Blogging about life in Minnesota, raising our five 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!"

Saturday, April 30, 2011

The Toothbrush Bomber

I'm here! Oh man, did it feel good to get off that last plane knowing I was going to be outside, breathing fresh air any minute! Little did I know that "minute" would be a bit delayed.

The day was full of "You've got to be kidding me God!" moments. Like my flight from Minneapolis to DC, and the person I sat next to. You see, for Axel's upcoming surgery, his surgeon planned on using a synthetic product called BMP in Axel's neck instead of taking a bone graft from his hip like they do with the younger kids. But BMP  has been in the news recently, and after doing what research I could about it, I'd asked his surgeon so specific questions, which he answered, but I was still feeling uneasy about it.

Until yesterday. (was it yesterday? I don't know what day I'm on. That flight was on Friday LOL)  Anyway, the man I sat next to was really nice. He and I spent the entire 2 hr flight talking about our families. He has two boys, and of course I used to have a houseful of them at home. I  had shared about Axel, and the upcoming surgery, and about our dilemma over the product that was going to be used in Axel's neck. All during this conversation, the man didn't share WHY he'd been in Minneapolis, just that it has been a business related trip. Finally, about 20 minutes before we landed, I asked, "So what exactly do you do for business that brought you to Mnpls?"

He's an attorney for Medtronic, the company that produces the product going in Axel's neck. He gave me a lot of information (at least what he was able to share due to legal issues ) about the stuff that's been happening with the FDA investigations surrounding BMP. "Don't let them put that product in your child's body." he said. Although the FDA hasn't pulled it from the market for cervical spine repairs, he said it won't be long before it is. Now he's not a malpractice attorney, he is defending the company who PRODUCES the product.

I ended up emailing Axel's surgeon somewhere on the trip and told him abou the conversation, and that based on that plus what I'd read a month or so ago, NO, we do not want that product put inside our child. I did get an email back from him saying he's comfortable with our decision since it is an informed one. This means Axel's surgery will have a different component to the healing process (he'll have to heal from hip surgery at the same time as the neck stuff) but that's how the little kids are done so I'm confident all will be well.

One flight down, two more to go. In DC I met up with Kaci, Rochelle and Lisa. (The rest of the team will follow on Tuesday) Kaci ended up on a different flight from the rest of us so she had a much longer day that we did! The three of us arrived at 1:30 yesterday afternoon, but Kaci didn't arrive in Belgrade until 11:30 last night. It is an exhausting trip when everything goes 100% according to plan. Throw in surprises and by the time you get here, you're shot!

At the Frankfurt airport we waited forever to go through security. Rochelle managed to get into a different line and zipped right through while Lisa and I stood...and stood...and stood in line. FINALLY we were allowed to go through. Germany's security thingy really doesn't like all the hardware in my wrist and always sets off bells and whistles, resulting in a *very* thorough pat-down. Boots off to be xrayed independently, etc. I consider it a little bonus entertainment (unless I'm late, like I was when bringing Axel through! With him they brought the talking photo album into the bomb room for inspection! LOL)

Finally they let me pass, but then I had to get my bags that had gone through x-ray. Lisa had tried putting my stuff together for me to save some time, but the liked my computer backpack a little to much. This very gruff german woman made me start taking things out. "You have scissors in there." she said. "I DO???? Really???? I started digging and couldn't find them, but could see them on the xray picture. Here they had slipped into a pocket. "OH! My good hair scissors!" I said. "I have NO idea why they are in here."  And I didn't! She said, without a hint of humor in her face, "Next time you loose something, come here and I will find it for you."

Ok then!

So our flight arrived right on time, never having any delays. We waited for our bags to come out at baggage claim and my big giant green duffle was the very.last.one, and was wrapped with tape saying "security" all over it. Hmmmmm  I'm thinking the fact that the thing was flashing inside from all the toothbrushes, visible through the zippers,  might have been an issue?

It was no surprise that I was stopped and asked to open the bag. The toothbrushes....all 380+ were examined one by one. Who was I bringing them to? WHY were they flashing? Didn't I know these would have to go through "sanitation control" because they're going to children? I had to fill out forms, and the toothbrushes were boxed up and sealed inside. We can pick them up on Tuesday.

Ok then!

Mary from COCI picked me up, then another friend of hers, and we went to eat, then grocery shop. After sitting in LOTS of traffic we arrived back here for the evening about 7:30-8:00. By that time my eyes were rolling in my head as I tried to carry on a conversation with Mary in the car. I took a quick shower, skyped with Dean and the kids, and headed to bed. I think I was asleep before my head hit the pillow. That was 31 hours awake, for anyone who's counting. I did sleep on the 90 minute flight from Frankfurt to Belgrade, but I'm not sure that quality counts. LOL

So now you know I'm here, and alive. It's 4:30 a.m. and I'm ready to go back to bed for a bit. It's almost 5:00 a.m. and I'd like to get a couple more hours sleep. It's going to be a GREAT day!!!!

