Blogging about life and raising our five kids with Down syndrome.

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

Thursday, November 29, 2007

Bringing Sasha Home


Meet Sasha! Isn't she a lovely little girl? Sasha is an orphan in Eastern Europe. She recently turned 5 years old, only for her it wasn't a celebration. Instead it meant a move to a place far worse than where she's spent her life thus far.

In her country, when children who have Down Syndrome turn 5 and have not yet been adopted, they're moved to a mental institution where they live out their days starving, cold, and unloved. They are left to waste away until they are killed by some horrible illness, malnutrition or severe deyhdration kills them. In most cases, these children are no longer available for adoption and are, for all intense purposes, dead to the world.

But for Sasha, there is hope! She doesn't know, but she has a family here in the US trying desperately to get her out of this certain death sentences. The Cornish Family. Because her process was started before she was moved, Sasha will still be able to be adopted. The Cornish family is well into the process, and is hoping to be told they'll be traveling to get Sasha in February. Until then, Sasha is living the life of all the other orphans in the institution. A miserable, hopeless existance. There are many of us praying daily that her body, mind, and soul can hold on to a hope she doesn't know exists. That when she gets home, her new family will be able to love her back to health and healing. The Cornish family can use our help, even if it's only a couple of dollars. Please, help bring this angel home to warmth, love, and happiness that she would otherwise die never having felt any of it.

There are a lot of children just like her, waiting...getting ready to "celebrate" their birthday. Visit Reece's rainbow. You'll find lots of ways you can donate, and the children who are in the most desperate of situations are noted. Those are children who's birthday's are approaching and will be given their death sentences of life within the institutions.

Sadly, it's true

It's 8:00 a.m. Angela's principal called me 1/2 hr an ago to make sure I knew the State Dept. and Police detective would be at school today. (Yes, I already knew.)

He went on to say, "I hate to have to say this, but in talking to other staff, and the other students who were standing right there when this happened, there is no doubt in my mind an innappropriate physical exchanged happened by this staff person towards Angela. I want you make sure you understand this person will never work in our district again, and Angela will never be exposed to her on any of our district property."

I didn't know what to say. What do you say to that?

I asked him about her working with other districts, and how that process works. He said, " I can only speak for our district. But the police and the state will be here, and I would be sure to ask them these same questions."

So I know.

I know the district cares for my child enough to believe her even when it's something horrible that she's told them.

I know that my child will be safe from this person, at least in this district.

I know that the district will never again have anyone with Angela (or any other student) who hasn't been through the appropriate training.

I know that Angela's regular staff, those who work with her every day, are mortified that this happened to her, and in their building.

I know I'm not done. If I have to press charges individually I'll be doing so. I haven't yet decided about going to the media. I might wait until there is a police report and I have a name. I don't want the media after Angela's school, they did everything they were supposed to do and then some. I want the media after this person, and I want her name in the news so when she tries to get a job in another district people will remember the name.

I also know where I'd like this person to go.

Sing...Sing A Song!

I have to be completely honest here. When Angela was a baby, it never would have occurred to me that one day she might be taking voice lessons.

As you know, she was accepted into the Theater group that she auditioned for last week. She's quite excited! We decided to ad voice lessons as well. It took us a bit to find a teacher willing to work with "a kid like her", but I think the teacher we found is gonna be great!!!

Our lesson was scheduled for 2:00, but the teacher called me this morning to ask what types of music Angela likes best, if she has a favorite song, etc. I told her anything from "Suessical" is at the top of her list right now, and there are a couple of songs that only have a few words and relatively simple melodies. I didn't tell her this, because I don't want to influence her expectations, but if Angela learns to sing "The Itsy Bitsy Spider" or some other preschool-ish song well, I'd be thrilled to death!

She said one of the things we'd be doing this first lesson is finding Angela's range. I had to laugh, I said, "Angela's range is MONOTONE." She replied with, "Oh, I have a children's chior and one my students is deaf! Now THAT is monotone singing, but you know what? She's singing and with all her friends, ands he tries her best, and that's what's important to HER!"

I'm thinking I'm liking this woman.

So we go for the lesson. She does some scale stuff with Angela, and points out that Angela IS able to match the pitch, but in an octave lower than what most kids sing. She has a very deep voice. The teacher dropped everything down one octave and Angela was able to match the pitch very well. And my, oh my....I wish I'd had my camera with me! She stood there like a high school student in a voice lesson, feeling very important and grown up! (Though she did occasionally burst into Seussical songs. LOL )

When the lesson was done Angela excused herself to the bathroom and the teacher and I were talking about some things. She said she doesn't know much about DS, but she was going to do some research about working with kids who have DS. That she'd start out working in Angela's current range, then later teach her how to move up and down in pitch. I mentioned that it's my understanding that the vocal folds have to be of good tone to make higher pitches, and since Angela's entire body has low tone it would make sense that her vocal folds do as well. (Angela is not able to scream like typical little girls do, though she can sometimes make this "sea gull" type noise when she's very excited. However in order to do so, she tightens up her entire neck and face.)

Anyway, Angela really enjoyed the lesson and is looking forward to going back next week. For this month they'll be working on Christmas songs, then after the holidays will start working on songs from Seussical.

It's very cool to watch your kid grow up right before your eyes!

Friday, November 23, 2007

New Family Members

When you're looking for to add a 4 legged family member, particularly of the canine variety, most people think they can walk into a litter of puppies and pick the one that stands out to them. If this is you, toss this idea right out of your head.

While this can work, more often than not you end up with a dog who is not what you were envisioning as your perfect companion. I have one family in mind who's dog, although he's very nice, and he's friendly, is NOT the cuddly "ever present buddy" that they long for. Instead he prefers to keep to himself, getting pet when he feels he needs it, then going back to doing his own thing. For some people he would be the perfect dog, but for this family he leaves them hungry for more attention from him. Now, it could be he's like this because he's old and wants to be left alone, but I think he's always been this way to some extent. They occasionally babysit a dog or 2 of mine, and have been known to say, "So THIS is what a dog is supposed to be like?"

