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!"

Thursday, October 31, 2013

Happy Birthday Asher!

Nine years ago today, on the other side of the world, one mother and one father were given news that would devastate their lives. It ripped their hearts to pieces. The young couple was told their first baby was not perfect in the eyes of society. They knew that culturally, they believed they would never be able to raise their baby.

They made the very difficult decision to walk away. 

Even though they made that choice, they continued to visit whenever they could. Two years ago today, as they visited with their son in the institution for his birthday, the mother and father were informed a family all the way on the other side of the world had chosen HIM. For the very reasons his society rejected him, this new family chose him.

Just a few days later I arrived in Belgrade, Serbia to meet Asher for the first time. 

We have spent almost 2 years loving you. 

Every day you make us laugh with your amazing sense of humor. 

Today, I know there is a mother on the other side of the world who is remembering you, and wondering how you are doing in your new life. I pray God gives her comfort. That she can know you are well loved. 
Happy Birthday little man Asher!

Friday, October 25, 2013

Living up to Expectations

We are cleaning out the basement. Again. I swear we did this four years ago! While going through an old box I stumbled upon my 8th grade report cards.

I just called my mother and told her that for her 75th birthday I am offering her a HUGE apology for the HELL I put her through!

My average grade was a D+. Why did I do NOTHING in school??? My God, I failed HEALTH! How do you fail HEALTH? My favorite, though, is the report written by "Mr. P.", the 8th grade science teacher who was a long-term sub. He wrote on my report card "Leah would do much better if she talked to her classmate Nell a lot less!" (Years later I ran into Mr. Powers. One of his own kids was in a class in which I was interpreting. I introduced myself, and reminded him he'd been my 8th grade science teacher. A look of horror swept across his face. "That was the worst class I ever taught!")  Every report from my teachers that year say things like, "Leah has so much potential but refuses to apply herself." or "Leah is much more capable than her grades reflect her to be."  and "Not one single assignment turned in the last three weeks of the quarter."

I remember going to great lengths to hide this report card from my mother, change the grades, have my mom sign it, then change the grades back before turning it into my homeroom teacher. As if nobody could tell I had changed the grades. Apparently it never occurred to me that my mom would be in contact with my teachers at school throughout the year. If only all the energy I'd taken to hide those grades had been applied to even one single assignment that year!

I remember my 10th grade algebra teacher telling me "You are unteachable", and that he passed me because he "didn't want me in his class ever again." While it probably wasn't the right thing to say to a kid, I know I tested his patience, not to mention his ability to reach a kid who was determined not to learn anything.  The word he might have used instead would have been "unreachable" because I think in that time of my life, I was. Those words stuck with me for a very long time. Throughout high school I assumed I was NOT able to learn, and I lived up to the expectation, graduating near the bottom of my class.

I was so shy in high school! I had my core group of friends but really didn't talk to people outside of that group. I know that is true for a lot of high school kids, but there were days it was all I could do to step of my bus each day. Walking the halls of my high school was extremely painful for me as a socially awkward, late-blooming teenager. In my group of friends I became a clown to compensate and hide what I was really feeling.

In December of my senior year of high school, my guidance counselor summoned me to his office. "I don't really know what to do with you. You have taken all the required courses and all that is left are electives. It is pointless for you to be here taking a full semester of electives when clearly you don't want to be here. You have enough credits to graduate early. Do you want to stay or go?"

My guidance counselor made a wise move at that point. He had enough experience with kids like me (some who may have been related to me!) to know I was headed for trouble. That afternoon I received a call from an Army recruiter. In the 1980's the Army didn't look at your high school transcripts. There were two reasons to join the Army at that time: 1) to defend our country or 2) get out/stay out of trouble.

Two weeks later, without telling my parents,  I took the U.S. Army entrance exams. I scored in the 99+ percentile in all areas of testing, and "out-tested" the language test, which tests one's ability to learn a new language.  Finally, at age 17, it occurred to me I might be somewhat intelligent. Because I was only 17, my parents had to sign emancipation papers for me to enlist. They weren't thrilled.  My mom, sure that I was being coerced, kept asking, "Who of your friends is also enlisting?" Convinced I was doing this of my own volition, my parents signed the papers.

My recruiter arrived in the still-dark hours of the morning. I hugged my parents goodbye, not fully realizing what was before me but knowing I had to be brave. I was a soldier now. The Army owned me.

