Blogging about life and 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!"

Friday, March 30, 2012

And another first...of many more to come

Tonight Asher met another milestone. It's one I've been waiting and waiting for, wondering if it would ever happen.

When people ask me, "How's Asher adjusting?" I always say, "Oh, he is so easy! Too easy, really!" and he is. Asher is too easy. If you've never had a post institutional child in your home, you may not understand that it's possible for a child to be "to easy".

It is!

On Monday he got his MMR shot. It's a shot that HURTS, and when I told the nurse that I wouldn't even have to hold him because he won't react to it she said, "Oh, he'll react to this one. It really burns!" The nurse cried because Asher didn't even bat an eyelash. She finally understood what I meant by "No, he won't give any reaction to pain. Why, when nobody has ever responded to his tears?"

In Asher's life, he never learned that he could have an opinion. He never learned that he doesn't have to just accept whatever happens to him, weather that be hunger, being wet, or being in pain, or just not liking the activity at hand. Example: Yesterday at speech therapy, his ST and I were talking and he was trying to get her cabinet open. Neither of us could see that his fingers were pinched in the door. He never made a sound. He just "froze", which is an instinctual safety mechanism that both my boys employ when in pain or afraid.
Now, Angela has a slightly similar reaction, but hers is for a different reason, because she doesn't feel pain like you or I do. Asher feels pain, but the only way I know is because his eyes water.

Back to Asher's first...

We've upped the ante a bit on eating, now that we've started feeding therapy. One of the things we've done is ditch the sippy cups. They are a no-no in the world of Speech Therapy - which I knew but I wanted to get his swallow study done before moving to an open cup - and it was time to get rid of them. Now we've moved onto straws.

Now, I know that Asher can drink from a straw. He picked it up quite easily, really. But Asher doesn't LIKE to drink from a straw. It is work, requires more concentration, and because I cut the straw down to just enough to get his lips around it means he can't stick his tongue out to do it. I know, call me mean.

Last night at dinner Asher sucked his milk down through the straw in record time. This morning at breakfast his juice went down just as fast. Tonight was a different story. Tonight he looked at the cup in front of him with a look of disgust. He picked up the cup and tried to make it work like a sippy cup, but that didn't work so well. He KNOWS what to do with a straw, but he doesn't LIKE the straw. "Asher, drink your milk." He picked it up but didn't put the straw in his mouth. Tonight he decided he didn't want to.

This is a MAJOR MILESTONE in the life of a post-institutional child. Making a choice of "I don't WANT to." However, this milestone is multifaceted. Not only is it the first time he's challenged me on something, but it's also the first time I've had to put my foot down with him and say, "You will drink your milk."

Yes, it's "just milk", (3 oz of it in fact), but it is oh-so-much-more than that. So much more.

It was a moment when I had to decide if Asher was going to win this one or not. Was this the moment to allow him to voice his displeasure and say, "Oh, ok, you don't want to drink your milk. That's just fine." or was this the moment when I would have to say, "I know you don't want to drink your milk, but you're going to drink your milk." Sometimes it's hard to know which is the right decision, and you only have a fraction of a second to weigh your options. In my making my decision I had .08 seconds to decide if this was a situation that would repeat itself tomorrow. Yes, it was, so I had to set the bar now and not change my mind.  There probably isn't a right or wrong decision, but, once you make the decision, you MUST stick to it. "Follow through" is even more crucial now than with a child who's grown up with boundaries and limits. How did I know the situation would repeat itself?  Because dinner happens every night here, and the family rule is you drink your milk.

So Asher did what Asher does when he's afraid or doesn't know what to do. He Froze. I mean like a stone sculpture. (Axel does the same thing, though not anywhere near as much as he used to.) This is a safety reflex, kind of like the "Flight or fight"response, but "freeze" should be included in there. The freeze happens when a child is afraid of making a single move for fear of doing the wrong thing. It is a learned behavior, usually developed due to physical abuse. "If I don't move I won't do the wrong thing and might be safe."

Axel could hold the "freeze" for very long periods of time. Seriously, if we had a confrontation and I just walked away from him, allowing him to work through the issue on his own (which he sometimes needed to do) he would stand/sit/lean/half kneel in exactly the same position where he froze. Sometimes he needed to be left on his own to see that he COULD move and nothing bad would happen to him. Sometimes I would move him.

So Asher and his milk....

"Asher, you need to drink your milk."

Asher freezes with the straw 1/2 way to his mouth, staring straight ahead, mouth open READY for the straw, but the cup has stopped moving.

"Asher, put the straw in your mouth."

I guide the straw into his mouth, but his mouth remains slack, his eyes continue to stare straight ahead.

"Asher, close your mouth" (because it's on the straw now.)

He closes his mouth, eyes still staring forward.

"Asher, drink the milk."

Nothing

"Asher drink the milk."

Nothing.