So how do you pick a dog for your family? First of all, you find a breeder who KNOWS dogs. Don't be fooled though. Just because someone has a lot of dogs does NOT mean they have any clue about understanding dog dispositions and what THEY need in a family!

Take our current litter for examply. For the past 6 weeks we have watched this litter of puppies. We were there for the very first breath (in fact, assisted with each of them.) We've watched every step of their development. I've also come to know our puppy families, some better than others, and what they desire in their new family member. This goes beyond "how many kids do you have and will the dog be home alone." type of questions from many breeders.

And so we watch. And we listen to our hearts with each puppy.

But just for fun, earlier this week I had a canine behaviorist come in. An outside party who has never met any of my puppies, doing assessments in a room the puppies have never seen before. Man, this is fascinating to watch. What was really interesting is watching how each puppy acted AWAY FROM THE PACK and with someone brand new, who had toys they'd never seen before, on a slippery floor and a rug their feet have never touched. (just like human babies, dogs need to experience new textures, sights and sounds.) While this is going on, I'm taking notes about how the puppies react to the various tests.

My next task is to take that information and mesh it with what I already know about each puppy, and all information I have from each family, and match them to the best of my ability. Now you may think this is all a bit overboard, but there's a reason for all of it, the most important one being happiness. I want my puppy families to be happy with the puppy they bring home, and I want my puppies to be happy in the home they go to. So far, we've done pretty well. Two and three years later I have families call me who say, "Our dog is EXACTLY as you described him on your website at 6 weeks old!" But the most rewarding part of all is the pictures we get back as the puppies get older. Smiling kids, smiling parents, smiling dogs.

A couple months ago, one of our dogs, Addie, came back to us at 2 years old. Her family decided she just wasn't getting enough attention from them. I worried about where I was going to send her. She'd just lost the family and kids she was attached to. Now what? I posted her on my website, then remembered that one of my other puppy families had contacted me and gave the impression they were shopping for another dog. (though they didn't come right out and say it.) They have a one year old male named "Sparky" who is a fully sibling to Addie, but a full year younger. I emailed the mom, asking if they would by chance be interested in Addie. She discussed it with her husband, and that weekend Addie went for a trial visit. That was three months ago and I haven't seen her since! They absolutely fell in love with her, and Sparky, who'd become kind of lonely, now had a playmate who he adores. Addie, who'd gotten overweight due to inactivity is now in beautiful shape. A couple weeks ago the family called me and said, "We can't imagine life without these two dogs! Two doodles are definitely better than one, and we couldn't love our two doodles more!"

That is why I love doing what I do!
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Wednesday, November 21, 2007

A Scary Dose of Reality

The wake up call is for me. I'm scared and I'm shaking, and I feel like somehow I've failed my child. But I wasn't there! How can I protect my child when I can't be there every moment of every day?

Before I start, I want to explain that Angela is not capable of lying. She clearly has a vivid imagination, but she's not able to lie to cover up something, or to make someone else be the bad guy if SHE did something wrong. Also, whenever there is a substitute para (classroom aid) in the special ed. department, THAT person goes with Angela while the regular every day staff go with the other students. For some reason Angela does better with new staff, probably because she doesn't yet know how to push their buttons until she's had a chance to study them for a bit. For some kids, having a sub. para is a nightmare, but for Angela, these are usually her best days. (leave it to my kid to break the rules on how things should work!)

Anyway, earlier this afternoon I got a phone call from school. Angela's mainstream class was lining up to transition to another class. Angela was having some "issues", and threw her auditory trainer (a mic system for her hearing aids). She had a substitute para who is new to her. The para went and picked up the trainer, and told Angela "You need to carry this nicely or I'll carry it."

Mistake 1) Clearly the person hasn't been trained as to how to deal with Angela's outbursts. ZERO attention for them is the rule of thumb, or things will continue to escalate.

When the para leaned over the hand Angela she was IN Angela's face, kind of growling at her (according to the statements of the regular ed kids who were standing right there), Angela, not liking the woman in her face, slapped the woman's face.

Mistake 2) When Angela is having "issues" you MUST stay out of reach if at all possible. Again...training. Not only did this woman become confrotational, but she got IN Angela's face. The vision I have isn't a good one, and I hope that I'm envisioning it incorrectly.

The classroom teacher had her back to the situation and was talking to another student when suddenly Angela started crying like she was hurt.

Warning 1) Angela rarely cries in fear or pain. When Angela cries, you know something REAL happened. Her teacher has been known to say, "I know she was really hurt because she had real tears!"

The teacher, concerned about the REAL tears asked Angela what was wrong, and Angela claimed the para slapped her.

Warning 2) Angela doesn't know how to lie.

The teacher immediately took control of the situation. The principal as well as the head special ed teacher were notified. The principal called to tell me he's investigating this. He knows Angela well, and knows she doesn't lie. He has talked to the other kids who were right there when it happened, though he hasn't yet told me what he's found out.

Obviously I have lots of concerns about the entire situation, my biggest being Angela's safety. I understand that her having behavioral issues puts her at significant risk of getting hurt, either as she's being physically removed from an area (though this hasn't been necessary for several months) or because of staff who aren't appropriately trained in how to implement Angela's behavioral plan. Of course there is also the occasional person who gets it into their head, "Give her a dose of her own medicine once and there won't be any more problems!" I've always prayed one of these people never come into Angela's life.

I have questions too. Not just about the incident (I have plenty of questions there!) but about Angela's life in general. Why does she do this stuff in school and not anywhere else? I've had next to nothing in the way of behavioral issues for a couple of months now. When she is in other situations (like the theater group) I'm never worried about what she might do. I think it has to do with independence. Angela wants it, and at school she doesn't get it. When we do stuff like theater, I either leave like all the other parents, or just stay out of sight so she can have the same experience everyone else does.