We drove to the airport, my recruiter escorted me to the gate then watched as I boarded the plane. I landed in Newark, New Jersey and was told by airline staff I should wait at the end of a long hallway. There were many empty chairs but no people around. Slowly, over the course of several hours, other new recruits joined me. All were silent. All looked as fearful as I felt. The words of my high school psychology teacher came to me, "If you do something every day for 30 days it becomes a habit." In that moment, in my fear and loneliness, I wondered if I could change myself in 30 days? If I pretended to be   a social extrovert, could I become just that? If I pretended to be outgoing, was it possible to become become outgoing? Another girl close to my age sat at the other end of my row chairs, "Hi. Where are you from?" I asked. That was the beginning of creating a new self.

The Army was a stepping stone for me. A confidence builder. Being highly competitive, I tried to be the best at every task set before us recruits. Most of the time I succeeded. When I didn't I was even more determined to improve. My drill sergeants targeted me, trying to break me down. Their job was to challenge everyone at the level in which he or she needed challenging and weed out those who weren't able to perform. They drove me both physically and mentally, looking for my breaking point but never finding it. My 17 year old self understood the psychology behind what they were doing and refused to cave. I did every extra push-up, ran every hill they pointed me to, held my breath through extra gas chamber drills, dug my foxholes perfectly, including the extras because my group-mates weren't perfect enough to pass inspection.

28 years later, I look at my four youngest children. 92% of children diagnosed with Down syndrome prenatally are terminated. Society has told them they are not worthy of life. My Serbian boys, hidden away, told they had no place in society. For all our children, our job is to go against everything society tells them, to build them up, make them understand they are equal to the rest of us. God has given us the task of repairing the damage done, giving each the confidence needed to reach their full potential. To challenge them to reach the next level of learning without breaking them. I expect that all of my children, no matter how many chromosomes they have, be contributing members of society, working to the best of their abilities.  I expect they will live up to my expectations.

Monday, October 14, 2013

Student of the Week

Last week Asher was student of the week in his first grade classroom. I wish his teacher hadn't chosen him first. He has no idea what it means, or what is supposed to happen. If he'd seen a few kids be the student of the week before him he'd understand what was going on.

Student of the week is something that can make a parent of an adopted child cringe. Asher came home with a poster that included lots of questions we were supposed to answer, like "Where was I born?" and "The happiest day of my life."

Was the day he met me, his new mom, the happiest day of his life? Probably not. Was the day he left an institution in the middle of Serbia the happiest day of his life? No, it was probably the scariest!!! Really, I would have no idea what other day would have been the happiest. This is a child who spent 7 years abandoned, drugged and severely neglected. I have no idea where he'd find the happiness in that.

Here's how we answered his questions:

My full name:
Asher L. S.

Where i was born:
Kragujevac, Serbia

Favorite foods: 
yogurt, ice cream

Favorite colors:
blue, orange

3 dogs: Dudley, Zurri, Roman

Family members:
Mom & Dad
7 brothers: Rob, Noah, Tyler, Bryon, Aaron, Axel, Abel
1 sister: Angela

One thing I can do very well is:

Favorite thing to do in school:

Happiest thing that ever happened to me:
When I came to America!

Special interest or hobbies:
Playing with my brothers and sister, singing with Mom.

Thing I like to do best at home:
Sing, sing, sing!

Jobs I do at home: 
put my dirty clothes in the hamper, put my dishes in the sink, put away my toys before I go to bed, make my bed.

We also did a poster-board full of pictures. Since Asher hasn't even been with us 2 years yet, we don't have any cute baby pictures or things like that. I decided to call it "My firsts" and it included a picture of "The first time I met my mom." or "The first time I met my grandpa." "The first time I finger painted." and "My first hamburger" and "First time I saw a washing machine".

I knew that Asher's "Student of the Week" was going to bring some questions from his classmates. I decided to use this opportunity to introduce Asher and Down syndrome to the other parents, as well as address some questions they may get from their kids. Last year I sent out basically the same letter and received several emails from the other parents thanking me for the information because their child HAD come home with questions and they really didn't know how to answer them. It was a great way to connect with the other parents and several had more questions. Later in the year as I was involved in various classroom activities the other parents were really proud of their kids and how well they included  Asher in their play.

Here's to hope this is another awesome year for Asher!

Saturday, October 12, 2013


Vestibular stimulation is the when the nerve that maintains balance receives input. This can be in the form of bouncing, swinging, rocking, swimming, rolling, etc. And spinning.

