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, November 15, 2013

2 years ago today...

We already knew he had Down syndrome. 
We knew he could walk. 
We knew he could not chew. 
We knew he could not talk. 

We didn't know his name. 
We had never seen  his picture.

Two years ago today, we learned his name was Lazar.

 We were SO excited! I must have been running on adrenaline because I wrote three blog posts that day on our adoption blog. 

It was a Tuesday, November 15th. On the 18th I was on a plane bound for Serbia. 




Friday, November 08, 2013

A Handful of Updates

I'm behind on some updates. Shame on me! You deserved this information a month ago!

Back in September I did a little challenge for the top commenters on my blog. It ended up being a tie between two people, "Kosher Kola" (Hevel) and Stephanie. Both are long-time commenters here! Thanks to both of you, and the rest of you readers too, for being faithful blog readers. When a person blogs, if they get no comments most will eventually stop blogging because it feels like there is no point. When we get comments it gives us a purpose. Just think, if I wrote a book and nobody bought it, I'd never want to wright again.

So, Hevel and Stephanie, you have a little something coming!

*****************

Also, back in August I put out a call looking for some items that would be delivered to the institution in Belgrade. Someone very generously donated the special batteries as well as additional zvibes and tips. Last week they were delivered to the institution and have already been put to use by the therapists there! They now have enough to have one for each floor (that is about 40 - 50 kids per floor) and batteries to last them an entire year. A HUGE thank you to those who contributed! 

*****************

Also, back in September, I started making several changes to the blog. And then life took over and I never followed through on those changes. (I suck at follow through!) And guess what? The blog didn't crash just because I have no fun background for you to look at! 


Thursday, November 07, 2013

How do I teach him to see people?

Ok all you experienced mommas of post institutional kids,  help me find a way to teach Abel to see people. In the institution, people (other children) were nothing but objects to be stepped over. It was survival of the fittest mentality, you get your way to the front to get fed first, touched first, etc. In a pack of dogs there is at least a hierarchy, and the dogs respect the space of the dogs over them.  The institution doesn't even have that. It's not uncommon to see kids playing with each others limbs as if they are an object not attached to a person. For Abel there is no concept that object has feelings, so drag that limb with you until it gets caught on something.

Here are some examples of what we see at home:

I tell Abel to go to the bathroom, not knowing one of the other boys is standing at the toilet peeing. Abel will go into the bathroom and just put himself in front of the toilet, effectively moving the other person out of the way, sometimes causing the other person to pee all over the floor. Abel is completely oblivious to the fact someone else was there peeing!

Going out the door. I make the announcement "Everyone go get in the van." Abel will knock people to the floor to get to the door. He's not really trying to get their first, he's just trying to get there and they happen to be in his way.

I tell Abel it's his turn on the swing. Asher is still working on getting off. Abel is like "That's ok, I'll just move this object (Asher!) so I can take my turn." He moves Asher no differently than if he were moving a stuffed animal out of the way. i.e. throwing it!

Abel plays catch with the other kids, but he's not really playing "with" them. He is using them as an object to return the ball. I don't know how to explain this other than that, but he is not playing "with them", they are just returning the ball.

How do I make him SEE the people?

Conversations with Angela

Sitting around the dinner table:

Angela: Mom, guess what.
Me: I have no idea. It could be anything. What?
Angela: I love ditching school.
Me: Ummm
Angela: Cutting class. It's my favorite.
Me: (blinking. My mom brain is processing slowly.)
Angela: Cut class. Skip school. Ditch class. Yep!
Me: What do you do when you cut class.
Angela: Go to choir! Duh!

**************

At breakfast:

Me: Good morning Angela.
Angela: My name isn't Angela today.
Me: What is it?
Angela: Guess.
Me: It's 6:00 in the morning. There is a law that says no guessing is required until at least 8:00.
Angela: Ask me again.
Me: Ask you what?
Angela: Good morning.
Me: Good morning Angela.
Angela: (totally exasperated with me.) Mom! I'm not Angela. I'm Zack, remember? You have to say "Good morning Zack."
Me: Good morning zack.
Angela: Good morning Mom! I love you!

*************

Angela, just in the door from school...