And what about Angela's ability to communicate with me? Compared to many kids who have DS, Angela is able to be quite clear. But guess what? Any time there is an accusation made such as this, it's going to come back to how "credible" the child is. How easy will it be for an adult to deny this, and blame Angela's PERCEIVED inability to understand the incident? Who do you believe? I know exactly who I believe, but what about the others involved. With today's incident, the principal was genuinely concerned on several levels. He also made it clear that he's concerned about Angela's transition to the middle school next year, and the training that staff receives before she gets there.

I wish I had all the answers. But what I wish most of all is to have Angela safe, and know that no matter what happens she can count on the adults around her to keep her safe. School is supposed to be a safe place. It breaks my heart to know that she might not be safe there. At least not all the time. Don't get me wrong, our school is fantastic and I know without a shadow of a doubt that they have Angela's best interest in mind. But I don't walk with rose colored glasses on either, and I know that sometime there is going to be that one person who comes along that doesn't belong in the same room with my daughter.

Tuesday, November 20, 2007

Auditions

I'm so incredibly proud of Angela tonight! A couple weeks ago I mentioned that she'd been invited to join the SOS Players, which is a teen theater group that travels the nation doing their thing in schools, etc. Well, there have been several of the kids who are cast in "Seussical" who have expressed an interest in this so the executive director decided to go ahead and hold open auditions. The kids were instructed to bring a 1 minute story or monologue to read. (it didn't need to be memorized)

When we arrived there was a form to be filled out that asked some questions like "What's your favorite cartoon." etc. I helped Angela fill out the form then she went off to visit with the other 7 or 8 kids who were there. She knew all of them from "Seussical" so she felt very comfortable. The parents were told they could leave or stay, though it was pretty clear that "leave" was the option that was encouraged. I chose to stay just in case Angela needed an interpreter, but I sat far enough away that I wasn't really there, if that makes any sense.

We then moved to the theater, where the whole process was explained by the director. "Your audition actually started when you walked in the door. We've been watching how you interact with the other kids, do you feel shy, or do you jump right in, etc." As he said this I could still see Angela, plopping herself down near the other girls, Saying hello to them and joining in their laughter. Something so typical of an 11 year old, yet something I don't take for granted.

Then the director went on to explain the next item on the agenda. This was a game where the director sort of mimed some activities, and the kids needed to mirror what he was doing. He made lots of sound effects too, which the kids had to try to duplicate, but he said no words. Angela did all of the things right along with everyone else, and to me at least seemed less reserved than some of the other kids. Several times she broke into her hysterical laughter which got everyone else laughing. When the director was done miming he asked the kids what sorts of activities he'd been acting out. All the kids, including Angela, were able to name at least one activity.

Once that was done it was time for the shopping game. Two kids compete against each other. In front of them is an imaginary grocery cart. The first person acts out picking an item off the shelf and putting it in his/her cart, labeling as they do. Maybe it's potatoes, or pizza, or milk, etc. The the other person has to take a turn. They need to think fast, as hesitation gets them eliminated, and they'll also be eliminated if they repeat an item that either of them said. The game was explained, and a quick sample game was played by the director and another teen actor. They then asked who wanted to go first. One little girl raised her hand to try the game against one of the teen actors, but she didn't get very far. She's very young (just turned 7) and I think was a little intimidated.

Angela volunteered to go next. She played against another boy her age. I loved watching her play this game. First of all, I wasn't sure she really understood what the game was about. Normally she would watch 2 or 3 rounds of a game like this to make sure she understands it before volunteering. But not tonight! Tonight she jumped right in and it was clear she understood the game. She did everything right. The second thing I'm proud of is that she did better than 3 or 4 of the other kids. She was able to list her items quickly, stay on task, and not get flustered by what they were saying or doing, NOR by the audience of about 20 who were watching!

That done, it was time to do the readings. Everyone went back downstairs and they were called up one by one to read their story. Angela didn't want me to go along, so I hung back and went up after her. She didn't know I was around the corner listening to her reading. ;-) The director helped her with lots of the words, but Angela kept plugging right along. She never gave up. When she was done they told her how much they liked her energy, and that she was clearly excited to be there.

The most special thing of all happened when she was done with her audition. Angela LIVES this play that our dogs are in. Seussical is a fantastic show! She's gotten to know the cast, and has the entire script memorized, but has been very disappointed that she's not actually in it. Every night she asks, "Can I go on the stage tonight? I want to be Jojo...or baby Kangaroom...or Horton." The funny thing is, all the kids who ARE in the play have the acts that THEY'RE not in memorized as well, and like to spend a lot of time recreating them. So here we are in the lobby area of this building, and the cast kids are acting out the play. Angela....queen of imaginary play...could not have been more thrilled to find herself among a group of kids who love to do just what she was spends her days doing...acting out scenes from the play! She jumped right into one of the dance numbers with them and I kid you not people, she was glowing!

The audition done, we headed home. A couple hours later there was a phone call from the director. They'd LOVE to have Angela join their group! I'm so proud of her. Theater is something I know she's going to excel in, but the best part of all is seeing her excitement about being included. Not because she's the token disabled child, but because she shows interest and talent, just like the other kids.

And then there is Bulgaria

Don't turn your back. Don't skip this post. This is probably one you should read the most.

You read my post about the children in Serbia. Yesterday a friend of mine in the UK said there was a similar story aired there about Bulgaria. Here's a link to it. This is unbelievable. That this can happen in the year 2007, we should be ashamed. And if you want to turn your back because it's too difficult to look at the pictures, you should be even more ashamed. That's exactly what these governments are doing and look where it got these children.

