Blogging about life and raising our five kids with Down syndrome.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, January 31, 2011

Pre-op Exam

Today was Axel's pre-op exam for his MRI and ABR which will be done on Weds.

You know, he is all talkative, and fun and games when Angela is the one being seen. Yeah, only today Angela was not with us (since she was FINALLY well enough to go back to school after missing an entire week!)

Without big sis around, my little spider monkey, a persona I haven't seen for several weeks, appeared in that exam room.

When I sat down, Axel sat in my lap. When the Dr. touched his hand, he did his scared breathing thing, his entire body tensed, and wrapped his legs around mine. When she said it was time to hop up on the exam table, he wrapped his arms around my neck and said, "OOOOowwwwww".

I peeled Mr. Spider monkey off and deposited him on the table, assuring him that there were no owies yet and to just relax. Which he did, because he's a good little spider monkey, and we are bonding and all that.

As he laid back on the table, I saw something I have never seen before. (Probably because I don't watch him do sit-ups without a shirt very often) but he has a HUGE hernia. (diastasis recti) Now, this is pretty common in infants, especially those with Down syndrome. Angela did not have this (though she had several other hernias repaired) It is also common in woman who've gone through a pregnacy and is repaired, which is part of a tummy tuck. I know...I used to have this and it was repaired...But I'm pretty sure Axel hasn't had a pregnancy, so  I'm not very familiar with what, if anything, is done with it in a 10 year old boy. And I didn't ask either, cuz we have enough on our plate and I'm not looking for anything else right now, than you very much! We still have to get his dental work done for goodness sake!

Once the spider monkey exam was done, we went over what immunizations he needed. The International Adoption clinic played vampire several weeks ago and ran titers to see what he's immune to so he doesn't get unnecessary vaccines.  I knew he'd already had chicken pox, because he has several tiny pox scars on his face. Since he's starting school in a few weeks, AND having an IV run in a few days, we decided it's best to get his DPT  done so he at least has tetanus covered. Axel needs about 12 different shots over the course of the next 8 weeks or so. Since he's 10 he can technically get several at once, but I'm leering of doing that so we'll spread them out. A lot. As much as I can without it affecting his ability to start school.

Discussion done, Spidey and I were waiting for the nurse to come back in with the shot hidden in her pocket.  Axel was sitting in his own chair, and I in mine, and he was looking at me and jabbering in Axelese. I'm pretty sure he said, "So are we going home or what, cuz in case you didn't notice, everyone else left the room. And, by the way, my shoes are over there and could you hand them to me? And yes, Angela told me there is a McDonalds right next door and yes I did too see it when we drove in, and yes, I know they have fries. And by the way I'll have a chocolate shake too. Oh, and..."

And then the nurse, Bridget, came in with one hand in her pocket.

"Ooowwwww" said Axel as he morphed back into spidey and lunged for my neck.

How did he know? He has not had ANY shots since he was 12 months old! We never ONCE said the word "shot", and even if we had I don't think he'd know the word. (unless Angela taught him, which is very possible since they play "Doctor"  A LOT! And one of them cried yesterday when they were playing but they BOTH looked guilty, and now I have figured out a way to set up a secret camera to spy on them when they're playing just out of my sight.)

Fortunately, although spidey has muscular arms, and ZERO percent body fat, I didn't have to hold him too tight. The shot was done quickly and he was more worried about the sticky bandaid that was put on afterward. Sticke + Axel = no thank you very much!

We left with a stack of papers for Thursday's procedure, and I just now...as I typed this...remembered I was supposed to get a copy of Axel's x-rays to bring along. Lovely. I have tomorrow and Weds to do that. I predict a problem with this lack of planning on my part.

Sunday, January 30, 2011

The Set Up

Dean and Axel just went to the store. We need toilet paper.

But this trip to the store is really a set-up, and it's totally possible they will come home without said toilet paper.

Axel is a perfect angel when I take him places. Anywhere. I can take him anywhere and he's excellent. Always! For Papa? Not so much. I have heard accounts from other's who've seen Axel and Dean together when I'm not around, and I hear he's a totally different child. You see, Axel is still in the testing phase with Dean, and is really pretty naughty Dean takes him somewhere, so today Dean is showing Axel exactly where the limits are. Today they will be running lots of totally unnecessary errands. The kind that don't matter if you come home without the stuff went in search of.
.........................
They pulled out of the driveway and not 1 minute later they pulled back in, and Axel, who was laughing his naughty laugh,  was brought into the house and deposited in "the spot" at the end of the hall. By the time he got to "the spot" he was no longer laughing and was now crying because he would really rather be in the car.

A couple minutes later Dean asked him, "Are you ready to try again?" and they got back in the car.

..........................

They've just come back with the toilet paper and a few other things, but Axel was brought back to the house and deposited back in "the spot".

"He was GREAT in the store! But on the way out he started grabbing carts and shoving them, laughing the whole time. He did the flop-n-drop in the middle of the street, laughing, and I had to carry him to the car! Then he shoved the cart and ran the other way." Oh...Papa is not a happy papa at the moment!

