Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

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

Friday, May 30, 2008

Got Wheels? (by Angela)

Next week is my birthday. I'm 12 years old! I'm so excited! I'm getting a new bike. My bike is red and black. My guy Bruce is making it just right for me. I had to wait a few days to get it. Today I got my new bike.

When we got there, Bruce was still working on my bike. Mom said this is called "tweaking". That is a funny word! I was very boring in that store, so I tried on different helmets. This is the faces guys have in the helmets.
Photobucket

Photobucket

Bruce was STILL working.
Photobucket

We went next door to have a shake. Mom said this is called killing time.
Photobucket

When we came back Bruce made the handle bars just right for me. These are MY handlebars! I have brakes too. One...two...three! On the back, that is mom's brake. That is called a control freak.
Photobucket

We went to the church. There is lots of room there so I won't crash. Hurry up and get my bike out of the truck!
Photobucket

I have to push my feet all the way around to make the bike go. Not backwards. If backwards, that's wrong. Try again. This is a movie of me. This is my very first time on my bike.


I can go fast on the hill. I can use my brakes. Don't turn too fast. If turn too fast, you fall. My stripes are all wet! I was mad that my stripes are wet. Now I have to find clean stripes.
Photobucket

I hurt my elbow, but Mom didn't tell me it was bleeding. Mom said get back on the horse. It's not a horse Mom. It's my bike. I rode some more.
Photobucket

Whew! I'm tired! We went home, and I made a discovery. It's called blood! It was on my elbow and my knee. I don't like blood. Now I have a tear on my cheek.
Photobucket

I love my new bike! Tomorrow I'll ride again. Mom can jog.

Thursday, May 29, 2008

HOM Furniture complaint!

So a year ago, at HOM's annual Memorial Day Sale, we splurged. We bought a new mahagony entertainment center and a huge leather sectional sofa. Because the sofa color was special ordered, our furniture wasn't delivered until August. It was a looooong summer without furniture in the living room!

So a couple months ago we noticed an area on the leather sofa where the color was peeling off. Hmmmm....I decided to wait and watch it, since everything is on Warranty for one year from delivery date. Then last week I was sitting on the couch, watching TV, when I noticed a weird spot on the entertainment center. Keep in mind that we paid several THOUSAND dollars for this piece of MAHOGANY furniture. It's beautiful, goes perfectly in our newly remodeled space, and is very unique. Yeah...so unique that what I was seeing was LAMINATE peeling off in two different areas of the piece!!! Ummm...we didn't pay for LAMINAE!

UGH! I'm so frustrated! Mostly because now it has to be replaced, and I LOVE THIS THING! Everyone who visits here says they've never seen anything like it, and it's just gorgeous!

So yesterday HOM sent a guy out to take a look at the furniture. They'll be replacing the love seat portion of the sectional, but they have to match the color to the rest of it. We won't know till it comes if it's an exact match. If it doesn't they'll have to replace the whole thing. With the entertainment center, we said we don't want an exact replacement since it's obviously NOT what we were told we were getting, and it would just happen again, so we were given a store credit to pick out something else.

So why am I bothered when HOM is standing behind their warranty and replacing everything? We spent several thousand dollars on this furniture. Both pieces are made by different companies, yet they are BOTH major defects to them. It does NOT make me feel good about getting anything...anywhere...in any store, but why are there two companies that HOM is carrying have defective furniture? That really bothers me.

So there, that's my vet of the day! And, if you've come to this post after searching for complaints against HOM furniture, I have a couple other more recent posts as well...all relating to THIS issue and TRYINg to get it resolved, and NONE of it good!

So you think you can dance?

This guy says it all!

Tuesday, May 27, 2008

How Do I Help Him?

When the phone rings at midnight, it's never a good thing, so when my phone rang all kinds of horrible thoughts came rushing into my head. Is Mom ok? Dad? My sisters? Brother? Dean's family members? All in the few seconds it took for me to get to the phone.

I couldn't understand the voice on the other end of the line. I heard sobbing and "Mom?" squeezed out between the sobs, and thought it was T, which didn't make sense since T was downstairs AND I was just woken up from a sound sleep.

As I came to I realized it was N on the phone. He couldn't talk, he was crying so bad. Was he in jail? Was he hurt? Why was he crying like this? He squeezed out, "It's K..." (his girlfriend's name)

"What's wrong? Is she hurt? Are you hurt? Please, take a breath and tell me what's wrong. There...just breath in...and out....and in.... ok?"

Once he caught his breath he told me of the horrible way his girlfriend of 3 years broke up with him.

What do you DO? What do you SAY to your soon-to-be 21 year old son in this situation? I closed my eyes, and begged God to put the words in my mouth.

And I thanked God that N chose to call me...his mother....when he was at his lowest of lows. I rarely hear from N. Only when I call him. I get indirect messages from T, but other than than knowing where N is living, I'm in the dark. Every night I pray that God keeps him safe. That N knows he can come to me any time. Tonight he did, and I didn't know what to say.

There were lots of things I WANTED to say. Like, "Hello! She's only 18 and you've been with her for 3 years! She needs to see the world and so do you!" or the whole, "Be glad she ended it now BEFORE she got pregnant!" But none of those things would have been appropriate to say...now...while he's hurting.