Angela: Hello? Anybody home?
Me: (standing in the entry.) Umm yes, I'm here. You just walked past me.
Angela: (faking surprise.) Oh! Hi mom! I'm not see you there.
Me: I'm sneaky that way.
Angela: Mom...I've make a decision.
Me: And what is that?
Angela: My decision is....hmmm (taps chin to think) My decision is.....Oh! I know! When I grow up I work at Applebees. Yep! That's my decision!




Sunday, November 03, 2013

Six Months Home

*note* This post has taken me a week to write. I want to be honest about our difficulties, but I also don't want it to seem like we are miserable or something, because that could not be further from the truth!
***************

The first picture we ever saw of Abel,  received on Christmas eve 2012.


For six months I have been Abel's mother.

Six months ago I really couldn't picture what life with him in our house would be like. In my mind there was just no way to take all the stimming, the aggression, the hyperactivity, the high anxiety, the Furby-like non-human noises, the finger biting, the pacing...there was no way to form all of that little boy into a shape and insert him into the puzzle of our family. We knew we had to make a place for him to make it work. To make US work.

Many of you read along on our adoption blog. You saw my panic at the thought of Dean going home early, leaving me to get this feral little boy all the way home on the other side of the world. I had done it with Axel and survived, but honestly, Axel didn't hold a candle to Abel.

I was scared. We were scared. Every adoption puts a family closer to self destruction as the envelope is pushed a little further by bringing another unrelated child into the home. A family could adopt 20 kids and never have a problem, or they could adopt one child and implode. Our risk was high since we don't adopt the "easy" kids. We adopt the kids nobody wants; the older kids, the older boys, the older boys with Down syndrome. But we also knew we were doing what God intended us to do. And here we were, with this little boy who required, at a minimum, two adults with him at all times, hands on. How would we do this?


We had to teach him that he was safe. That was our first priority. That he would always have food. That he would never feel chronic hunger or thirst again. Safe. Trust. He needed to learn trust.

There were so many things this little boy needed to learn.

I don't believe the phrase, "God doesn't give you more than you can handle." If He only gave us what we could handle, we would never grow. We would never learn about ourselves. We would never find our own weakness and fix it. God challenged us with Abel. He took all of the challenging behaviors Angela, Axel and Asher have, multiplied by three, rolled them all around, unfolded his hands and there was Abel.

There were people who doubted our ability to bring Abel through the changes needed to be comfortable in the world outside the institution. There are people who think that our house is similar to a small institution and that Abel would never learn how to "be" in the world. Unfortunately they can't actually see inside our home to see how normal our family is.

I don't even know where to begin when describing all the things that needed to be done to bring Abel through to healing. I'll just list some of the most difficult things.

Severe Anxiety: Abel's level of anxiety was through the roof. He could not sit still in the house, instead constantly pacing and worrying about everything, and I'm sure plenty things we didn't even know about. It was impossible to bring him out into the community with his level of anxiety. The child was absolutely scared to death, which was expressed by very aggressive and destructive behavior. It was evident that until we addressed his anxiety, Abel would not learn how to function outside of the house. Finally we talked to our pediatrician who agreed to try a trial of anti-anxiety medication. Our hope being that with his anxiety decreased he could learn he was safe when out of the house, and eventually we could take him off the meds. Within about three days of starting the meds Abel was a different child. His anxiety level dropped by at least half! Suddenly we were able to take him places that made him (and the rest of us) miserable before. Like a doctor's office! Now we can take him places without him panicking as we walked through the doors.

Severe Hyperactivity: Some of you know Angela in person. She is a very busy young lady and that is with lots of help. Angela is a sloth compared to Abel's level of activity! However, I was convinced much of his hyperactivity was related to his high anxiety, and I was right! Abel's activity level is now GREATLY decreased. He's no longer pacing, and can actually sit down to an activity for quite some time because he's not so worried about what will happen next.

Unusual Noises: This was something that was a problem for us, not necessarily a true problem. Still, I felt that some of these noises were also related to his anxiety, but some of them were the communication he had developed. Since he was starting to sign, he didn't need to make snorting horse noises when he disliked being told to do something, or his raccoon noise when he was curious about something. These noises are gone as long as the routine is not changed and things are predictable. As soon as there is something new, or he becomes over stimulated, the wild noises start up again.