I haven't been able to spin since I was in my early 20's. But Angela? Now this girl likes to spin. Axel likes to spin too, but not the same way Angela does. I knew Angela was a spinner, but I didn't realize just how much her vestibular system needs this kind of input!

If you are not as spinner, this may be difficult for you to watch. (I can barely watch it myself!) What is interesting to me is Angela carries on a conversation while she's spinning, even though she should be out of breath and know...dizzy!!! I don't have video of it, but after spinning for nearly 10 minutes she stands up and walks away like she hadn't just been spinning! Oh, and she changed her name to Cody. ;-) about 3/4 through the video she gets going *really* fast.

(this is not wood floor she's on. It's a mat, so don't worry about her hands!)

Tuesday, October 08, 2013

In My Living Room

This is not my living room. This living room is located on a yacht valued at 12.9 million dollars.
But I'm going to *pretend* this is my living room although the picture really came from 

A couple years ago we had friends staying with us overnight. We've known them for years and they were here for an annual get together. While here one of them used the R-word while admonishing one of their kids for something.

You could have heard a pin drop.

Use whatever language you want in your own house. In your car. Wherever. But in my house, in my living room, it is pretty obvious that the R-word is one that will stop conversation.

I was nice about it, and didn't need to explain where the error was and it wasn't brought up again. (As an aside, why is it that people who have a potty mouth can go to church and manage to not swear out of respect for all things holy or whatever, but they walk into my living room and can't control their mouth????)

So here you are. On my blog. It is like I have invited you into my living room to participate in the conversation. I don't want my guests to be offended and leave because I throw a crappy party and have rude guests. Please remember that my blog is my own personal space on the internet. Every day I hold an open house and expect that my guests will treat one another with respect and not resort to name calling, hate speech or personal attacks.

That is all. Now lets have another cup of coffee! 

Monday, October 07, 2013

21 things about our family

In the past, for DS awareness month, I have posted 21 things about each of the kids. I might still get to that, but really, it is time consuming! Instead, how about 21 things about living in our house instead?

1. Routines are the key. All of our kids are pretty easy going and, for the most part, can switch gears pretty quickly. But, to keep the house running smoothly a routine for each part of the day is really important.  This is true for most kids, but I find it's extra important for the AAAA's.

2. Our kids go to bed pretty early. One of Angela's meds require her to get at least 10 hours of sleep. All of our kids go to bed at the same time between 7-7:30pm.

3. Abel wakes up around 4:00 every morning, no matter how late we keep him up.

4. When Abel arrived, he and Asher wore the same size clothes; 4's moving into 5's. Asher is still in 5's, but Abel is in 8's!!!!

5. We go through one + gallons of milk every day.

6. We go through one roll of toilet paper every day.

7. The amount of IEP related paperwork is overwhelming sometimes.

8. All my kids' IEP's are do at the same time. This is a scheduling nightmare.

9. Abel's favorite food is pancakes.

10. Asher's favorite food is baby rice cereal mixed with yogurt. This is what he was living on when he first came home. He hasn't had it in 6 months or so. I'm thinking about making it for his breakfast on his birthday. Angela's favorite food is pizza. Axel's favorite food is pancakes.

11. Axel learned to tie his shoes just a few months after coming home. Abel will be the next to learn.

12. Axel and Angela love to help the little boys with stuff like getting shoes or jackets on, even though they don't really need help.

13. Axel is now officially taller than Angela, by about 1/4 inch.

14. During the week I get everyone up for school and supervise the dressing, brushing of teeth, etc.. Dean sleeps in just a bit then watches to make sure Angela and Axel get on their respective buses and takes Asher down to his. On the weekends I usually sleep in and Dean manages breakfast for the kids.

15. All our kids love road trips, particularly if Radio Disney is playing.

16. Axel's favorite color is orange, Asher's is blue, Abel's is green and Angela's is purple.

17. Big brother Tyler often hangs out with us on the weekends. He is the only one of the "big boys" who really knows his new brothers. The kids adore him and are always asking, "Is Tyler coming today?"

18. There are 365 days in a year. Angela talks about her birthday several times per every single one of those 365 days.

19. All of the AAAA's will eat any vegetable we give them.

20. The AAAA's get along so well it's a bit weird. They genuinely care for one another and are quick to help another back to their feet if they fall.