I remove Asher from the table to the quiet spot, but only for a few seconds. "Asher, we're going to sit at the table. You need to drink your milk."

We return to the table, Asher picks up his cup, puts the straw in his mouth and takes a sip. Dean cheers him on and he takes a couple more sips. I cheer him on and he stops.

Aaah...another twist. Another very common thing in the process of attachment. Rejecting the primary caregiver and doing pretty much anything the other parents wants them to do. The parent who is the primary caregiver is the one who deals with most of the discipline, and the other parent becomes the "savior" in the eyes of the child. When this becomes apparent, it's very important for the other parent to NOT take on the savior role and keep their expectations for the child where they are the rest of the day. Communication between the parents is crucial, deciding ahead of time (or taking a step out of the room for a quick pow-wow) what the expectations are going to be.

Do you see why I said this little event was multifaceted???? It's like someone could walk into my house and do a psychology study right in my dining room.

I removed Asher from the table again for about 30 seconds. This time when he came back he drank 1/2 the milk before I had him stop for a second, then he drank the rest. We had a party of course, cheering Asher for drinking his milk. I will place money on this exact same situation happening again tomorrow, Asher testing me to see if the rules today were the same as yesterday.

Yes, it seems militant sometimes. I think many adoptive parents of older kids will tell you people often say they're being too strict. I will say this: Wounded children need healing, and healing comes in many forms, spiritual, physical and psychological. Sometimes it's a hug, sometimes it's a prayer, sometimes it's learning that Mommies and Daddies are there for you no matter what, and sometimes it's learning that nothing bad will happen just because you were told to drink your milk.

Baby steps. Every day it's baby steps.

Wednesday, March 28, 2012

The Prize

My very good, real live in-person friend, Ann Bremer, is a finalist in an essay contest with her submission of "The Prize".  If you're on Facebook, please go have a read and "like" it. (and I promise, you will like it!)

Tuesday, March 27, 2012

Asher

Asher has been with us just short of four months! How can that be? I look at the pictures of who he was back in December and would  never recognize him as the same little boy. He was lost...so very lost.



November 22nd, 2011





The first day I met him I was so very worried. He was completely blank, with no affect at all. No smile, no eye contact. Just a whole lot of nothing. I worried. Did he have autism? Would we ever be able to reach him through the severe damage done by 7 years of institutional care? I'll admit, my confidence was low.

That first day I estimated his overall skills to be somewhere around 9-12 months. He was SEVEN years old. SEVEN! I was going to arrive home on our doorstep with an infant in the body of a seven year old who was really the size of a 2 year old. This was going to be a big adjustment for our family.

This video was taken on the 2nd or 3rd day with him. It was VERY difficult to get any eye contact from him, and certainly there were no smiles. And if he had a dangly thing? You could pretty much forget any interaction. The thing that stands out most to me is his tongue. No wonder his ENT asked about reducing it! Look how hard he sucked on that thing!


It sure didn't take long for Asher to start coming out of his shell. He ADORES both Angela and Axel. As soon as he hears one of them playing in another room he's headed in there. Tonight, even though he was tired and snuggled up on Daddy's lap,  he opted to investigate a new toy he heard Axel playing with. He's also very attentive when Axel (or anyone else) is trying to show him new signs, but Axel is his favorite teacher.

We just finished Asher's assessments for school. His skills now sit anywhere from 9 months (fine motor) to 2 years. However he can follow directions quite well, especially considering he's still learning English. He's also starting to categorize things. For example, I might say, "We're going for a ride in the car. Get your shoes." and he'll come back with his jacket. LOL That just shows he understood we were going somewhere and knows he needs certain items in order to go. He's also started telling me things that he wants, like bringing me my purse to say he wants to go somewhere.

We started potty training a couple weeks ago, but it's really been tough when there is hardly a day when we're home all day long! But, he will now stand and pee at the toilet almost as soon as I get him there!!! That is HUGE, and especially funny to me since another young man in the house wanting nothing to do with standing! LOL Asher still has to figure out when NOT to go, but we're very close. Today we had to run all over the place to a couple different doctor's offices, so he was in a diaper, but he kept that diaper dry all day long, even through a nap! He peed on the toilet every time I brought him. If I can really stay focused (because it's all about the mom not getting distracted) he might just go to school next week in underwear. Oh, that would be so nice!

Asher is also starting to make more spontaneous sounds. Getting his tonsils out has played a huge roll in this. He couldn't get sound past them since they were completely obstructing his mouth. He also has more room for  his tongue in there now too. He's consistently saying "mama" paired with the sign. His speech therapists will be thrilled to know he's now answering "yes" to some questions, although if you didn't know him you wouldn't recognize his sign for yes! LOL He does it kind of backward, and by throwing his arm in the air. Here's a list of signs he uses on his own now:

eat       more        bath        all done
shoes   socks       jacket     milk
potty    shirt        jump      yes
go       ball           car        bed
pillow  mom       dad        Axel
glasses

Asher's motor skills are really coming along too. Here's a video of him walking during one of my first visits with him in Serbia. You'll notice he's very toddler-like in his walking, hands in the air for both balance and because he couldn't see.


