Wednesday, August 31, 2011
The Freshman
The Freshman, full of sass and frass. Just a little wound up about Freshman orientation.
Sunday, August 28, 2011
Socks
Tonight Angela had a difficult decision to make: Walk away from the T.V. and go to bed nicely, which would guarantee her some T.V. time tomorrow, OR make Mom unplug the T.V. in which case there would be no T.V. time tomorrow.
So a few minutes later, after I unplugged the t.v., Angela went storming to her room.
Angela: "Socks!"
Me: "What socks?"
Angela, "Socks in my room!"
Me: "What are you talking about...socks? What socks?"
Angela: "Socks no T.V. tomorrow!"
Ahhh....yes...Angela has expanded her vocabulary. "Socks" = "sucks".
So a few minutes later, after I unplugged the t.v., Angela went storming to her room.
Angela: "Socks!"
Me: "What socks?"
Angela, "Socks in my room!"
Me: "What are you talking about...socks? What socks?"
Angela: "Socks no T.V. tomorrow!"
Ahhh....yes...Angela has expanded her vocabulary. "Socks" = "sucks".
Saturday, August 27, 2011
New Words
I love learning new words or terminology. Not that I use them but this one I just might!
Here's my new favorite term:
"social lubricant"
Did this just make a picture come to mind? It did for me when I heard it, and it wasn't necessarily a good picture. Entertaining, yes, but not good. HA!
So what is "social lubricant"? You go to a social gathering and feeling the need to loosen up a bit you have a couple of drinks. You're a little more chatty this way, and you know you tend to have more fun. You're not drunk, but you are under the influence. The alcohol has become the "social lubricant".
But people can also be the lubricant.
You have a party and are trying to figure out who you're inviting. You know that Sue is always the life of the party. She's a lot of fun, and everyone likes her. You invite her to keep the party going. Sue is your social lubricant.
I bet you have some other fun examples of social lubricant. Wanna share?
Here's my new favorite term:
"social lubricant"
Did this just make a picture come to mind? It did for me when I heard it, and it wasn't necessarily a good picture. Entertaining, yes, but not good. HA!
So what is "social lubricant"? You go to a social gathering and feeling the need to loosen up a bit you have a couple of drinks. You're a little more chatty this way, and you know you tend to have more fun. You're not drunk, but you are under the influence. The alcohol has become the "social lubricant".
But people can also be the lubricant.
You have a party and are trying to figure out who you're inviting. You know that Sue is always the life of the party. She's a lot of fun, and everyone likes her. You invite her to keep the party going. Sue is your social lubricant.
I bet you have some other fun examples of social lubricant. Wanna share?
Thursday, August 25, 2011
Tears in Speech Therapy
Axel has speech therapy two days a week. I love his ST. Not only because she's fluent in ASL and Cued Speech, but because she's just plain a great person. And even more importantly, Axel loves her. He loves his OT too, but when we're getting ready to go he always asks, "Speech..."L"?"
One of the things Axel has been doing is choosing his activities at the beginning of the session by placing 1st, 2nd, 3rd...and now 4th cards on them. That's the order he gets to do his activities. The activity he picked first today was a sound discrimination computer game. (the name has escaped me at the moment. I'll come back and add it when it comes to me....because it will. LOL) So, Axel has to listen to a sound, then click on the picture that goes with the sound. A cow mooing, a helicopter, etc.
Then there was the sound of a cat meowing. Axel pointed to the picture of the cat and said, "mačka" which is the Serbian word for cat.
And I was instantly in tears.
To my knowledge, Axel has never said Serbian words. My Serbian friends said there was nothing recognizable. Today something was triggered that brought out a Serbian word. What other Serbian words has he said that I don't know? Oh, what a big thing this was. I don't want him to forget all of Serbia. I don't want him to forget all of his language, but we really had no idea how much of those language memories were left.
It's there. There are pieces left in there, and they're trying to come out. This is HUGE for Axel.
One of the things Axel has been doing is choosing his activities at the beginning of the session by placing 1st, 2nd, 3rd...and now 4th cards on them. That's the order he gets to do his activities. The activity he picked first today was a sound discrimination computer game. (the name has escaped me at the moment. I'll come back and add it when it comes to me....because it will. LOL) So, Axel has to listen to a sound, then click on the picture that goes with the sound. A cow mooing, a helicopter, etc.
Then there was the sound of a cat meowing. Axel pointed to the picture of the cat and said, "mačka" which is the Serbian word for cat.
And I was instantly in tears.
To my knowledge, Axel has never said Serbian words. My Serbian friends said there was nothing recognizable. Today something was triggered that brought out a Serbian word. What other Serbian words has he said that I don't know? Oh, what a big thing this was. I don't want him to forget all of Serbia. I don't want him to forget all of his language, but we really had no idea how much of those language memories were left.
It's there. There are pieces left in there, and they're trying to come out. This is HUGE for Axel.
Ummmm yeah
The Bravo device should be placed with sedation. Just say'in.
They said, "It takes under 5 minutes for the entire procedure." Well, that's if A) you have the will power of an elephant B) you don't have a strong gag reflex and c) just putting the mouth-holder-open thingy in your mouth doesn't make you claustrophobic.
And it hurts. Still hurts. Will probably hurt until the thing dislodges itself in a week or so. I'm going to go take some valium now, I think.
They said, "It takes under 5 minutes for the entire procedure." Well, that's if A) you have the will power of an elephant B) you don't have a strong gag reflex and c) just putting the mouth-holder-open thingy in your mouth doesn't make you claustrophobic.
