without an object or unreasonable physical force that causes bodily harm or substantial emotional harm and is not allowed to reform or penalize student conduct.
  

Summary of Findings

1. The eleven year old student has Down Syndrome. She participates in mainstream education with support from paraprofessionals.
2. The Student's parent reported that the student is hearing impaired has conduct disorder, and difficulty with her attention span.
3. There were no reports of injury to the student as a result of the incident.
4. The Student was not interviewed because of her developmental delays and because she had been asked about the incident on several occasions.
5. School officials became aware of the incident when the Student's classmates were overheard talking about it.
6. The Student and several other students told school officials that the paraprofessional had slapped the student's face after the student had slapped the paraprofessional.
7. The paraprofessional was interviewed by school officials and denied that she had slapped the student.
8. The MDE investigator and the police interviewed five students. Two of the five students who were interviewed did not see the incident.
9. Witness 1 reported that the student's classroom of students were lined up to go to the art room.
   
10. Witness 1 heard a slap and then saw the paraprofessional slap the student. Witness 1 described the contact as "really hard" and reported that the paraprofessional used the palm of her hand to slap the student's cheek.
11. Witness 1 reported that after the student was slapped she cried.
12. Witness 1 is "absolutely sure" she saw the paraprofessional slap the student in the face.
13. Witness 2 reported that the student was mad and hit the paraprofessional. Witness 2 reported that she saw the paraprofessional slap the student's face.
14. Witness 2 reported that she heard the slap which sounded like hands clapping and then heard the student saw, "Owe."
15. Witness 3 reported that the student was angry. Witness 3 reported that the paraprofessional slapped the student with an open hand. Witness 3 reported that he could also hear the sound of the slap.
16. Witness 4, a school employee, did not see the incident but heard several students talking about how the paraprofessional had slapped the student.
17. Witness 4 reported that the student told her that the paraprofessional had hit her.
18. Witness 4 reported to her supervisor that the student told told her the paraprofessional had slapped her in the face.
19. The paraprofessional was interviewed by the school's officials after the incident.
20. The paraprofessional reported that the student had slapped her. The paraprofessional did not report to school officials that she had slapped the student.
21. The paraprofessional was interviewed by the police and the MDE investigator on December 4, 2007.
22. The paraprofessional reported that on the day of the incident the student was presenting some challenging behaviors which was not unusual for the student.
23. The paraprofessional reported that the student had slapped her face twice. The paraprofessional responded by informing the student that her behavior was inappropriate.
24. The paraprofessional did not immediately report to the police and MDE investigator that she had slapped the student.
25. When the paraprofessional was informed that several witnesses saw her slap the student, she reported that she had touched the student's cheek but not hard enough to be regarded as a slap.
    
26. The paraprofessional later admitted that she had probably slapped the student reflexively but not intentionally.
27. The paraprofessional reported that she was not angry or irritated with the student.
28. The paraprofessional reported that she had not admitted this to school officials because she was overwhelmed by feelings of embarrassment, shock, and guilt.
29. The paraprofessional reported that she knew that hitting students was prohibited.

Determination

1. It is the determination of the Minnesota Department of Education that there was no maltreatment on the part of the facility ......................................pursuant to Minn. stat. 626.556
2. It is the determination of the Minnesota Department of Education there is a preponderance of evidence to show that maltreatment occurred on the part of the paraprofessional for the following reasons.

a. Corporal punishment means conduct involving hitting or spanking a person with or without an object or unreasonable physical force that causes bodily harm or substantial emotional harm and is not allowed to reform or penalize student conduct.
b. There are eyewitnesses accounts from the student and three witnesses that the paraprofessional slapped the student.
c. The paraprofessional did not admit to school officials that she slapped the student. However, when she was interviewed by the police and the MDE investigator she reported that she had slapped the student reflexively.
d. Therefore, there is a preponderance of evidence that physical abuse in the form of corporal punishment occurred on the part of the paraprofessional as defined in Minn. Stat. 626.556 Subd. 2(g)


So, I have lots of questions for the county attorney. You know, the one who told me, "maybe it's about time someone tells her (Angela) it's not ok to act this way." and that "The paraprofessional acted in self defense." which is one of the reasons they're not going to pursue prosecution.

Well, in this report the para never says anything about "self defense", she says she acted "reflexively". There is a BIG DIFFERENCE between the two!!!! In a situation of self defense a para could have a) blocked the blow from Angela b) pushed her away or c) moved away from her. This person didn't do any of those things. Instead she reacted, striking back.