After a couple minutes in "the spot", Dean asked him, "Are you ready to try again?" They have now headed to a different store to give this whole behaving in public thing another go. Kudos to Dean for sticking with it, and making a day of helping Axel understand that he has to behave for Papa too!
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Well, they made it back, and Axel was excellent in all FOUR stores they went to! He even came home with a chocolate encrusted mouth to prove it. ;-)

When Sisters Blog

My sister Sandie started blogging a couple weeks ago. She's 50 you know, (which is much older than me. Just say'in....)

Today she writes about something every parent or caregiver of a child needs to be aware of. Please go read.

Of course, I cried for my sister. I knew the same people, though I was much younger than her I went to the same school(s). But someone else came to talk to me at school. Mr. Hoppe (pronounced Hoppy) He was a very nice man, and was a psychologist. Of course, when I was 9 I didn't know that detail. I just knew that he came to visit me in school many times. And I remember one time my parents took me to his office.

What I don't remember is why Mr. Hoppe came to visit me at school. Reading my sister's blog post makes me glad I don't remember.

I think I know why I don't remember.

It was 4th grade, and I had Mrs. King for a teacher. I loved Mrs. King. She was a very nice lady; kind and gentle. You could feel that she cared about each of us.

In Mrs. King's room, in the reading corner, there were these long orange pillows that 2 or 3 kids could lean on at one time. I don't remember anything from 4th grade after a specific moment in time, but I remember those pillows.

Mrs. King stepped out of the room.

I remember that a couple of the boys...I can't remember their names, but I remember their faces...got a little carried away and started swinging those giant orange pillows around in a kind of pillow fight on steroids.

I remember getting a drink at the fountain in the sink.

And then I was sitting in the living room with my grandma playing chess....and we were half-way through the game. I'm told that was three days later. I remember being confused and wondering how I got there, and how I could be playing chess and not know it. With my grandma.

Grandma said to me, "Well! You're back!"

And I remember the headache.

And I remember that I couldn't see very well.

The kids who were there in the classroom at the time later told me that when the boys were playing with the pillows, I stood up from the drinking fountain and turned around just as a pillow came swinging at me. My head hit the concrete floor with a loud "CRACK" sound. One of the girls screamed because she thought I was dead. Mr. Gilbert, who you read about in my sister's blog, ran into the room and carried me, to the nurses office. He ran all the way and he was scared. Mrs. King cried.

I have an excellent memory for lots of things, including small details, but 4th grade is gone; wiped clear from that crack to my head. The crack to my head that damaged my vision ( I would later suffer two more head injuries, each one damaging my vision a little more because apparently there is one part of my head that tends to hit first!) So to, was my memory of Mr. Hoppe damaged. Why did he come to visit me?

After reading my sister's blog post, I'm pretty sure there were other memories lost as well, and I think I'm glad.

Saturday, January 29, 2011

Transfer Imminent

In my previous post, you were able to see for yourself what the word "transfer" means. I mentioned that some of the waiting children listed on Reece's Rainbow have warnings that they're approaching their transfer date, making it CRUCIAL that a family is found soon! Often a child cannot be adopted once they've been transferred. Here are just a few of the children who are in imminent danger right now, or who have ALREADY BEEN TRANSFERRED but are still able to be adopted.

These children have Already been Transferred! Do you see your child here? HURRY! Each day that is spent in the institution is another day for them to loose their will to life. MANY children do not survive more than a few months after transfer, depending upon where they were sent.

(click on the child's name to read his or her full profile)







These children are approaching their next birthday, which means their transfer is IMMINENT! 

Anthony ($6555.69 grant available!)

Artem ($3615.50 Grant available!)

Devon ($1995 Grant Available!)

Daniel ($1000 Grant Available!)

 Colby ($1000 Grant Available!)











Why we advocate

This is a series of videos from a Bulgarian institution, Mogilino, put together in 2007. Thankfully, I think this facility is now closed (if not, the number of residents has been dramatically reduced), and conditions for Bulgarian children with disabilities are changing. But change is a slow process, and it has only been 4 years since the making of this video series. These videos are not for the faint of heart. Do not watch them with young children.

Sadly, these very same conditions still exist in many institutions around Eastern and central Europe. It is this very fate that Reece's Rainbow is working hard to prevent for the waiting children.  When you see "transfer imminent" listed next to a waiting child's name, these are the kind of conditions many are headed for.

Please watch the videos. Don't walk away. The children trapped in these facilities cannot walk away, and they are depending on you, me, and everyone else to get them out. We have to be their voice. Grab a cup of coffee, turn off your facebook notifications, and watch. (if you watch to the end, you'll see the good things that happened to those who were featured.)

Part 1


Part 2


Part 3


Part 4


Part 5


Part 6

Friday, January 28, 2011

Transition update

I decided it's about time to write a post about how the transition is going in general. So lets talk about the areas that are issues, shall we?