Friday, April 29, 2011

First step

Traveling internationally holds for me a level of anxiety that is far different than if I fly to...say...Floriday. I mean, the plane is going to be going over water. A LOT of water. For many hours. That's where my anxiety starts, and though I try to keep it to myself (because it's silly, really. Right?) I still start having dreams about about my car going into a lake underwater, etc.

Then of course there is the whole "preparing everything for Dean to manage the house alone" part of the preparation. What did I forget? WHO KNOWS!

But this trip has been different. Last night when I said goodnight to Angela, as I reminded her that today would be different. That when she comes home from school I'll be on an airplane. As I talk to her, and kissed her goodnight, the smell of her hair struck me. A little shampoo, some conditioner that didn't quite all get rinsed out, and her. I sniffed long and hard, trying to memorize that smell. She is amazing, this daughter of mine.

With Angela drifting off to sleep, I went upstairs to put some more things I'd almost forgotten about in the suitcase. And then I remembered something. An emergency document for Dean that needed to be signed an notarized before I left, and in Dean's hands....just in case.

This morning going through the morning routine was tense. Dean was feeling stressed, I was worried about what I'd forgotten, etc. Then I remembered, "Dean, in this file, in this manilla envelope marked "Axel's Documents" are all of Axel's adoption documents, just in case you should need them. And in this file, directly in front of it, are things you might need for Angela.

I was feeling like I was saying goodbye to everyone like I wasn't coming back. I can't tell you how many times I cried. Even one hard, ugly cry.

I recognized it for what it was. An attack from Satan. You see, he knows that big things are going to happen for God on this trip, and he isn't happy! On the drive to the airport, Kaci called me to say she'd had a rough morning. All the exact same feelings and thoughts going through her mind. Satan at work. Making us worry and fret. "Back out now while you still can!" he's screaming. Sorry Satan, we have work to do, and we're doing it. My time will come when God says it's time. Today, tomorrow, or 40 years from now. But right now, my eyes are on God and his directive.

Now, I'm going to board my plane for DC. Life is good. God is better!

Thursday, April 28, 2011

Flickering

My carry-on is flickering. It's all those Firefly toothbrushes in there, and I swear they feed off one another. And so, my carry-on flickers. I can't wait to see what the TSA has to say about THAT!

I'm just about done packing. I've had a horrid migraine all day, making it very difficult to think clearly about all the things I need to remember.

It's going to be a big week. I'm ready. I'm also ready to have it done and just get home so I can focus on Axel's surgery just a few days later.

Wednesday, April 27, 2011

Got a Phone Call yesterday

This post is a diversion for myself from the fact I'm supposed to be getting ready to leave the country.

So anyway, yesterday I got a phone call. This also happened four years ago, only it was a letter in our mailbox. The first time it happened, I opened our mailbox to find an envelope with a familiar logo. I figured it was for a fundraiser. I opened it to read, "Your child Angela has been referred to our organization...."

I was in shock, and didn't understand why the referral. No, that's not true. I did understand it, but it was a slap in the face, bringing to life the reality that was before us. I just wasn't prepared for the meaning behind it. The meaning is still with us. Pictures are deceiving you know.

This time, the phone call was about Axel, and this time I was prepared.

Legislative Action Alert!

PACER, the Parent Advocacy Center for Educational Rights has issued a Legislative Action Alert for Minnesota. If you're a Minnesota parent of a child who receives Special Education services, or is on an IEP, you need to read this!

Please GO HERE to open it in your browser. 

Two More Days!

There are just two more days to enter to win a $100 gift certificate to Dicks sporting goods. Go here for more details.

There are just two more days before I leave for Serbia. I'm excited and nervous, and clearly not getting my "to do" list done! LOL

The Girl

This blog has been seriously lacking on pictures and stories about Angela. Part of that is because, as she makes sure to remind me on a daily basis, she's going to be in high school next year, and this is a public blog. I know there are people from her school here and so I've decided to scale the Angela information back a bit. You know...privacy and stuff. She's turning 15 in a few weeks. Can you believe it? (she reminds me of this every day too. LOL)

But she was looking particularly cute this morning, and as she headed to the bus I asked if I could get a couple pictures of her. She wasn't happy. You know, she had a bus to catch in 15 minutes and God forbid I interrupt her walk down the driveway. Still, she blessed me with her smiles and jokes, and the many faces of Angela. Love this girl!

(click on the pictures to open them individually, because blogger is making them blurry.)






Tuesday, April 26, 2011

One Year Ago

One year ago, on April 7th, 2010, I met you. You changed my life, and then you changed Dean's heart. We have not forgotten you.  Just as we could never forget a child we gave birth to, we will never forget you. You are the child of our hearts. Every.single.day we talk about you. "What if....?", and "Wouldn't it be amazing if....?" and yes, even, "Why did God....?" "Why hasn't God....?" and, "If only God....".

Through tears we beg, "Please God...please."