Throwing furniture: In the institution Abel made a habit of throwing furniture. I'm not talking just the kid-sized chairs and tables. No, he threw full-size pieces of furniture, flipping larger things end over end. He mostly did this to get what he wanted by "threatening" to throw something if he was told no to a request. A couple months ago we walked into a new doctor's office. The very first thing he did was walk to the bookshelf to see if he could lift it. Then he looked at me and I could see by his face he remembered he's not supposed to do this. I haven't seen this behavior since then. Interestingly, we also got our sensory room up and running around the same time. I have him doing lots of "heavy" work; lifting things, rolling a medicine ball up the stairs then carrying it back down, etc. I think this has helped too.

Anxiety Urination: This has been pretty frustrating to deal with. If we take Abel anywhere new he is afraid and will pee his pants. We can see the panic on his face right before he does it.  If we go somewhere familiar but a new, unpredictable activity happens there, he will pee his pants. Now if we go somewhere new, or to something we know is difficult for him (like doctor visits.) we just put a pull-up on him so we don't need to worry about it. I would like to get past this phase though, because I don't like putting a pull-up on my toilet trained 10 year old! It will take time, and he will get there in his own time.

Abel also uses urination as a control to get out of things he doesn't want to do. He starts school next week, so we have been visiting a lot so he can get used to the environment. I always put a pull-up on him first. ;-) One morning we were there for Morning Meeting. I had brought him to the bathroom just before it started, and about 5 minutes into the activity he asked to go to the bathroom. I told him "Bathroom is all done." and turned my attention back to the activity. Oh he was NOT happy with me! He looked down at his pants and I could see he was trying to make himself pee. He tapped me, then pointed to his crotch and signed bathroom. The look on his face said something to the effect of "There! You wouldn't take me so I peed my pants! Now you HAVE to take me!" Only I completely ignored him. Oh he was MAD. That's when he decided to try flipping his desk over instead.  Now, Abel is perfectly capable of sitting for morning meeting. We've been doing it in the comfortable environment of home for months and he didn't have 1:1 assistance! This was pure manipulation at it's finest and he learned that Mama doesn't play. The very next day we went back. This time when he went to the bathroom before morning meeting he intentionally ripped off his pull up and handed to me. Unfortunately for him I was prepared and had more. Oh he does NOT like it when he's outsmarted! Knowing how Abel thinks, I know that after a few days of not responding to his attempts to manipulate the situation he will stop trying and settle into the routine.

Behavior with new people: Some of you have been reading here for a long time, including the period of adjustment to school for Axel when he first started going. It took Axel several months to figure out he had to behave in school, and it took finding the ONE motivator to make it work. Now he rarely has any problems in school. Abel thinks a lot like Axel does, and I think I'll be able to use many (though not all) of the same techniques for him to realize behaving in school is not negotiable. Likewise, when we have people to the house, all the excellent behavior he's learned over the past 6 months goes right out the window. The noises are back, the anxiety, peeing his pants...everything. Its because we are out of our normal routine and he has a really hard time with that. Granted, for the most part  he doesn't acknowledge the new people here (with the exception of checking out Grandma's oxygen tank!) And so it's time to make some targeted activities happen at home, including having people over frequently. Abel, welcome to Mama's boot camp!

So what does this new Abel look like at 6 months home? He is extremely helpful. He is always cleaning up whatever room we're in, putting things away in their proper place. When he and his brothers are changing clothes he is all business. Since he's the first one done he is quick to gather up their dirty clothes and put them in the laundry. He eats any kind of food we put in front of him (though he's not super happy with finger foods!) and no longer has extreme anxiety about foods. He loves to hang out in the kitchen and help get ingredients for me. If I take peanut butter out of the cabinet, before I can even turn around he has four plates on the counter, bread and a knife for spreading! The other night we were getting ready for dinner and he took out 6 plates. Nobody counted for him, nor did he count them, but he knew there were enough. One day I had someone here working with Angela. They had the names of all family members written on 3x5 cards laid out on the table. Abel walked past on the opposite side - so the names were upside down for him - pointed to his name and kept walking. I haven't really worked with him on his name so I was impressed he picked it out!

When Abel knows the routine and life is predictable he is excellent. Its when we throw something new into the schedule that he struggles. But this improves every day! Tomorrow he is starting school!!! I'm excited for so many reasons, but mostly because I knew how smart he is and how quickly his world is going to open up for him!