Axel is 10, and pretty set in his ways how he does stuff, and not all of those ways are in sync with our house. Most of them have to do with doing whatever the heck he wants, but laughing while he's doing it because surely that laugh is cute and we will let him get by with whatever. Ummm....no. I learned what "the laugh" meant very quickly. Oh, it's an ADORABLE laugh. If you didn't know him you'd think I was the meanest mom in the world when I quickly put a stop to the laugh. That's because you don't know what comes AFTER the laugh! I rarely get "the laugh" anymore, but Dean gets it quite a bit if I leave the house, or he gets brave enough to take Axel out in public.

Yes, I said brave enough. Axel can be quite the little pill when Dean takes him out. Go back and read this post, written after the first day I had Axel. He's not QUITE this naughty for Dean. He's not pulling hair or glasses, but he's not all that far off. Dean hasn't had many opportunities to get out in public with Axel alone to break some of this behavior, but believe me, it's getting arranged now!  He's getting better, and really he doesn't have that far to go. It's just a matter of Dean taking the time to work on it. With me Axel is fantastic about 98% of the time, but I expect that to change a little when he starts school. I expect to see some regression at that point.

When Axel starts school we're going to have to have a behavioral plan as part of his IEP from the beginning, because when we did his assessments last week it was easy to see how quickly he can escalate into total naughtiness! And yes, they are going to be warned about "the laugh"!

There are certain habits Axel has that many 10 year old BOYS have, that...well...when they're done in public places...like the living room...are not really welcome at all! It's clear this is a well established habit, because there is a whole "set up" routine that goes along with it. It took me about 2 days in Serbia to realize exactly what was going on. (Something about his eyes glazing over that gave it away!) I don't know if his foster family just didn't realize what he was actually doing at this time, or if they just chose to not say anything about it. Well, that doesn't fly here very well. There is a time and a place for that, and it's NOT in my living room! This week in particular I've noticed a dramatic decrease in this behavior. THANK YOU GOD!

We are not having any toileting issues anymore. Well, what we had was only minimal to begin with, and really just had to do with Axel wanting control over the situation. Once he realized he didn't have it, that problem went away. He does lie that he has gone to the bathroom when he's sent in. Fortunately he hasn't yet figured out that there is visible evidence in the toilet if he's gone. LOL And, now that we know what his guilty face looks like, it's easy to know when he's done (or not done) something he's supposed to. Even so, I would put this in the category of very age-typical behavior because he does it when he knows after he goes to the bathroom there is a fun thing coming up, like going somewhere in the car.

Like brothers around the world, Axel waits until I'm out of sight to pester his sister. She responds very well to him ("I'm gonna move away Axel!", or "I'm not gonna play with you Axel!" he pushes her too far and she just leaves the area. One of these days he's going to discover what happens when you go to far in pestering someone who is twice your size! But, since he is still new to the family, it's very rare that they're together out of my sight except for times like this morning when I ran out to start the car. As soon as I came back in the door I heard "the laugh" and Angela telling him to stop touching the computer. LOL

So how is Dean doing? I don't know. I'm going to let Dean respond for himself in his blog. (umm...Hello Dean? Did you forget you have a blog?)

How am I doing?

Exactly one month before I left to get Axel, I wrote this post. I have had to go back and re-read that post a time or two to refresh my memory how this all works, and that I'm not crazy. Parenting a child who you do not have a biological connection to is not difficult. It's the "having patience" part that is tough. Patience to wait out those things that are annoying but not truly issues, and acceptance of some things that cannot be changed. Sometimes determining which is which is the hardest part. But we're coming along, and I can honestly say I love this child.

I've found that my expectations for Axel are higher than they are for Angela for some things. It is very hard for me to see that Axel is going to very quickly bypass Angela. In fact, he already has in many areas. It is very hard to not compare them. They are SO different from each other in what motivates them to succeed. They are so different in the rate that they learn. (Axel learned to zip his jacket last weekend after spending 10 minutes showing him. Angela has been working on this for SIX YEARS) This difference has been a push for Angela, making her want to do things independently that she hasn't been able to, or hasn't wanted to until now (like fold all her laundry and put it away) Funny, that's exactly why I wanted one more baby after I had Angela. Funny, God knew we needed to wait and have Axel here instead!

Dean and I are having to make some adjustments that we knew about before we brought Axel home. We were used to having every-other weekend to ourselves when Angela went to her dads. That is gone now. We are now like every other parent who doesn't get a break. We need to find a couple sitters who are willing to come to the house for both kids, or maybe after Axel is in bed for the night since he NEVER EVER EVER gets out of bed once he's in there. (this is one welcomed left-over orphanage behavior!)

All in all, Axel is a very typical little boy. The behavior we're seeing here is VERY typical behavior for a child his age. And when you take into consideration his very typical behavior....well...Axel is a pretty easy kid! He is very easy to redirect, and he responds quickly to redirection. He is soaking up the world as fast as we can expose him to it, and ALL of us are loving watching him experience it.  Life with Axel is good.

Who will follow Sandra?

This is Sandra. Isn't she beautiful?