N suffers from Major depression, and suffer he does. He must have said 20 times, "She's all I have. I gave her everything I could, but she's all I have. Without her, I have nothing. I AM nothing." Statements like that, while pretty normal for his age and the situation, scare me to death given his history. I told him I know how it feels to give someone your heart, only to have them stomp on it, and throw it back in your face. N has seen this happen to me, so he knows I know. I told him to remember that he can't control K's past. That the example she has lived with all her life, even though she swore she'd never be THAT kind of person, is exactly who she is right now. It's not completely her fault, because she is the product of her environment, but she did make a choice...and that's the direction she chose to go. I said lots more...trying desperately to grasp for anything I could think of. I tried not to say things that I would have hated for someone to say to me. I really suck at this kind of stuff! I spent an hour on the phone with him, wishing they'd given lessons about this stuff as part of the birthing classes we took. My friend would have a name for this class, something like, "The art of breaking up 101" or something like that.

I doubt N heard anything I said. But what he did hear is that his mother loves him. That no matter what happens, he can call me, anytime, day or night, and I'll do my best to help him. That mom's can't make the hurting stop sometimes, but they do have ears, and they can listen.

Tonight I'm praying that N heard me listening, and that when he cries himself to sleep tonight, he'll know his mom loves him.

Monday, May 26, 2008

Attempts at family pictures

Ok, well they're of our fur family. If you thought photographing 4 kids was difficult, try four fur kids! Especially when one of them is only 6 months old.

"Roman...STAY!"
Photobucket

Hey guys..Mom's over here!
Photobucket

Almost got it...just gotta get Roman to look.
Photobucket

Finally! Only 20 or so pictures deleted. Not too bad!

Dudley, Roman, Zurri, Rubee
Photobucket

Sunday, May 25, 2008

My Blog Roll

I have a love/hate relationship with Google Reader. If you've never used Google reader, or any of the other readers before, you aught to give it a try. Well..only if you aren't addicted to your computer, because if you are, you'll get stuck on there even more every day! Anyway, Google reader lets you subscribe to a blog(s) and read them all in one spot, and it tells you which blogs have new posts. You just read them all right there on the same page. Then it has this little feature where it notices a theme that you tend to read a lot, and it suggests other blogs that also fit that theme. You don't have to click on them. I know that. Nobody forces me to do it, I just DO!!!!! THAT is the dangerous part of reader!

Anyway, I read several (ok a lot of) blogs ever day. Here is my blog roll as it appears on Google Reader. I'm sure you'll notice a couple of themes: There is Down Syndrome, and there is adoption, and there is Down Syndrome adoption. There is hearing loss, and disabilities, and then a little bit more about Down Syndrome. I know there are others who are subscribed to even more blogs. I feel sorry for them, I really do! They have a very, very, serious addiction.

Ben and his Brothers: Live with 3 boys and CdLs
Chewing the Fat
Cornish Adoption Journey
My Newest Daughter
A Day in the Lives of the Urbans
Parenting Special Needs
Adopting Amanda - Our Journey to Estonia
Adventures in Homemaker Land
Amy and Sons
Annie's Porch
bert, bean, rockstar & schmoozer
Bionic Ear Blog
Catch'in Some Waves
Confessions of a CF Husband
Cuemommy
Daniel Drinker
Dreaming on an Angel
Emma Sage
Family Love Notes
Fessler Family News
Gathering Them from the East
Grey-Haired Geek
Hearing Mojo
Hearing Exchange
Kara's Journey to America
Kelley: My new Beginning
Kids & Dogs Blog
Kristina's Story
Kwisteena's Kwaziness
Larkin's Place
Life As Household 6
Life of the Bubelas
Life With My Special K's
Megan's Got 47
Narrow Ridge
Newbold Family's Adoption Journey
Our Ukrainian Journey
Random Thinking
ReJenerationS
Rhett's Journey
Seriously?
The Adoption Option
The Sunflower Chronicles
The Warren Family
We Walk By Faith
What's Happenin at the Hoover's
Wild Angels

Insert masculine laugh here


I'm talking about the laugh made by Tim Allan in "Home Improvement".

I have owned a handful of houses in my adult life. With home ownership comes power tools. But today I discovered a tool I'd never owned before. (still don't actually, as this one belongs to my brother in law.) It is a called a "Pressure Washer". Is it ever a ton of fun! I know lots of people use these every day, but this was a new thing for me! Warning, if you are prone to obsessive compulsive behavior, a pressure washer is NOT for you! Why? Because if you touch it, you will not be able to put it down. But I didn't know that today until AFTER I touched it.

So this thing has been sitting in our garage for a couple of months, waiting to go to said BIL's house. I had suggested to Dean that I might use it sometime to wash the floors in the 3 season porch (aka the puppy room) before our big party. Then today we were at Home Depot (I swear we're there every Saturday and Sunday morning!) and I was eying new cushions for the lawn furniture. I asked Dean "Do you suppose I could just take the old ones and spray 'em down with that pressure washer thingy?"

That was just the beginning.