I took this video a couple days ago. Totally cracks me up as he's trying to figure out this business of swinging his arms. But there is more to it than that. This is a video of a little boy who once had very limited exposure to the outdoors. He's just HAPPY in this video. One very happy little boy.


He totally "gets" jumping now, and if you hold his hands for balance he can get both feet off the ground! YAY Asher!

Here's another fun video from today. Axel was standing behind me making funny faces and Asher was imitating him.


But this one totally cracked me up. A video of Asher watching a video of himself. (so when you're hearing me talk, you're actually hearing the video.) He LOVES watching videos of himself now, and if I want him to practice making sounds I just need to put it on video and he'll do it. LOL


Asher has come so very far in such a short time. We are thrilled with his development so far and can't wait to see what the months ahead will bring for him. We're anxious for him to start school and be around other kids who are jabbering away, and he's so eager to learn! We often talk about that lost little boy I met just a few short months ago, and how he'd still be sitting in that same room dancing the same pieces of thread day after day. Instead he's here, with us!!! This child radiates PURE JOY!!!! Every single morning when he wakes up I thank God for giving me the pleasure of seeing his adorable smile yet again. At least once every day Asher will come strolling through the living room and suddenly grin. It's as if he's thinking to himself, "I can't believe this is my life!"

Monday, March 26, 2012

Asher's Glasses

Every day Asher gets compliments on his glasses, and every day I run into a parent who has never seen them before, including a friend of mine who is an ophthalmologist and has a son with DS in middle school.

So, here's the 411 on Asher's glasses!

Angela got her first pair of glasses at age 7, the same age Asher is now. We tried several different brands, the most recent being Specs4us which are designed to accommodate the unique physical characteristic of many people who have DS. They are also very affordable. Well, I've lost track of how many time we've had to replace the nose pieces of them, or have them bent back into shape. And she had three pairs of them (I bought all three at once) and had the same problem with each pair.

When it was time to choose Asher's glasses, we went to Glasses Menagerie here in our area, who specializes in fitting kids with unique facial differences.  Interestingly they won't carry Specs4us anymore because of the same problems Angela had with hers.  Asher's glasses are made by Centrostyle. They are extremely comfortable, not to mention durable.

These are pictures off their website:

First of all, the most distinctive feature is the ear piece! This is completely adjustable, sliding along the bow so you can make the glasses sit looser or tighter against the face. It does NOT move easily so don't worry about the kids making their own adjustments.
The next feature that I really love is the rubber. The back side of the glasses, and the nose area are rubber, which means they don't slide around like other glasses do. 
And here's how they sit on Asher. 



Asher has had his glasses for two months now, and I don't have one single complaint. They are durable, they fit very well, and can be adjusted by an adult as he grows. That means we only need to replace the lens as needed instead of the entire frame. Although they come with a hefty price tag, I highly recommend these frames!

And then there is Axel

A couple people have asked me lately how Axel is doing with the transition of Asher into the family so I guess it's about time I do an Axel update!

You may remember from previous blog posts that the day Axel first saw me on Skype with Asher in my lap his behavior fell apart! That week Dean ended up just pulling him out of school because he was completely out of control.

That behavior got only slightly better when I got home. I lost count how many times I had to go to school the month of January! I think I was there nearly every day. His staff at school was excellent and is very capable of handing behavior issues, but this was far more than that. This was a major emotional upheaval for him. I finally pulled him out of school completely for a couple weeks and decided to approach things from a new angle.

The first week of February Axel and I were in Philadelphia for a check up with his spine surgeon. During the couple weeks I had him out of school I really prayed a lot for direction in how to deal with the problems Axel was having. It became very clear to me that Axel really had no idea what was "ok" in school. Way back I blogged about the fact that Axel still needed to develop a conscience and that when he's away from us he's still accountable to us even though we're out of sight. So when we came back from Philly I told his school staff to expect normal 4th grade behavior from him, and if they saw anything but that he was to be removed from the classroom to the hallway...no discussion...no warnings...just move him and to call me. I would then pick him up and remove him from school. And yes, he's capable of normal 4th grade behavior because that is what we get from him at home.

The first day Axel made it a whole 10 minutes at school before he slapped someone. He was removed to the hallway and I was called. He was NOT thrilled to see me show up at school. I told him, "You slapped someone. That's not allowed at school. Now you go home with me and have school at the table." Which is exactly what we did, plus he had to take a nap. LOL

The second day he lasted about 90 minutes at school when I was called. Unfortunately not all the staff really understood what I was doing, and had been giving him threats all morning, "You need to stop or I'm going to call mom." Which completely destroys what I was doing. This isn't about negotiating with him, it's about drawing a line in the sand and saying "Don't cross it!" or there are immediate consequences.