And it hurts. Still hurts. Will probably hurt until the thing dislodges itself in a week or so. I'm going to go take some valium now, I think.
Wednesday, August 24, 2011
Where'd he go?
Every year we get tree frogs by our front door. They come because the front light is on at night, making hunting for bugs easy. The other day I posted a picture of this year's resident frog on our windowsill, and I haven't seen him since. I've looked in the previous daytime hiding spaces, like between the posts under the deck railing, and under the shutters on the bedroom window. I know he's around here somewhere!
Ok, sorry, I know you're probably tired of my tree frog pictures. LOL
Bravo!
Bravo! Bravo!
You've heard that before, right? Well, I'm not shouting it in excitement, or to express my positive opinion on a performance I've just seen.
Remember a few weeks ago when I was freaking out about having an endoscopy done? Well, the doctor was able to rule out esophageal cancer (Thank you, God!) but among the few things found in my esophagus, it was suspected based on my symptoms that I have Laryngopharyngeal Reflux, or LPR. If you read the symptoms listed on that link, I have every single one of them, the most bothersome being chronic throat clearing. I'm talking about every 50-90 seconds...twenty four hours a day. It even wakes me from a sound sleep. Many nights I've been sleeping in the recliner because 1) I wake up choking when I'm laying down and 2) Dean needs his sleep too! Needless to say, neither Dean nor I are sleeping very well, and living life in general is not very fun right now. The thought of sitting in a classroom in a couple weeks is really making me nervous. Because I can't do it. I can't not clear my throat because of all the crud that builds up in there every few seconds.
So yesterday was my follow-up visit from my endoscopy. The doctor told me, "based on your level of throat clearing (since I did it 4, 238 times during the visit) you have one of the more severe cases of LPR that I've seen, but lets get the Bravo testing done to verify that's what's going on."
So what's the Bravo business? Well, in Thursday I'll have a Bravo ph monitoring device placed in my esophagus. Now, with an endoscopy they sedate you. I had initially been freaked out that they wouldn't be able to relax me enough and I'd remember everything, but those doctors just happen to know what they're doing, and all went well. In fact, I'd do it again tomorrow since it gives me license to nap the rest of the afternoon. LOL But yesterday at my doctor appointment he told me they don't sedate for this test.
Ummm...did you watch that video? First of all, I won't be able to NOT clear my throat long enough for them to put it in and secondly, HELLO! Anyone ever heard of a gag reflex????
So that's on Thursday.
Then on Friday I have a video swallow test done, along with an esophagram, both tests that Angela has had done about a thousand times. They're pretty simple, painless tests, that involve just drinking some barium, and swallowing some cracker also laced with barium. These tests are being done because of the difficulty I've been having swallowing the past few months, including food getting caught near my larynx on the way down. (similar to what happens with Angela's achalasia as seen during esophageal manometry testing which was done at Boston Children's. )
So what will we find out from all of this? Well, since my esophagus shows only a few changes indicative of Gastroesophageal Reflux Disease (GERD), yet I have chronic throat clearing and a feeling of constant phlegm in my throat, the Bravo testing will give a definitive answer. With LPR, it's pretty common to not have symptoms of heartburn, so it's often referred to as "silent reflux". Funny...Angela had horrible silent reflux as an infant which, along with repeated bouts of aspiration pneumonia which are what led to her having a nissen fundoplycation when she was 11 months old.
I'm anxious to get this testing done. This problem has gotten so bad that it's hard to even carry on phone conversations, much less sit in a meeting or a class.
You've heard that before, right? Well, I'm not shouting it in excitement, or to express my positive opinion on a performance I've just seen.
Remember a few weeks ago when I was freaking out about having an endoscopy done? Well, the doctor was able to rule out esophageal cancer (Thank you, God!) but among the few things found in my esophagus, it was suspected based on my symptoms that I have Laryngopharyngeal Reflux, or LPR. If you read the symptoms listed on that link, I have every single one of them, the most bothersome being chronic throat clearing. I'm talking about every 50-90 seconds...twenty four hours a day. It even wakes me from a sound sleep. Many nights I've been sleeping in the recliner because 1) I wake up choking when I'm laying down and 2) Dean needs his sleep too! Needless to say, neither Dean nor I are sleeping very well, and living life in general is not very fun right now. The thought of sitting in a classroom in a couple weeks is really making me nervous. Because I can't do it. I can't not clear my throat because of all the crud that builds up in there every few seconds.
So yesterday was my follow-up visit from my endoscopy. The doctor told me, "based on your level of throat clearing (since I did it 4, 238 times during the visit) you have one of the more severe cases of LPR that I've seen, but lets get the Bravo testing done to verify that's what's going on."
So what's the Bravo business? Well, in Thursday I'll have a Bravo ph monitoring device placed in my esophagus. Now, with an endoscopy they sedate you. I had initially been freaked out that they wouldn't be able to relax me enough and I'd remember everything, but those doctors just happen to know what they're doing, and all went well. In fact, I'd do it again tomorrow since it gives me license to nap the rest of the afternoon. LOL But yesterday at my doctor appointment he told me they don't sedate for this test.
Ummm...did you watch that video? First of all, I won't be able to NOT clear my throat long enough for them to put it in and secondly, HELLO! Anyone ever heard of a gag reflex????
So that's on Thursday.
