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!"

Tuesday, November 26, 2013

And he hears!

I've been waiting for a month for today to roll around.

I don't remember if I posted that when Abel had his tonsils and adenoids removed last month, he also had an ABR done, which is a definitive hearing test. Many of us were shocked to find he did, indeed, have a hearing loss. Mr. Stinker Pants is very good at compensating!

We ordered his aids a few weeks ago and were able to pick them up today. Angela came along to offer  her assistance, having the audiologist first put her hearing aids on, then doing Abel's. I would have posted pictures of the actual visit, but I was busy wrestling the 12 legged cat named Abel to hold him still. It went better than our last visit, that's for sure! Still, Abel was on hyper-altert and not at all happy about having his ears messed with.

Now that we are home, he's had his hearing aids on for four hours and is doing great!

Look how grown up he's getting!

At $2,000 per ear, they are absolutely getting tied to his head! He doesn't keep his glasses on without a strap, but with the strap he completely leaves them alone. I don't want him to have two straps on his head so I have ordered a . Safe-n-sound band that will manage both his glasses and hearing aids together. I hope it works for him!

Friday, November 22, 2013

Two years ago today

Two years ago today

I walked down the hallway surrounded by a group of officials.
In front of us was a toddler-sized table with three toddler size kids eating their meal.
The social worker pointed to the boy who's back was to me. 

"This is him. This is your son. Lazar."

I knelt beside him, gently placing my hand on his back.
"Hi." I whispered, my throat so tight I could barely speak.

He kept his eyes on his food, seemingly unaware I was there
except that he pulled his plate closer to him
afraid I would take his food.

I choked back my tears. 
I couldn't let him see me cry.
"Hi Lazo." I said softly. 

He stopped eating. Frozen still. 
Without taking his eyes off his food,
still holding his plate,
he smiled.

A minute later, his food gone, 
we were escorted down the hall to the playroom.
He held the hand of his caregiver.
Walking behind him I saw he walked like a brand new walker
and really wasn't much bigger than an 18 month old toddler.

The social worker told him in Serbian 
"This is your mother."
as she placed him in my arms.

This picture was taken seconds later.
He was SO tiny.

After only a minute I had to put him down because he was too overwhelmed. Poor baby. He was so lost. So disconnected from the world. But slowly, over the next few days, I would begin to reach him.

Wednesday, November 20, 2013


A few months ago I heard about non-profit organization called "I Run 4". Inspired by a close friend who was battling hip dysplasia, Tim Boyle founded the organization to give both runners and honorary runners a way to give one another both mental and emotional encouragement.

Last week I put all four of my kids' names onto the list of Buddies who would like to be matched with a runner, and by the next day they had been matched. The timing couldn't have been more perfect, since Axel's runner, Debbie, was scheduled to run the Big Sur half marathon on Sunday, November 17th.

Axel was excited to learn about this person who was going to run a really big race, so the day before he made her a poster. 

Debbie was so excited to have someone to run for. Another someone to focus on when she's running. I told Debbie Axel's story, how he came to us from the other side of the world, about his spinal fusion and the fact he had never been given the opportunity to run. Now that he is able to, he LOVES to run, though his technique is a bit interesting. LOL

Debbie wore Axel's favorite color orange for her race, and she and took this picture for him just before the race. 

Debbie ended up setting a personal record for the half marathon! She got a medallion at the end of the race. Do you see it hanging around her neck? She worked hard to earn that! Axel was very proud of her when I explained she had to run a very long way to get it. 

Axel loved seeing the pictures of Debbie before and after her race! Then today a package arrived in the mail for Axel. 

*edited to add* Tonight I went into the boys' room to make sure everyone was all tucked in and found this:
Axel brought Debbie's medallion to bed with him.

Since it's beginning IR4 has grown exponentially. There are now somewhere around 2000 runners around the world waiting to be matched with a buddy. I know a lot of my readers have kids or family members with a wide variety of special needs. If your special person would like to be matched with a runner, please visit the IR4 website for more information! I found it very easy to sign my kids up, and my kids are really excited to be able to cheer their runners on! 

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!