When we got home, Dean pulled the thing out of the garage and showed me how to start it. He turned it on and started spraying off an old railroad tie at the base of our front deck, wiggling the wand back and forth, making marks all over in the wood. It only took me about 5 seconds to see that he was doing it all wrong of course. I took the wand from him, adjusted the spray, and proceeded to follow nice straight lines down the length of the board. As I did so, images of other similar objects came flashing into my head. Things that have been yucky looking for years that I could spray down and make new again.

The 20 year old railroad ties now all bright and shiny new looking, I headed for the back deck, lugging hoses and the thingy along with behind me. I removed all the deck furniture from the back deck, threw away all the junk flower pots and other junkie looking items that have collected back there, and turned on the machine. It is amazing to me how dirt collects over the years...on wood! Even green mossy/slimy stuff. I meticulously sprayed down each and every board, revealing brand new boards that had been hidden underneath the gunk. It occurred to me that this was MUCH more fun that stripping the wallpaper in my kitchen, a project that still sits nearly, but not quite, completed.

With a deck that now looked new, I accidentally aimed for one of the rocks on the retaining wall. WOW!!! When you spray ROCKS they turn all kinds of colors! I sprayed 10 or so of 'em before I realized the pressure was going to make the wall fall apart and that I'd better not do that anymore. Instead I grabbed those lawn chair cushions and started spraying those. They do look better, but they do not look good, and so I'll have to continue to work on Dean about getting new ones before the party. The furniture itself though, now THAT stuff looks great! And here I was thinking about throwing it all in a dumpster! I even sprayed the cement steps in back, making the cement look like it was just poured today. Interesting.

Next came the front deck. This area has been bugging me for quite some time. Somehow it is a collection spot for anything that gets emptied out of vehicles, or stuff from the yard that doesn't yet have home. Basically it is "flat surface disease" that has struck a very large, outdoor surface! It drives me nuts when people come over and on their way to the door they're walking past coolers, boots, a crappy looking grill, old empty planting pots and a throw rug that has been tossed out the door because a dog puked on it. So I grabbed the wheelbarrow and hauled away all the shed-worthy items and tossed the rest.

I sprayed down the cement step and discovered it looked better dirty. (oops) Under the dirt were splotches of paint, and bleached looking areas in the shape of paint cans. I sprayed down every board on the deck just like I'd done on the back, and just like the back it looks awesome! (it also needs to be re-stained. LOL) And about those rugs...the machine works great on those too, and they're now hanging to dry over the railing. I so wish I'd thought to take before and after pictures. It really is amazing. Later Dean and I were headed for some dinner, and I told him, "We need to get one of those machines!" He said there was no need to, since I'd now sprayed down every possible item. Little does he know what that thing could do inside the garage!

Friday, May 23, 2008

Suicide by Semi

Today in the Star Tribune, it was announced that a recent crash has been ruled a suicide/homicide. The teen driver drove himself and his passenger head on into the semi, killing both of them. The driver of the semi was also killed when his truck caught fire.

Does this sound familiar??????

I'm so angry right now. Granted, this was a kid, who wasn't thinking beyond that very second. I have to believe that anyone in that state of mind is NOT thinking about the person who would be driving the truck, or the passenger he decided to kill as well. But, even though this was "just a kid, he couldn't think that far" I think that's a lot of BS. I bet his parents didn't raise him to be a selfish person, but in the end thats what he turned out to be. And so, in my quest to find answers, I'm brought back to my own post, written just days after Angela and her dad were nearly killed in the exact same fashion. I wish I could reach out to the families of the most recent "Suicide by Semi" victims.
.................
Originally posted August 25th, 2007

There are alot of people who've contacted me this past week who I would love to reply to, but blogger blocks out the email addresses. Late last night I received one email in particular that I feel I must respond to, but I think my response to one will really be for everyone.

To Kam Kam's Mom....(re: comments Sunday August 19th)

I am sobbing and in tears right now. With trembling hands I'm responding.
I have received emails (anonymously) from Tosh's extended family members, telling me "We don't get it...this wasn't HIM! He didn't DO things like this! Gave no indications!" I agree...it wasn't him, and I didn't even know him. Maybe someday, on my blog I'll write what I really believe happened in the spiritual world of good and evil on that night.
If I knew you well enough, I'd tell you all of what I, and the rest of my extended family believe. If you look at the pictures of the accident...and understand the timing and sequence of events of that evening, then you KNOW...beyond a shadow of a doubt...that it was only a miracle, angels and GOD that got my family out of that truck. At one point, after the fire was put out, my daughter's dad was taking pictures of the truck. A fireman told to get away because they needed to do a body recovery on that vehicle. When he discovered that Andy had been the driver...he was shocked...he said there was NO TIME for anyone to have gotten out of that truck, much less a man going BACK IN to get his daughter who was afraid to come out into the flames. Things happened too fast for anyone to get out. They were sure he'd burned up in the fire.

Please know I am so sorry for the hell Tosh's family is going through. There is some extended family member who has criticized something that I wrote (it's kind of hidden on the net) at a time when I was angry, scared and upset by what had happened. I understand that he/she is dealing with their own roller coaster emotions right now. I feel horrible for Tosh's family. They were the innocent ones left behind to sort out the why's, hows, what-if's of it all. It is the sad end that comes with suicide. Too many unanswered questions. Too many hearts that feel guilty about things they shouldn't. "I wish we hadn't argued." "If only we'd collected keys." "I wish I hadn't said...." But Tosh was determined that night. There would have been no stopping him.

