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!"

Sunday, February 24, 2013

This n That

Angela is just entering her last week of floor hockey season. She really loves floor hockey! Unfortunately the season started right when she got sick. She missed the first 3 weeks and it's a short season. Angela has been playing since 7th grade but last year was the first she really seemed to understand the game. Unfortunately "understanding" and "keeping up" are two very different things. She is usually several seconds behind the puck. The good thing is, she doesn't care!! She does lot of running around and it's great exercise for her. She's easy to pick out in this video, wearing her new bright pink shoes. LOL


This year she's been so busy with cheerleading, soccer and swimming, then floor hockey. While most people have trouble keeping their kids busy during the winter, we have the opposite problem. Angela is super busy all winter long but when softball season rolls around (in two weeks!) the activity level drops significantly. Special Olympics track and field wills start while we're in Serbia, but it's only twice a week. Maybe I will get us moving more with family walks this summer.

Axel is doing tremendous in school. He is really hitting some developmental leaps right now! He has also started writing and drawing on his own.

He wrote Tyler's name on his own. He got it almost right. LOL

He drew a bus. It starts with "B". Can you see where he drew himself in the door of the bus?

 We're really working on his last name now. I won't let him just write his first name anymore. He's getting it. 

Asher...Asher...Asher. We had his IEP last week. The district is hoping to have a new special ed classroom on our end of town next year. I asked how many kids they need to open it. ;-) This  year he has been fully included in a regular ed. kindergarten classroom and it's been going really well, particularly once he got a 1:1 aid who is fluent in ASL. (Asher adores her!) His teacher is fantastic too. While Asher is developmentally 24-28 months old, it has been really good for him to see that kids TALK, and the play with toys, and just generally how they act. Never in his life has he been around typically developing kids. This has been really helpful for him and he's trying so hard to talk now. We have a solid "bye!" which is adorable. He has several other word approximations he uses as well, and his singing has increased exponentially. Asher has never been fishing in his life, nor has he been in or seen a boat in real life. As I type this Dean is sitting on the couch stringing fishing rods and Asher just signed to him "boat" and was all excited to see what he was doing. 

Asher is a daddy's boy. Yesterday we got paint for the main bathroom. Asher helped carry the paint.

I have implemented a "tough love" program for Asher and his eating. He doesn't have the stamina yet to eat and entire meal but he'll never increase his stamina if he's not made to do it. On Thursday he came home from school and I gave him pancakes for lunch, cut up as finger food. He isn't very fond of finger food since he was never allowed to use his fingers in the institution, but using his fingers allows him to place the food in his teeth.  When I gave him the pancakes he ate 2 or 3 bites and politely pushed it away. I didn't say a word. I gave him time to eat while I ate my lunch, and when I was done I put it all away. When lunch is done, it is done. 

We went to therapy where he had PT on an empty stomach. Dinner time rolled around and I knew he had to be starving. I gave him a 1/2 tuna sandwich and  he wolfed it down!  Then I gave him some stuff that doesn't require chewing. 

Friday he's at school full day so I have to send food they don't have to worry about so it was a wash. However, Friday evening he fell asleep on the couch at 5:00 and slept until 6:00 the next morning! He had slept right through dinner so I knew he'd be famished at breakfast time. He came to get me out of bed carrying his box of baby cereal then got himself a bowl and spoon. Sorry buddy, no baby cereal for you! I made him a waffle and he ate the whole thing without any prompting. Then I gave him a yogurt and some fruit puree to top him off. 

Except for breakfast this morning he has eaten finger food all weekend! He gets about 1/2 the meal as finger food then when he's done with that I give him something easier. We'll keep it at this level for a couple of weeks then up the ante to eating full meals. I'm so proud of him. This has been a real challenge for Asher - and me - but will make some things in life so much easier, particularly going to restaurants and eating at school. 

Thursday, February 21, 2013

Prepositions

Asher has been working hard to learn his prepositions. I think it's really cool I haven't had to do any of the teaching. Nope, he's doing it all on his own! The last several weeks he has focused his area of studies to "On", "in", "under' and "up"

Under the table



Under chairs in waiting rooms



Back under the table


Don't forget "up"!

and in


and more "up"!