The third day he made it almost to the end of the day before he had to test the limits in phy. ed. class. He really loves school and was NOT happy to see me at all!

Then we had about two weeks where he didn't have a single problem at school. He was doing great. Unfortunately he felt the need to test the naughty waters again. This time when he was moved to the hall he was frantically signing "Sorry! Sorry! All done sorry more school!" through the window at his teacher. When I arrived he saw me round the corner in the hallway and and promptly put his head down on the table like he'd been defeated.

That was a couple weeks ago. His behavior has been fantastic ever since. Now that he understands he's not allowed to stay in school when he's naughty he is following all the rules.

As for bonding with Asher, things are going very well! He really does enjoy sharing a room with Asher, and he loves showing Asher how to play with toys, not to mention having someone who will laugh at his silly antics! The two of them can frequently be found holding hands on the couch, or if we go for a walk Asher is pretty quick to take Axel's hand. Axel then gets the look of proud big brother on his face.

I'm very proud of Axel and the way he's matured over the last year. He's been with us 15 months now and is a completely different child than the one who got off that plane. He's a young man now, getting muscular and taller, full of humor and self confidence!

Clearly each of the kids have found their place in the family and feel secure in it. We don't have anything but very typical sibling rivalry going on, and I would venture to say they get along better than many siblings do.

Thursday, March 22, 2012

So very close!

We are so very close to a completed kitchen! Today was day 52 without a sink or stove, but...you know..who's counting?

FINALLY the cabinets arrived!


Asher was pretty fascinated watching the whole unloading process. He sat here for a couple hours watching.

The first day was a lot of unloading and carrying, and basically staging the cabinets in the kitchen and garage. Then the put all the toe kicks down. Here's what it looked like at the end of the second day.

And I was oh so thrilled to come home at the end of today and see there are only a couple odds and ends of things that need to be completed or tweaked.


My favorite part at this point is the window seat. To the right of the window is the pantry, and to the left is a mail center. With doors. You know, so I can hide the mail away when people come over. LOL The fabric sitting there is what I found for the cushion cover. 

The cabinets are natural cherry, so over the next couple of months they will get darker as they're exposed to natural light.

So what's left to complete? Tomorrow the granite guy comes to make a template so the granite can be cut,  the overhead vent is scheduled to arrive and the drawer and door pulls get added.  Monday the electricians come to finish up wiring for the appliances and get electric to the island. It takes several days for the granite to be delivered, and until it's installed we still have no sink or stove but at least the fridge and microwave can go to their new homes!

I can almost see the light at the end of the tunnel!

Big sister update

Since several people have asked, I thought it high time I do an update on each of the kids. (at  least those living at home.)  First up is Angela!

Just in case you aren't one of the people Angela has told this to 20 times, she's going to be 16 in June. SIXTEEN! Do you know what comes just a couple years after that? Graduation, that's what! I hear about each of these things no less than 5 times per day.

We have discussed 17 different options for her birthday. It's a good thing she's not getting to decide because we'd NEVER make a decision! Her choice (not the choices I've given her, but choices she has come up with herself) include:

1) taking a limo to Chicago (that's a 7 hour drive darling!)
2) a bowling party like her friend Tanya had
3) a dance party complete with live band
4) a trip to Hawii
5) a trip to disney
6) auditioning for American idol (which, no surprise, involves travel.)

I guess it's pretty clear to see whatever it is we do is gonna be spendy if Angela is left in charge!

Angela just finished her floor hockey season, and the state Special Olympics basketball tournament is coming up this weekend. While she's excited to play basketball, she's more interested in the dance on Saturday evening. My girl does love her some dancing!

Angela and Axel continue to have a love/hate relationship as many siblings do. We often hear "stop looking at me" followed by "Axel, wanna come play school with me?" We drive a car, which means when the entire family goes somewhere, the three kids are in the backseat...you know...touching one another. We all know touching siblings is bad, right? If your leg touches his leg that could start World War III. And yet that same brother who she's least patient with is the first one she seeks out when she gets home from school, and every day acts surprised when I remind her that she gets home before he does. They really do play well together, and she is adjusting quite well to not being the baby of the family.

Angela absolutely adores Asher! She is very much like an 8 year old developmentally, which puts her right smack in the middle of the "mothering" phase that girls go through. She is constantly helping (or trying to help) him do stuff. Yesterday she was determined to help him hang up his jacket, and yet would have nothing to do with hanging up her own. LOL When Asher had his surgery a few weeks ago Angela was quick to ask how he was doing. She was also disappointed that she didn't get to visit him in the hospital. Well, I think she was more disappointed that SHE wasn't in the hospital because she loves staying overnight there. Crazy kid.

All in all Angela has transitioned into the role of big sister very well. She has her moments of course, but that comes with the territory of turning 16, right?

Wednesday, March 21, 2012

Another First!

Look who got his first ride! We just went around the block, but he sure enjoyed it!!!