Sandra is now resting peacefully in the arms of The Father. Sandra couldn't wait for her family any longer. There are so many children just like Sandra who are waiting, who's time is running out!  Do you have room for one more bed in your house? Do you have a spot for one more at your table? Do you have enough love in your heart? Look at all these children who are waiting! 

Beautiful Boy

Thursday, January 27, 2011

She's so quiet!

Angela is. Quiet.

Ok, "quiet" isn't the right word. "Busy", and "self amused" is better. As much as she adores Axel, Angela is pretty set in her ways, and her "way" is to come home from school each day and either watch some TV or hang out in her basement bedroom, reenacting her entire school day (or whatever she just watched on TV.) She can spend HOURS down there, coming up for air only when she's hungry. I think this is pretty typical of teenagers. (the hanging out in the room thing, not the pretend play thing.) But don't worry, I can get her to play with Axel pretty easily.

So yesterday, in the middle of the day, Angela's teacher sent an email out to all the parents about choosing electives for next year, Angela's first year at.the.high.school. She gave several choices and asked us to discuss them with our child, or if we wanted she could talk to the kids about them while they're at school. She needed our responses as soon as possible.

I was just about to send a reply, asking her talk to Angela about her preference between cooking class and a woods class, since she really likes both and the teacher needed our responses ASAP. I was just hitting "send" when I remembered....

Angela was not AT school. She was HERE at HOME, in her basement bedroom where I couldn't hear her! She had stayed home sick and was enjoying the extra time to herself in her basement lair.

I had totally forgotten my kid was here! You are welcome to nominate me for mother of the year now.

Wednesday, January 26, 2011

What can YOU do?



These TEENAGERS get it. They GET IT! THEY understand WHY!

Some of you are able to adopt. What makes you UNable? Money?  Don't let lack of funds stop you. Most of the family I know, including us, started their process with NOTHING to put towards the cost of their adoption. Every step of the way, God put the funds in our hands the day before, or sometimes they VERY day they were needed. I remember sitting in a parking lot with Dean, and him wondering, "HOW are we going to pay for this?" and because we still hadn't decided yet, "HOW can we afford to adopt two?" He didn't understand yet. He didn't understand what God does when you're walking where he tells you to go. He gets it now. DO YOU? Are you ready to step out in faith and DO IT?

There are also plenty of people who can't adopt for whatever reason. Dont feel like you can't do anything. There is plenty you can do! You can support a family who is trying to complete an adoption. Your support doesn't have to be monetary. You can offer childcare, or to care for pets while they travel to get their child. (for our family, it would cost almost $2000 just to board our pets while we travel! It's one of the many reasons Dean stayed home.) Offer to help with a fundraiser, or offer items to use for a fundraiser. There are just so many ways you can support a family who is adopting!

Support doesn't end when the child comes home. Offer a couple frozen meals for when they first come home (when everyone is exhausted and suffering jet lag!) Like parents of a newborn, Newly adoptive families are often isolated for a while as they work on bonding with their new child, before they're comfortable letting the child be cared for by a non-family member. You could offer to get together for an evening coffee or adult beverage. ;-)

There are so many things one can do.  Take a personal inventory. What can YOU do?

What's Axel doing today?

Axel is a sponge. Have I mentioned that already? Seriously, this kid amazes me. He now recognizes about 1/2 of the alphabet, and all the numbers 1-10. He's learning to count (though the signs 6-9 are confusing!) He's working on hard on learning to write his name. Somewhere I have a video of him from a day or so after getting custody of him. He had no idea how to hold a pencil, much less do anything with it. I gave him markers and it was clear he'd never seen them before. Well...look what he does now! He will do this ENTIRE page, only getting help in the "e" cuz they're tricky, those "e's"! (he suddenly needs far more help when the camera comes out. ROFL) Notice how he stays EXACTLY on the line? This boy is neat freak, I tell ya! With his drawing, he has just started making circles on his own, and I'm starting to see the beginnings of faces.


We've also been working on responding to the question, "What's your name?" because he's going to get asked that A LOT in the coming weeks as he starts school. I was THRILLED to find one of our new Signing Time videos has greeting phrases on it! (talk about timing!) Funny, today at the eye doctor no fewer than FIVE people - both children and adults - asked him "What's your name?" When Axel signs it, he usually reverses the order of the words. LOL Still, he's doing it on his own. He needs a TINY bit of help spelling his name. He gets the "A-x", but needs help with the "e-l".

More Dr. Visits

Angela has been home sick this week. Actually, she went to school on Monday and was *fine* when I dropped her off. At about 2:30 her teacher called to let me know she's be coming home sick. When Angela catches a cold it comes on FAST and starts with the worst sneezing you've ever seen. They're actually a combination of sneezes+coughs, and "stuff" goes flying EVERYWHERE! The word "copious" would fit perfectly. UGH! I wonder if it doesn't start as an allergic reaction because her eyes are all watery and itchy, plus the sneezing, and it comes on so fast. She was in bed by 7:00 that night and didn't wake up until 9:30 the next morning! She's home again today, but I think tomorrow she'll be ready for school. Of course, Friday they're off.....sigh.....