My family is dealing with things from an entirely different perspective. It's 1:30 in the morning...last week I didn't get the call until 2:30 a.m. I haven't gone to bed before that time since the crash. I can't. I hardly sleep.

Angela has been putting out imaginary fires with her invisible friends. Yesterday she started patting my leg. I asked her why and she said, "putting out the fire." Here dad has told me where that came from, and I wish I'd never heard the explanation.

Tonight we went to a carnival, and as I put Angela on those giant swings I had to turn and look away. I wanted to throw up. I don't know how to describe what I was feeling. All I could think of was what if this ride collapsed? I'm too far away! Because of Angela's communication issues I can only guess what she saw/heard/felt at the time of the crash. If I pay close attention to her play I can put some of the pieces together. I hope and pray she didn't see the same things her dad did, but in reality I know there's no way she didn't. But tonight, on the way home from the carnival, she told me countless times to "Slow down mom. Take it easy." We were on area of freeway that's known to be a speed/dui tagging place, and there were alot of squads with cars pulled over. With every one that she saw, she said, "Nope. No fire. Nope." She had also just graduated to sitting in the front seat if she chooses. She now chooses not to. "Safe in the back" she says.

I've talked Angela's dad more in the last few days than I have since we divorced 6 years ago. There is no doubt he has PTSD. Her dad has disappeared now for awhile. He told me he was going to. I have prayed every night that this event will be a turning point in his life to realize he has a PURPOSE here, and that clearly he hasn't yet completed his task or he wouldn't be here. It's up to him to figure out what he needs to be doing with his life.

We lost some things that night. The material things are just that....THINGS. No matter how expensive, how necessary, they can be replaced. Andy's permanent address was his truck, so his home is gone. Angela's things...while some were very necessary, have already been replace for the most part. But we lost more, I don't know what it is. I can feel it but I can't label it. An innocence maybe? And inability to ignore areas in our life that we have been ignoring for too long?

I'm a "glass half full" kind of person, and I truly believe that night, as horrific as it was, was a gift to us onn levels that would be incomprehensible to most. Angela and her dad were given life. They were also given a future. I was given the opportunity to watch Angela continue to grow, and now it's up to me to make sure she develops the way God intended her to. Her job here isn't done. He told me when she was a tiny baby that she was here to teach. She has done that time and again with every single person involved in her life over the years, and she'll continue to do so. I can see that I'm not done learning.

I wanted to send flowers for Tosh's funeral, but couldn't find any information about it anywhere online. Believe me...my family calls me the super sleuth...and I couldn't find a thing. Just tonight I found the notice in the local paper. It's the first time I've been able to put a face to the event. Seeing Tosh's face......it left me with a stunned feeling. Please...tell them if I lived there I would be at that funeral, to give them each a hug and tell them I'm sorry for all they've lost. They will (some of them anyway) carry with them memories of that night that will haunt them. I will pray that God soften the edge of the unpleasant memories, and sharpen those that bring them happiness. I pray that he will soothe their hearts, and wrap himself around them in his comforting embrace.
~Leah Spring~

Summer Line Up

I'm hoping this summer Angela will be busy, busy busy! This is the first year we've opted out of extended school year services (aka summer school for special education students) because I'm hoping we'll be too busy! LOL

Angela will be swimming Monday-Weds mornings for 3 hours. We have Camp Friendship arranged for the first week of August, (we're still waiting to hear if she got into the horse camp, or if she's going to the fishing camp) and one weekend per month at Have A Heart Farm in Wisconsin.

Yesterday I interviewed a new high school graduate to do summer PCA for me. She was planning on going along with us to Angela's swimming lesson so she could see where it was at. Then she mentioned, "I used to swim at *insert name of school here* every day on the Blackline team." HA!!! That's where Angela swims! So when we walked in, it was like Old Home Week for this young lady, as she knew all the swimmers and coaches. So, at least I know she's comfortable around the water! In fact, she was able to show me a shorter way to swimming lessons. LOL She spent 3 hours with us and I got to see how she interacted with Angela, and I think she'll work out just fine for summer. She'll be doing 5 mornings a week, and one evening. I'll just have to figure out how to keep Angela busy and cool during the long summer afternoons!

Wednesday, May 21, 2008

Tuesday, May 20, 2008

I have a new hero

I have a new hero, and his name is Daniel Drinker. Daniel and his brother Will are documenting his journey through life. The good and the bad. If you are a parent of a child with DS, I'm giving you fair warning to not watch without tissues! After you've watched the first video of Dan's first date with Sarah, stick around and read/watch some more of his site.

Monday, May 19, 2008

Changes and stuff

I know that some of you are thinking I'm going to write about "those" kinds of changes, but I'm not. In fact, "changes" is probably the wrong word. If the title bar had more space I'd probably say something along the lines of "We're doing a bunch of stuff around here and it feels like we're making all kinds of changes and spending lots of money to do them" But no...there isn't that kind of room in the title box.