I need to get him a leather jacket. Angela has one that would fit him but it's "pleather" so it doesn't breathe well and is HORRIBLY hot in the summer. Not only that, but pleather doesn't do much for protecting the skin in the event of an accident. That and he needs a different helmet. This is an Xsmall, but it's just a hair bigger than I would like to see on him.

Axel still has to learn some things about riding in Spank. Like, keep your hands inside the ride at all times, because tailpipes are VERY hot. That when Mom taps your helmet it means you need to LOOK at her. And that mom cannot hear you when you're talking inside the helmet and we'r riding down the road. LOL

I have to laugh, because there are ALWAYS people taking pictures of us when we're out. I've been sitting in a turn lane when I realize the person next to me is taking a picture. This time when I took Axel out, there were two teenage girls in a car ahead of us. The girl in the passenger seat turned around and was taking a picture out of the back window. LOL

Tuesday, March 20, 2012

Guess what?

It's cabinet day! HOORAY!!!!!! It's a couple day process though, and then the granite guy will come make a template so he can go back to his shop and cut our granite. So while the last steps are finally going to happen, we're still days away from complete.

Our microwave  has been dying for months, and for months we've been holding off getting a new one. But when the microwave is the only think I had with which to cook for the kids, I've been getting a little frustrated with the buttons that only work intermittently. This has been especially true when I'm trying to make breakfast before the kids leave for school and I don't have unlimited time. Now that the cabinets are complete and we have the final measurements for the slot where the microwave will be going we were finally able to get a new one last night. It even has a "butter soften" button. Life is good.

Dean and I are both very anxious to put the house back together. The kids probably think cooking in the bathroom is our new normal. We started ripping everything out just three weeks after Asher arrived home so it'll be good for him to get this project over and done with!

Sunday, March 18, 2012

School

Guess what? In two weeks this little guy will be starting Kindergarten!! Oh how I'm excited for Asher! He will be going to our neighborhood school in a regular kindergarten classroom and will have an aid with him. The team and I were in unanimous agreement that giving him fluent language models is crucial to him learning to understand and speak English, and he would not get that in a special ed. classroom. 


There is no special ed. class in his building so the only time he'll be pulled out of the room is for speech and OT which will hopefully be happening in the classroom much of the time.

Asher will only be going three three days per week because the other two he has private therapies. He's only doing 1/2 days because he is still very much a toddler and takes a 2-3 hour nap every day! 

His new teacher is very excited that he'll be joining the class, and has asked that I come in sometime this week to talk to the other kids about Asher, and maybe teach them a few signs.  I'm not sure how much I want to tell the kids. I've done lots of talks in classrooms about DS in general, but Asher's issues aren't DS related. His delays and quirks have everything to do with having spent is first 7 years without a family. Of course the KIDS don't know that. The biggest question they're going to have is why he's so small and why he doesn't talk. Oh, and why he's still wearing diapers! I'm going to try to dress him with long t-shirts, etc so his diaper isn't always peeking out of his pants so the kids will forget about that part. Anyway, I'm thinking a lot about this right now, and have a couple of ideas. 

Thursday we'll be meeting to put together a kind of temporary IEP since all of his testing isn't quite done. 

I can't wait for Asher to learn what school is all about! He's going to LOVE IT! On the other hand, I'm going to have a hard time putting my little 38 lb baby on that big bus in two weeks.

The Long Awaited Swallow Study

I think we've been waiting to do a swallow study since we brought Asher home 3 1/2 months ago, but we had to wait until his tonsils and adenoids were out and he'd recovered from surgery. We needed the swallow study before we could begin feeding therapy.

He's recovered now, and I'm ready to get on with teaching him to eat!

I've had suspicions that he aspirates liquids. For those new to the world of swallowing issues, that would mean when a person swallows it goes down the "wrong tube", which would be ones airway and into the lungs. When Asher drinks liquids he sometimes sounds like he has residual stuff in the back of his throat. Also, he has a history of recurrent pnemonias, and while in the orphanage he was never given regular liquids like water or juice, instead getting "compote" which is kind of like blended fruit which is a little thicker than just juice.

On to the swallow study. As I suspected, Asher aspirates thin liquids, but both the doctor and I were surprised how badly he aspirates. The very first swallow completely coated his airway. You or I would have been coughing and sputtering, unable to talk and need a moment to catch our breath. But not Asher. Not only does he not have that protective reflex, but he didn't give any response at all. His eyes didn't even water. The doctor said, "He should be sick. He should have constant aspiration pneumonia with this level of aspiration. His lungs must be badly scarred."

Next we tried nectar consistency. He had a little bit of splashing in the back of his throat, but otherwise he did ok.

Then came honey consistency and he was fine with this. When he was given pudding consistency with chunks in it that would have triggered chewing, he just swallowed them whole. (which didn't surprise me at all because I've seen him do this at home.)