There are those reading who feel that I don't put enough blame on Angela, including the county attorney. I have countless assessments and reports from various professionals (psychologists, behavioral specialists, and medical staff) that all state that not only is Angela not capable of impulse control, but that she also does not think in terms of "If I do X, I'm going to get into trouble." She is also not able to connect a consequence to what she's done after about 30 seconds. In other words, doing things like suspending her for misbehavior would serve no purpose, because she is not able to connect that this punishment is for something that happened yesterday or many days prior. She's not even able to connect these things on more immediate basis, such as time outs. Clearly, she is a difficult child to deal with at times. I know...I live with her...I spend hours out of every day trying to think ahead at the next transition or request I'm going to be making of her, and how I'm going to handle the fall-out...all BEFORE it actually happens.

People in a caregiver position have no business being there if they're not able to display some self control. It is not easy working with a student who presents the behavioral challenges that Angela does. Every staff person who works with her knows how difficult she is, including this particular substitute who had worked with her many times over the past 3 years that Angela has been in this school. Every staff person has the right to say, "I'm sorry, but working with this student is beyond my skills and training." and SHOULD say so, to avoid this very type of situation.

As things stand now, there is nothing preventing this person from working in another district. Never mind that she lied to investigators. Never mind that she admitted to acting reflexively. Never mind that she works with vulnerable students who cannot defend themselves. This WILL happen AGAIN...it's only a matter of time. Next time it might be YOUR child. What will you do about it? Will you go to every news station in the city as I have? Not a single one has returned my calls. Will you file a civil suit? Good luck...in Minnesota you won't be able to. You won't even be able to get copy of the police report about the incident. No...because you might use the information in a malicious manner. Apparently I'm not allowed to defend my child, so yours may be the one to suffer next.

From the Archives

I've been tagged by Renee over at My Special K's to do the Archive Meme. Thanks Renee!

Here are the rules -
Go back through your archives and post the links to your five favorite blog posts that you’ve written. But there is a catch:

Link 1 must be about family.
Link 2 must be about friends.
Link 3 must be about yourself.
Link 4 must be about something you love.
Link 5 can be anything you choose.

Link 1) Many Hats: On raising a child with Schizophrenia. This was very difficult for me to write, but more difficult to live through. I know there are others struggling with this...the secret life of a parent who's child suffers from Mental Illness.

Link 2) Overlapping Guests Ok, so this is a funny post about Angela's friends. I have a few friends, but only rarely do I actually SEE them. I'm not exactly sure why except that I know it has to do with everyone having busy schedules, myself included! LOL

Link 3) Who...me??? Honest, someone said this to me!

Link 4) The Gift of Riding Alone As it was pubished in Biker Alley Magazine in August '07

Link 5) It Sneaks Up On You My first ever blog post, written June 30, 2005. If you haven't taught kids to drive yet, you might want to read this one! LOL

Getting excited!

I know it's supposed to be "wordless Wednesday" but those who know me know that's a whole 24 hours of keeping my mouth shut. Yeah right!

Anyway, I just got a call from the Give Kids The World Village in Orlando...confirming our upcoming stay. It's getting so close we can taste it! I heard that yesterday was 85 and sunny there, a little cooler today, in the 60's. SO??? That's better than SNOW!!!!

Wordless Wednesday

TWO new children have a home!

You may remember my posts about the Cornish Family, and their adoption of Sasha that fell through at the end of January. While we're sad for Sasha, and hope that things will change for her and she'll find her forever family, we're thrilled to announce the Cornish's pending adoptions of TWO beautiful children from the Ukraine! Please pray for Emma (in yellow) and Daniel (in blue) You can read more about their first meeting with these two beautiful kids on their blog.

The First of a Series

Today was the first of a series of very special days. Watch the video, you'll see why! Check back next week for "Day 2"!

Make photo slide shows at www.OneTrueMedia.com

Blast from the Past

Tomorrow I'll have exciting things to write about, which is really all I can think about right now, so instead of writing and spoiling it, here's a blast from the past:

Angela 5 days old


Almost 5 months old


5 years old

Wordless Wednesday

Roll Call?

I see my counter go up every day, and I'm really curious to know who reads here! (or is the counter just going up from me reading my own blog? LOL) Even if you don't normally comment, or you're just dropping in, I'd love if you would take a moment to participate in my own personal roll call. If you just stumbled in here, how did you find me? If you've been here for awhile, how long have you been here? WHY are you here? Looking forward to hearing from you!

Dressing for the weather, or the world?

It's a rare morning when I'm up before Angela. She usually beats the sun and the roosters. Today was one of those rare mornings, but I didn't beat her by much...minutes at most. All was quiet in the house as I lay in bed enveloped in my cocoon of blankets, and the giant fluff ball next to me that was Zurri.

And then I heard it. The smallest voice, rehearsing her day, naming all her friends. I got up and stood quietly, motionless, outside her bedroom door. I couldn't see her, so I knew her head was under the blankets. In her quiet croaky morning voice she chanted, "All my friends. Yep, all my friends be there. A party for me. Drew, Monica, Daddy, Desi, Grandma Spring, Mom, Dean, Noah, Tyler, Bryon, Mrs. Hubbard. Yep...all there...for me...my party...It's a fun time my party. Should I wear a dress? No...Should I wear a fancy shoes? No...Stripes. Yep, that's right. I'll wear my stripes. My Florida stripes....my party...all my special people will come."