Last summer Angela was able to get a new waiver that allows us to do some things, and get some things that will not only benefit Angela, but also allow Dean and I to learn some better skills when it comes to dealing with the behavioral issues. Half of her waiver went into effect in July, but the other half had to wait until we had some other testing and documentation done, and it just went into effect April 1st. Then it had to sit on my desk for a couple of weeks (ok, almost 4) while I figured out the budget. Ummm...those who know me also know that "numbers" and "budgets" are against my religion. With everything done, submitted, and approved by the Gods at the county and state level, we're finally able to do some things we've really been wanting to do!

The first priority was getting the back yard fenced. Angela is learning new skills every day, and her favorite one is called "Spying on the neighbors". (Now that spring is here, and the trees are getting their leaves this will be more difficult to do.) Now, Angela isn't the little old lady across the street who peeks out her curtains every time you make a move. No, Angela is the little girl at the top of the hill, standing in the picture window, watching all the neighbors garage doors. You see, an open garage door means the neighbors are HOME, which...in her mind...means they're available to play! Oh, and she doesn't want them to play at our house, because our house is boring. She wants to play at THEIR house. She also wants to see what food and drinks they have in their fridge, and what shows are on their TV. I think I've sufficiently warned all the neighbors, but that doesn't stop Angela from just taking off to go visiting! As always she saves her adventures for when I'm in the shower or otherwise indisposed, which gives her a several minute head start, and me a heart attack when I discover she's gone!

On Thursday the "fence guys" will be here to set the posts for the fence, then they'll come back on Monday or Tuesday to put the actual fence up. Let me just say I CAN NOT WAIT! The basement door will open directly into the fenced area. Angela will be able to go in and out at her will, while the front door will either remain locked, or I'm putting one of those beeper thingies on it so when it opens it'll sound an alarm. Angela doesn't like noises like that so I think she'll leave the door alone. I'm still working on Dean about filling in that *^$# pond though. I don't think he understands the anxiety and stress it causes me in the summertime. When Angela isn't looking like she's going to fall in it, she's throwing all the dog toys, doll strollers, or what landscaping rocks she can lift into the water. The bigger the "Sploosh!" the better, right? UGH! Just the thought of that pond raises my blood pressure. A good thing though, if Angela DID fall in, thanks to all the swimming lessons she had she won't drown. Might hit her head on a rock or 5 THEN get knocked out, but if it were just the water to worry about there wouldn't be an issue.

The next thing on my list is Angela's physical activity for the summer. She's very quickly gaining weight and this is just not ok with me. Half of her stamina issues are because of the rapid weight gain, some of which can't be helped because it's caused by her meds. But, sitting in front of the T.V. all summer won't help either! She'll be swimming 3 mornings per week, and we have a Y membership so she can do stuff there as well, but I don't always want to be inside. So I was on a quest to find her a bike that she can ride. There are several options of adaptive bikes available, but they're extremely expensive (we're talking several THOUSAND dollars!) Also, leave it to my kid, but she has managed to tip over all the adaptive bikes she's ridden. Although I spent several years planning to have Angela do a "Loose Those Training Wheels" bike camp, the reality is, given her weakened left side, she will likely never have the balance needed to ride a two wheeled bike. Then there is the whole issue of TIA's. We know A) she needs a low center of gravity to prevent tippage B) it needs to be VERY easy to pedal, or we might as well not get the darned thing C) She needs support for her back, as her stroke has made her left side weak and it collapses when she's tired. C) it must be three wheeled.

Tonight we were supposed to have track practice, but it was too cold and damp for me to be standing around in the wind (it was a lovely 45 degrees...blech!) so Angela and I headed to Carz Bike Shop which was recommended to me by my friend Kathy. Thanks to the internet, I was pretty sure what we were going to get before we even went to the shop. There are only two distributors of this particular bike, and while Cars Bike Shop isn't exactly close, it's closer than the other one in Rochester!

Anyway, we tried out the bike, a Sun Cycle EZ3, which is a recumbent trike, and it's perfect! They are going to make some minor changes to it for her (and me!), like adding a hand brake for me in the back so I have some control. Toe clips to keep those pesky feet on the pedals. Also, because it's a recumbent, the chain runs along the frame of the bike, right at Angela's inner thigh level, so they're going to make a chain guard for it. They will also change the hand brake levers that aren't waaaaay to big for Angela's tiny hands. Not that I expect her to USE them. LOL

As we were messing around in the parking lot, I began to wonder what the the world Angela has been doing in Adaptive PE in school. I know she's been riding an adaptive bike, but clearly not very much,(and no, I don't expect her to be doing this every day, I just want to be a fly on the wall to see how she does it!) as she's still at the developmental stage where they do nothing but watch their front tire go round! But this bike was light enough for me to EASILY push with one had and walk along side her so she could just practice steering and not worry about pedaling. Within about 1/2 hr she was doing a much better job of looking ahead if I gave her a target to look at.

While there are pictures on the net of the bike, I'm not going to post any until we have it, which will be sometime next week. Angela is VERY excited to get her new bike!

Next up on the agenda? Registration for Camp!

Prom!