You say, "But what can *I* do about it? Just me, here in the US, minding my own business? I'm not in any position to adopt a child." There are millions of us who are not, but we CAN do something. We can help to get even ONE child out. Click on the Reese's Rainbow button at the top of my page and find out how you can help get one child out.

Friday, November 16, 2007

Imagine a different life

Imagine you're a newborn baby. Born in a land far different than where you are now. A place where the value of human life is much different than it is in developed countries. Now imagine that you were born with something like Down Syndrome, or something as minor as a hand deformity.

Your parents will be told to send you away, that there is no care for you, and you're going to die anyway. So your parents follow the advice of doctors and bring you to an orphanage. But remember, this is an orphanage in a 3rd world country. You spend your days, weeks, months and years cold, hungry, and without medical care. If you're lucky, there will be one caregiver who takes a liking to you and tries to give you some extra attention each day.

But there's something looming over you. Something that most children in the world celebrate...your 4th birthday. Only for you, this birthday brings a death sentence, because in many of these countries, if you turn 4 and have not been adopted you'll be moved to a mental institution where you are no longer available for adoption. For all intense purposes, to the rest of the world you are dead.

There you well spend your days like this
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You will be straight jacketed in sheets. Why? Because of the intense boredom and lack of human physical contact you will resort to desperate measures, even if it means gouging your own eyes out. The only contact you will get with people is if you're lucky, someone will notice that your sheets are full of urine and feces and decide to change them. You will never see sunshine. You will never smell fresh air, only the overpowering odor of urine and feces from several hundred children just like you crammed into the same building getting the same lack of care. You will likely die within the first couple of years from some terrible illness, severe dehydration, or hypothermia from lack of heat in the decrepit building.

Or perhaps you would be like this little girl. Bound by her wrists for years already, left alone in a state of severe dehydration. TIED TO HER BED!!!!!
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If you don't die within the first couple of years, your body might continue to grow. But don't think it will get you a bigger bed. Instead you'll be forced to spend more years in the same crib, just like these TEENAGERS have been crammed in.
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But it doesn't have to be this way! It doesn't! While governments and organizations like Mental Disability Rights International will have to deal with the indidual countries, there are ways to save these children! Reece's Rainbow is an adoption organization dedicated to rescuing children with Down Syndrome from certain death in these countries. There are many children who are approaching their 4th birthday. While not everyone is in a position to adopt a child, Reece's Rainbow has established a fund for each child to help with the adoption expenses so that nobody can say, "I would do it if I had the money."

Even if you can't adopt a child, can you spare $5, $10 or more so that someone else can? Please...this makes me sick to know these children are dying. Read through the child profiles. You'll find children that have nothing wrong with them other than an eye that needs surery, or a hand that has a mild deformity, yet they have been thrown away. But we can save them!!!!

Ya know what would be cool?

First of all, there are people who read here who have put my voting page into their favorites, and they vote every day when they check their email. To you, I say THANK YOU!!! You've bumped me up to 11th place out of 270 bloggers (well, I think some have dropped out so it might be 230 something.) That is quite an accomplishment considering the contest has been going on a year and a half, and I've only been in it 6 weeks! Again, thank you!

There are only 46 mored days to vote. That is only 46 days to get 16,000 votes! While that seems an impossible task it's not! There are approximately 150 people reading my blog every day. If every one of you sent an email to 15 people in your address book, and asked them to vote for me every day for a week, that would put me in the lead as of today's numbers. If they voted every day for 2 weeks, I'd win.

Some of you who are reading belong to large groups, like biker groups. They might be interested in seeing blogs like this one. or even this Why not send everyone in the group an email, and ask them to vote if they like that blog.

Some of you might belong to parenting groups, and they might be interested in blogs like this

Scroll through my blog archive to the right. There's a little bit here for everyone I suppose.

Wednesday, November 14, 2007

Ode to a Mammogram

Here's a bunch of breast related humor for the day. Did I mention I have to starve myself for tomorrow morning. That darned cholesterol blood work you know. Anyway, have fun reading....

Ode to a Mammogram

For years and years they told me,
Be careful of your breasts,
Don't ever squeeze or bruise them,
And give them monthly tests.
So I heeded all their warnings,
And protected them by law.
Guarded them very carefully,
And I always wore my bra.
After 30 years of astute care,
My Doctor found a lump.
She ordered up a mammogram,
To look inside that bump.
"Stand up very close," she said,
As she got my boob inline.
"And, tell me when it hurts," she said. "Ah yes!
There, that's fine." She stepped upon a peddle.
I could not believe my eyes!
A plastic plate pressed down and down, My boob
was in a vice! My skin was stretched and
stretched from way up under my chin. My poor
boob was being squashed, to Swedish pancake thin.
Excruciating pain I felt,
Within it's vice-like grip.
A prisoner in this vicious thing,
My poor defenseless tits!
'Take a deep breath," she said to me,
Who does she think she's kidding?
My chest is mashed in her machine,
And woozy I am getting.
"There, that was good," I heard her say
As the room was slowly swaying.
"Now let's have a go at the other one." Lord have
mercy," I was praying. It squeezd me from up and
down, It squeezed me from both sides,
I'll bet she's never had this done,
Not to her tender little hide!
If I had no problem when I came in,
I surely have one now.
If there had been a cyst in there,
It would have popped, Ker-pow!
This machine was designed by man,
Of this I have no doubt,
I'd like to stick his balls in there.
And see how they come out!

Right of passage

Throughout our life there are certain things that are considered rights of passage things. You know...like learning to ride a 2 wheeler without training wheels. That was a BIG deal, and meant you weren't a little kid anymore. Going to school! Now that was a big one, wasn't it? Loosing your first tooth, which in our house also meant your first visit from the tooth fairy. Getting your drivers license. Talk about major!