Then on Friday I have a video swallow test done, along with an esophagram, both tests that Angela has had done about a thousand times. They're pretty simple, painless tests, that involve just drinking some barium, and swallowing some cracker also laced with barium. These tests are being done because of the difficulty I've been having swallowing the past few months, including food getting caught near my larynx on the way down. (similar to what happens with Angela's achalasia as seen during esophageal manometry testing which was done at Boston Children's. )
So what will we find out from all of this? Well, since my esophagus shows only a few changes indicative of Gastroesophageal Reflux Disease (GERD), yet I have chronic throat clearing and a feeling of constant phlegm in my throat, the Bravo testing will give a definitive answer. With LPR, it's pretty common to not have symptoms of heartburn, so it's often referred to as "silent reflux". Funny...Angela had horrible silent reflux as an infant which, along with repeated bouts of aspiration pneumonia which are what led to her having a nissen fundoplycation when she was 11 months old.
I'm anxious to get this testing done. This problem has gotten so bad that it's hard to even carry on phone conversations, much less sit in a meeting or a class.
Tuesday, August 23, 2011
This is why
This is why I should not even be attempting human forms. Check out these babies by Camille Allen. Unbelievable.
Call it what it is
It's ok to say I'm obsessed with making heads and faces right now. It's the eyes...they eyes are bothering me. There are many dolls on the market which are labeled as "Down syndrome dolls", but people who know DS better than anyone will tell you a lot of those dolls don't really look like they have Ds. I've seen one that looked like it was a someone who'd been in a car wreck, and really I considered it an insult that this doll was being marketed to our kids as one that "looked like them".
Now, I don't have a clue what I'm doing. You know that, right? I'm lacking a couple important tools for one thing, but they'll have to wait. Fortunately polymer clay doesn't dry out until you bake it so it will wait for me to get a couple more tools. It also means I can come back and do the eyes again, and again, and again....not a good thing! LOL
So those faces, they're hard to do. Well, I don't really know what I'm going in the first place but still. And we all know that all people with DS are not alike. While their eyes might have similar traits, they're not exactly the same. Look at Angela's eyes, which are the more common almond shape, compared to Axel's which are anything but! Angela also has epicanthal folds, while Axel does not. Angela has almost no nasal bridge, where Axel's is more developed, Angela's mid-face is flatter, Axel's has more fullness.
Now, I don't have a clue what I'm doing. You know that, right? I'm lacking a couple important tools for one thing, but they'll have to wait. Fortunately polymer clay doesn't dry out until you bake it so it will wait for me to get a couple more tools. It also means I can come back and do the eyes again, and again, and again....not a good thing! LOL
So those faces, they're hard to do. Well, I don't really know what I'm going in the first place but still. And we all know that all people with DS are not alike. While their eyes might have similar traits, they're not exactly the same. Look at Angela's eyes, which are the more common almond shape, compared to Axel's which are anything but! Angela also has epicanthal folds, while Axel does not. Angela has almost no nasal bridge, where Axel's is more developed, Angela's mid-face is flatter, Axel's has more fullness.
And so I continue to mess with the polymer, often in the middle of the night. My time is running out though, because school starts two weeks from today, and then I'll be up all night doing homework, not playing with clay. But I'll give you a sneak peak. (which looks nothing like anyone I know! LOL)
Sunday, August 21, 2011
Fairies
Ok, I still have a long way to go, but they're getting better. At least this one sort of resembles a human form. LOL I made a different one a couple weeks ago, and her arms and feet are better than this one, but she doesn't have hair, and her wings need to be redone. This one isn't very photogenic. I think it's like of like High Def. T.V. People look much better in person than they do in high def!
Wednesday, August 17, 2011
AAI, AOI and the DS community
If you're part of the the Down syndrome community, and you have a child who has Atlanto-axial Instability (AAI) or Atlanto-occipital Instability (AOI) and either had spinal fusion surgery, will have fusion surgery, or is on precautions because of questionable instability, please contact me ASAP at deanleah@comcast.net. If you're in the community, please help me spread this around by posting on your Facebook pages, your blogs or wherever it will get seen! I'll have more to post on this in a couple of days.
THANK YOU!
THANK YOU!
Tuesday, August 16, 2011
Why did we adopt?
There were many reasons we chose to adopt. (in no particular order)
1) We can
2) We have space
3) There are kids who need homes
4) We have plenty of love to give
But I will admit to having some selfish reasons too. It's ok to be selfish sometimes, as long as others benefit from your selfishness. My top selfish reason was so I don't have to play catcher anymore. I think the kids are o.k. with that.
1) We can
2) We have space
3) There are kids who need homes
4) We have plenty of love to give
But I will admit to having some selfish reasons too. It's ok to be selfish sometimes, as long as others benefit from your selfishness. My top selfish reason was so I don't have to play catcher anymore. I think the kids are o.k. with that.
Because I am brave
I am a brave warrior woman, but mice? I hate them. They totally freak me out, and ever since the great mouse-in-my-cereal incident of 2008, I'm very paranoid about these things. It is no surprise then, that a week or so ago when a mouse ran out from under the closed garage door and right in front of my feet, that I screamed a little bit. And then I made Dean put out a bunch of traps, and we've caught a few mice since then. This is called living in the woods people. The mice are every where.
Mice attract mice eaters.
So this morning I was visiting on the phone with a friend, and I had Axel bring one of his new trucks out on the driveway to play because it's very noisy. I am not against noisy toys, I just like them better in the outdoors where the sound has somewhere to go other than my ears. While my friend and I chatted, I played "stop that truck" by blocking it's path down one of the three very steep hills, which Axel thought was hilarious, of course. Since Angela wasn't out with us, Axel soon became bored and asked to go in the house (so he could pester HER with the noise.)