Helping Mama Pack

I have two days left to pack. So much to do, so little time. There are just too many things happening at once right now. I'm not complaining. Just stating a fact. LOL

One of the many projects is getting this 380 toothbrushes out of the packaging they came it. This looked like a GREAT job for Axel, and I was right. I asked Angela if she wanted to help, but she was too busy "Having a concert." in the basement. Fine then! Axel can earn a couple bucks!

Mom! There are A LOT of toothbrushes to be unwrapped and separated!



First, take off the cellophane wrapper



Individually inspect every.single.toothbrush. This was not in the instructions, but Axel is all about Quality Control. LOL

Then each toothbrush goes in the bag. There were three grocery bags full.

 

 These are the plastic skeleton packaging thingies. They make for great stacking. And...umm...no OCD in this house. Nope, none at all. ;-)

Sunday, April 24, 2011

Ch-ch-ch-changes!

Easter. Today HE is Risen! Today we celebrated many things.

We celebrated Axel's first Easter with our family on Saturday. What would Easter be without coloring eggs? And putting stickers on them. LOL




It wouldn't be easter without stopping to get some pictures of this styl'in dude who's been hanging out at our house!





He even blessed us with his presence as we headed to celebrate Christ's rising with Dean's family.

This is little Earl. He is a hoot! I couldn't resist getting a picture of all his new teeth.

Beautiful Hazel. She's Earl's big sister and I'm pretty sure he already weighs more than she does. She came up to me in her quiet Hazel voice and asked me if I'd take her picture. 

Jameson. He's one busy little guy who keeps us all in stitches. 

Bridget, who loves to spend time with all the little cousins. They adore her! 

Hazel and Jameson had a screaming contest. It lasted f.o.r.e.v.e.r. and I'm pretty sure my ears lost a few hair cells. Good thing we were outside!

This is our newest addition Keagan, little sister to Jameson. She looks much older than her 2 1/2 months!

Axel loving on Dean's brother Dan.


No, there are no pictures of Angela at Easter. She spent the weekend with her dad, and she was very much missed at our family gathering. 

Today was spent at church, then getting a lot of yard work done! It was our first nice day in A.G.E.S. and it felt good to be outside. Axel spent the first half of the afternoon helping Dean and Tyler clean up all the big limbs that fell during a windstorm early in December. Then while they were splitting logs  and I was raking, Axel kicked a ball around the yard. He also climbed up the ladder on the playset for the first time! He was NOT happy about this at first, and he screamed and cried the entire way. Axel is NOT comfortable with heights. In fact, a 4 inch curb makes him pretty nervous. But today he conquered the climber anyway. He even slid down the slide (with me holding his hand, of course, since I'm pretty worried about his neck.) He got to burn off a lot of steam today, and at bedtime he was sleeping peacefully in just a few minutes.

We are so thankful to the new beginnings the Lord has given us this year. 

Saturday, April 23, 2011

You want me to do what? Where?

Thursday was an interesting day. Axel and I spent it running around. I started the morning bright and
early at 7:30 with Angela's transition meeting. As in, transition to high school. I'm not sure when she got old enough for high school, but she is. Wow. This is very scary to me. Fortunately Dean was able to hang out at home with Axel for just a bit so Axel didn't have to come along to the meeting. Angela was pretty funny during the meeting, but it lasted longer than she did so I told her she could go to her class. I think she was thankful to get out of there and back to her friends!

Next up was Axel's clinic appointment. He needed to get some blood work done so that Shriners can order blood products for his surgery. Blood products. For surgery. For our son.

Have I mentioned before that there are about 5 variations of Axel's birth name, "Djordje" floating around? This has caused countless problems! It all goes back to translation issues between Cyrillic, Latin and English. I cannot wait to get his re-adoption done and be rid of the problem. Then his name will be Axel Djordje Spring, but we can just use "D" when needing to put down his full name for something!

Back to the pre-op blood work. Axel did not shed a single tear when he got poked! Three months ago it took three people to hold him, and this time I had my hand on his arm but wasn't really holding it.  I was so very proud of him!

Then the nurse said they need a urine sample.

Oh, this should be fun times! Axel is already scared to death of public bathrooms, and now I need to get him to pee in a cup? LOVELY! Oh, and clean "him" off too. Yeah, not gonna go over very well. Axel's eyes were about as big as saucers when I came at him with the little wipe thingy. I asked the nurse if we could use the hat in the toilet instead, knowing Axel will always pee sitting down. Yeah, only Axel wasn't really happy THAT was in the toilet, thank you very much! He told me, "I'm done" about 10 times, and wasn't very pleased with the fact I kept saying, "No you're not. You have to pee." So then he threatened to cry. UGh! This is a new behavior since starting school. He gives a couple huffy breaths, with the fakest whine ever behind it. "Sorry buddy, not buying it." That was quickly followed by real tears. (His, not mine.) Oh good grief...so not worth it...I finally told the nurse I'd get a sample at home and bring it back the next morning. I grabbed a cup and a handful of those wipe thingies, and off we went.