For girls, getting their period is a big thing, because "now you're a woman" and all that jazz. It's even bigger than getting that first bra. Somewhere in there is your first pap smear, something most of us would rather live without. Having your first baby has got to be the ultimate right of passage for us women, and it doesn't matter if it's by birth or adoption. Each brings it's own experiences that ultimately give you the right to be called a mom.

Which brings me to my next right of passage. Dean and I had spent several months arguing about why he needed to go in for a check-up. It has been years and I was pretty sure his doctor would tell him he was a walking heart attack. In my pestering he asked when the last time was that *I* had gone in for a check-up???? Yeah, I did a little back pedaling, because it had been several years. In fact, it had been EIGHT years! Yep..EIGHT!

I really didn't see the reason to go in for a check-up. Yes, pap smears are important, but I don't have those parts anymore. (sorry for the TMI guys) and that's the biggest reason for a check-up right? For the sake of the argument I agreed to go in if Dean would. The conversation with the doctor went like this:

So she's looking at my chart (I'm new there so she's never seen me before) and says,

Dr: "Ummm...it's been EIGHT years since your last check-up?"

Me: Yes
Dr (somewhat sarcastically): You know it's recommended that you come in yearly...right?
Me: Yeah..I know...so here I am lets get it done with.
Dr: So you need a few different immunizations too.
Me: lovely
Dr: Have you ever had your cholesterol checked?
Me: Nope...guess we'll be doing that too huh?
Dr: Ummmm yeah. You have one child with Down Syndrome?
Me: yes.

So I get undressed, have a seat on the table, and she starts teasing me...

Dr: Those kids with Down Syndrome are so loving and happy all the time.
Me (internally cheering because she said it right, cringing because of the steretype): Yeah, let me have my daughter come in here so she can call you a dumbass and F-ing B-ch. She'll dispell the myth for you.
Dr: So, as you can see, we still use styrrups.
Me: great. Gotta love those styrrups.
Dr: We still do a breast exams too. That hasn't gone techno yet.
Me: K
Dr: So you really need to come in every year.
Me: Yeah, so you told me.
Dr: We do have some new tools! Lookc..Clear disposable speculums.
Me: Great, thank goodness for advances in medicine.
Dr: Yeah, and if you'd been coming in when you were supposed to, you would know this already.
Me: Yeah, thanks for reminding me AGAIN
Dr: So you need to see the dermatologist to have them look at the spot on your neck.
Me: I was gonna ask you about that.
Dr: No need to, it's the size of a lemon, can't miss it. You have lots of sun damage, given your family history you really need to stay out of the sun, and then when you come in every year we can keep a better eye on your skin.
Me: great, I'll remember that. Do I have to have a mammogram? My friends are giving me a hard time cuz I haven't had one yet.
Dr: Nope, you get lucky on that one. You're 39 with no family history, so you get one more year. You do need a pap every 3-5 years (cuz I've had a hysterectomy and only have my ovaries left) But you STILL need a pelvic every year, plus breast exam. So you STILL have to come in every year......... I'm also writing a referral for you to see the audiologist.
Me: HUH? I haven't had an ear infection in years, and my meneirs only acts up once in a great while.
Dr: Because I just asked you something and you didn't hear me.
Me: Great....can't wait to hear what they say

That conversation took place a year and a half ago. I never did quite make it to the audiologist, nor the dermatologist. But tomorrow is that right of passage I was talking about. It happens when you turn 40 (unless there is a family history that indicates it needs to be done sooner.) Yep...the mammogram. Lucky me. Dean's previous wife died of breast cancer. I'm a little surprised he hasn't bugged me about going in, but then he'd have to go in for his check-up too, wouldn't he?

Tuesday, November 13, 2007

&*$#*

That is what Dean spent an hour saying while he tried to put up a new light fixture. We've been talking lately about not buying things manufactured outside the US. (this is very difficult to do, because it seems that the US doesn't produce much of it's own stuff, which would be why we have a high unemployment rate...but I digress.) So of course, this particular light fixture he was battling with was produced in one of the countries that start with a "C" and it's not Canada.

The reason we know where it was manufactured is because when Dean started having trouble, he checked the box. The screws that came with the thing stripped as soon as he touched them with the screwdriver. I swear, I saw them melt with my own eyes. Since I had to make a milk run I was also nominated to make a hardware store run as well. When I came back 45 minutes later Dean said, "Those don't look the same." HUH??? Yes they did! I handed him his glasses.

He stood at the top of the ladder, which was standing just above the stairs, to put the entryway light fixture up. The screws that I got, which were exactly the same as the ones that came with the thing, were too short to do what they were supposed to do. It was about this stage of the fixture replacement that Angela started reminding him, "Don't say bad words Dean." Which, of course, made him want to say more. It's also when he said, "This is why I don't do electrical." To which I reminded him he wasn't supposed to be doing it. His nephew was. "Yeah, well I can't wait on someone else and listen to you whine about this for another month!"

AAahhhh I get it. It's MY fault he has to do this, and my fault the screws suck too. I should have figured this out from the beginning. Silly me!

Eventually he was able to get the new fixture up. He's in the basement smoking an entire pack of cigarettes now. Do you suppose this would be a bad time for me to ask if he picked up his quit smoking pills yet?

Monday, November 12, 2007

Rebellion

Is it possible to rebel against yourself? This whole weight loss thing (or shall I say, WEIGHT GAIN) is getting the best of me. But what's KILLING ME is this feeling of rebellion I have, and I feel like I'm rebelling against myself. Honestly I don't know how else to describe it.

Making a Wish

Some of you may have read about Angela's original Make A Wish. I think it was back in May or June that the people from Make A Wish came to the house. Our representative's name is Hannah, and this was the very first wish she'd done, so she was accompanied by Make A Wish of Minnesota's president.