When I'm on the phone, I have a tendency to pace. I've watched my mom do this, so I'm blaming her for this learned behavior. When it's nice outside, this "pacing" might cause me to walk down the driveway to the mailbox, or just stand out on the front step, or just generally wander aimlessly. It was as I was stepping off the front step onto the driveway that the SNAKE crawled right next to my foot.
Pretty sure I screamed.
A little.
And then I did that "Oh my God that was a SNAKE!" shiver reflex thing. That is because God has taught us snakes are BAD for a reason. Because they ARE!
I ran in the house.
Now what? Where did it go? I looked out the kitchen window and saw the snake sitting right next to the deck. I stepped outside and it slithered (ewwwwwwwww) under a railroad tie.
OMG they are just SO GROSS!
And yet there is that slight fascination thing, and OH OH OH...blogging moment! And my camera is right there on the kitchen table just waiting for a moment such as this.
I went outside to look....carefully stepping out onto the pavement. Have to be very careful because it might jump out at me or something. Pretty sure snakes can jump.
BLEHHHHHHH I don't want to look.
There he is. I can just barely see his head in the darkness of a hole that has been dug under the railroad tie. He's just looking at me, waiting for me to walk away so he can get back to his goal of the garage and whatever mouse he smells in there.
I need my zoom lens, so I run as fast as I can (careful to take as few steps as possible so as to not become a target for the snake.) to find my zoom, then run back outside.
He's still there. I can't believe I'm sitting here taking pictures of a SNAKE because they are so GROSS but I MUST because....well because! The pictures are not focused very well because that darned snake was getting ready to jump at me, just I know it.
Just look at those creepy little eyes. I think it's time to rip the deck off the house so there's nowhere for these guys to hide.
Sunday, August 14, 2011
On Sibling Bonding
About a month ago, the sibling honeymoon we'd been enjoying in our house ended. We made it about 6 weeks longer than is typical. Well, ok there really isn't anything you can consider "typical" with an international adoption of an older child and subsequent sibling bonding. Our family was doing quite well, actually, and I was basically waiting for the proverbial crap to hit it's fan.
Part of the reason things were going so well, I think, is because Angela was still in her same routine she'd been in before we brought Axel home. She'd come home from school then disappear to the basement where she would re-enact her entire school day. Once we found out about Axel's AAI, we no longer allowed him to go downstairs without one of us present. First of all, stairs were still new to him so he wasn't safe and secondly, that big sister doesn't know her own strength!
Axel would stand at the top of the stairs, looking down into the abiss with a long, sad look on his face. He wanted so badly to play with his big sister, and be part of her imaginary parties down there. She really gets lost in her world down there, and it can be difficult to get her to interract with us when the imaginary people are more interesting. Often I would go to the basement and ask her to please come play with Axel for a bit, that he missed her when she was at school. She would act like she'd forgotten he was here, and be excited to come upstairs and cause a ruckus with him. Oh how he would laugh when they did. He loves his big sister so. Sometimes, when Angela was at school, Axel got a little better with the steps, I would hold him steady so he could be downstairs while I was doing laundry or something. Still, he couldn't be left alone with her down there. (It goes back to that strength thing.) But when they played, they played very well together most of the time.
When Axel had his surgery, there were no stairs at allowed at all. He wasn't stable on them before his surgery, and then with the halo he couldn't see his feet. Bad combination.
So about a month ago, we were sitting at the dinner table, Axel babbling in Axelese, when Angela got upset. "Stop it. Stop that noise. Stop looking at me. Stop. Stop. Stop saying bhejdggiwt. Stop saying kay. Stop."
Did it read like someone obsessed? Because Angela really was. Axel couldn't do anything right. He tried so hard to connect with Angela and she would just get angry right away.
The last couple weeks before Axel got his halo off, I started bringing him downstairs periodically so he could hang out with her a bit and I could get some laundry done. But I had another motive: When that halo came off, Angela's personal queendom that is the basement was going to be invaded by the prince! She was going to need some trial periods to get used to it. The results were worrisome.
Lets see...one time I thought I heard tears, only to walk into the room and find Axel on his back like a turtle, looking a bit shell-shocked with big tears rolling down his face, with Angela sitting on the couch, tongue in her cheek avoiding all eye contact with me.
Me: "What happened to Axel? Why is he on the floor?"
Angela: "I'm don't know."
Me: "Well he didn't get there by himself, and he didn't make himself cry. What did you do?"
Angela: "Axel pushed me."
Me: "Axel pushed you, so he's on the floor?" (Axel is afraid to defend himself or start anything with her so I know this isn't true.)
Angela: "Maybe."
Me: "Maybe what?"
Angela: "Maybe don't push Axel next time."
Me: "You know, when Axel gets his halo off, he's going to be down here all the time. Now is a good time practicing how to be nice to your brother."
Ok, so this is fairly normal sibling stuff, but the potential for injury is huge for Axel. And frankly, this wasn't in my plan. They were to love each other like best friends, not hate like siblings sometimes do. There are lots of variables as well that are not typical, like the fact Axel has been getting A LOT of my attention what with halo care and help with just about everything. She was hearing a lot of, "Hang on a sec, I have to finish helping Axel."
Then that little brother got even MORE attention! He and I went on a plane without her to get his halo off. Everyone was talking about the halo. I'm sure to Angela it sounded a lot like this:
The problems escalated to a point that I knew it was time to consult our in-home behavioral specialist. I did talk to Angela about the fact Axel is learning to talk, and we need to be patient with that. "And remember, there are a lot of times when we have trouble understanding you, but we don't stick our tongues out at you." (not that I haven't wanted to on occasion!)