So we get home and I gave Axel a bottle of flavored water with a straw, knowing he can suck down the whole bottle in a matter of seconds. I waited about 1/2 hour then had him try the bathroom again, only we don't have one of those hat thingies so he was going to need to go standing up so I could catch the pee. Visualize Axel, wide eyed, as he stood at the toilet with me standing within reach with the cup. Yeah....still  not peeing for me.

I waited another hour and we tried again. Still nothing. Only big giant eyes that said, "You are crazy lady! Whatever it this strange thing is you're doing, I want no part of it!" I went online and tried to find google images of someone peeing in a cup. Note to self...some things should not be googled!

I gave him another bottle of water, then needed to run an errand with Angela. I left the supplies out so Dean could take care of this task if Axel decided he needed to go while I was gone. I think Dean's eyes were as bit as Axels! Seriously? Why is this the mom job?

Half our later we're home and it's time to try again. By now it's 6:30 p.m. and not only has Axel not peed since 9:00 a.m. but he's had two bottles of water! SURELY he will need to go. I went through the motions again of cleaning him, and setting up the supplies. I knelt down by the toilet and Axel had the look on his face that said he really needed to go. AND HE DID! Like a fire hose out of control! He starts giving me directions, which involves signing, which means letting to of important parts. Yeah, there was pee going everywhere, with me trying to catch it "mid stream" like the directions said. I might have screamed a little bit, "Axel! Ack!" which caused him to start crying, which caused increased pressure to the unmanned fire hose!!!! Which freaked him...and me...out even MORE!

In the end I got the urine sample, Axel got relief, and I got to clean the bathroom. Pre-op labs? Check!

Thursday, April 21, 2011

Getting Closer!

Ok, so I leave on my trip in 8 days. Do you know what that means? It means I'm no longer sleeping. Nope, too many things to do! Here's my "have I forgotten anything?" list:

 Laundry: I must get every stitch of laundry done before I leave. When I come home I will have only four days before we all leave for Philly for Axel's surgery. I'm pretty sure I will spend those four days sleeping or something. I really don't want them filled with laundry. And yet, I will need to do my laundry. Where the is the laundry fairy when you need her? Actually, I've heard one may show up here. Just in case she does, well our laundry room is a death trap so I need to do some major cleaning in there before I leave!

Meds: Must remember to put Angela's meds in the dispenser, and get some of them refilled. Others will come due while I'm gone. This is a problem. And our insurance doesn't allow for automatic refills, so someone has to call for them. That would be Dean. This is another problem.

Alterations: Bring a couple pairs of new slacks to the tailor. I have gained 10 lbs since I bought them 2 weeks ago. Lovely.

Blood: Axel needs blood work done so blood products can be ordered for surgery. This freaked me out when I heard about it yesterday. The whole "he needs blood products" thing. Getting it done tomorrow. Oh, and really nice that we have at least 5 different spellings of his name floating around. It was a translation issue. This is a problem. A major problem when getting blood products is concerned.

Pre Op Exam: Two days after I come home is Axel's pre-op exam. It's on the calendar, so I *shouldn't* forget about it. There is jetlag to consider. LOL

Paperwork: I have a bunch of county paperwork for Axel that needs to be turned in before I leave, but in order to do so I have to gather other paperwork. Procrastination has not been my friend. Who gave me that gene, anyway?

Dogs: Three dogs need to be groomed. I don't have time to do this, nor will I when I get home. They MUST be done, or they will be matted messes with our muddy wet weather.

Dogs 2: Check in with dog sitter for Philly trip and make sure she's still coming! That would be a big problem!

Packing: I have to pack. I went shopping twice. On Monday I laid all my stuff out on the bed so I could take inventory. HA! Everything I bought was BLACK except or a couple of things! NICE! Oh, and I have no shorts. I need to go get shorts.

Unpacking: I need to unpack 350 toothbrushes out of what they came in and into what I'm taking to Serbia. Much less bulky and a lot less weight in my checked bag. I think I just found a job for Angela and Axel.

Unpacking: When I get home I will need to unpack me, do my laundry, then repack ALL of us for Philly. Thinking of this makes my blood pressure rise. I think it goes back to the laundry thing.

Bills: Oh yeah, I should pay the bills before I leave. Dean gets crabby when the cable gets shut off. So does Angela. Axel couldn't care less.

Transition: Tomorrow is Angela's transition to high school meeting. I will try to pay attention.

Axel's meeting: Sometime in the four days I'm home in May we have to squeeze in a meeting for Axel to get a plan for his home-bound services. Didn't I just say I'm going to sleep for four days? GAH!

Lipo: I need to squeeze in time to have liposuction done before I go. Ok...that probably won't happen.

In September I go back to school full time. That is so much easier.