They really enjoyed interviewing Angela, finding out all her likes and dislikes. For an interview with child, it was quite thorough! Angela made it pretty clear that her entire life revolved around Zack and Cody

Wish kids make 3 wishes. A travel wish, (assuming they're healthy enough to travel.) a "closer to home" wish if travel is difficult, and an "at home" wish if travel is just out of the question. Angela's first wish was to meet Zack and Cody at the Disney Studios in California. Her second wish was a playhouse in the back yard. She wants something along the lines of this
and her 3rd wish was a new bedroom. (I think, oh my gosh, now I don't remember!) We were told that the wait for Zack and Cody would be up to a year long, as they're very popular right now, but we could go with her second wish instead of waiting. We weighed the options and decided to wait it out. A play house is something we could potentially do on our own, but Zack and Cody? We could never make that happen without divine intervention! So, the waiting began.

Today a friend of mine on downsyn posted about their recent trip to Give The Kids The World village in Kissimee, Florida. The had a wonderful time! I went to the website and was looking around when Angela came into the office and stood behind me, "I wanna go there!" she yelled into my ear. "That looks really neat, doesn't it? But we're going to meet Zack and Cody, remember? This place is for kids who don't want to meet Zack and Cody." She seemed satisfied with that answer and walked away.

Reading about their trip reminded me that I hadn't talked to Hannah, our MAW coordinator, since August, so I decided to give her a call and see how Angela's wish is coming, and what the time frame looks like.

HELLO! There is a WRITERS STRIKE!! She said she couldn't believe I called at that very moment. In her lap sat a list of families to call, all of whom had "Meet a star" wishes that, because of the writer's strike, would now be postponed a year or more! Shew as going to be asking them to choose another wish, something that is really tough to do if you have a really seriously ill child who may not have much time left and had been holding onto that wish to keep them going. I asked her about the GKTW village and she said "ABSOLUTELY!!!"

When I got off the phone I called Angela into the office. I explained to her that Zack and Cody are kind of on a vacation right now, and since there are a lot of kids in line, it would be a very long time before we could meet them. Would she be interested in going to GKTW village instead?

The smile and twinkle of excitement was my answer. "On a PLANE? Do we fly up high on a plane? You, me and Dean ON A PLANE? See the Ocean? And Dolphins? And Disney?"

Tonight after she went to bed, she hollered from her room, "Mom? Hey Mom? Don't forget to pack my swimming suit!"

Creative Income

Some people need to find "creative financing" in order to make big purchases...like a mortgage. I, on the other hand, needed to find "creative income" in order to survive.

When Angela's dad and I separated, I was working full-time as a sign language interpreter in the educational system. I had 3 kids with me, and while things were tight, they were manageable. Then two years later the boys decided to move to their dads, and Angela and I decided to move to Eagan and start our new together with Dean. We moved September 1st. On September 6th Angela and I were on a bike ride with her new "kanga bike". She was loving this, and laughing hysterically when suddenly the ground came rushing at us and we landed in tangled mess. Angela landed with her belly making a loud "SLAP" noise on the pavement. I picked her up, brushed her off, and saw she only had some minor scrapes on her palms but was otherwise ok.

Later that night as I was helping her get her PJ's on I noticed her old Nissen scar was bulging. It was just a tiny bulge, but I knew from Angela's history with wounds that this seemingly small thing could snowball right before my eyes. The next morning I brought her into her surgeon who said, "Really, I think it's ok. Yes, there's a tiny hernia there, but I'm not touching it unless it becomes infected or something, and that's pretty unlikely."

"You do realize this is Angela you're talking about. The child who is world renown medical rule-breaker?" I asked. He laughed. I said, "See you in 2 weeks. I know we'll be back here around that time."

Days later the "small hernia" was fire red and she was burning up. She was admitted to the hospital for the first of many stays. Finally Anagela went into the hospital the first week of November, and stayed until the end of February. During that time she had 3 major surgeries and had an open surgical wound about 6 inches long on her belly. It was not a good year! I would sleep at the hospital in Angela's room, then in the morning use the parent showers to get ready for work. The commute to Chaska wasn't too bad since I was going the opposite way from the rest of the world. After work I'd stop home, grab a new change of clothes for the next day, then head back to the hospital.

Angela got very sick. She had an old surgical scar that deteriorated, requiring numerous surgeries, and a winter of IV antibiotics in the hospital. It was really tough to work during that time. My position wasn't one that was easily filled by a sub, even on the rare occasions one was available.

There came a day, sometime around the beginning of January, when I realized I just couldn't DO this anymore. Her dad had only been to the hospital once to give me a break. He stayed overnight, but spent the next day complaining how he didn't get any sleep there. (Gee..really? You mean it's hot like a Hilton?) There were a few times Angela was able to come home, but within a couple of days she'd be back into the hospital via the ER needed to go back on IV antibiotics. With my sick days long gone, my employer was getting impatient, I was exhausted and desperate to find some type of solution. Finally I called the MN state dept. of human services. "Surely there is some type if funding....somewhere...that allows a parent to be a paid caregiver?"

Whatdaya know!? You bet there was! A rarely access funding source called a Consumer Support Grant. It took a month to figure out the particulars and get the REAMS of paperwork filled out. Finally on February 15th I went on Family Medical Leave, and became a stay at home mom, able to spend my whole day at the hospital helping Angela get better so she could come home.

The end of the month Angela DID come home, but it would be a long time before she could go back to school. She still had a large open wound that required frequent dressing changes. Well, that and the fact she was just plain exhausted. Instead she received Homebound Services (where a teacher comes to the home) which she wasn't exactly thrilled with. Finally the last 6 weeks of the school year she was able to go back 1/2 days. Now she was in a new school with kids she had never yet, but she thrived on it.

That was 3 years ago. Angela is still not able to attend school full-time. Medically she's much better, but physically she is easily drained, and by 1:30 is asleep in a beanbag chair. So she comes home, (but never sleeps of course). Angela was recently placed on a TBI (Traumatic Brain Injury) waiver that still allows me to be a paid caregiver, but with a wage we can actually live on.