21. Our lives are pretty normal. We might help tie someone's shoes or zip a jacket a bit longer than typical, or supervise showers/baths longer than we did with our other kids, but mostly our house is just normal. 

Sunday, October 06, 2013

Be The One

The timing for this video to appear in my Facebook newsfeed was perfect. Nothing less.

"Be The One" {Music Video} from Life Stage Films on Vimeo.

Saturday, October 05, 2013

Trying Again: A Must Read

I originally posted this a couple days ago, but there was a glitch so I am reposting it.

One of my best friends in real life has *finally* decided to start a blog.

Ann Bremer is mom to 6 kids. Her 5th child, John, has Down syndrome. When he was 2 1/2 years old he was diagnosed with ALL (Leukemia) and went through three years of chemotherapy. He has now been cancer free for 5 years!!!

Ann is an excellent writer. She writes with humor and a perspective on life that is very refreshing. I eagerly wait for everything she writes and I know you will too. Please go read her first post and leave her some bloggie love!

Thursday, October 03, 2013

Is it *Really* Inclusion?

Our school district practices inclusion. Really though, it looks more like "mainstreaming" than it does true inclusion. There is a big difference between the two models. But whatever...I don't want to get into all that right now.

All of my kids spend some time during the day in the regular ed, aka "mainstream" classroom. When in those mainstream classrooms they are supposed to be fully included while there. One of my kids classes has a "buddy" program with another class, and they frequently do activities together during the school day. But these are fake friendships. How do I know? Because when the classes go their separate ways those friendships are left at the door. "Real" friends invite their friends to activities outside of the school day, things like going to the movies, out for a burger, a sleepover, a high school sporting event.

But what happens when the school bell rings and all the kids go home? As I mentioned above, those fake friendships get left at the door, where the school credit and the volunteer hours that look so good on college resumes end.

Special educators, and even some mainstream teachers, are aware of inclusion and if they're good they know how to foster it. They make sure to get students with special needs included in school activities. But what is being done for the mainstream students so that they, too, understand what inclusion really means. Do they know what "isolation" means? Do they know what it looks like?

I know one school district in our area that has a great friendship program. It is not for credit. It is for those students who WANT to be involved in it. Through those interactions the students develop true friendships. I have some thoughts about things that could help foster real friendships between students in special education and their mainstream peers.

Since our district is in homecoming week right now, I'll start there. I have been to school pepfests prior to big games. The Special Ed students sit with the other special ed students in their grade level. I honestly don't know if it's because they're told to or this is where they feel comfortable. How about a buddy program instead? Let the special ed student sit with their buddy buried amongst the other students. I can guarantee they'd rather sit with their peers than with support staff. And what about the Homecoming game? Who do "our kids" sit with at the game? Every game we have gone to Angela has sat with us, which is NOT where she wants to be. Evidenced by the fact I have to keep hunting her down, and always she has made her way to the middle of the crowd of her regular ed. peers. She looks at me and waves with a HUGE grin because she is right where she wants to be. With her friends, not her parents. Just like any other kid. Schools make a big deal out of fostering school spirit, but I think sometimes people forget all the different people who make up the community that is school.

Look at the Homecoming dance. Could a group of girls take one special ed student under their wing for dance prep? Hair, make up and all that jazz? Invite the special ed students to hang out with theme at the  dance instead of leaving them standing on the fringes (or not attending the dance at all because they've been so badly excluded and no longer feel comfortable in that environment.)

Prom dress shopping. Angela is my first and only girl, but I'm guessing a lot of girls go shopping for prom dresses together? There is an area school who puts on a special prom for students with disabilities. Our district does a special prom too, but really? Should they have to? Shouldn't our kids feel comfortable going to the regular prom? At their own school?

Aren't all of these activities, along with others throughout the school year, part of building our memories of high school? Just as my kids are entitled to an inclusive education, aren't they also entitled to the same memories their mainstream peers get to have?

Let me hear your thoughts. What are some other ways to foster inclusion with the regular ed students in my child's school or yours? What is your school doing that works? What aren't they doing that you'd like to see changed?

Wednesday, October 02, 2013

Blog Award

My friend Rebecca over at The Bates Motel gave me an award. Wow! She said some really nice things about my blog. Thanks Rebecca!

The purpose of this is to help people discover new blogs. Rebecca has some questions for me!