Tyler went to prom on Saturday with his friend Jenna. Those who know me, you'll be shocked to hear I didn't cry! Very close...very very close...but I held it together!

Jenna's mom Paula, pinning his flower on.


Doesn't he look dashing?









Jenna's dress was fantabulous!















And of course, Angela had to get in a picture too!

Friday, May 16, 2008

Thursday, May 15, 2008

Check This Box

Ohhh...I hate making decisions about something that is months away! Well, I guess it depends upon what the decision is about. Like..I have no problem buying airline tickets for a vacation months in advance. Writing it on the calendar and saving the date!

The decision I have to make now is of a different sort, and can always be changed if need be. How cool is that?

For many years, every day when Angela was picked up by the Special Ed bus I walked her down the driveway and waited with her. This is called a "hand to hand transfer". Not only did I do this for the usual safety reasons related to school bus stops, but also because a) I couldn't trust Angela to stay put, staying out of the street, etc. and b) our driveway is also very steep, and in the winter time quite icy. Angela's having poor balance made the trip downhill very difficult for her. Our driveway is kind of long, so if there was a problem it would take me a minute to get there. This worked the same way when she came home, and the driver was not allowed to let her off the bus unless I was at the bus stop. I kid you not, this is worse than having a Kindergarten bus coming and going in the middle of the day, especially since Angela has shortened days! LOL

This year for 5th grade I decided she was ready for some added independence, and bumped her up to "eye to eye" transfer. That meant that Angela could walk to the bus stop herself without Mom hovering around. It also meant that when her bus brought her home I no longer had to walk down the to the end of the driveway to meet her, instead just waving from the top of the hill. However, if they didn't see me, they couldn't drop her off. They also stay at the end of the driveway until she's about 1/2 way up the drive.

According to the calendar, next year Angela is no longer a little kid and will be moving on to the middle school. Her mother is having a hard time with this transition! One of the things I'm having a hard time wit is the busing situation. Angela has been riding the special ed bus because her elementary school isn't our neighborhood school. Instead she attends on on the other side of our town. But next year is different! In the mornings Angela will ride the regular middle school bus with all the other kids. There aren't any other middle school age students in our neighborhood, so I'm hoping she can still be picked up at the end of our driveway. I don't trust her to walk up the street to a bus stop so if she has to, Mom will be walking with her. However, in the afternoons she'll still be coming home much earlier than the other students (noon vs. 2:30).

I had to fill out a form for the transportation department for the special ed bus. I had to choose between three options:

hand to hand transfer
eye to eye transfer
unaided transfer

I hadn't thought of that unaided transfer option. Thats where Angela would be dropped off and the bus would leave as soon as she steps off the bus. They don't need to verify there is an adult here, and Angela can enter the house on her own.

I think she's ready, or will be ready for that by fall. That means even if I'm not home she can come in the house (she'll just plop herself in front of the t.v. I'm sure! LOL) and means I don't have to freak out about making it home in time for the bus. Most moms get past that when their child hits first grade and heads off the full-day school. Not me, I've been doing this for 6 years now and really, I'm tired of it. So, I checked the "unaided transfer" box. I guess we'll never know for SURE if she's ready for this unless we try it, right? RIGHT?

Sunday, May 11, 2008

Mother's Tears

It's not until we become mothers ourselves that we understand the tears a mother cries for her children.

Noah, my firstborn. As he was placed in my arms and I felt, for the first time, the joy only a mother can feel. He is the only one who got those very first mother's tears. They carried with them a bond only he and I can share. I cried tears of fear when, as a toddler, his finger was amputated in an accident, and tears of anguish as I handed him over to the surgeon to have it re-attached. When he was two I cried tears of delight when I found him dragging wet worms around on the driveway, and when I asked what he was doing he told me, "I'm painting!". When he was 12 I cried tears of "Why him?" when we were told he'd need to give himself shots every day, and tears of frustration when at 14 he suddenly refused to do them anymore. I cried tears of sorrow for the teenager who ran away from home several times, and tears of gratitude when he returned safely. There were the tears of pride when I saw my handsome boy dressed for prom, and more at graduation. He'll be 21 soon. My tears for Noah will continue as I watch him struggle his way through adulthood, as I'm sure my mother still cries for me.

Tyler, the middle child. I spent 3 months crying when Tyler was born. He came into this world confused and angry, as if he was upset about having been ripped out of the nice warm cocoon he'd had all to himself. My tears for Tyler were usually in frustration, not knowing how to help him, how to make him feel comfortable in this world that required touch. Tears of sorrow for the boy who struggled to be understood and would repeat himself over and over again until we finally were able to put together what he was trying to say. There were sad, helpless tears as I held him down for repeated blood draws to figure out why his blood cells were different from everyone else's, and tears of apology when I was able to comfort him afterwards. There were lots of tears of joy for Tyler too! Like when he was finally able to say his own name, and when he walked on his feet instead of his knees. Tears of pride at his ability to understand words far bigger than him, like "bioluminescence". There were the tears of fear when mental illness reared it's ugly head and we learned more than we ever cared to about the world of psychiatric care. Really though, those tears of fear and frustration that flowed from me for Tyler were prayerful tears, asking God to show me how to help my son. Now at 19 I see a wonderful young man with a heart of gold. Caring and thoughtful, he holds a place in my heart that no other can ever have. I know I have years of tears for Tyler ahead of me, but for now, when I cry for Tyler, I cry tears of pride as I watch this amazing young man.