She got herself up and dressed, then came to find me for some breakfast. "Mom? What I wearing to my party?"

As I envisioned the mountain of striped shirts in her dresser, I answered "I don't know Angela. I hadn't really thought about it. But, since stripes are your favorite I bet that would be a good choice, and certainly one we have many options for."

Time to get dressed for the bus. We're having frigid temperatures here in MN, so every possible piece of outdoor clothing is required. She struggled with her snow pants a bit, the ones that are threatening to fall apart before the end of winter when you can't find them in the stores anymore. She pulled on her boots, then her jacket. She's still not able to zip, so I bent down to help with that. I pulled up the zipper, then tied her scarf around her face. She pulled on her mittens as I slipped her "Cars" backpack over her shoulders. (she won't have anything to do with girly backpacks, no she wanted Spiderman or Cars!)

I opened the door to send the pink puffball out into the biting wind, but at the last second she turned, "You forgot my kiss mom!"and turned to face me with an exaggerated pucker, complete with crusted toothpaste on the corners of her mouth.

As I watched her waddle down our long, steep and icy driveway it occurred to me I wasn't just dressing her for the weather. I was dressing her to protect her against the elements of the world. I did it with all my kids, just as all parents do. But with Angela, there are some things in the world that she's a bit more vulnerable to. So I prepare her for them as best I can, giving her the protective layers to shield her from the bitter cold that the world can sometimes dish out to kids like her. Those who are different from everyone else, who struggle to learn what might come easy to most. I have spent 11 1/2 years praying over her, that the Lord will show her the right way, to the parts of the world that will welcome her, and love her for who she is.

She stands there in the wind, independent of me, well out of my protective reach, singing the songs of girlhood, ready to jump into the world with both feet. Her spirit screams "I'm READY! I can do it!"

Why do they call them "sleep overs"?

Do kids actually SLEEP at a "sleep over"? Angela certainly didn't. (see my post below about what happens when the kid doesn't sleep.) I wish I could post pictures of Angela and her friend Monica doing their girly stuff last night. But I don't like to post pictures of other people's kids without their parent's permission.

Anyway, they seemed to have a good time. Then Monica went swimming with us this morning and Angela's coach invited her back "Any time you want! We'll work on your strokes!"

It's been MONTHS since Angela has had a sleep over here. I always seem toforget that when there is a friend here, she's OCCUPIED and I don't have to keep her busy. LOL

Mom freaks, Confuses kid and dog

Lessons learned tonight...

So this afternoon we took Angela and Dudley to another match with the Jr. Agility League. You may remember that last weekend was the first time she'd ever done a full course, AND she did a great job! To be honest, I was pretty shocked with how well she did. She had NO problem following the courses, working the dog, etc.

And then comes tonight. I'm going to say right now, it was all my fault. Last night she had a friend sleep over, and who knows how late they actually stayed up, and then Angela woke up at 6:00 this morning, waking her friend up soon after. Then it was swimming at 11:00, home by 12:30 for lunch. I tried to get her to take a nap with me, but she would have nothing of it. Finally I put her in front of a movie, 80% sure she would fall asleep. I even told Dean "If she falls asleep, we're not going." About 20 minutes before we needed to leave I quietly opened her door. There she sat, frozen in front of a tv screen (she doesn't usually have a TV in her room, but we put one in there to watch movies with her friend so we didn't have to give up the big screen. LOL) She was unmoving, and unblinking, and never noticed me open the door. I should have just canceled the plans right there.

As we were getting shoes and stuff on to leave, her mouth got the better of her, but that's not completely unheard of for her.

So we get to agility, and it's a guest judge who set the course. It was a VERY difficult course, and he added 2 or 3 obstacles to it. There were a couple of traps, and a fully circle within a circle. A very difficult course for young kids. But when Angela and I walked the course, she was able to follow it without any problem. Then we brought Dudley out to make sure he would do the weaves and boardwalk for her. Unfortunately I forgot to have her work the tire. Dudley hasn't done the tire in MONTHS.

Of course we were starting with the 20" jumpers. There were two others, but Angela had to go second. She got out there and it just went downhill from there.

Lesson learned: Even though the mom is staying in her chair, and is stuffing her coat in her mouth in an attempt to NOT coach the child, THE DOG FEEDS OFF THE MOTHER!!! Dudley kept looking back to me to see why I was silently freaking out. Angela was flustered and having trouble concentrating, (which causes the dog to be just as confused) and I think it took her 5 minutes to get him through the first obstacle...the tire. The judge was even coaching her. Finally I said, "That's ok..lets just have her do the beginner course."