1. How would you describe your blog?
Oh my gosh. My blog is mostly about my kids, with some odd opinions thrown in here and there. I blog because I like to write. I also want people to see that although we deal with some unusual situations, our life with our kids is pretty normal. Raising a child with Down syndrome doesn't have to be traumatic. Raising four children with Down syndrome doesn't have to be impossible.

2. What are your favorite TV shows?
I don't watch a lot of TV, but the ones I do are on my must watchlist! "Modern Family", "The Middle", "The Little Couple" (especially since they're now going through the process of integrating a newly adopted child into the family!) Last winter I got into "Downton Abbey". I had zero interest in this show all my friends were raving about. I turned on one episode and lasted a whole 5 minutes before being bored out of my gourd! But it was like episode 3 of season 3 or something so I decided to give it a fair chance and watch the very first episode. Many.many.many hours later I had watched every episode from every season and was officially hooked!

3. Describe yourself with three adjectives:
Determined, inquisitive, realistic

4. What's in your fridge right now?
Leftover pork roast, lots of stuff that should be thrown out, ingredients for Asher's lunches, and milk and juice.

5. Who has the biggest influence on your life and why?
This was the most difficult of the 10 questions to answer. I would have to say my dad and my daughter. My dad is the best dad ever. He is patient, kind and loving. He worked hard for everything he has and continues to work hard to keep it. Dean is just like him. ;-) And then there is Angela. She, too, works hard for everything, yet she never gives up. When life is crappy she just keeps on laughing in it's face. Angela *is* perseverance!

6. You have a genie in a bottle, ready to grant three personal wishes, just for you - what would they be.
This is a tough question to answer. Whenever I think about the things I want, it is always for someone else. Don't get me wrong, I can be a very selfish person (evidenced by the hidden box of cereal in the cabinet that is for ME and not for sharing with everyone else. Then again, maybe that is self preservation and not selfishness?) So, what do I want for ME? 50 lb permanent weight loss, a cook for our family because I *detest* cooking. Our mortgage to be paid off.

7. What would you change about yourself?
If only I had better self control. Time management skills would be a plus too.

8. Who's the celebrity you'd most like to meet?
Hands down, Sally Field. I wanted to be her. I still want to be her.

9. What accomplishments are you most proud of?
I think it is pretty amazing that I, personally, pulled off three adoptions. This goes back to #7, but I am queen of unfinished projects. Dean figured I would talk about adoption, he would agree, but that it would never actually happen because of all the paperwork involved. He was surprised the first time, and the second and third.

10. What's your favorite easy recipe that doesn't require ingredients that wouldn't ordinarily live in your cabinets?
Chicken Pot Pie or Tator Tot Hotdish.

And now I need to pass this award on to others. It's hard to pick my favorite blogs. I went to my blog reader and realized I always go to the same blogs first.

The first blog I'm naming is A Difference to This One, written by mom Jennifer. She is an adoptive mom and a homeschooling mom. Her adoptions have not been the smoothest, but even when things are really poopy (pun intended) she keeps her chin up. Jennifer is creative and has great insight to her kids. And also, her Nathan and my Asher are a lot alike! Jennifer is 'real'. She doesn't sugar coat things. When things are hard, she says how, why and what they're gonna do about it!

Next on my list is my good friend Ellen Stumbo. We are real-life friends, not just someone I talk to on this electronic box. Ellen is mom to three beautiful girls. The younger two have special needs (Nicole has Down syndrome and Nina has CP.) and one child adopted internationally. Ellen is an amazing writer and on her way to becoming a published author. I might be a bit jealous. ;-)

So, to Ellen and Jennifer, I have some questions for you, then please pass this Liebster award on to two other bloggers.

1. Of all your blog posts, what is your favorite, or stands out most in your mind?
2. Although it's rare, what do you usually do when you have leisure time on your hands?
3. What do you usually do when you meet someone for the first time?
4. How many books did you read last year?
5. Do your blog posts "come to you" at a certain time of the day?
6. Have you ever won anything? If so, what was it?
7. Do you have a favorite activity you like to do with your kids?
8. What is your favorite memory?
9. What is your best quality?
10. What is your biggest success up to this point in your life?

Wordless Wednesday

Tuesday, October 01, 2013

Down Syndrome Awareness Month


Down syndrome Awareness Month

Many bloggers are participating in the 31 for 21 blog challenge. In previous years I have participated and failed miserably. I think this year I will just try to blog a few times and we'll see how many I complete! I certainly have enough chromosomes in my house to give me plenty of material.