Over the years I've learned a lot about funding sources in Minnesota, and I can tell you as long as Angela is under age 21, we'll not be leaving the state! There are just too many funding sources available here that you can't find anywhere else in the nation. You can't just GET them, as they each have their own qualification requirements, but if your child qualifies they can be the difference between having a roof over your head!

If you're in Minnesota and looking for "creative income" sources, you might want to take a look here and see if your child or your family qualifies for any of these programs.

Wednesday, November 07, 2007

DARE

Like many schools across the country, Angela's 5th grade class is participating in DARE. (Drug Abuse Resistance Education) They're doing it even though Angela's teacher told me, "I don't know why we're still doing this. Studies have shown it's not effective and it takes a lot of money."

I'd love to point her to my blog below, but I digress.

At parent teacher conferences, the special ed. teacher and the mainstream teacher made it pretty clear that TO THEM it wouldn't work for Angela to participate in the DARE meetings. It's a lot of sitting and lecture type education, something that Angela doesn't do so well with. (as they said this to me, my mind was screaming "WHERE IS THE INCLUSION SPECIALIST?????") Anyway, the 5th grade would go ahead with their DARE classes, and at the end Angela could participate in the graduation program at the end.

HUH???? The couldn't really think that made sense. Participate in a program to celebrate something she hadn't learned? Yes, Angela is perfectly capeable of learning the information in the DARE book!

So for the past couple of weeks, Angela and I have been working through the workbook together. She is one smart cookie. The book gives little situations, and the students are supposed to list what the problem is in each story. Of course, Angela answers like this, "That's cigarettes! That's bad!...DUH!!!" She's so age typically sarcastic, it cracks me up.

The students in the DARE program also need to write a speech, and someone (maybe all the 5th grade teachers?) will decide don the 2 or 3 best speeches. Those students will read theirs in front of the whole 5th grade. Angela wrote her speech herself. Well, let me restate that. She doesn't "write" anything, she dictates. Hers is simple, but she wrote it herself and that's the important part. I have this secret hope that her teachers will think it's cool that she did this herself, and then choose her to read it at the graduation. But then...wouldn't that be singling her out as "special"?

I'll try to make a recording of her reading her speech and post it for you.

Goodbye Red

That's it. It's over. The riding season, that is. I know people who ride all winter and I will not hide the fact I think they're nuts. It is COLD riding this time of year! Yes, a person could spend a gazillion dollars on the RIGHT equipment for cold weather riding, but I'm not one of 'em. So, Red is put away for the winter. If I'm lucky the mice won't be making nests in my saddle bags while she waits it out. It's at least 5 whole months before I'll be on her again. Poor thing! Maybe she could hang out in our warm basement instead? It's quite cozy by the fire!

Tuesday, November 06, 2007

A Mother's Second Worst Nightmare

We all know what a mother's worst nightmare is, right? The death of a child of course. What's the second worst?

(Ring ring....ring ring)
The mom: Hello?
Son #2: Hi Mom! What'up?
The mom: Not much. Just getting some stuff picked up. What's new with you?
Son #2: Oh nuthin. Just work'in. Are you by the computer?
The Mom: No, why?
Son #2: There's a picure of (insert name of son #1 here) online.
The mom: Where online?
Son #2: Take a guess!
The mom: (trying not to sound irritated.) The newspaper?
Son #2: No, even better.
The mom: I don't want to know and I don't want to look. Where is it?
Son #2: The county jail inmate page.

This is a real conversation between a mother and one of her sons. I can tell you that when the mother pulled up the mug shots of her son, her heart sank to her toes. She cried. She swore. As the glassy, chemically affected eyes of her 20 year old son in a mug shot stared back at her via the computer screen, she cried out to God....

She asked God "How do I help him when he won't even speak to me? I know you love him more than I do. Please, what are you trying to teach him? Please tell me there's a good purpose to it in the end! Why do you allow him to continue on this way, following a path of certain destruction? Can't you put up bigger, stronger, more obvious road blocks for him? Please God, give me back my little boy. The giggle of the toddler he once was. The laughter of the 5 year old playing with his puppy. The shy grin of the 13 year old with is first crush. I want him back. His family wants him back. Satan, GET AWAY FROM HIM!!!!! Please Lord...BRING HIM BACK!"

If you wouldn't mind, I know a mom that would appreciate all the prayer her son can get right now. He needs warriors.

Who do you tell YOUR secrets to?

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Overlapping Guests

Since school started we've had Sophie staying with us. She's a lovely little girl with very long blonde hair, blue eyes and a very pretty smile. So I'm told. She's a little younger than Angela...3rd grade to be exact, and they get along famously. They never fight, and that I can recall she's only gotten in trouble a couple of times. It's hard to get into trouble when nobody can see you.

About 6 weeks ago we said goodbye to Sophie because Maddie came to stay instead. Maddie is a wonderful singer, dancer and actress. I've had to remind Angela a few times that Maddie isn't allowed to go to school with her, so when she gets on the bus she needs to say goodbye. Angela always does with a look of sadness on her face.

Today, unbeknownst to me, Lisa and Carol showed up. But there's trouble with these two! Lisa wasn't here an hour before she broke her leg and needed a cast. That darned Carol was messing around, made Lisa's horse get scared and jump up high, causing her to fall to the ground with a loud thud. I know...because Angela imitated it to show me just how it happened.

So Angela called a meeting. She flipped over a laundry basket, set her camp chair behind it, and banged on the basket. "Yets get dis meeting started folks! Carol? You're grounded! Lisa, sorry...you stay in the hospital for 2 weeks till your leg is better. And Maddie? (I thought she went home!) you go feed the horses please. I'm gonna have a snack!"

