Blogging about life in Minnesota, raising our six 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, January 31, 2014


Asher is awesome at getting our attention. If you're familiar with attention-getting techniques for people who are deaf/hard of hearing, he has "the wave" down pat. Sometimes he uses a sound with the wave to get our attention. For those who are new, Asher is hearing.

We've been working for several weeks on getting Asher to say "Mom" instead when he wants my attention. Twenty times a day we prompt him. I pretend to be oblivious while I wait for him to say it. The same routine, over and over, day after day, in hopes that he'll get it.

Today Abel, who is hard of hearing, came up to me, tapped me gently on the shoulder and said, "Mom."

I'm sure he wondered what he did to make me cry.

Sunday, January 26, 2014

What if he doesn't want to learn

Abel has been home for 9 months this week. For nine months we have worked on his learning to "be" in the world. In the midst of that we have also worked on learning some academic related things, like letters, colors, etc.

Let me just say, Abel is one stubborn boy!

But is he really? Maybe learning to be in the world is all he can manage right now? Because really? He was so far behind in the game there has been A LOT for him to learn. He has learned and knows how to live at home now. He totally gets the routine of our life. He is the most helpful of all the kids, the first to grab grocery bags out of our hand so he can put stuff away. He is the "neat freak" and wants things put away in their correct places (most of the time anyway.) He is a stickler for doing this the way our routine dictate they should be done.

But just once, try to get him to sit down with the iPad and play with a learning app. OH THE TEARS! Unlike Asher, who loves to sit and watch over someone's shoulder, Abel avoids the the iPad at all costs. We have a new computer with a touch screen monitor. If I put him on kid websites that are all cause and effect...yeah...its not happening. He cries and cries, "All done. All done" he cries. If I sit down with him at the table and we work on a fun activity together, he can't stand it. He wants nothing to do with it. Knowing he has MAJOR attachment issues, I try to set things up that he can do without my 1:1 attention. He will put his hands under his legs and cry as if someone is torturing him.

When Axel came home, by the time we arrived here in the US he knew half of his letters and most of the letter sounds. They are very different kids. They are both very intelligent, but they are driven by different types of learning styles. Axel is all about figuring things out. We can't leave any electronic gadgets sitting out our Axel is likely to reprogram them, erase them, or something along those lines. I have had to change the settings on one of our iPads several times because he keeps going into it and messing with stuff. Very typical behavior, of course, although he'll do it no matter how many times we tell him not to.

But Abel is different. Abel is driven by movement. The faster, the harder, the better. He wants to move hard and fast. I have tried incorporating this  need of his into learning activities. Like RUN to the other side of the room, drop a letter into a bucket with the matching shape, etc. No go. That is learning, something he is resistant to.

Unless I bring out the food.

Food is still Abel's biggest motivator. When the right foods come out (something really chewy to give him oral input, like gummy bears, alternating with something crunchy like pieces of cereal) He is suddenly able to match colors, and can even identify red, blue and yellow. When asked to do a simple puzzle, he normally slams the pieces around mad that he has to do it, but shown his edible reward he easily puts them into the right places, even gently...when he's told no treat if he does it with roughness and slamming.

Now Abel is learning how to be in school. We've been slowly working him into his school day, with me having as little involvement as possible. At the moment we're addressing a critical behavior that I think within a couple of days we'll have extinguished. (post coming up about that) Right now he's still only there for a couple hours a day, but by the 10th he'll be in school full time. So far, so good!

Saturday, January 18, 2014

Photo Catch Up

I take lots of pictures with my phone, but usually forget to upload them to my computer. (mostly because I hate using my droid with my mac. I want my iphone back.) 

Loving having a Papa!

Dean's parents gave Axel this Thomas the Train travel set for his birthday back in August. He loves it. He takes it out and very carefully spreads it out on the living room floor, then lines up all the trains just so. He puts the helicopter on the landing pad, then acts out all kinds of scenes. He does this most on Friday or Saturday nights when the little boys go to bed early and won't pester him. He plays with them for a coupe of hours, then when he is done he very carefully folds up the mat "just so", and puts all the pieces back in the box, exactly where they go. Then he puts it back in his hiding spot. I just took these pictures last night, and you can see how he's taken such good care of it all this time. He is like this with all his toy! 

The kids were playing in the sensory room with us watching on the camera. We couldn't find Asher in the room so we started panning. Asher found US! LOL

Abel's runner Laura sent him a gift. He loves it! 

Roman is always taking the small toys he can find around the house and dragging them into his kennel. Apparently this puppy was thirsty too. 

A bunch of busy elves on Christmas Eve.

Another girl outfit has found its way into the  house! I can't wait until J is here to wear it!