Tuesday, February 19, 2013

Dear God

Dear God,

I have tried to be so patient with this chewing business. I knew it would take a long time to overcome the 7 years of pureed foods that Asher received his entire life. We spent months pureeing everything while working on his oral motor strength and...you know...teaching him that he HAS a tongue.
Once he had some strength built up we worked on learning to bite, which he can do very well now and actually has for several months. Several months. He CAN chew now, but not for very long. But most important, he doesn't WANT to chew.

God, I am bored with this now, and pretty much done. Really, it is time to move on to other things. Only I don't want to be pureeing everything for him forever either. So, if I could just ask that you flip whatever switch it is you have up there with you. The chewing switch. That would be grew. Ok?

Thanks and Amen

Monday, February 18, 2013

Adoption Blog

If you're not following our adoption blog, tonight we started an awesome fundraiser! Please go have a look-see! 

Saturday, February 16, 2013

What Time Is It?

Axel has been working on telling time. He is pretty obsessed with clocks right now. Just last week he was introduced to telling time to the hour. He was really excited to bring home homework!




Tuesday, February 12, 2013

Neglected Blog

I know! I'm sorry! It seems most of the blogging I'm doing now, which still isn't very much, is over on my adoption blog. Things have been kinda busy!

But, I'll leave you with something cute. We had a bit of a snowstorm over the weekend. Sunday turned into a BEAUTIFUL day!!!


Do you see the snowball headed my direction?


Wednesday, February 06, 2013

Some Days

Some days a kid just needs to sleep.

Last night I picked Angela up from floor hockey practice and I could tell she was just wiped out. He leads a busy day you know. Just like most high school students do. The difference is it takes more than the typical amount of energy for her to make it through her days.

For several years, I think the beginning of 3rd through the end of 6th grade, Angela had a shortened school day. She just could not make it through a whole day. When she was there all day staff spent a majority of their time redirecting behaviors and trying to keep everyone else safe. What we didn't know was she was having nocturnal migraines and daytime and nocturnal seizures. Once we got those things diagnosed she was a totally different kid. The majority of difficult behavior was gone and she was suddenly able to not only make it through a full day of school, but also extracurricular activities.

Unfortunately the last several weeks have been so rough on her system. Her lungs still haven't settled down and her asthma continues to be a major issue. (in fact, as I type this, I'm waiting for her doctor's office to open so oral prednisone can be called in.)

This morning I made a judgement call. Although she was in bed at 7:00 last night, she was still out cold when it was time to get her up at 5:30 this morning. I'll admit I didn't try too hard to wake her up, but as I type she's been sleeping for 13 hours. Something told me today was one of "those" days. Some days she just needs a day to sleep. She might wake up energized and ready for school, or she might sleep a couple more hours and still be groggy. It's a "wait and see" kind of day. Wait and see how she's doing before I make a decision as to weather or not she's going to school. She does have a floor hockey game today that she won't be happy to miss if she doesn't go, but some days....some days she just needs a day to recoup in the middle of the week. 

Tuesday, February 05, 2013

Today's randomness

Angela is back to school, but she's having to do nebulizer treatments twice a day at school, plus the ones she does at home. This is a very bad year for her asthma! Her lungs still haven't settled down from her hospital stay.
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A couple weeks ago, whenever someone came to the door, Asher started making this funny noise. It took us a couple times to realize he's barking like the dogs. Dudley is his favorite dog and he often comes running into the room just to hug on Dudley a bit. I think because Dudley doesn't tell him no like the rest of us do. (because these are not "love" hugs, these are "I need to squeeze the living daylights out of something!" hugs.)  Now whenever Dudley yawns, Asher imitates him with a big, exaggerated, tongue sticking out yawn. LOL
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Axel was just eating breakfast. He's very concerned about the whole bussing schedule in the mornings because, well he just is. He just told me, (in sign)  "Mom. Bus comes. Stop. Axel on the bus. Bus drives away." 