When Angela was a baby, I cried many tears for her. Tears of "Why me? Why HER?". Tears of sorrow as we were given bad news over and over again. Tears of fear as I handed over over to the surgeon time and time again. At 8 years old, when I cried at her first her track meet, she asked me, "Why crying mom?" How do you explain to a child you're crying because as she runs across the finish line, you remembered a doctors voice telling you she'd never live past a year old. "Why are you crying mom?" after her recent theater performance. Those tears of pride for my baby, for all the hard work she put in, this child who would likely never talk. "Why are you crying mom?" as she leaps fearlessly into the deep end of the pool and comes to the surface with a huge grin on her face. "Did you see me mom? Did you see?". Tears of thanks to God for allowing me to see this beautiful, wonderful child of mine.

A mother's tears. Joy, sorrow, fear, gratitude, love, happiness. All the things mothers cry about. I'm so thankful to Him for allowing to shed mother's tears.

Who Made the Rule?

Who made the rule that says, "All clothing, after being washed and dried, must be folded and put away into drawers and closets." I've never seen that rule in writing, but I want to know where it came from!

I happen to hate this rule, because...frankly...I suck at getting any of this done! At one time I had 5 kids in the house and I was FAR more organized about laundry then than I am now. But even then, there would often be a mountain in the laundry room!

So here I am, with only 3 of us to do laundry for, and I can't keep up. This is silly though, because I'm no longer working outside the home, so clearly it's a priorty thing. I just hate laundry, the same way I hate cooking and I suck at that too. The laundry that DOES get clean rarely makes it back upstairs to bedrooms, closets and dressers. Instead it stays in baskets in the laundry room, and every morning we each go dig in there for socks, underwear, and whatever else we need. Occasionally I have a caffiene date with myself and get a ton of it done AND folded and put away! But...sadly...this is rare.

A couple weeks ago I asked my husband to do something for me. I told him about the silly rule and how it doesn't have to be this way. There really is no such rule, and so no reason to live by it. I wanted a set of shelves in the laundry room. Well, really I wanted several sets..one for each person, then some for that oddball laundry like linens and towels. I drew it all out, and after making many promises to fold everything as it comes out of the dryer, he built them for me. The laundry room is now just one giant dresser!

My husband is actually loving these shelves, as we have a bathroom that is being remodeled, that is right next to the laundry room, which he is claiming as "his" bathroom. Every morning he will go to the laundry room...I mean dresser...pick out his clothes that are easy to see and find, and do his thing in "his" bathroom.

This is also helpful for Angela, who is really wanting nothing to do with Mom picking out her clothes each day anymore. So I bought her this really cool daily clothing stacker thing from Lillian Vernon.



So, I'm removing the dressers from her room, because A) her room is crowded and b) she doesn't need them anymore. Instead her clothes for the week are in her daily stacker, and she has happily been getting up each morning, pulling out her clothes for that day, and putting them on! And...tricky mom that I am...when the clothes don't match the forcast for the next day, I sneak in there before she gets up and switch 'em! LOL

Maybe tomorrow I'll take some pictures of my laundry room. Now it needs paint and flooring.....sigh.....

Friday, May 09, 2008

Ooohhh I can hardly stand it!

Tyler and I drove down to Jordan, MN today, to pick up Angela's sidecar that I had painted. First, let me tell you, Tracy over at TJ Design was an awesome guy to work with! The first time I was there, I walked into one area of the shop that had several motorcycle tanks in various stages of the design process. There was some AWESOME artwork to drool over! The next time I was there, a guy was picking up his bike that had an unbelievable tribute portrait on it. Someday, when I have the money, I'll have him do my dream paint job. Not only is money an issue right now, but I was a little worried about spending a few thousand dollars on it, and THEN discover I don't like riding with a sidecar! That would really bite! LOL

There were some funky problems that he ran into. Like the tub had a crack in it that wasn't visible. (it was under the seat, against the frame.) that needed to be repaired. There was also a funky chemical reaction between the old paint and the new that caused it to bubble, requiring re-sanding, and then it bubbled again. Very frustrating to the artist!

I didn't think to bring my camera with me to pick it up so you could see it out in the sunlight, so here are pictures of it inside my truck. Tomorrow Tyler and I will bring it down to Spring Valley, MN to the shop of Dave's Cycle who will be mounting it to my bike. A couple more weeks and I should be on the road! When Angela came home I told her, "I have a surprise for you!" and opened up the back of the truck. Oh my gosh...she was SO EXCITED! She was jumping up and down and wanted to climb in the truck to get in the sidecar. LOL Here's what pictures I have, and a picture of the bike it'll be mounted to.