The day Axel and I came home from Philly and the halo removal, Angela spent the day hanging out with our PCA. At one point Angela said the PCA, "Umm, Dianna? I don't think Axel should come downstairs." She knew the inevitable was coming and she wasn't looking forward to it.
Angela was asleep when we got home from the airport, so we didn't see her until the next morning. Angela was SO VERY EXCITED to see Axel without his halo. She hugged him. She kissed his head.
And they have been playing fantastically ever since.
I have a couple of theories: Angela never said much about the halo. She was there with us when he had his surgery, and Dean and I made a point of dividing our time between the kids so she got some undivided attention as well. But I wonder....since she never said anything about it...if that halo really bothered her? Like maybe she was freaked out about it but didn't have the words to say so? (although, she often tells me something "freaked her out".)
The other thing is, with his halo Axel was very limited in what he could do. Because it's been so hot, only rarely could he be outside, and when he was he couldn't DO anything out there. Angela's been waiting for someone to play on our playground with her, but Axel couldn't do that. She was still bored, and it was his fault. I think this was annoying to her. It didn't help that when they played I was constantly looking out the window, "Axel can't do that. When his halo comes off he can, but not yet." I'm sure I was driving her crazy.
But now the halo is off, and the two of them are busy busy busy. Angela isn't spending near as much time in the basement. It used to be we wouldn't know when she got up in the morning, because she's just stay downstairs. She was really isolating herself a lot, and neither Dean or I were sure what to do with it. Apparently God knew.
Now as soon as Angela gets up she's coming to get Axel for "a venture" and off they go. Axel is up and down the stairs like he's been doing it all his life, and he's loving hanging out in the basement with Angela. And, because he can move now, and not wearing that freakish halo, she seems happy to have him there. They spent a couple hours yesterday playing outside together in the fort, happy as can be.
Today I discovered the most fascinating thing of all.
Angela has a specific self-stimming activity she does when she's watching TV. She has this toy that looks like a miniature tractor tire (actually, I think it was a dog chew toy at one time but my dogs didn't like it. LOL) She will sit on the floor and roll it ahead of her to what seems to be just out of her reach, then lunge for it (but her butt never leaves the floor.) Then pick it up and kind of give it a toss, then repeat the whole sequence. Occasionally I have noticed Axel try to imitate a couple of Angela's stimming activities. Like, "Wow, she really likes doing that, maybe it's fun? I'll give it a try." only to get a look on his face because it clearly doesn't work for him. LOL
This morning I noticed it had gotten quiet downstairs, so I snuck down to take a peak. Angela has changed her tire stim! They're now rolling it back and forth between them. I'm sure this is a new honeymoon phase, and in a few weeks I'll be pulling my hair out again, but for now Axel has brought Angela out of one of her worlds.
Part of the reason things were going so well, I think, is because Angela was still in her same routine she'd been in before we brought Axel home. She'd come home from school then disappear to the basement where she would re-enact her entire school day. Once we found out about Axel's AAI, we no longer allowed him to go downstairs without one of us present. First of all, stairs were still new to him so he wasn't safe and secondly, that big sister doesn't know her own strength!
Axel would stand at the top of the stairs, looking down into the abiss with a long, sad look on his face. He wanted so badly to play with his big sister, and be part of her imaginary parties down there. She really gets lost in her world down there, and it can be difficult to get her to interract with us when the imaginary people are more interesting. Often I would go to the basement and ask her to please come play with Axel for a bit, that he missed her when she was at school. She would act like she'd forgotten he was here, and be excited to come upstairs and cause a ruckus with him. Oh how he would laugh when they did. He loves his big sister so. Sometimes, when Angela was at school, Axel got a little better with the steps, I would hold him steady so he could be downstairs while I was doing laundry or something. Still, he couldn't be left alone with her down there. (It goes back to that strength thing.) But when they played, they played very well together most of the time.
When Axel had his surgery, there were no stairs at allowed at all. He wasn't stable on them before his surgery, and then with the halo he couldn't see his feet. Bad combination.
So about a month ago, we were sitting at the dinner table, Axel babbling in Axelese, when Angela got upset. "Stop it. Stop that noise. Stop looking at me. Stop. Stop. Stop saying bhejdggiwt. Stop saying kay. Stop."
Did it read like someone obsessed? Because Angela really was. Axel couldn't do anything right. He tried so hard to connect with Angela and she would just get angry right away.
The last couple weeks before Axel got his halo off, I started bringing him downstairs periodically so he could hang out with her a bit and I could get some laundry done. But I had another motive: When that halo came off, Angela's personal queendom that is the basement was going to be invaded by the prince! She was going to need some trial periods to get used to it. The results were worrisome.
Lets see...one time I thought I heard tears, only to walk into the room and find Axel on his back like a turtle, looking a bit shell-shocked with big tears rolling down his face, with Angela sitting on the couch, tongue in her cheek avoiding all eye contact with me.
Me: "What happened to Axel? Why is he on the floor?"
Angela: "I'm don't know."
Me: "Well he didn't get there by himself, and he didn't make himself cry. What did you do?"
Angela: "Axel pushed me."
Me: "Axel pushed you, so he's on the floor?" (Axel is afraid to defend himself or start anything with her so I know this isn't true.)
Angela: "Maybe."
Me: "Maybe what?"
Angela: "Maybe don't push Axel next time."
Me: "You know, when Axel gets his halo off, he's going to be down here all the time. Now is a good time practicing how to be nice to your brother."