The only time a gag response is triggered is when he gets a LARGE piece that is bigger than his throat. Oh, but that's after it sat mashed up in his palate for quite some time and eventually the doctor scraped it off the roof of his mouth! It's good that he has that gag response, but its not a very strong gag which means he's really at significant risk of choking when eating anything other than mashed foods.

When the testing was done it was time to discuss the option. Asher has been running a low-grade temp for several weeks and has very severe night sweats. Both of these can be symptoms of aspiration pneumonia. He does not have any cough at all, and otherwise seems quite healthy. Because of the low-grade temp I'm not convinced he doesn't have something brewing. We asked for a chest X-ray but the Dr. didn't want to do one unnecessarily. I'll be asking our regular doctor about that tomorrow morning. We spent a great deal of time discussing thickening his liquids, the effects of that on his G.I. system which seems to get out of sync quite easily.

I don't know exactly what we're doing yet, but I do know that on Tuesday he will finally be starting feeding therapy! Oh how I cannot wait to have someone help me figure out how to get him eating real foods safely. I'm not telling Asher this, but I have a goal of September in mind, when he'll start first grade.

Thursday, March 15, 2012

A first, caught on camera!

Please realize that Asher, other than laughing (which has been wonderful to hear) has been silent. Occasionally we can get some sounds out of him, but only with A LOT of work, and we have to keep it all low key and not get too excited because he's pretty shy about using his voice.

He's been home for almost 3 1/2 months now, and we've spent that entire time trying to get sounds out of him. But the last week or so, Asher has been finding his voice! He especially likes to imitate high pitched sounds. (No, he does not have a hearing loss.) We've been able to get an "ahh" sound from him, and an "mmmm", but always very quiet and with a lot of reluctance on his part. Then a few days ago he started making sounds in almost a sing-song type of pattern, which of course is beyond adorable!

But look what we caught on camera last night!

Wednesday, March 14, 2012

Plight of the Orphan

I've talked about orphan care plenty on my blog. You're probably sick of hearing it by now. I really don't care. These children do not go away, and once you know about their plight...well...it's why I scream it from the mountain tops on a daily basis.

You may remember back in April 2010 when I went to Serbia and Bulgaria for the first time. I posted many posts during that trip, like this one and this one. I went on that trip with Shelley while she was completing their family's adoption of Kullen. He came from a very good facility and had good care. But not all the kids are so lucky. Some of the kids found themselves living in Pleven instead.

Please, if you read nothing else today, please go read Shelley's post. Their lives depend on it.

Tuesday, March 13, 2012

Well?

Do you know what day it was yesterday? It was Tuesday. It's the day the cabinets were supposed to go in. Supposed to. They didn't.

I am pretty sure I'm near the end of my rope with the kitchen thing. We're at 9 1/2 weeks of construction now. I have not had a kitchen sink or stove since January 28th. In case you'd like to know, that is 43 days of doing dishes in the bathroom sink. 43 days of microwave or toaster oven food, delivered pizza, or pancakes. 43 days of having to visit three different rooms in the house 17 times each just to put dinner on the table. (if it can even be called dinner.) The fact that **I**, queen of microwave cooking, and tired of said microwave speaks volumes!!!

Two weeks ago when we stayed in the hotel, it was right next to a McDonalds. As we turned onto the street Angela complained, "Awww...McDonalds AGAIN???" There was a time when we had to tell Angela "No more fast food." and now here she is telling US she's had enough. So have I Angela, so have I!

Axel had never seen paper plates before this project started. He's so confused about what gets thrown away and what goes into the bathroom (?? HUH???) sink. I'm pretty sure I'll have to buy all new silverware when everything is said and done because I think a fair number of items have found their way to the garbage my mistake.

Our bedroom and the guest bedroom have become the "If you don't know where to put it, toss it in there!" rooms. Both the upstairs and downstairs bathroom sinks have dishes in them. The coffee pot is in the basement bathroom and there is oatmeal, salt and pepper and snack bars in the upstairs bathroom linen closet. The fridge (the beautiful new fridge that still has all it's protective coverings on it!) is in the entryway, and you can find the bread, butter, syrup, cereal and peanut butter on top of that same fridge.

The microwave is trying very hard to die and now has only one button that works consistently. It says, "frozen vegetables" and goes for 2 minutes and 30 seconds. If you have a short attention span like I do, this is bad. Oatmeal only takes 1 minute 30 seconds but if you wander away...yeah...it burns through those styrofoam bowls.

The new date for the cabinets to be installed is Tuesday March 20th. That will be day 50. If there is another delay I am just not going to come out of my bedroom anymore. No...no I will stay in bed with the covers over my head.

That potty thing

So last week I decided to conquer the potty thing with Asher. I put him in underwear, gave him a ton of water and/or juice and hung out at home all day.

We got noth'in. No, instead he waited until nap time....when he's in a diaper...and flooded everything in his sleep. Since that day he won't pee on the toilet OR in a diaper while he's awake. That's right he'll stay dry all.day.long, weather in a diaper or pants, and only pee in his sleep.