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Axel is going through  learning explosion. Suddenly he understands the concept of adding. His counting isn't consistent so he doesn't end up with the right answer, but he understands the basic adding concept. He is also learning to tell time to the hour, and reading sight words. I can't wait for him to see his old social workers in Serbia and show him off a bit! 

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Asher is also in a little learning leap! Now in the mornings when we're waiting for the bus  he says, "Buh Buh!" for bus. When Dean comes home from work Asher comes running to tell me (in sign) "Daddy! Daddy!" Just now he finished eating breakfast and came to tell me "Ba Ba!" while signing bath. He went running to the bathroom when I told him to go take his clothes off. Oh how this child loves water! Before I could make it to the bathroom he was hollering "Ma Ma Ma!" When I got in there he was sitting naked in the bathtub waiting for me. LOL
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Angela was very excited to be back to floor hockey! She missed two weeks of practice. Last night was her first game (and first day back to hockey!) and she did great. She was pretty wheezy afterward though. I cannot wait for spring and I think Angela agrees with me. 
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In school Angela's broadcasting class just finished producing a PSA about the R-word. I think the plan is for it to air in her school in March for Spread the Word to End the Word

I hope you have a wonderful day! Mine promises to be busy busy busy! Oh, guess what? I filed my taxes at midnight on January 31st! Do I win the early filing award?

Friday, February 01, 2013

Just Another Friday Night

Friday.

It was supposed to be very quiet day. Well, I guess it was but now that it's 10:00 pm it feels like it was quite busy. I guess it just depends what side of the morning I'm looking at, huh?

We're having record cold here in MN this week. To cold, in fact, to send the kids to the bus stop on their own, so at 6:45 Angela and I were sitting in the freezing car waiting for her bus. It was -2 with a wind chill of -40. Brrrrrrr  Because of the ice I escorted  her across the street and around the front of the bus. In my pajamas. With bed hair. Just a little while later Dean walked (ok ran) Axel down to his bus, and another 90 minutes later I was again in the cold car with Asher waiting for his bus. Brrrrrrrrr

Dean was off work today, so I left him lounging on the couch while I went to run some errands. On the way I realized I was going to be going right past my good friend Kathie's house and decided to call and see if she was up for a drop-in visitor. That's when I realized I didn't have my phone with me. Ruh roh! It is very rare I forget my phone. The kids are spread out among three different schools and it's an unusual day that I someone's teacher doesn't call or text me. Being a woman of fantastic priorities, I stopped at my friends and we visited for quite awhile. I don't get to see any of my real life friends very often so it was a really refreshing visit.

It was almost 1:30 by the time I got home. I walked in to find Dean baking chocolate chip cookies. (is he not the best husband EVER?) He said "Hi!" very quietly and pointed to the couch. There was Asher, sound asleep buried under blankets. Of course today was the day school called! Thankfully they were easily able to reach Dean and he went to get Asher from school. Poor baby was asleep on the couch with his 101* fever.

Before we knew it the big kids were coming home. Dean made dinner (see? AWESOME MAN!) then we were just hanging out. Asher had perked up thanks to some Tylenol so the kids and I were having fun singing some action songs. Somehow this turned into Axel showing us how he could do push-ups. (and he does them quite well!) Then Angela decided to lead them through stretching exercises which included push ups, sit ups, jumping jacks, and some strange contortionist thing she had going on!

I decided to teach Axel and Angela how to arm wrestle. Apparently she already knows how, because when I asked her if she wanted to arm wrestle, she whipped up her sleeves and declared, "BRING IT!!!" and set her elbow down to wrestle!

A family arm wrestling tournament ensued.

Then I had the brilliant idea to challenge Dean to an indian wrestling dual. On the hardwood floor because we trashed our area rug months ago.

Did you indian wrestle as a kid? It's when you lay on your back, the other person lays next to you but with their head by your feet. You each bring up the leg closest to the other person, hook legs and try to pull the other person over.

Indian wrestling is not meant for two very out-of-shape middle-aged adults. Just say'in!

Now the kids are all in bed and Dean and I are both taking Ibuprofen. And also, he kicked my butt wrestling.