Today Axel saw the Pediatric eye specialist. I've been VERY curious about his vision! I couldn't tell if he is having issues or not, except that his eyes are constantly tearing. Clearly his ducts are blocked, but I wondered if some of it was from eye strain.

So the Dr. confirmed that yes his ducts are badly blocked and he'll be getting stents put in when he has his dental work done. (one of the reasons we've held off on the dental work was to get this visit done so we knew if we'd need to combine procedures.) The stents will stay in anywhere from 3-6 months. She did say they have a new kind now that are different from what Angela had. (who, by the way, needs them again!) They're a little easier to manage and not visible, which means they also can't be pulled out by the kids. (Angela pulled hers out at about 6 weeks.) The dr. will know exactly how long they need to stay in based on how much scarring she sees when she puts them in.

His actual vision? FINE! He does have astigmatism, so within about 2 years will probably need glasses for near sightedness, but for now he's all good. Poor Axel, he's DETERMINED to wear glasses. You may see some of my pictures where he is already wearing them. They're an old pair of Angela's with the lenses pulled out. LOL Everyone else in the house wears glasses so he thinks he should too, of course! Here is is brushing Angela's hair (one of his favorite things to do) with "his" glasses on. LOL

Monday, January 24, 2011

Someone's going to heaven!

Someone is going STRAIGHT to heaven, I tell ya! Remember this post?

My doorbell rang a few minutes ago.

FOUR MORE SETS of Signing Time videos! I am beside myself right now.

Axel is absorbing signs SO FAST, and although I sign EVERYTHING to him. (seriously, everything out of my mouth is signed, even if I'm talking to someone else.) there are signs that I try to focus on every day. He is learning so many new concepts right now, and I'm just trying to pump as much into him as I can before he starts school in a few weeks. I can't make up for ten whole years of educational neglect, but I can flood his brain with stimulation in preparation for school. If he at least has the *idea* that some of this stuff has meaning, starting school will be so much easier for him.

Signing Time has helped me do just that! The videos remind me of certain signs or concepts to work on with him. They also reinforce signs that I've already introduced (probably 100 new signs per week that I'm specifically pointing out to him.)

So whoever you are, obviously you don't want to be known. But THANK YOU so much for giving this gift to Axel. You are helping to solidify communication for him, not to mention forming a bond between him and Angela who love to watch the videos together. And, lets not forget the fact your generosity raised $1000 for another family to bring their child home!

Sunday, January 23, 2011

New friends

Subtractive Bilingualism is - to totally paraphrase - the process of loosing a person's first language and learning a second language that becomes the primary language. This is what happens to a child who adopted internationally and must learn a completely new language.

So, Axel has been in my care almost 8 weeks, and hearing nothing but English since he came home 6 weeks ago. We really don't know how much he was hearing of Serbian, but we know he wasn't saying much in the way of Serbian words.

Today we met with our new friends J. and M. who moved here from Serbian 9 years ago. They were very anxious to meet Axel, and we were anxious to see how he would react upon hearing Serbian.

When we arrived, they said hello to him in Serbian, and greeted him with his birth name, Djordje.

He gave NO indication this was familiar to him. NONE.

I was both saddened and fascinated by this. I would think that if he'd been hearing Serbian, he would have given a reaction of familiarity, but he didn't. I think M. was a little disappointed because he was really anxious to to interact with Axel in his native language.

J. had made palachinca. These were my FAVORITE treat while in Serbia! They're like a crepe, and are filled with whatever you want to put in them. J. put chocolate in them. Ohhhhhh delicious! My favorite way to eat them while I was in country was with Nutella on them. When I came home I told Dean I wanted a crepe pan so I could make these, but today J. assured me I can make them without such a thing! (clearly J. doesn't understand my level of culinary ineptitude!)

Also, when I was in Serbia I had bought some stuff called Pavlica. It was used the same way we use butter here. I could never figure out exactly what it was, but it seemed like a blend of sour cream and cream cheese. It was just awesome! I've tried to find places here where I could buy it, but without luck. When I asked J. about it, she reached into her fridge and pulled out Daisy brand sour cream. "This is the closest thing you'll find to it here in the US." I was right that it's sour cream, but our sour cream is more sour than theirs. J. said Daisy brand is VERY close to what they have in Serbia. Guess what I'm gonna go buy tomorrow?

We got to talk about a lot of things. Dean and M. had some guy time in front of the game in the basement, and J. and I talked about more serious things regarding kids in Eastern Europe. She had never seen a child with Down syndrome in their home country. They were thrilled to see Axel thriving and living life!

So that was our fun day with new friends! I can't wait to get together with them again. I have a lot to learn from them, and they such incredibly nice people. Meeting them made me really miss being in Europe.

His Promises - Just over the Horizon

Our driveway is like a roller coaster. You come up a very steep hill and come to a stop at the top where the house sits. As you pull forward, to go down the other side, there are a few feet where you can't see where you're going. You know by keeping the wheels of the car straight that you're on the right path, but you really cannot see. You are driving by faith for those few feet.