We watched all the other kids go, then started the beginner course. This was a MUCH easier course, but still, at the admission of the judge, it had a couple spots that were "harder than what you would expect for this level, and a couple extra obstacles, but that's ok..you guys will do fine." During the walk-through, (where they go without the dog to make sure they know the course) Angela was able to run the full course 3 times without any help. She was fine!

Angela's name is called, and out she goes. She wasn't even able to get Dudley facing the right direction, much less get him to go over any obstacles! Finally she started out and I think she though this was like the gambler's course, where you choose your own path. She just started running wherever.

Finally she put her hands over her face and said, "I'm so Fwustwated!!!" I stopped her and said, "Ok Angela. You're done. Bring your dog out."

She was SO SAD! She came out with her lip sticking out and I felt like a total heel for calling her out. The woman who runs it told me to go ahead and run the course with her so she could have a success. And so I did...and they did just fine with me there, kind of lagging behind. When they crossed the finish line Angela jumped up and down "Yes! Yes! I did it! Yes!"

While inside, my heart was a wreck, on a whole lot of different levels. I felt like I'd set her up for failure. Well, really I did. I didn't follow my gut that said keep her home. I put her in front of a group of people and set her up to fail. And then...and then I called her out and embarrassed her. Everyone was incredibly patient, and at one point the judge said, "I don't usually coach the handlers, but I think we can make an exception here huh?" I'm grateful for him for saying that, AND for making the exception, while at the same time, that exception stung like a hot ember. It wasn't the judge doing it that stung, it was the fact that she needed the exception in the first place, and that I'd put her in that position.

When we went to sit back down I could feel my eyes burning and quickly excused myself to the bathroom....quick...before the tears fell.

We came home, and Angela ate dinner and has been asleep since about 6:30, and I expect she'll sleep through the night.

We have some things to work on this week. Angela sending Dudley through the tire, how to set him up in front of the first obstacle, and teaching mom to just relax!

Count Down!

Well, I'm not posting the exact date, but I can tell you we're counting down the days until we leave for Angela's Make A Wish trip! This has really gotten to be an "over the top" kind of thing. And here I thought they "just" sent you on a trip!

Next weekend there will be a pre-wish party for 12 at Angela's favorite restaurant, Applebees. She doesn't know it yet, but we'll be picked up at the house by a fire truck, and I've been told the local fire department has a special gift for her. They will then drive us IN THE FIRE TRUCK to Applebees, where other family and friends will be waiting.

The following week Angela and I are having a girls morning at Spalon Montage
where our fingers, toes, and Angela's hair will be beautified. ( found out about this just a few hours after I'd just had my hair done! LOL) Our wish coordinator remembered reading about Angela wanting a green mohawk, but sadly, her mother won't allow it. LOL So Angela will be getting some foiled colors and a cut. I'm sure she'll be in 7th heaven!

Back to crossing off the days on the calendar!

What???

I am so tired of this word. "What?" We all hear it from our kids at one time or another (multiple times per day) but I hear it from Angela about every 10 minutes because...well..she really can't hear me!

When Angela was 11 months old she was diagnosed with the type of hearing loss that is most common among kids with DS, a moderate, sloping, high frequency, bilateral sensoryneural hearing loss. She was fitted with hearing aids which she barely tollerated, and which we fought over until she was 3. While wearing them she seemed scared to death of any sound she herself made, and would stand in the middle of a room petrified by the world around her. So we ditched 'em, and our happy, chattering Angela came back. That didn't seem right to me, and I knew that Angela's aids were not programmed appropriately for her loss and were providing too much amplification, but the audiologist assured me they were just right. Gee, I worked with hearing aids every day, and never had a seen a kid react like this.

Fast forward to kindergarten when we decided to try the aids again. This time they were tolerated (most of the time anyway) and worked great. In 1st grade we added an FM system (this is where the teacher wears microphone, and her voice is brought directly to the student's ear, eliminating all the background noise.)

Then came that dreaded 2nd grade year, which Angela spent most of in the hospital...without aids. When it was time to start wearing them she refused. It took months for her to keep them on, and she never did at home. Much to the complaint of our insurance company, Angela managed to destroy two pairs of very expensive aids ( about $15,000 worth).

Now she's in 5th grade, and has been consistantly wearing her school aids for 2 years, and tolerating them quite nicely. She reminds teachers to turn the FM system on/off (when they forget to turn it off she gets to hear things she doesn't need to, like toilets flushing, or adult teacher-teacher conversations!). So, we're looking at new aids for home because I'm getting really tired of hearing "What???" all the time, and her speech is getting more difficult to understand. This became particularly evident over Christmas vacation. After 2 1/2 weeks of no school (and no aids) we were having a horrible time understanding her. Then the school audiologist did a re-check, and Angela has lost a tiny bit more hearing. Her assessment included a little note about "hearing aids are strongly recommended for home use."