Ok, so this is fairly normal sibling stuff, but the potential for injury is huge for Axel. And frankly, this wasn't in my plan. They were to love each other like best friends, not hate like siblings sometimes do. There are lots of variables as well that are not typical, like the fact Axel has been getting A LOT of my attention what with halo care and help with just about everything. She was hearing a lot of, "Hang on a sec, I have to finish helping Axel."
Then that little brother got even MORE attention! He and I went on a plane without her to get his halo off. Everyone was talking about the halo. I'm sure to Angela it sounded a lot like this:
The problems escalated to a point that I knew it was time to consult our in-home behavioral specialist. I did talk to Angela about the fact Axel is learning to talk, and we need to be patient with that. "And remember, there are a lot of times when we have trouble understanding you, but we don't stick our tongues out at you." (not that I haven't wanted to on occasion!)
The day Axel and I came home from Philly and the halo removal, Angela spent the day hanging out with our PCA. At one point Angela said the PCA, "Umm, Dianna? I don't think Axel should come downstairs." She knew the inevitable was coming and she wasn't looking forward to it.
Angela was asleep when we got home from the airport, so we didn't see her until the next morning. Angela was SO VERY EXCITED to see Axel without his halo. She hugged him. She kissed his head.
And they have been playing fantastically ever since.
I have a couple of theories: Angela never said much about the halo. She was there with us when he had his surgery, and Dean and I made a point of dividing our time between the kids so she got some undivided attention as well. But I wonder....since she never said anything about it...if that halo really bothered her? Like maybe she was freaked out about it but didn't have the words to say so? (although, she often tells me something "freaked her out".)
The other thing is, with his halo Axel was very limited in what he could do. Because it's been so hot, only rarely could he be outside, and when he was he couldn't DO anything out there. Angela's been waiting for someone to play on our playground with her, but Axel couldn't do that. She was still bored, and it was his fault. I think this was annoying to her. It didn't help that when they played I was constantly looking out the window, "Axel can't do that. When his halo comes off he can, but not yet." I'm sure I was driving her crazy.
But now the halo is off, and the two of them are busy busy busy. Angela isn't spending near as much time in the basement. It used to be we wouldn't know when she got up in the morning, because she's just stay downstairs. She was really isolating herself a lot, and neither Dean or I were sure what to do with it. Apparently God knew.
Now as soon as Angela gets up she's coming to get Axel for "a venture" and off they go. Axel is up and down the stairs like he's been doing it all his life, and he's loving hanging out in the basement with Angela. And, because he can move now, and not wearing that freakish halo, she seems happy to have him there. They spent a couple hours yesterday playing outside together in the fort, happy as can be.
Today I discovered the most fascinating thing of all.
Angela has a specific self-stimming activity she does when she's watching TV. She has this toy that looks like a miniature tractor tire (actually, I think it was a dog chew toy at one time but my dogs didn't like it. LOL) She will sit on the floor and roll it ahead of her to what seems to be just out of her reach, then lunge for it (but her butt never leaves the floor.) Then pick it up and kind of give it a toss, then repeat the whole sequence. Occasionally I have noticed Axel try to imitate a couple of Angela's stimming activities. Like, "Wow, she really likes doing that, maybe it's fun? I'll give it a try." only to get a look on his face because it clearly doesn't work for him. LOL
This morning I noticed it had gotten quiet downstairs, so I snuck down to take a peak. Angela has changed her tire stim! They're now rolling it back and forth between them. I'm sure this is a new honeymoon phase, and in a few weeks I'll be pulling my hair out again, but for now Axel has brought Angela out of one of her worlds.
Saturday, August 13, 2011
Power Tools: 3rd edition
Back in 2008, and again in 2009, I posted about power tools. Sometimes those tools fall along the same lines as kitchen appliances, sculpting tools, and cake decorating gadgets. One of those power tools is called a "pressure washer". I secretly love using the pressure washer. I would rather play with that than cook. Well, ok there are lots of things I would rather do than cook. Pretty much anything, but playing working with the pressure washer is right up there near the top of the list.
Today Dean borrowed the neighbors pressure washer to get some much needed clean-up done. I watched through the window as he made horrible swirly marks on the cement and the wood deck.
...........sigh...........
I would need to show him how to make controlled, straight lines without leaving any gaps, (in other words, no stripes!) on the surface being cleaned.
He handed me the wand with a slight huff, knowing there was really no point in arguing with me.
He almost didn't get the wand back because...well...I like it. I'm now sitting here blogging about it rather than staring at him until he gives up and turns it over to me. So really, I'm doing him a favor by blogging right now. I better get back to work cleaning though or we might have other issues.
Today Dean borrowed the neighbors pressure washer to get some much needed clean-up done. I watched through the window as he made horrible swirly marks on the cement and the wood deck.
...........sigh...........
I would need to show him how to make controlled, straight lines without leaving any gaps, (in other words, no stripes!) on the surface being cleaned.
He handed me the wand with a slight huff, knowing there was really no point in arguing with me.
He almost didn't get the wand back because...well...I like it. I'm now sitting here blogging about it rather than staring at him until he gives up and turns it over to me. So really, I'm doing him a favor by blogging right now. I better get back to work cleaning though or we might have other issues.
A boy
Once upon a time, On August 13th, 2000, in the bustling town of Kragujevac, Serbia, a baby was born. A boy. His parents and older brother were very excited! They named him Djordje. The family loved that boy so much! When the doctor came into the room and said, "This baby has Down syndrome." and walked away, the family was left confused...and devestated.