Tuesday, April 19, 2011

Attention

 Angela is queen of what is commonly known as "attention seeking behavior". You've all seen this in your own child. Your toddler sits in a high chair at mealtime, and drops the spoon onto the floor. You know, the "Drop game"? It starts out as a cause and effect thing, "I can drop this and mommy picks it up! How fun!" Probably one of the most annoying games a toddler plays, I think. But somewhere a long the way, a switch flips. The family is talking away at dinner, the toddler feels left out....drop goes the spoon. That's the toddler way of saying, "Hello! I'm over here and I like to be part of the conversation too!"

That is "attention seeking behavior." As a child gets older, this behavior becomes more sophisticated. How many of you have children who fake cry in an attempt to get what they want? What about whining? (surely none of your children whine, I'm sure!" Yep, those are attention seeking behaviors. 

Axel does a lot of attention seeking stuff. We have it pretty much nipped in the bud at home, but school is another story, and they're falling for it. I'm a bit surprised that school staff doesn't have a better handle how to deal with some of this stuff. I mean, a lot of it is basic...if you understand attention seeking behavior!

Today was school picture day, and I realized after Axel left that not only did I not send the paper, but he was wearing a shirt that wouldn't work well, AND I wanted the picture without his brace and school is a little leery of taking it of. (understandably so!) So, I went to school, arriving just as Axel's bus arrived there with him. 

Oh, how interesting to watch from the parking lot, when neither staff NOR Axel know that I'm there. Axel is a little *%$# at school! It is taking TWO adults to get him off the bus and into school! HUH???? Let me describe it for you, and then I'll go back and tell you where the problems are.

There are 6 or 7 kids getting off the bus, and four aids to help them. Axel is the last one off. TWO aids are right there to take each hand. As they walk into school Axel does the flop and drop, starts kicking staff, and refusing to walk. Now they each have one hand and another on his bus harness, using that to hand onto him. Axel is laughing hysterically at all of this.  He screams, he kicks, he laughs, he sits. Whatever he can think of. It's like wrestling a spider monkey. This battle lasts all the way into the building, down the hall, and into his classroom. It's a fairly long walk!

I was shocked to see this today, because he would never even consider doing this for me. He would get off the bus nicely and walk into school independently like any other 10 year old. 

Ok, so let's go back. School has 2 staff walking him in. This is completely understandable because one person cannot wrestle him, at least not in a way that's legal for school to do so. Axel has successfully comandeered the attention of two adults. With their hands all over him. HEAVEN for  him!

If staff were to take the hand-holding out of the equation, he would not be able to do the pulling, kicking and flop-n-drop that he does. They would remove the FUN! Axel WANTS to go into the building and be with friends.  If they stood with him RIGHT THERE until he stood up and walked on his own, they would solve the problem. If it's pouring down rain, or not otherwise pleasant outside, he's not going to want to stay. 

Now, there are risks with this tactic. He could bolt. Fortunately Axel does not run fast at all, so getting hold of him is easy. I would be plopping him down on his butt, right there in the sidewalk and not going any further until he told me he was ready to walk nice. They could, as soon as he gets off the bus,  give him a job, "Oh, Axel, can you carry this big heavy thing into school for me?" (it could be a playground cone or something fun that he doesn't usually get to mess with) which would very quickly take his mind off the fact he wanted to spice up the walk into school. This gives them the opportunity to PRAISE the good behavior, "Wow, you're such a big help. Thank you for helping me get this into school. Look how nice you're walking into school, what a big boy!" etc. 

Today one of his aids said to me that they take a lot of breaks to walk around school. HUH? Breaks from WHAT? The expectations for him in class are minimal at best, and he has a very normal (if not better than average) attention span for a 10 year old!!!  He doesn't need a "break" from his class. What HAS happened is he has quickly learned when he starts pulling stuff he can get out of the room....and all expectations. 

I have to say, so far Axel's behaviors have been much easier for us to deal with than Angela's were at the same age. This is mostly due to the fact Angela's behaviors have a neurological component (post stroke/brain injury and seizures) which means some of her behavior served no function. Axel's behaviors have true function: Attention seeking, avoidance of tasks or situations, or finding ways to control his environment. When you can find the function of the behavior, you can address the function, ultimately decreasing or eliminating the behavior. It took us several years and help from an amazing in-home behavioral staff, to figure out what was going on with Angela. It wasn't until the seizures I'd been suspecting for years were finally diagnosed that we were able to get a handle on things. She still gives us a run for our money on occasion, but fortunately for all of us, those are few and far between. Axel's behaviors are much more black and white, but if you're not familiar with "functional behavior" and how it works, it can be hard to see what's happening when you're in the heat of the moment with a child who is acting out.


Sunday, April 17, 2011

Tiergartenstrasse 4

On my heart today.....
Cemetary at Hadamar Killing Center


Tiergartenstrasse 4, also known as "T4", was Hitler's solution to ridding society of those "unworthy of life", "useless eaters".  Those with defective genes which caused, among a long list of diagnoses, such things as mental illness, cerebral palsy, and Down syndrome.