Ok, ok, I'll call the insurance company again. Gee, so far this year they've paid for two pairs of glasses within 3 weeks, I'm sure they'll love paying for aids again. They have a rule about 1 pair every 5 years, and it's only been 3 since Angela got her last pair, so I doubt they will agree to pay, but there's always that slim chance.

We think that Angela will be more accepting of an open hearing aid. These have only been on the market for a couple of years but were designed for just the type of hearing loss Angela has. The aid itself is much smaller than any she's had before, and the isn't a chunky ear mold. Just a tiny piece that sits inside the ear canal. If the insurance company says yes, I'll only have to hear "what?" about half as often as I do now.

Saying Goodbye to Sasha

You remember me talking about Sasha, and the other children in Easter Europe, right? (They're specifically in the Ukraine)

This month the Cornish family traveled to the Ukraine to unite with the child of their dreams. With Sasha, a little girl with Down Syndrome who has no family and lives out her days in an institution who was made available for adoption last year.

You can read the full story here, but you'll be saddened to hear the news. With all the paperwork in order, and everything ready to go, the only thing left to do was actually MEET this angel child. They arrived at the institution and their social worker and director of the institution argued some. The director didn't feel Sasha should be placed for adoption to a country where she would find nothing but discrimination. (mind you, she's in an institution BECAUSE she has Down Syndrome!) Eventually they were allowed to meet Sasha, and the director said he would think about it overnight.

After spending thousands of dollars in travel, getting a home study done, and all the other gazillions of other things that have to be completed for an international adoption, the director told them he didn't think they could make a connection with Sasha, and no...they cannot adopt her. That her life in that institution (which she is fortunate is one of the better ones) with little 1:1 contact with people, no love, no parents, is better than life with a forever family. With a brother and a sister, school, doctors, L-O-V-E.

The Cornish family will be coming home with empty arms. But their faith is strong. They know they were brought to the Ukraine for a reason, it's just not known to them exactly what that is. Please pray for Sasha, that she will live out her days healthy and her physical needs will be met. Please also say a prayer for the Cornish family. Their hearts are broken, and their arms are empty. You can read the full story here on their blog.

Here is Sasha with her potential father, before they were told they could not bring her home. She certainly doesn't appear afraid, or stressed. She sure looks happy to be getting the attention. Goodbye Sasha.

Independence..At 4:30 a.m?

Where are most of you at 4:30 a.m? Are you in bed sleeping? If you're like me, not only are you sleeping but it's probably the best sleep you've gotten all night. For some reason that time of the night (morning) is when I sleep best. Maybe it's because Dean is up and I can move into his warm spot. Maybe it's the big fluffy dog who's joined me. Who knows?

A couple days ago my great sleep was interrupted by Angela in my door, "I'm take a shower now." she said.

WHAT? There is something wrong with this. Not only do I normally have to FIGHT and TRICK her into taking showers, but we certainly don't do it at 4:30 in the morning. Besides, the shower was occupied by Dean. So after a few minutes discussion I convinced her to crawl back into bed....(Please Angela? I'll even let you lay in my bed.")

Fast forward to this morning. Dean and I were up. Once in awhile I'll get up with him because nature calls or something, and he likes when I visit with him while he gets ready for work. (as I gaze outside into the dark and wonder why in the world I'm awake.) While he was taking his shower I came into the office to check some email. Again, I hear "I'm take a shower."

"Oh Angela. Honey, it's still dark outside. C'mon, lets go back to bed where I belong." I had just come back into the office to turn off the computer when Dean said, "The shower is running. Did you really let her get in there?"

YUP...there she was. Man she's fast! Already had shampoo in her hair! And there were clean clothes (matching even!) laying on the bathroom counter. I wasn't allowed to help though, nor help her brush her hair...or dry it. No, I was banished from the bathroom. I was given the palm of her hand and a "NO Mom. I'll do it. Go."

Now it's 5:30 and she's already made her breakfast. :"No Angela, tuna isn't so great this early. How about toast?") Oh it's gonna be a long day. For me, for her, and sadly...for her teachers!

Angela & Dudley: Agility stars!

Oh, I'm beaming tonight. You'll see more details in the video, but man...this is the first time in well over 6 months that either Dudley or Angela have done any agility. It's the first time EVER that Angela has had to follow a course!

There were 7 or 8 other jr's and their dogs (all but one were older/bigger than her) and all have been doing this for awhile. After each one ran their course, no matter how many problems they had Angela would go give them a pat on the back, and say, "Great job John!" or "Great job Sara!" then she'd pet the dog too, "Great job Sadie!". This is the absolute fastest she can run. The important thing, of course, was that SHE DID IT!!! When everything was all said and done, all the parents and kids vote for the person with the best sportsmanship. Everyone voted for Angela! Here's a video of what she did tonight.