Today I remember Axel's birth family. As we celebrate Axel's birth 11 years ago, they are also mourning the loss of Djordje. There is much to his story I will never be able to tell here, but I do know this: Axel's birth family loved him enough to know there was a better life for him on the other side of the world.
In May when I met Axel's birth family, I held the woman with whom I share a child. We will forever be connected through Axel Djordje.
Since then, through pictures, emails and blog posts, they have watched him grow and change. They watched him get on the bus for his first ever day of school. They've watched through tears as he went through spinal fusion and the agony of living in a halo. They cried tears of joy right along with all of you when Axel got his halo off.
Today, as we celebrate this beautiful boy, we also remember his other family. His first family who loved him so much they let him go.
Axel Djordje is a boy twice blessed, with two families who love him very much. Today, his 11th birthday, we sit on opposite sides of the world celebrating his birth.
Today I remember Axel's birth family. As we celebrate Axel's birth 11 years ago, they are also mourning the loss of Djordje. There is much to his story I will never be able to tell here, but I do know this: Axel's birth family loved him enough to know there was a better life for him on the other side of the world.
In May when I met Axel's birth family, I held the woman with whom I share a child. We will forever be connected through Axel Djordje.
Since then, through pictures, emails and blog posts, they have watched him grow and change. They watched him get on the bus for his first ever day of school. They've watched through tears as he went through spinal fusion and the agony of living in a halo. They cried tears of joy right along with all of you when Axel got his halo off.
Today, as we celebrate this beautiful boy, we also remember his other family. His first family who loved him so much they let him go.
Axel Djordje is a boy twice blessed, with two families who love him very much. Today, his 11th birthday, we sit on opposite sides of the world celebrating his birth.
Friday, August 12, 2011
Birthweek
This is not Axel's birthday, it is his birthweek, and the celebrations are happening accordingly.
On Weds evening, after his halo removal, my friend Colleen had a birthday party him! Oh what fun we had! The best part of all (for me) was getting to meet some fellow parents of kids with DS who I've only known from the internet.
First there was the wading pool. Axel wasn't really supposed to get his head wet yet since his pin hole are still open, AND I wasn't ready to try changing his neck brace yet. We just pretended he wasn't "that" wet.
Just try to tell me he wasn't ready to be in the water! You can see his bobble head impersonation too. LOL, Oh and do you think he was excited to be able to move his head?
You saw little Mark in the video. He's 3 1/2, and the next morning was going in for an MRI to determine how bad his AAI is, and weather or not he's going to nee surgery. Please keep him in your prayers!
Then it was time for the cake and icecream part. Last week I was looking back on my adoption blog, and found that at some time his foster family mentioned that they'd celebrated his 9th birthday for him. I don't know what the Serbian customs are for birthdays, so I don't know what all that entailed. At very least, this was his first American birthday with friends! He'd gotten to see Dean's, Angela's, my and Noah's birthdays with cakes and candles, and he clearly new what to do! Look how excited he was to have a day all about HIM!
Now, the birthweek isn't done yet. We have more to come this weekend!
On Weds evening, after his halo removal, my friend Colleen had a birthday party him! Oh what fun we had! The best part of all (for me) was getting to meet some fellow parents of kids with DS who I've only known from the internet.
First there was the wading pool. Axel wasn't really supposed to get his head wet yet since his pin hole are still open, AND I wasn't ready to try changing his neck brace yet. We just pretended he wasn't "that" wet.
Skinny boy, ready to get wet!
Just try to tell me he wasn't ready to be in the water! You can see his bobble head impersonation too. LOL, Oh and do you think he was excited to be able to move his head?
You saw little Mark in the video. He's 3 1/2, and the next morning was going in for an MRI to determine how bad his AAI is, and weather or not he's going to nee surgery. Please keep him in your prayers!
Then it was time for the cake and icecream part. Last week I was looking back on my adoption blog, and found that at some time his foster family mentioned that they'd celebrated his 9th birthday for him. I don't know what the Serbian customs are for birthdays, so I don't know what all that entailed. At very least, this was his first American birthday with friends! He'd gotten to see Dean's, Angela's, my and Noah's birthdays with cakes and candles, and he clearly new what to do! Look how excited he was to have a day all about HIM!
I'm missing pictures of Baby Christian who came with his mom Lavette. He is just 2 months old and has DS. He is THE CUTEST BABY EVER!!!! Oh my gosh! It was nice to meet him and get my baby fix.
Thank you so much to Colleen and Nolan for all the help you've been to us. Colleen picks us up at the airport, drops us off at the hospital, brings us back to the airport, AND squeezes in fun stuff for us to do, not to mention planning this special day for Axel. Colleen's mom Dottie let us have the party at her house in her beautiful yard, which was so niche and relaxing. And Maureen and Lavette, thank you too for adding to Axel's special day!
Now, the birthweek isn't done yet. We have more to come this weekend!
The Change-Up
Below is a email that went out to members of the National Down Syndrome Congress. Please feel free to pass along!
And my thoughts: Can you imagine the same scenes, and the lines were, "Why aren't they talking - what are they (insert and racial slur here.)" Or how about, "This one, he looks (insert racial group)" I wonder how the movie would go over then? That's easy to say! The movie wouldn't have even made it to the screen.
And my thoughts: Can you imagine the same scenes, and the lines were, "Why aren't they talking - what are they (insert and racial slur here.)" Or how about, "This one, he looks (insert racial group)" I wonder how the movie would go over then? That's easy to say! The movie wouldn't have even made it to the screen.
....................................................................