In Exodus 14, when Moses told the Children of Israel to step into the red sea, they could not see what was before them. Moses put his arm over the water as directed by God, and the Israelites trusted that as they took each step the sea would be parted further for them to take yet another step. They could not see the ground in which their next step would be placed, but they stepped forward anyway, and found each foot stood upon dry land. They stepped forward...in faith and obedience, and watched the sea become a wall of water on either side of them. And, because they followed the promise of God, they later saw the water come down upon the Egyptians and all their chariots and horsemen. The Egyptians could no longer cause harm or fear. They were annihilated.

That is where I am right now. I am stepping forward. Doing so because God told me to. I cannot see what will be beneath each step but I'm moving forward on the path God put me to back in April. I know that the promises of God wait for us if we follow Him through the wilderness. I know that my Egyptians will be dealt with in a way that only God can orchestrate.

There is change brewing. BIG CHANGE. For ourselves living in this household, and for others. For adoptive families and for waiting children. Change. Step forward.  The way is being cleared before you, just out of your sight. Like the children of Israel, be obedient and you will find your feet placed safely upon dry land. You will cross the wilderness. It will not be easy. Follow His commands for you, and you will find His promises.

I expect to be coming into the wilderness any day now. I will keep my eyes on Him and His promises. I know that the riches waiting for me there are far greater than I can ever imagine.

Saturday, January 22, 2011

Hearing or not

So we've been confused about Axel's hearing tests.

It is no secret that I am every medical specialist's worst nightmare. Why? Because I usually have my kid or myself diagnosed long before we ever walk into their office. I feel sorry for them. Really, I do. I wouldn't want to have to deal with my endless questions.

My current diagnosis for Axel is Auditory Neuropathy. When I asked the first audiologist, who tested Axel with a severe hearing loss, about auditory neuropathy, she said "Absolutely not."

I asked the second audiologist about it. She tested Axel at normal limits. She said, "His OAE tests normal, and that rules out Auditory Neuropathy". Ok, good.

But he still acts like a kid who is deaf...sometimes.... and he still can...sometimes...immitate vowel sounds, and sometimes not. Sometimes he acts a child who is deaf (remember, I've worked with kids who are deaf/hard of hearing for  years!) and other times it's CLEAR he's hearing.

Thursday he had a THIRD hearing test done. Again, he tested within normal limits. The audiologist, who I've known for years and really like, gave me a hard time when I told her he's scheduled for an ABR (under sedation) in a couple of weeks when "it's clearly not necessary. He's hearing." (he's having it done at the same time as his MRI)

Here's the thing: People with auditory neuropathy HEAR sound. They will often pass, or have very near normal hearing on a peripheral hearing test. (like a booth test, or with headphones). The sound gets TO the auditory nerve, and they hear it. But hearing, and hearing CLEAR SPEECH are very different things. With auditory neurapathy, the VIII cranial nerve misfires, and the sound doesn't get from the nerve to the hearing center of the brain.

Well, here's a description of Auditory Neuropathy:

"The most striking finding with auditory neuropathy is that Otoacoustic Emissions (OAEs) are normal. This means that hair cells in the inner ear are working normally."


Here's a video that simulates the different levels of Auditory Neuropathy. If this is what Axel has, based on the sounds he is able to make, and the incosistancy with how he responds to sounds, Dean and I would guess him to be in the moderate range, or the 3rd and 4th examples in the video below.



So there ya have it. My diagnosis. Here's where we're at right now. Call us awful parents, but we're praying that his ABR comes back abnormal! Why? Because than there is a REASON for why his speech...even in Serbian...never developed. It would also qualify him for services in the school that I want him in. If he has a normal ABR, we continue to have a mystery on our hands that is going to be even more difficult to service without concrete information.


We can DO something to help Axel if he has auditory neuropathy. Other than signing, there's not much we can do to help him if he just doesn't understand speech.


Confusing, I know. Welcome to our world.

School assessment

This was a busy week for the kids, but mostly for Axel.

On Weds afternoon Axel had a visit with the cardiologist so he could get cleared for all the stuff he has coming up to get done under anesthesia. Other than an enlarged aorta, his heart is fine. We were told to bring him back again in 2 years, as he's entering puberty, so they can make sure his aorta does not grow disproportionately to the rest of his body. He's cleared for all the other stuff. WOOT WOOT

Since there was no way I was going to make it to my dog class, we raced to meet Dean and Angela at her first floor hockey game. Sadly, the game was cut short when there was a projectile puker who puked all the way across the gym. Poor kid! She has another game next week so we can get a better idea of weather or not she's catching on more than she did last year. Axel, on the other hand, had a great time watching the game! He can track that flying puck without any problems and cheers when a goal is scored. He had fun!

Thursday we started school assessments so we can build Axel's IEP. He really needs to go to school! Flooding him with language is a lot easier when it's more than just the two of us home during the day. And, by the time he starts, he'll have been home for a couple of months.