Photo and video editing at www.OneTrueMedia.com

As if to proove a point

So you know over the weekend I was in that horrible funk. Man, I hate feeling like that! I was on the verge of tears all weekend. There must have been some hormones involved.

Anyway, one of the things I was freaking out about is some assesment results we got back. Angela is developmentally 5-6 years old right now, and as an adult will probably be somewhere around 10-12 years old. After the meeting I was stuck in the mode of thinking about what level of independence Angela will have as an adult. Now, I've raised 4 kids already, so I know what 10-12 year olds are like, but apparently I was having amnesia or something. Many of you provided me with great examples of what your typical kids are doing at that age now, reminding me that that isn't quite so bad.

So yesterday morning I was woken by a "bang" in the kitchen. As I struggled to a conscious state I could hear Angela jabbering away. Many years ago someone taught her to narrate what she's doing. This has been a wonderful tool for me, as she is SO not able to be sneaky when she's narrating. LOL Anyway, here is what I heard...

"Here it is. Peanut butter" (bang of cabinet door) "and da jelly too. Don't forget the jelly. Nope, can't forget that." (bang of fridge door)

"two pieces of bread. One....two. Close it up. No Zurri, no bread for you. Nope, only dog food. No bread for dogs. See Zurri, I put it up high. HA ha!"

(rattling of the silverware drawer) "Heres a knife. See Zurri? Not a blank handle. Nope, black handles are dangruss. Silver handles are safe."

(very quiet here, then lip smacking sounds.) "Oops...forgot...no licking knives. That's not safe. Nope, not safe at all."

"And yogurt. Yep, yogurt in my lunch. Oh, and a spoon. Here's plastic ones. Not metal ones in the lunch, only plastic. See Zurri? Plastic. Can you say Plastic?"

"MOoooooom!!! I'm packing my lunch mom! Mooooooomm! I did it! My lunch is all packed up!"

We have a long ways to go before Angela is moving out on her own. I think we're gonna be ok.

Addiction vs. Addiction

So Dean is trying to quit smoking using the patch method. I have to say, I'm very proud of him. He's been smoking a couple packs every day for 33 years, so I know this is a difficult thing for him to do.

On the weekends, he usually sleeps in until 5:30 a.m. (no really, thats sleeping in for him! Isn't that sad?) goes to the basement for a smoke, and pretty much hangs out down there most of the day. Occasionally he'll play some online games, but mostly he's just downstairs. But now he's not smoking, and he really doesn't WANT to be in the man cave that is associated with smoking.

My routine is to wake up around 8:30, make breakfast for Angela, feed the dogs, then sit down for my morning dose of email and internet. However, this morning when I got up...who should I find sitting at the computer but Dean? This isn't completely unheard of though. The problem was an hour later he was still there....and my fingertips were itching to touch the keyboard. I knew sooner or later he was going to have to pee, or get more coffee or something. Eventually he needed to search for something and needed my help and I was able to scoot into the chair.

I think we're going to have to get a second computer now.

Tough, Emontional Days

First of all, I want to thank everyone for their comments and support regarding the situation with the assault at school. I know that some things are going to come back at us (actually, they already have). The County Attorney's comment about "maybe it's time someone teaches her this isn't ok." is not the only one we've heard.

I wish lots of things for Angela. One of the things I wish is that she "only" had Down Syndrome. If she only had Down Syndrome life would be a bit easier. But that is not the card she (and we) were dealt. Instead she has a brain injury on top of a cognitive disability, which results in some pretty aggressive behavior, with zero impulse control. These things don't happen often, but they do happen. If it weren't for the additional problems we would not be where we are today. We would not have the day to day struggles that we have with her, she would have friends.

If you're reading this, and your child goes to school with my child, I want you to think about something. Please know I'm not asking you to pity Angela. I'm asking you to think about what her life is like from HER eyes. Do you know that Angela has not been invited to a single birthday party in TWO YEARS? Do you know she has NEVER ONCE been invited to an overnight by anyone other than one other child who is also disabled? Do you know that every Monday morning she goes to school and hears the other girls talking about the fun times they've had with sleep-overs during the weekend, and wonders why she's never been invited? Do you know she's has never once been invited to a birthday party by one of her regular ed. peers? Imagine what it feels like to be her. If I were here, I'd be angry and screaming for attention too. Instead she comes home and creates an entire school's worth of invisible imaginary friends, who just happen to be named after all the people in her class. Why? BECAUSE SHE'S LONELY! Imagine being so lonely at 11 years old that you have to create imaginary friends.

Don't get me wrong, I understand that she's the "forgotten one" when it comes to her mainstream peers. She's not in the classroom enough for her to be on the top of the invite list. Every week I hear from parents who tell me "My daughter comes home and talks about Angela all the time. She just ADORES her." while in the back of my mind I'm screaming "SO INVITE HER TO A DAMN BIRTHDAY PARTY!!!! BE A REAL FRIEND!!!!"