.....sigh....

Today is the next level. CONSTANT drinks, no pants, and the potty seat that sings when you go. We'll see how it goes.

Sunday, March 11, 2012

Siblings as Therapists

Before Asher got his tonsils out, all the sounds he made were very glottal/throaty sounds. We would plug his nose to show him where the sound needed to come out, but it was really difficult for him because his tonsils were so huge. Now that those nasty tonsils are gone, he's learning he can make sound come out his mouth instead. Only rarely do we need to plug his nose anymore!

Also, we've been trying to get him to open his mouth to make noise instead of just a humming kind of sound. He just figured it out...Like this!



Anyway, Angela has been very interested working as speech therapist for Asher. Cute therapist, cute student!

Saturday, March 10, 2012

In the Movies

Today Axel was able to participate in a very special event! It recently came to the attention of some of the school staff where he attends that there were no safety plans or training set up for local first responders in the event they encounter a situation with a communication problem, such as with a deaf child or adult. Today there was a filming of a training video for just such a scenario.

I didn't get to watch the entire filming since we had to stay out of the way, so I don't know all the specifics. I was pretty much just asked to bring Axel and what time to be there. LOL Axel and his classmates have been practicing this in school so they all knew what was going on. I was only able to get a few pictures of the process, but it was really fun!

In the video, a group of deaf children and their mothers are a park. The children are playing and the mothers are sitting on a bench visiting when one of the children runs up to let them know one of the kids is badly hurt. They need to call 911 but how do you do that when you're deaf and calling from a cell phone? How does the 911 operator respond? (these are the things addressed in the training.) The first responders arrive, and the boy tries to tell them where to come to find the injured child. The child is treated, loaded up in the ambulance, and off they go.

Axel just had a small part in the production, but it was still very fun to participate!

Standing around discussing specifics. At one point I was given a shotgun mic and told, "Just point it at stuff". Unfortunately I didn't get to keep it very long because I couldn't do that AND keep an eye on what Axel was up to. Doggone it! I was excited to have a piece of equipment in my hand.

The filming of the first scenes were done, now it was time to film the rescue vehicles arriving. Because the call was placed by a deaf caller, they don't know what type of emergency they're responding to, so everyone comes!


When all the filming and technical stuff was done, a limo showed up to take all the actors to McDonalds!

Oh how he loved he limo! We were riding with a couple of the deaf students along with several hearing siblings and Axel's primary teacher. 

Wednesday, March 07, 2012

Spread the Word

Today is "Spread the Word to End the Word" day. In honor of that I'm going to post my annual post about hate speech.
............................

Most who know me also know that if they use the "R word" around me, or any derivative of it, I'll probably say something about it. I may, or may not, be nice about it, depending upon my mood at that particular moment. Some people I know, even family members, think it's silly for me to be irritated about it. "It's just a word...figure of speech, I don't mean anything by it." I even had one family member call her own son that, while Angela and I stood right there. Still...they think I'm overreacting.

No..I'm not. When you use that word, you're using my child as an insult. You're saying to be like her is a bad thing. That whomever you're calling a "r-d" surely would never want to be like Angela, or any other person who carries a MEDICAL DIAGNOSIS of mental retardation. That, my friends, is some incredibly insensitive thinking.

You wouldn't call people a "n-word", or a "fa**ot", or any other socially unacceptable slang term because you know they're wrong. They are words that can get you fired from a job, or sued for racial verbal harassment. Yet the "r-word" lives on. It's sickening.

Imagine my child walking through school. She will never hear one of her classmates call their friend of color a "nigger, and in her extremely racially diverse school she'll never hear someone call a friend from the middle east a "towel head", but it is EXTREMELY common for her to hear someone walk by and refer to each other as "retard".

Why is this ok? Why is it ok for you to model it for your children and why is ok for your kids to do it at school? Why is it ok to have what my daughter is be the butt of a joke every day of her life.

You may say, "Oh get over it. Grow a thicker skin." But if you're one of the people who use that word, what will you do the first time you hold your own new baby with Down Syndrome? Or your new grandchild, niece or nephew? Or you meet your boyfriends brother with Down Syndrome. Will you still use it anyway, regardless of how hurtful it is? Will you tell your own child "Grow a thicker skin child! You're going to be hearing this your whole life!!!!"

My child doesn't need to grow a thicker skin. She's been through more in her short 11 years than most adults will go through in a lifetime. What she needs is for people to be as respectful of her as they are of those of color or different religions. After all, the only difference between her and you is one tiny chromosome.

It's Time

When I first got Asher, I was told that he was schedule trained, but only wore diapers if he was taken out in the community. Otherwise during the day he was wearing underwear. Ummm I never once saw him out of a diaper when I visited the orphanage. Instead he was bundled in two disposable diapers - one on top of the other - just like all the other kids. Then there was the fact he had constant diarrhea.