Most of us are familiar with these actions taken during Hitler's reign, but many are not familiar with WHERE these things happened. The entire Balkan region including Serbia (formerly Yugoslavia), Ukraine, Lithuania, Latvia, Estonia, etc.,  was included in these murderous acts.

During T4, the "useless eaters" were housed in institutions, hidden away from society. During Hitler's reign, nearly 200,000 people who fit Hitler's description were murdered either by gas or lethal injection. Stalin also took part in genocide, including warehousing and starving to death those with any visible or diagnosable disability. He was a "pitiless mass murderer", according to Norman M. Naimark.

It is this history, what Stalin and Hitler left behind, that causes the same warehousing of those with disabilities in the Balkans that we see today. These ideologies are deep seated in the lawmakers of today. Oppression can take centuries to overcome, and the oppression of Eastern Europe is very recent. Heck, it hasn't even ended in some areas!

I think these are important things to remember about the region. When I go into orphanages and institutions, I try my very best to keep my emotions in check, and remember some of the staff who is working in these facilities has been taught that this is how "these" are treated. Not all facilities are this way. There are some managed by directors who are forward thinking, where staff is trained in therapy techniques, and genuine caring for the residents is seen.

In the coming weeks I will be in several facilities. The level of care received by the residents will vary greatly. Some good, some very bad. Lord, you alone have lead me here for a reason. I stand in awe of you. I ask you to please protect my heart. Let the memories of what I see, the very memories that will sear deep wounds in my spirit, let them serve a purpose for your greater good. Open my heart to those who are most offensive to me; show me how to pray for them. Let me not forget. Give me the strength to share my experiences with wisdom and understanding.  Give me the words to paint a picture of both the horror and the beauty. For there is beauty. Let me find it.

Saturday, April 16, 2011

So, how's school going?

Axel just finished his third week of school. I don't know weather I'm more excited for him getting to go to school, finally, at 10 years old, or frustrated because of the school situation. Are you ready for an earful?

From reading my previous posts about Axel's first day of school where I went along with him, to his first day by himself, you know the transition was interesting, to say the least! I have had to go to school a few times, where I magically appear around a corner just when he happens to be acting up. It is very difficult to keep my "mad Mom face" on during these moments, because his eyes turn big as saucers, as if to say, "Where did SHE come from???" He instantly snaps into angel child mode like someone flipped a light switch. I wish I could get a video of it, cuz it's hilarious!

But Axel can't be blamed for all of the behavior problems. I KNOW he is very frustrated because he cannot communicate with the staff, and staff cannot communicate with him. Why? Because Axel's communication is 100% ASL. This is *just* a DCD class, and the staff doesn't even know basic sign. The child should not have to teach the staff! In their defense, this is not the fault of the staff. The problem is this is not an appropriate placement for Axel.

First of all, while Axel clearly has cognitive delays, they are mostly due to him never having been exposed to a learning environment, so nobody is really sure *exactly* where the cognitive delays lie. Even with the cognitive delays, Axel's primary diagnosis is Language impairment. He'd never been given a method of communication until joining our family, and while his communication is growing by leaps and bounds, without a FULL language he can't catch up cognitively.

The first two days when I went to school with Axel was like a slap in the face. I knew he was expanding his sign vocabulary exponentially every day, but I didn't realize until seeing him in a classroom full of people who could not communicate with him just how far he'd come. Here are my observations from his first two days in school. Keep in mind this was the first time the classroom staff had ever met him, and most kids who are in the DCD setting do not depend on sign and visual receptive communication anywhere near as much as he does. Why? Because Axel functions very much like a child who has a significant hearing loss.