And at the same time there is another voice in my head that says, "Why would they want to invite her? They don't know what she's like outside of the classroom. All they remember is the time a year ago when Angela pulled their daughter's hair. They don't hear about the hugs Angela gives their sons and daughters every day. They don't know how Angela idolizes their children. They don't know Angela!!!"

So, tonight I'm crying for my daughter. I just want for her what every mother wants for their daughter, and I can't give it to her. I can't make it happen. I can't protect her from the world, and I can't change what she has. This is something I cannot fix. I think it's the worst feeling I've ever had as a mother.

My child is a criminal

Yes, according the Dakota County Attorney's office, my 11 year old child who is cognitively disabled and has an extensive history of impulsive and aggressive behavior, is a criminal.

Because a staff person at school invaded her personal space (against the specialized training she would have received before working with Angela) that means that Angela assaulted the staff person FIRST, and so that staff person who then in turned slapped Angela across the face will NOT be prosecuted because in Minnesota, an adult can act in "self defense" and strike back against the child. The county could, in fact, turn around and prosecute my child instead. (you better believe all kinds of not so great words came out of my mouth when I was told this.) Oh, and the county attorney's comment was "It wasn't very hard because it didn't leave a mark." HOWEVER...it WAS HEARD on the OTHER SIDE OF THE CLASSROOM!!! So please, do me a favor....strike your own face loud enough to be heard on the other side of a class room and tell me how hard it was. Would you consider it "with force"????

So, should my child do this again, she can be slapped or hit back by any staff member in school building, and that person would NOT get into any trouble!!!!! Would it happen? God I hope not. But the fact that it COULD and there would be ZERO RECOURSE scares the crap out of me. Would it scare YOU?

There are lots of "what-if's" here. For example, WHAT IF this had happened in a closed room without an audience? HOW HARD would Angela have been hit? (the county attorney's answer? "Well, there would have been a mark, then we'd have reason to prosecute.")

WHAT IF this was a non-verbal child in a closed-room situation? (The county attorney's answer? "Well, then it wouldn't have been reported, would it?")

This leaves Angela AND EVERY OTHER DISABLED CHILD WITH AGGRESSIVE TENDENCIES at SIGNIFICANT RISK in future situations. That ONE PERSON who gets the stupid idea of "If someone slapped her back once, I bet she wouldn't do it again." would get away with it!!!!!

My other question is, why does the person who did this go by TWO DIFFERENT NAMES????? She is known at school by one name, but a different name at school. (she has a two-part first name and a hypenated last name. School knows her by one part of the first name and one part of the last name.) I realize lots of people do this, but boy...it sure makes one wonder if something has happened before and she has REASON to go by different names!

The Defendant's Name

It has taken me nearly two months to get more information about the assault against Angela that happened at school. Can you believe I STILL don't have a copy of the police report?

Anyway, on November 21st, 2007 Angela was physically assaulted by substitute paraprofessional "L.M.B.S," (full name to be posted later.) (AKA "M.B " (a derivative of her full-name) who later admitted to the act.

I am still waiting to find out weather or not the county attorney intends to prosecute this case. Of course, I still have all kinds of questions. Unfortunately, until I have a copy of the report in my hand, and know the intentions of the Dakota Couny Attorney, there is nothing I can do.

Smater than a 5th grader?

My friend Kathy over at "Adventures in Homakerland" posted this quiz, so I took it. Go see how you do.

You are 100% Smarter than a fifth grader.

You are smarter than a fifth grader. no doubt. There is no need for you to retake school. Keep on doing your brain excersise like sudokus and crossword puzzles, and you'll soon be smarter than a sixth grader! Good work!

are you smarter than a fifth grader?
Quiz Created on GoToQuiz

So what did we get?

Lets see...we drove looked at and drove a Saturn Vue, Jeep Liberty, Toyota Highlander, and Hyundai Sante Fe.

Between space, mileage, crash rating, and price we ended up going with a 2005 Sante Fe under 50K miles. (never ever ever will I buy a brand new vehicle.)

This was a very long day of test driving, since we had Angela along. She was NOT happy to be there! She begged me over and over again to let her stay home alone "and take care of the dogs". Poor kid! The sales guy we ended up buying with was paying particular attention to Angela, and I don't know how many times he ran to get her things, AND cut down every balloon on the show floor to give to her. He was paying too much attention, you know what I mean? So I knew he must know somebody. Turns out his 37 year old sister had DS.

Unfortunately, his comments were loving but very derogatory. I hope my boys never refer to their sister as "rollie pollie but jolly as can be."

So, we're now back to 2 vehicles so I'm not stranded when Dean leaves town a couple nights a week! WHEW!

WHICH ONE????