So that's that. Order has been restored, bones are mending, horses are cared for, and friends are now getting along. I sure hope the peace lasts around here!

Who said kids with Down Syndrome don't do imaginary play?

Sing It

Alright, I'd admit that I'm slightly obsessed with Angela's obsession with the theater. I'm of the mindset that if a kid communicates and interest in something, you run with it. Let them try lots of different things while you figure out where their skills and talents lie. What they don't like or they tire of, you drop. I think our interests and skills continue to evolve throughout our lifetime, as experience takes us to new places.

Angela has tried softball (hated it) soccer (didn't really care for it), basketball (loves it) track and field (loves it) bowling (loves it) Swimming (loves it if you don't make her go under the water.) And is now getting the opportunity to give Theater a try. She particularly loves musicals, and musical theater requires one to develop their voice, so I've decided to let her try her hand (or should I say voice) at voice lessons.

I didn't really give this much thought, but certainly didn't think it would be as difficult as it was to find a voice teacher willing to work with her. I am so fed up with other people's fear of those who are differently-abled, and preconcieved ideas about what some people can/can't do. Yesterday I spoke to seven or eight voice teachers in the area, who all said things like, "Sorry, I don't work with kids like that." or "I think there are special schools for kids like that." UGH!!!!

Finally I got a reply back from Debbie at The Mason Music Studio who said she'd love to work with Angela.

I don't care of all she learns to sing is the Itsy Bitsy Spider. I don't care if she never sings a note on key. What I care about is the experience, and anything beyond that is a bonus in my book!

It's more than just pretend

So Angela has been coming along to play rehearsals with me. By the second rehearsal she had the entire script, score, and entrance cue for each character memorized, all very typical if her. She actually is very disappointed that she can't just go on stage with the kids in the cast and do what they're doing. After all, she knows the whole dance number!

The director of the play invited her to join SOS players which has a junior group. SOS Players is (for the older kids) a traveling theater group that is kids speaking to kids about social issues. Like drug use, respect, responsibility, handling stress, etc. It would be really cool if they can add some disability awareness too! They are all about fostering confidence and self awareness. Several of the kids in the Seussical cast are also members, so Angela will know some of the kids. They meet once a week, and I think she can start going this week. She's going to have so much fun!

The Sock Hop

Last weekend, on Friday night Angela had her school Sock Hop. She's a big 5th grader now you know, the oldest class in her school making it the last Sock Hop there. I wasn't able to attend, as Dudley and I had our opening night, so a friend of mine (who also does PCA for Angela) took her. She said Angela was the belle of the ball, never lacking in friends to dance with. As soon as they walked in the door a group of girls came and whisked her away. I did get some beautiful pictures before they left, but first, you have to see her previous sock hop pics! I can't believe how much my girl has grown up!!!

Second Grade Sock Hop
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4th Grade
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5th Grade: The Coy Laugh
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The Sideways Glance
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And my favorite, the shy smile
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Thursday, November 01, 2007

Zoooooom!!!!

That's what I feel like the past week. Like someone suddenly crapped on my calendar and now I have to try to keep up with it! Here's what I've done the past week.

Got the kid wired for a 3 day EEG. (here's a video link of her explaining it) This means her wearing a computer wired to her head with 50 gazillion wires for 3 days. In order to get them off her head and out of her hair she had to soak in the tub for about an hour with shampoo. Have I mentioned that she no longer likes the tub? Good thing she wanted those wires off!

Clean up puppies. Give them worming medicine, and weigh them. Oh, and change their ribbon collars every other day because they grow so dang fast. One has to also WATCH the cute puppies, because their cuteness is so darned cute! Also I need watch their personalities develop so I can later match them to their families. Whenever I go downstairs I find Dean snuggling with puppy. How sweet is that?

Ran a dog to the vet to get stitches out her her c-section scar, only they also needed to clean the wound. My truck smelled like I had a dead animal in it!

Play rehearsal every night. and it's not for me, it's for my dogs!!!

Clean up after puppies.

Bathing dogs. Both the dogs in the play are white. If they go outside together they wrestle and turn black. It never fails that as I'm getting ready to leave for rehearsal I find a dog who's not the color he/she is supposed to be and I have to bathe him/her. My dogs take a lot of work to bathe, then blow dry with my 8 horse power masterblaster. I could snow blow my driveway with this thing!

Clean up after puppies.

Shave a dog. Zurri needed an otherworldly type haircut for the play. Dudley isn't getting one because he takes too long to grow back, and I don't want to embarrass the poor dog. Zurri could care less.

Clean up after puppies.

Sew Santa pants for the dog. We've run into an interesting problem having Dudley on stage. Ummm...he gets a little nervous up there! When Dudley gets nervous, he feels submissive and...well...things POP OUT!!! Yeah, so he needs Santa pants to keep everything covered. (Dean suggested TAPE, but I think that would be like a guy having tape put on his foreskin. OUCH!!!!) Anyway, I almost forgot about the Santa pants. He's been wearing Christmas boxers the last couple of rehearsals, but tonight is our final dress rehearsal with tomorrow being opening night. So I'm going to run some errands then get to work on the sewing machine.

Make an antler for the dogs THAT WILL STAY ON!! You know, Max (the Grinch's dog) had a single antler on his head. I have made and re-made this thing about 10 times and finally got it right. Zurri wore it last night and it was very cute, even if it was flopping around looking like it was gonna fall off any second.

A couple days ago the right side of my chest hurt. I called my friend Kathy and asked what she knew about lung stuff, and of course she told me to get to the doctor. Well, I don't have insurance at the moment, and I don't have TIME for the doctor so didn't go. I'm still alive. I think I probably pulled a muscle or something in my chest. It still hurts a little bit but not with every breath like it did before.

Ok, gotta run get milk replacer for the puppies because it's time to start introducing it to them. YIPEE!!!!