  • Staff is not able to recognize when Axel is signing to them. Because language is so new to him, he does not understand that people have to be able to see him to know he's talking. However, even when staff is sitting right with him, they either do not notice that he is signing, or if they do see him, they don't know what he's saying because it's not something in their limited sign vocabulary. There were several times when I pointed out to the the staff that Axel was saying something, and countless other times when I didn't. One time I did was when Axel signed that he needed to go to the bathroom. He signed it several times in the direction of various adults in the room but nobody noticed. I finally spoke up for him. Communication is supposed to get him a response, but it can't happen when people don't know he's communicating.
  • Axel's sign vocabulary is already well beyond that of the classroom staff. Because of this, he will be missing many opportunities every day to new signs. One example is during their morning meeting time. The classroom teacher is not able to sign the numbers past 10 or 11, they counted by 1's, 2's, 5', 10's up to 122. As you know, a student learning to count needs to hear the numbers many times before they can do this on their own. Likewise, a student who signs need to see them just as often before they are able to sign them. The teacher counted money up to $1.22. (to match the number of school days thus far) Because the teacher does not know the signs for penny, dime, nickel, quarter, dollar, cents, etc. Axel did not have access to that vocabulary. I estimate that during that one hour block of time Axel would have been exposed to 50-60 signs he'd never seen before. If he saw them every day he'd be able to produce them after a few exposures. Staff was able to witness this today when I introduced the sign for "line up". Axel had never seen this sign before. I showed it to him twice, and showed him how to form it himself. Half an hour later, the music therapist told the 1st graders to "Go lineup", and Axel signed, "line up". He is very quick to put to use the signs that he's learned.
  • The staff and students in the classroom need name signs. Axel is not able to tell me about his day, or communicate his needs without knowing the names of the students and their name signs. He cannot say, "Where's Johnny", without having a name sign for "Johnny". This is also a safety issue. Everyone in the building needs a name sign. Axel will not otherwise be able to communicate issues of safety to anyone. As you know from our previous experience with Angela, it is crucial that a child be able to name a person in the event they have been harmed.
  • Phonics: We use Cued Speech at home as we're introducing phonics to Axel. I don't know if you've been able to view the video link I sent you two weeks ago, but Axel is already able to pick some letter sounds out of written words. Although he is not able to verbally produce the sounds, he is able to cue them. So far he can cue the sounds /s/, /v/, ee/ a/ f/ r/ b/p/m/ n/ and the word "the". He is learning to put these sounds together into consonant vowel pairs, and produce words such as "see", "van", "ran", "free". Also, I have recently discovered that when he cues simple words, such as "see", he is able to say the word quite clearly. (assuming they are sounds he can produce.) But when he signs the words, he has a lot of difficulty with pronouncing them. There is no staff in the classroom who is familiar with Cued Speech. Because of this, Axel will not be able to progress in his reading with the staff. Although he is beginning to read simple sentences such as "See the van", there is no staff in the room who would know what he is doing, and only one of those words is he able to produce verbally.
Those were just my communication based observations. I had many others relating to the social structure of the classroom, along with the fact the classroom was grossly understaffed without Axel in there. Add in a child who cannot communicate and is just learning about the world in general, and I finally had to say, "Axel will not be back in school until there is a 1:1 person for him."

Two days later there was another staff person added to the room.

In a formal letter to the district outlining my concerns for Axel in this setting, which I CC'd to the deaf/hard of hearing staff so they were aware just what my perspective is, I asked that someone familiar with communication needs of a student 100% on sign observe in the classroom. That would be the deaf/hard of hearing staff. 

After two days observations, the d/hoh staff agreed that Axel's communication needs are not being met in the classroom. He only has three more weeks in school before his surgery so we're going to keep him there until then, and will be having a meeting soon about his summer homebound services and his placement for fall. There is a full-immersion ASL DCD classroom in a neighboring district, which is where many of our d/hoh students go. That program uses both ASL and Cued Speech, and it would be ideal for Axel! He would get a FLUENT language model, both in ASL and spoken English, as well as cued speech for reading. 

In the meantime, every day I get annoyed by something related to school. I have to remind myself that they are still getting to know Axel. Still, it is clear to me that he is getting away with all kinds of crap, either because 1) they're avoiding conflict with him or 2) they're assuming he can't understand them. Here's an example: Axel has known how to write his first name for quite some time, and is working on his last name. He comes home with papers where he's clearly supposed to practice writing his name, but all that he's written is "A...A...A....A". He is getting away with NOT working on his name, instead doing what he wants and just writing the letter "A" over and over again. You know, cuz it's his favorite letter! I have told school that this is not acceptable, and he needs to do what he's told. Instead I get pages of A's.

This morning he was counting for me. (in ASL remember) and counted, "1....2....W....4". Ummm huh? Yeah, someone at school is counting with a W instead of an ASL 3. It's a common error for someone who doesn't know what they're doing. I sent an email to school, "Whoever is doing this needs to stop! The staff needs to know that if they don't know the sign for something they need to STOP right there and NOT continue instead of teaching him something incorrect." He also came home last week signing all the days of the week backward, something he's known for a couple of months...................sigh.........
 

Four Months Ago

For those of you who don't follow our adoption blog, I have an Axel update on there. He's home four months today! You can read it here.

Friday, April 15, 2011

Talkatoo!

Several parents I know are in the market for an ID device for their children who are not able to convey information themselves should they be separated from their caregivers.

Enter the Talkatoo!
From the website:
Welcome, oh fab little button recorder. Designed for kids (yet hip for parents), it comes as a necklace or as a clip-on charm for backpacks, lunchboxes, purses or even belt loops. Just press the little button to record a message, then the big one to hear it back (repeat as desired). Fun to wear, fun to share. From silly to sentimental, it's perfect for whenever you're apart.

So yeah, you could record a fun little message for your child, OR you could record your child's name, parent's names and phone number just in case he/should should get lost! You can change the message so you could have your child's ID info if you're going to be out and about, then change it back to something fun later. It also has a lock-out button so your child can't mess with it and change the message. (somehow I have the feeling my kids will figure this out. LOL)

The company also has a great program for kids who have military parents stationed overseas. LOVE THIS!