The first day we saw Special Ed, and the audiologist. ( mentioned the audiologist in my previous post.) They also had an ASL interpreter there since that's how Axel is communicating right now. However, really...because Axel is dealing with subtractive bilingualism, they really should have had a Serbian interpreter there. I'm not too concerned though, because everyone agrees that this assessment is NOT going to be accurate, and is only to 1) give us a baseline of where he's at now (in other words, we know he can AT LEAST do x, y and z, but we don't really know where his skills stop right now.) He did a pretty good job of tuning into to the ASL interpreter though.

The special ed teacher did non-verbal testing with him, and he was pretty cooperative. I was out of the room for most of it, but watching through a window that was behind him so he couldn't see me. Ohhhhh he can be a little turkey! It was interesting to me to see how different he was for them when he decided he was done with what THEY wanted to do, and decided to do what HE wanted to do....like climb up on the table and crawl over it to see what else was in the briefcase, then pretend he didn't understand when they told him "No", or "sit down".

Through the window I told the interpreter than in about 10 seconds his behavior was going to REALLY escalate, and that I was coming in. I walked in, and that boy sat down on his chair so fast, all nice and polite as can be, like he hadn't been on top of the table just a fraction of a second before. They were very interested to see how he snapped back to working when I walked into the room. Hmmmmmmm I told them it's very clear to me that we need to have a behavior plan IN PLACE when he starts school so everyone is on the same page as to how to deal with the behavior I know will be showing up (and I was right. Read on!)

Friday we met with OT, Speech and DAPE (adaptive phy. ed.) Axel tested out of OT, which I knew he would. Although he's going to be FAR behind his peers in his ability to do stuff on paper, it's really just a matter of exposure and opportunity, not weakness in his hands. I'll be interested to see if they qualify him for OT based on that. But really, he did EVERYTHING the OT had him do, including button/unbutton (large chunky buttons), zip, snap, put puzzle pieces in, trace lines, etc. (and today at home he zipped his jacket for the first time!!!)

Next he saw speech. I was not in the room for this, but Dean was, and he wasn't impressed. The ST (speech therapist) kept asking him things like, "Point to the cat". Well, he doesn't know what a cat is, and asking him to point to the cat isn't testing his speech, but testing his receptive language, and he's never seen the sign "cat" except for a couple of times. HELLO! This is where testing him in his NATIVE language is important...if he had a native language. I came when they were done, and she said he'd attempted to approximate the word "in". Later Dean said, "No he did NOT! I told her that's a sound he makes for EVERYTHING, it just so happens you said a word that sounds a lot like the sound he makes!" So..yeah...whatever. You know, there are some people I really like, and some I don't. I can say without a doubt I would NOt want this person working with Axel because she will have NO CLUE how to handle him when he starts acting up, and what she SAYS he does cannot be trusted as truth because Dean was sitting right there and NOT agreeing with what she said Axel did for her.

Next came DAPE. (adaptive PE) to do a gross motor assessment. He did everything on the assessment with the exception of run. Axel's "run" doesn't really qualify as such. LOL He spent his first 7 1/2 years in institutions and was never given an opportunity to run there. (really, he was never out of a CRIB much there!) Then he was moved to the foster home, but by then it was late for developing gross motor skills. I know he occasionally played with a neighbor boy, and with the granddaughter, but I don't know what KIND of play they did. His run is kind of a combination between a gallop and a hop. I told the special ed teacher to watch closely because when he's "running", it very quickly turns into "stimming". The very first time he ran across the gym she said, "Oh wow! It's almost like you can see a switch flip!" And it is, just like watching a switch flip. I can't even begin to describe the stimming, other than it's an arm flapping, head spinning, eyes crossing thing.

He was able to hop over a line, hop over a small cone, side-step along a LONG line...and back again....hit a ball off a tee, throw and catch a small ball. He was not quite able to dribble, but you can see with some exposure he'd be able to. He sure tried hard! I hated having to pull him out of the gym. His opportunities to run and play are so limited right now being at home in the dead of winter. I've been trying to get him to the Y whenever possible, but the gym is always busy! The weekends we can usually get him there though.

We'll have a meeting sometime in the next week and a half or so to go over all the reports from the various specialists, and decide what the most appropriate placement is for Axel. (although I'm going to hold out on making any decisions until his ABR is done on the 3rd) This is where I have a really hard time because ***sometimes*** I get my mind made up about what's best for my kid and it's hard to agree with anyone on anything if it doesn't agree with what I've already decided is best. You know what they say about admitting when you have a problem.....

Thursday, January 20, 2011

I wish I knew others

I wish I knew others who had brought home older kids who had Down syndrome.

Axel tries VERY hard to talk. I mean, he focuses on my mouth and tries SO HARD to immitate the single vowel sound I'm making, and you can see the tiny little muscles around his lips quivering, and out comes not even a close approximation.

And then other days he immitates both consonant and vowel sounds in isolation pretty well.

But putting it all together for speech is just not happening. Today we started his school assessments and they're all like, "But he's only been hearing English for 7 1/2 weeks. Give him time!" But they haven't seen kids with DS who are adopted before. They don't know what happens when the child stops hearing their native language, and how QUICKLY they learn the new one. (it is amazingly quick!)