Thursday, May 08, 2008

Angela's New Aids

A few of my internet friends have young kids with DS who either already have, or will soon be getting hearing aids. As mentioned in a previous post, I've spent many years caring for other kids' aids before Angela came along. Isn't it funny how God prepares us for things, by giving us skills we're going to need later on? LOL

Anyway, Angela's new aids came a few weeks ago. Hers are open fit aids, and usually they don't need an ear mold. However, kids with DS usually have such tiny ear canals that fitting domed aids can be difficult. So we went with the newer, smaller ear molds. In 11 years this is the first set of home aids (she wears different ones at school) that she has tolerated!

Open fit aids are the "latest and greatest" when it comes to hearing aids. They're specifically designed to address mild/moderate hearing loss. They provide better sound, less feedback (that high pitched squealing noise that aids make when they're "leaking" sound.) and are easier to program than older models. They're also much smaller, which is really nice when you're trying to fit the tiny ears that kids with DS often have.

The new aids can be ordered either flesh colored, or in a variety of colors. We chose flesh colored aids, and bright pink ear molds. In the past we've always gone with clear molds that are pretty much invisible, however the colored molds allow me to see AT A GLANCE that Angela's aids are in her ears. This is especially helpful when we're outside (makes me cringe, having her wear her aids outside, but hey...she can hear the birds with them on!) or in other situations where she's apt to either loose them or ditch them on purpose. If you're dealing with a toddler the same would be true. From across the room you can see that the aids are in the ears where they belong! Here's a picture of Angela's new aids and molds.


When Angela was little her ears were tiny and very soft, and had a difficult time supporting the weight of her hearing aids. (they were much larger and heavier then.) Huggies are silicone rings that come in a variety of sizes. They fit around the ear to help the aid stay on. If you look closely in this picture you can see the huggies and the string from the critter clips on Angela's ears. Also notice the dark purple ear molds. (by the way, those earmods were about the size of a dime, and I still have them!)


Another tool to prevent loosing aids is to use otoclips. The concept is similar to pacifier clips. They come in cute little designs and can be easily fastened to your child's clothing.


The Phonak company also sells a "kidsclip" which is the same, just different. LOL


Ok, so you've just found out your child needs aids. THEN you found out your insurance doesn't cover them. THEN you found out how much hearing aids COST!!! (anywhere from $3000-6,000 PER EAR!) Where do you go now? Go to visit Hearing Mojo, and read all the information there. They will guide you to America Hears. This company is owned by the former employer of a family member of ours. He got sick of people not being able to afford hearing aids when their insurance won't cover.

I hope some of you will find this information helpful. Feel free to contact me privately if you're still feeling stuck, or need tips and tricks to keeping those darned things on your kid! I think I've tried everything! LOL

Tuesday, May 06, 2008

HUH?

Today I was talking to Angela's teacher, who mentioned that she watched the video from Angela's performance the other night. Her response made me want to post something I recently told another parent who has a daughter with DS.

If you have a child with a cognitive disability, find one thing that she REALLY likes. It doesn't matter if she has the skills or not, just that she LIKES it, and RUN WITH IT! Find a way to get her involved with other kids who like that too. She will fit in, and the other kids will love helping her with it. Angela's special ed teachers are amazed at the things she does outside of school (theater, voice lessons, etc.) because they've never had a kid doing this stuff. Which makes me wonder...what DO they do? There is so much available in our area, why aren't they taking advantage of it? I don't understand WHY no other kids with disabilities in her program are doing this stuff. Maybe parents just assume their kids can't do it? I mean, I've found that Angela doesn't do well with team sports, and so we avoid them. But anything she can do on an individual basis she LOVES!!! Whatever the reason, I just want Angela to be happy and have fun with what she's doing. And just like all my other kids, the moment she says "I don't like it" we're done and move onto something else.

Just say NO to wallpaper

Please step away from the wallpaper isle. I mean it...don't even contemplate it. I can guarantee that if you do put wallpaper up in your house, whoever lives there after you WILL hate it, and they WILL grow to hate you when they're trying to take it down.

Monday, May 05, 2008

Knock Knock Knock

Knock Knock Knock....go to your door and open it. As you do, imagine being greeted by this darling face.
Photobucket

You say, "May I help you little girl?"
She says, "I'm not little! I'm almost 12!"
You say, "Ok almost 12 year old...what can I do for you? And I don't want Girl Scout cookies, I already have a freezer full"
She says, "Oh...ok...This is way better! Do you see me? Do you see that I have Down Syndrome?"
You say, "Really? I hadn't noticed."
She says, "I do! There are alot of people in the world just like me, and there are more coming. Maybe your own baby, maybe a niece or nephew you don't know about yet. Maybe your neighbor? Maybe next week you'll hold your new grandchild who is just like me. They're coming. Can you help them? Will you help them? Please...go to this website to help them. My mom wrote something there.

Of course, you will go there, to read what this girl's crazy mother has to say!

Sunday, May 04, 2008

Isn't this cool? You could win it!


It's a Caboose Trailer Bike, and isn't it cool? You could win it! Just visit 5 Minutes For Mom for details.

Friday, May 02, 2008

Angela's Stage Debut!

For four months I have tried not to be a stage mom. I have sat back and watched Angela create a mask, and work on developing it as a character. I have watched her learn to use her voice in ways she's never thought of, both loud and soft, and in different tones. She even learned how to use a voice that could be heard from the stage.

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

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

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

So...enjoy.....