Abel's ability to communicate blows me away. I have lost track  how many signs he knows. Last week he tried a pickle for the first time. When he saw it he signed "eat banana", generalizing the shape and realizing it was similar to a banana. We showed him the sign for pickle so he signed "eat pickle please". He is able to ask for things out of sight, he can sign things like "tie shoes please", "want milk please", etc. He is always excited to go places, asking "Shoes on" to see if it's time to go yet. All of his communication is in sign, and he learns new signs as quickly as we can show them to him. Tomorrow he is getting fitted for his new hearing aids, and my hope is his attempts at speech will be more successful once he's able to hear.

Last night we had relatives here for Asher's birthday. For the first time Abel showed some reservation about hugging someone other than Mom and Dad (so did Asher!). He clearly knows who Mom and Dad are and is well-bonded to our family.

I can't imagine Abel not being here, being part of us. I look back at the wild little boy we met just six months ago, who really had no hope of ever finding a family of his own. He's ours now. He's amazing. He's brilliant. He's confident. HE IS LOVED!


Friday, November 01, 2013

Meet the Schultz Family!

Meet Bill and Kelly and Schultz! They are in the process of gathering their documents for Serbia.  They are hoping to travel sometime right before Christmas! Here's a link to their brand spanking-new blog! They are still trying to raise the last of their funds which they'll need for travel. 

Meet the Greens!

I have known Randy and Sheila Green in real life for several years. They don't just live inside my electronic box! They have four kids, including three girls with Down syndrome. They are currently on their way to Serbia to adopt another little girl with DS, who happens to be coming from the same city our Axel and Asher are from! They have just resurrected their blog so everyone can follow along on the next leg of their adoption journey. I know a few Serbian adoptive parents who will be happy to live vicariously through the Green family! Here's a link to their blog. Go have a read and help them welcome their new little girl home! 

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

Pets:
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:
climb!!!

Favorite thing to do in school:
Music

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

Spinning

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 ...you 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 businessinsider.com 

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

October

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.

Monday, September 30, 2013

It doesn't aways "just" happen

When my big kids learned to talk, it just happened before my eyes. I have a video of Tyler as a newborn and Noah 15 months old. Noah is jabbering away, "Mommy? Watch me Mommy. See mommy? See Tyler baby?" I didn't teach him to talk,  he just did it. Tyler had a tough time with speech because of undiagnosed hearing loss for several years, but once we got that figured out and got minimal speech services from school, his speech took off.

And then there are our Serbian American boys. Speech has not come easy for them. They, and I, have had to work extremely hard and for months at a time for every sound that comes out of their mouths. Instead we push for language and communication which comes in the form of sign language. Talking is a bonus.

Axel is saying lots of phrases now, and is starting to be able tell me things that happened in school. Usually that a classmate or teacher was out sick, or what game they played in phy ed. The important stuff, you know. ;-)

But today has been a day of firsts here in the language department.

This morning as he was getting ready to go to the bus, I told Asher, "Say bye." and he looked right at me and said clear as a bell, "Bye mom." Dean and I both about fell over! A few minutes later I told him to say it again, and he did it, again, perfectly clear. "Bye mom!". Oh his voice is music to my ears. Not even two years ago, Asher came to us completely silent. If you've never met a silent child, it is really hard to describe just how silent they really are. And yet Asher has been able to communicate with us quite well. But it's coming...the silence will soon come to an end.

Later in the day Abel and I went to the grocery store. As we got out of the van I said, "Here's the grocery store. We need some things for dinner." Abel replied in sign, "Bananas eat please."

People, this is HUGE!! This is more than him stringing three signs together, which in itself is awesome. Oh it is far more than that! First of all, he demonstrated that he knows the FUNCTION of the grocery store. He knows there is FOOD in there.

It means he UNDERSTOOD me when I said "Lets go to the grocery store."

He made a request for something that was out of sight. Bananas. He knew that in the grocery store there are bananas and we could buy them, bring them home, then eat them. And he requested to do just that!!! You better believe I let him lead us to the bananas and put some in the cart!

Abel came to us just five months ago with nothing. He could mime some things and that was it. He knew virtually nothing about the world around him. His time was spent destroying everything he could or trying to run away from caregivers. Just five months and he has gained 2-3 years in communication skills.

If you are parenting typically developing kids, please...please don't take for granted the fact they just learn to do stuff all on their own. Sometimes...sometimes there is oh-so-much work involved! But I can tell you, it's the best work I've ever been asked to do!