I'm going to order us some Talkatoos and see how the kids like them. I think they're adorable!

I'm thinking....no.

Check out this video from Kostanjica, the town we're headed to next month. My heart raced just watching this.

Rise Up

Thursday, April 14, 2011

And the Pressure Mounts...

This week I've been feeling my anxiety rise steadily each day. It started on Monday. That's the day that I realized in the entire month of May I will be home 4 or 5 days.

I know, right?

There are two trips being planned simultaneously. On April 30th I leave for the tiny village of Kostanjica, in the Republic of Srbska. (and no, it's not missing any vowels!) There is a lot of work to be done there, and much preparation to be done here before we even leave. (And SHOPPING! Hello! I've done a little bit but I'm still in need of an outfit for a particular event. ) It's funny though, I feel like I haven't really done much to contribute to the preparations of this trip. Then I was reminded of all the things I HAVE done. I guess I just needed to realize that just because I ENJOY doing something, doesn't mean it's not work! LOL I do have to say, every single day the details of this trip that fall into place amaze each of us on the team. How He is working to put it all together.....I just can't even explain it all!

I will arrive home on May 9th, and the 14th we will leave for Philadelphia for Axel's surgery. Today all our flights were booked for both trips were booked. Our house sitter is in place, and the final details being arranged. Surgery Day is coming. I'm anxious and sick to my stomach all at once. I'm also a little bit excited. We'll have one day to spend together as a family, with good friends from the DS community who we've wanted to see for a very long time. It is time our family needs right now before our lives are focused on helping Axel heal.

Tomorrow I'll try to update about Axel's school issues. "Interesting" is a good word.

Oh! And, just for kicks, we've just finished updating our homestudy. You know...just in case.

Sunday, April 10, 2011

Learning About the World

Across the highway from us is a HUGE park preserve. It has miles and miles of well-groomed trails, and there is lots to see. Angela was with her dad for the weekend, so while Dean was busy digging out the back yard from a winter with four dogs, Axel and I took a walk. I wanted to show him the beauty that is Minnesota. I'm sure he was beginning to wonder if we just live in the snow here all.the.time. It sure was beginning to feel like it!

First, he donned his frog boots. We'd be finding some mud, for sure! These boots are FAR too clean.


We stopped to look at the lake. We could hear the frogs, but couldn't see any. They've just started singing this week! 

Axel told me he wanted to "go more walk" and enough of the pictures already. Yes, I took his brace off so I could get a couple of pictures without it.

And then I did a terrible thing. I told him to lean against a big rock while I took his picture. Ummm... apparently that was asking too much. He cries like this often. Pretty much any time he is told to do something he doesn't really want to do. Like writing. Or sitting on a rock.

Then I found him a stick, and he was happy again. I saved the day.

All was good until he walked around this bend in the trail. That's when he turned to look at me instead of looking where he was going. 

See the mark under his eye? That's from the stick I saved the day with. The one he was holding when he went around the bend in the picture above. Notice falling on the stick was not anywhere near as scary as sitting on the rock.

Splashing a stick in the water is FUN!

Especially if your feet don't get too close to the water. There are some things about being a child...a boy child...that we will have to teach him. Like, splashing your feet in the water is FUN too! (but don't tell Angela that, since I just finally got it into her head that she needs to keep her feet out of the water!)

We found evidence of spring FOR REAL!


Except for the tears, and nearly poking his eye out with the Mama endorsed stick, we had a good time! We walked nearly two miles. Next time Angela will be able to come along with us, which will be fun, I'm sure, especially if she's complaining about how far we've walked, how tired she is, and "When are we going HOME?" Still, we will have fun.

Human Rights in the Balkans

The US State Department issued their assessment of human rights in the Balkan region. You can read the full article here.  Sadly, it says nothing about the care of orphans in the region, something that his a HUGE issue! Ok, I am not a member of the US State department, but to me, apprehending war time fugitives is clearly important, but what about the children who are alive NOW, and not getting the care they need?

Hopefully there is much more to it than what was published in this article.

Swinging

 At school Axel uses an adaptive swing. It looks like a chair, with a back, etc. to prevent him from falling and injuring his neck (or becoming a quadraplegic...or dying...) But at home, Dean and I are willing to take a few more risks. Not much, mind you. But he does need a LITTLE bit of time to just be a kid! After all, in just a few weeks, that time will end for awhile.

So yesterday we went to my niece's basketball game, and stopped at the little playground right outside the building. No jungle gym for Axel (it was a high one) but maybe he could swing when we're right there with him? Dean manned the swing while I manned the camera.

If only you could have heard him laughing! The joy was unspeakable, and very much worth those few minutes of eagle-eye watching! I don't know for sure, but based on his reaction I think it was his first time on a regular swing!















After the game we took some pictures while we were waiting outside. Axel's "serious" face looks like a mad face. LOL I can assure you, he's just being serious and solving the world's problems behind those brown eyes!