Fast forward to us coming home. For two months I've been sitting him on the toilet several times per day. Sometimes I get lucky and he produces, but no matter how often we put him on the pot his diaper is always yet. Part of this is due to the urological problems he had, which we hoped were fixed during his surgery almost two weeks ago.

Which brings us to this week. We've noticed that his diaper has been dry much of the day, and a couple of days he's even woken up dry after his nap. (and he takes a very hard 2-3 hour nap!) Then we noticed that when he has to poop he is now hiding in his bedroom (and a couple of times took either my or Dean's hand and led us in there with him!) I had planned on tackling the whole potty training thing after the kitchen was done since...you know...I don't really need more stress! But yesterday we were out running errands and we passed training pants on the shelf and I thought to myself, "What the heck, we'll give it a shot!"

Today is an "at home" day. No errands that need to be run, no therapies, no nothing. It's as good a day as any to ditch the diaper and see what happens. Between my own kids and former daycare kids I've potty trained lots of little people over the years, but of course every child is different and what worked for one may not work for another. Asher catches onto things very quickly, but will he catch onto this as well? I guess I'll soon find out!

Heart Thoughts

There are two Serbian children who have been heavy on my heart the last few days. Who am I kidding? It's been more like months! Several times per day their faces come to mind.

One is little "Ivan". You can read about him here. Ivan is 10 or 11 (I forget now) and the same tiny size as Asher. Well, now that Asher has been home three months Ivan is probably smaller than Asher. Asher came home at 30 lbs. Angela was a tiny little thing, and at 9 she was much bigger than Ivan is now. . Asher is such a sensitive little guy, with feelings that are easily hurt. Ivan is the saddest child I've ever met, only his tears come with the silent cry of the orphan. Ivan, with his silent cry, frequently appears in my dreams. I watch Asher go through his  new life and picture Ivan at his side getting to do the same things; to experience life as it was meant to be. Life behind the walls of an orphanage, combined to one room day after day is not how life was meant to be lived.

And then there is "Nate". You can read about him here. I first met Nate two years ago. Nate, who has been written off by the world, carries with him a knowledge of a world we would never want to know. If you have seen this video, then you have seen where Nate spent the first eight years of his life. It was during that investigation that Nate's living conditions were discovered and he was transferred to the facility he now resides in. A friend who also met Nate recently had this to say,

"Of all the children in this orphanage, "Nate" is the one who broke my heart. He is so sweet and unassuming, and he is basically treated like furniture. I think what stood out most about "Nate" is that it seemed like he was extending attention/affection TO us rather than demanding it FROM us like the other children. There aren't words for how much I would like to see "Nate" in a family."

I have no idea if either Ivan or Nate are on the registry for international adoption. I pray they find their way into a foster home or onto the adoption registry so they can have a forever family just like Asher and Axel. Go here if you're interested in learning more about adopting from Serbia.

Monday, March 05, 2012

Happy Boy

Last week was a bit crazy around here! First there was Asher's surgery on the 24th. Over that weekend all the sheetrock, mud, taping and sanding was getting done. Needless to say, it was a messy around here. Is there really anything worse than sheetrock dust?

Why yes, yes there is! It's the dust and fumes that happen when you refinish wood floors! On Tuesday Greg the floor guy came. He and his crew were very fast and efficient, quickly patching the floors in the kitchen then sanding down the entire main level. The first coat of polyurethane was put down on Tuesday and we were all going to camp downstairs Apparently I'd forgotten just how sensitive I am to fumes! That and we didn't really know how the kids were feeling so I made a quick executive decision, packing up the kids and heading to a nearby hotel for three days while Dean stayed at the house with the dogs

Living out of a hotel while still meeting the kids' buses at home is a slightly complicated task! Fortunately the hotel had a pool which made it all worth it in the eyes of the kids.


While the hotel and everything was fun, it all proved to be a bit too stressful for little Asher. He'd only been home a little more than a month before we started dismantling the house. Then there was his surgery, and going to a hotel. The first night in the hotel Asher completely shut down, "frozen" in the middle of the room hiding behind his hand. The next morning when we came back to the house to meet busses he was SO happy and excited to see Daddy! He couldn't believe when we went back to the hotel the next night. Clearly we were crazy people in his eyes.

Finally Friday morning we packed up and came back to the house for good. The floors look absolutely beautiful! After keeping the kids out of the main level for a week, Asher was thrilled to be able to play in his room again while I started tackling all that dust. 

I spent Friday washing walls to get them ready for paint, and general clean up. Dean spent this past weekend painting, and there is still a fair amount to do.  All that's left now is to finish the painting, then next week the cabinets go in! YAY!

Here's what it all looks like on Friday:

If you look near the ceiling on this picture you can see the green we're using. Most of the main level will be this color. 



And here's the kitchen today. One more coat of paint at the cabinets can go in!