We have two vehicles. A Ford Windstar van with 210,000 miles on it, and a Chevy Tahoe that has 175,00 (purchased from my dad almost 2 years ago for well under Blue Book. THANKS DAD!) We knew the van was going to die soon, and have been anxiously awaiting tax time to get a something to replace it.

Unfortunately the car god had other plans. When Dean left for work at 5:30 Wednesday morning, in the dark of the early morning he didn't see the HUGE puddle of oil under the van. I kid you not, every drop that was in the engine had to have ended up on the driveway. Dean got a mile down the road when the oil light came on and seconds later the engine seized up. So I dragged Angela out of bed into the frigid -4* air to go pick him up. Dean went back with the Tahoe to clean out the enormous amount of "shtuff" that he had in the van, and to meet the tow truck that would take it to it's final resting place.

So NOW what? Ok...buy a car. Great. There's no way in the world I can get a loan. Dean can but doesn't want to. So we did some calling around, and figured out our financing options (lucky for us, Dean has awesome credit!) Now all that's left is to figure out what to get!

There are only 3 of us living in the house, but there are also 3 big dogs. It's not often I have all 3 dogs with me, but I do need room to have at least one should the need arise. Four wheel drive is a plus (you should see our driveway!) but not an absolute necessity. Mileage is definitely something that needs to be considered as well. I really don't want to drive a wagon again, but the cross-overs are interesting, particularly the Nissan Murano and the Saturn Outlook.

We're also looking at smaller SUV's like the Santa Fe, Vue, and the Pathfinder.

We ran into one Honda Element that Dean really likes. I'm not sold on those yet. I hear they get great mileage, and SUPER if you have dogs and kids, as the floor is rubber so no carpet to get dirty. But I also hear they're not the most comfortable to drive. They're also a manual transmission, which doesn't bother me, but WHERE the shifter is does. It's on the dash instead of at your side. We haven't driven it yet so we'll see how that feels tomorrow.

What I fell in love with was the Jeep Liberty. This is no surprise as myy sister used to have one and I LOVED IT! However, all the used ones I looked up were well out of our price range. Lucky for me, at our last stop we stumbled upon two 2006's with low miles (lease returns) and price tag we both liked. The first one we saw...the one I was drooling on...was black, to which Dean said, "I hate black." I reminded him who would be driving it and washing it. Then as we walked away we spotted the other one which was my favorite color blue. We'll be driving those tomorrow for sure!

Peace Out!

Angela's favorite Christmas gift this year is her "ticar". She has a very interesting style, mixing all the lyrics of every song she knowns into one medley. The hard part is picking out which songs she's singing! LOL Her speech is usually pretty good, but when she's singing I usually have a hard time understanding her. About 1/2 way through the video she starts doing her toe thing, which always cracks me up. She ends the piece with "Word!". I guess we'll need to add 'ticar" lessons to the mix, huh?

Photo and video editing at www.OneTrueMedia.com

Words

For reasons that will be obvious to some, I'm going to re-post something from a couple of months ago. It's been changed a some, but the message is still the same.
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Most who know me also know that if they use the "R word" around me, or any derivative of it, I'll probably say something about it. I may, or may not, be nice about it, depending upon my mood at that particular moment. Some people I know, even family members, think it's silly for me to be irritated about it. "It's just a word...figure of speech, I don't mean anything by it." I even had one family member call her own son that, while Angela and I stood right there. Still...they think I'm overreacting.

No..I'm not. When you use that word, you're using my child as an insult. You're saying to be like her is a bad thing. That whomever you're calling a "r-d" surely would never want to be like Angela, or any other person who carries a MEDICAL DIAGNOSIS of mental retardation. That, my friends, is some incredibly insensitive thinking.

You wouldn't call people a "n-word", or a "fa**ot", or any other socially unacceptable slang term because you know they're wrong. They are words that can get you fired from a job, or sued for racial verbal harassment. Yet the "r-word" lives on. It's sickening.

Imagine my child walking through school. She will never hear one of her classmates call their friend of color a "nigger, and in her extremely racially diverse school she'll never hear someone call a friend from the middle east a "towel head", but it is EXTREMELY common for her to hear someone walk by and refer to each other as "retard".

Why is this ok? Why is it ok for you to model it for your children and why is ok for your kids to do it at school? Why is it ok to have what my daughter is be the butt of a joke every day of her life.

You may say, "Oh get over it. Grow a thicker skin." But if you're one of the people who use that word, what will you do the first time you hold your own new baby with Down Syndrome? Or your new grandchild, niece or nephew? Or you meet your boyfriends brother with Down Syndrome. Will you still use it anyway, regardless of how hurtful it is? Will you tell your own child "Grow a thicker skin child! You're going to be hearing this your whole life!!!!"

My child doesn't need to grow a thicker skin. She's been through more in her short 11 years than most adults will go through in a lifetime. What she needs is for people to be as respectful of her as they are of those of color or different religions. After all, the only difference between her and you is one tiny chromosome.