So yeah, he's only been home a short time, that theory is true to a point,  but I've also seen other kids repeating more words. They can at least repeat them, even if they don't know the meaning. Axel is not able to even repeat them. Even first words, like "shoe", or "more", or "eat". He is not able to say ANY of those words. Well....really by two months out from adoption his native language should be GONE from most of his memory. There is usually a period of time where there is almost no language, then by 3 months or so their new spoken language STARTS to take off. (though it can still be years before they are fluent.)

He also wasn't speaking Serbian either. I'm told he only had a handful of words, and those were only rarely understandable to people outside the family.

Today his hearing was tested again, and again he tested in normal limits.

I'm so confused. I don't get it. What does apraxia look like? Years ago I worked with a student (46 chromosomes) who had severe apraxia and has ZERO speech at 6 years old. She was like Axel, picking up signs very fast. I worked with her during summer school to help increase her sign vocabulary.

Axel seems to learn signs just as fast. Show him one today, and he'll remember it forever. (he may not produce it, but he remembers what it means and understands it receptively) But teach him how to say, "mama" today, and it's gone two hours later.

What does auditory neuropathy look like?

Axel DOES have six words he can say. "Thankyou" (gang kooooooo) "bye", "hi" (Haaaaa ee), "pee", "no"(prounounced  "ngo") "down" (pronounced "gown")

I'm having a really hard time with this and I don't know why. If he had a hearing loss, it wouldn't bother me because there is a reason. But without a hearing loss....well....now what?

The other problem is the school district. If he had a hearing loss, it's MUCH easier for me to push for the placement I want for him that will help him increase his sign vocabulary and language skills. But without a documented hearing loss, he'll be limited to a classroom aid who knows some signs. Yeah...Axel will be bypassing that person VERY fast, making that type of service very limiting for him.

I did get the name of a SLP who specializes in processing disorders. I'm going to call him tomorrow and see if he can do an assessment.

I just don't know what to do with this. I really, really don't. My gut says there is more going on but we can't find it. It is hard to get services for something you can't find, especially when they're saying, "give it more time."

Wednesday, January 19, 2011

And the Winner Is.......

Ok, I know you've all been waiting and waiting for me today! To say today was crazy would be an understatement. LOL Anyway, here's Axel, picking the winner!

Tuesday, January 18, 2011

Got Lice?

No, we do not have lice, thank you very much! But tonight on Dirtiest Jobs, they were filming a company that does head lice removal.

No, really. That's all the do.

So then my friend Susan sent me a link to a The Minnesota Lice Lady. So, if you're ever finding your household dealing with these nasty critters, google around in your area to see if there is a Lice Lady near you!

I have to go scratch now.

By Axel: Cooking with Papa

Papa said, "Axel, come in the kitchen. We're going to cook." Oh, I was so excited. I love to help in the kitchen. This is big business, I better roll up my sleeves. 

 I watched Papa crack some eggs, then he let me put them back in the fridge. (Mama closed her eyes.) See that dog? Her name is Zurri, and she follows me everywhere. I like her a lot!


Next we had to stir. Stirring is a lot of work! 

Papa poured some stuff into the bowl. 

Thanks for helping Papa!

Hey Angela! I'm cooking in here!!! 

Ooh, you're a good stirrer too Angela. 

Enough of the sharing business. I'm ready to have a turn again. 

No really, it should be my turn by now. 

Oh Papa, I sure love you! Can I have a turn now? (this is called "sucking up")

Checking to make sure Papa is doing it right.

Angela had something important to say to Mama. 

I sure love my big sister! I'm pretty sure she loves me too. 

It's De-Lurking Day!


Ok, really National De-Lurking Day was last week, but I totally missed it somehow. Here's your chance to come out of the woodwork and introduce yourselves in the BLOG comments. (facebook comments is kinda cheating. LOL)

How's Your state Doing?

The National Center for Learning Disabilities has issued their annual Special Education scorecards for every state in the nation.

Do you want to know how your state is doing? Go check it out!

Now, it takes a long time for the NCLD to compile all the results, so these are the 2009 totals. 2010 won't be out until January 2012. You can also see how your state did compared to previous years.  I'm in Minnesota. Thankfully for 2009 Minnesota "Meets the Requirments", but I'm sure there are areas that need improvement since it's not a perfect world.

Hows your state doing?

Monday, January 17, 2011

Shoveling Snow

Last night we got just a couple inches of new snow, but it was enough for Dean to snowblow the driveway. When he was just about done I sent Angela and Axel out to play with Papa. Well, they got put to work! LOL They both had a blast shoveling the snow from around the cars.

It was a lot of fun watching them learn when, where and HOW to thow the snow over the snow bank. There were a couple times when it landed on their head instead of over the hill. LOL Enjoy the pics! *note* there are far more of Axel than Angela because she did NOT want her picture taken, she just wanted to "do my work" and not be bothered by a mom with a camera. LOL Oh, and you gotta love Axel's tongue! Look close at where the snow is in some of the pictures. You can see it's not gonna end well!