One day the little boys were being particularly rambunctious but I needed to make dinner so I brought the tunnel upstairs. Later when the went to bed it was folded up to be put away. Except Dudley discovered it and figured it must me for him.

Tuesday, January 07, 2014

Making complicated things easy

I have lots of little systems set up in the house to simplify things a bit when I'm not around and there are other caregivers here. Dean likes when I have things set up and easy for him, and we have PCA's (Personal Care Assistants) here periodically who need to be able to easily see what's going on. I try to make everything as visual as possible in case someone can't reach me if there is a question. Like, when I go out of the country to bring another Spring home!

One of the systems I have set up is for medication dispensing. Three of the kids take an assortment of medications and vitamins.

I know all the information, who gets what, and what dosages in my head. But for Dean, or other caregivers, opening this every morning can be a bit intimidating! (this is only 1/2 of the bottles!)

I have needed a way to dispense medications for a month at a time. When I went to Serbia to bring Axel home it was easy because Angela was the only kid here. With each trip to bring home a new child I have had to streamline things even more.

I've tried lots of different medication dispensers. First there was this one. The days click together so you can take just one day with your, or a full week, etc. (this is necessary for us.) But, noticed they are taped shut? Yeah they don't stay closed very well! Dispenser fail!

Here is a single dose dispenser. It works well enough, but 
they don't stack very well so they fall all over the place. 

This one stacks well enough, but you cannot
separate the days to take meds with you.

This has been my favorite. 
It is clear so I can easily see what meds
haven't been taken. 

Each day can be removed to take with you, or I can take an entire week and not have the individual cases falling out all over the place. 

It stacks well.

What I don't like is that the print the stickers rubs off after just a few weeks. When I first looked
the company didn't sell replacement stickers. Now I can't find this dispenser in stores anymore. Also, the sliding lids do need to be taped when I take individual days with me, otherwise they slide open, spilling pills everywhere. 

So, I'm looking to re-do my medication dispensing system. It needs to have the following features:

1) stacks easily without falling all over the place. This means it must be perfectly FLAT.
2) No rainbow colors. I need something that is solid color, but available in multiple colors. For example, I could have one set that is all green, one that is all blue, one that is all red, so each kid has their own color. Just clear is ok, because I can use nail polish or something to color code them.
3) the lids need to be secure so they can't accidentally open in my purse.
4) I need to be able to take a full week with me and the individual days  all stay together.

Monday, January 06, 2014

This is Snow

A couple weeks ago there was a day that both the little boys were home AND it was nice enough to play outside. (there hasn't been a warm enough day since!) 

Abel, I want to show you this stuff. 

This is "snow". See it? 

Here, hold out your hands.

Wait, there is more snow over here. 

This is better snow right here. Touch it Abel!

Here it comes!!

What the...Did you just throw that stuff at me?

This is weird stuff!

Want some more?

I'm gonna get you Asher!

Do this Abel! It's a snow angel.

There. I did it. Can we go in now? 

Mom. Really. I don't like this stuff. 

I give up. I refuse to like it. 

Its ok Abel. We'll try it again another day.

Just in case...

Since not all of my blog readers here are on my Facebook, and not all of you are subscribed to my other blog, I thought you might like to know we made an announcement on our other blog

Sunday, January 05, 2014

Baby its cold outside!

We've had a great time but christmas break has come to an end. Or has it?  Axel started back to school on Thursday, the rest of the kids start tomorrow. Only there is a problem. It's so cold here that on Friday our state's Governor has ordered a statewide school closure for Monday, and left it to district discretion as to whether or not they will open on Tuesday.

On Friday I took the kids out of the house for the first time all week to stock up on some staples like milk, bread and chocolate. The entire population of our town was also at the grocery store and all their carts were full. It was like everyone was getting ready for the zombie apocalypse or something.

All weekend the temperatures have steadily dropped lower and lower. As I type it is -18 with a -30 wind chill. Check this out. There are so many negatives this image that they messed up the graphic!

Keeping the kids busy has been a challenge, that's for sure. Its one thing to get your kids coloring, or playing with legos, playdough or other busy things, but when your kids....aren't quite at that level yet, it can get interesting. 

One day I broke out the slime. Two of the kids were not thrilled. 

Another day Asher, Abel and I did a bunch of coloring. No pics because my hands were busy stopping the crayons and markers from flying across the room in protest.

We have watched Dad snow blow the driveway. (too cold for little boys to go out and play!)

and there has been lots of napping for everyone. 

We did lots of Just Dance 2014. 

Tonight, I was really desperate. I let Axel paint my nails. He thoroughly enjoyed this activity. Asher was quick to put his in place to be painted too. 

Now if we can just survive a few more days!!!!