Dear Friends,
Last Friday, as many of us were enjoying the fun and fellowship of the NDSC Convention in San Antonio, Universal Pictures released the film, "The Change-Up".
According to reports, lines in the film attributed to the Ryan Reynolds' character include: "Why aren't they talking - what are they retarded?" and "This one, he looks Downsy" in referring to two young children in the film.
Though no one at the NDSC has seen the film (nor do we wish to, at this point), the comments we've heard - and the lack of a response to the contrary from the Studio - indicate that Universal has engaged in bigotry for laughs. While we don't want to use our national platform to publicize or promote this movie in any way, we do want parents to be aware of this content, so those who choose to see it aren't taken by surprise by these words, which could be painful, if they are heard out of the blue.
What can you do? If you're on Facebook, add your comments to the pages of Universal Pictures (http://www.facebook.com/UniversalPictures) and the movie itself (https://www.facebook.com/thechangeup). Although there are reports that negative comments on these social media sites are being removed, it's still worthwhile to add yours for them to see. Likewise, you can share your feelings on your own Facebook page and/or Twitter account, asking all of your friends and followers to please not go see the film.
Though it is unlikely that Universal will pull the movie, as they have millions already invested, changes and/or additions can be made to the film before its release on DVD, as occurred with "Tropic Thunder". Consider writing the producer and director at the addresses below, and in your own words sharing with them why you find the language in their film so hurtful. Also, while you may or may not wish to ask them to pull the film, please definitely ask them to edit the film prior to its release on DVD to remove the outrageous scene mentioned above. Failing that, you can ask that they add a PSA from Special Olympics "End the Word" campaign, or the NDSC's "We're More Alike" series.
Neal H. Moritz David Dobkin
Producer, "The Change Up" Director, "The Change Up"
Original Film Universal Pictures
5930 West Jefferson 825 8th Avenue
Los Angeles, CA 90016 New York, NY 10019
Though sometimes it feels like we're spinning our wheels, your advocacy is making a difference. Please make your voice heard.
David Tolleson
Executive Director
National Down Syndrome Congress
1370 Center Drive, Suite 102 · Atlanta, GA 30338
770/604-9500 · 800/232-6372 · 770/604-9898 (Fax)
Wednesday, August 10, 2011
How it went down
I spent the morning with Axel posting the chain of events on Facebook. Since not all of you follow me there, I'm going to repost it all here, along with more specific details I couldn't post on FB!
Axel woke up in this morning and said, "Halo off." But I wasn't sure...was he repeating a phrase or did he REALLY understand what "halo off" means?
I have to laugh at the rest of the pictures. They're all basically the same just a change of scenery, clothing, and hardward. LOL
My tears for the morning started when I took Axel's halo shirt off. You may remember back that first I had to figure out how to modify his shirts to fit in/around the halo fram. He can't put them on himself because he has to step in and out of them. They don't go on over his head. Then once we pull them up we velcro them through the upright posts. The shirts have to be washed separately because the velcro catches on everything in the machines and wrecks any other clothing in with them. And, he only had three t-shirts and one long-sleeved shirt that I'd modified. My tears about the halo shirt were...I think...related to the change in stress level, not to mention one less hassle in the process that we will never again have to deal with.
We got his gown on. Not even hospital gowns work around the halo frame. Oh how I loathed that thing! One little thing I don't think I've ever told you about the halo frame. Attached to the back of the plastic shell was a wrench that was velcroed in place. A wrench? Yes! It stayed with him AT ALL TIMES!!! If he were to ever choke the wrench is to be used to take the halo off FAST in order to perform the Heimlich maneuver. Getting him dressed and undressed every day was a reminder just how scary the halo can be.
He got a bear. Axel LOVES stuffed animals, and is the only child I've ever had who actually plays with them. He talks to them, cares for them, worries over them if they're sick. This bear is good and squishy too. The bear did end up wearing half of the silly goose medicine since Axel didn't really care for it. LOL He's such a good and tolerant bear, just like his new owner.
When Dr. Samdani came in to talk to us before surgery, I started crying as soon as I saw him. He is the nicest, most compassionate man! He put his arm around me as I tried to collect myself and pretend I wasn't really crying. I was just so overwhelmed. I don't get why I was like this today, and it kind of surprised Dr. S. too I think. LOL "It's not you, it's me." I said. LOL
Our first picture post halo!!!!! They weighed Axel before giving him the pre-op sedative, and he's gained another 5 lbs since we were here 6 weeks ago. However, I think that when they calculated his anesthesia dosages, they gave him a dose based on his TOTAL weight, including the halo which weighs 7 lbs. He took a LONG time to wake up!! The nurse said, "Well, he can leave any time...if he'd ever wake up!" LOL
For the first time in 3 months I was able to his him without getting impaled by the halo pins. I stroked his hair ALL over. I rubbed his chest and tummy, and when he rolled to his side I rubbed his back. All places he hasn't had anyone touch since May.
I cried some more.
It took him and hour and a half, and he still wasn't able to walk or even sit up at that point. He was just a drunken sailor. This picture was taken down in the orthotists office where we had to go get the brace adjusted. He may look good here, but see how I have him propped against the arm of the chair???? As soon as I snapped the picture he flopped forward. He has ZERO control of his neck, just like a newborn baby, and it will take several weeks for him to regain any control or strength.
From there we had to go to xray for a new set so the hardware that's inside his neck, along with new bone growth, can be evaluated. Getting the xray was interesting since he had no ability to sit up at that point!
Here we are waiting for our cab to come. I wondered how I would get him to walk into the cab, THEN up the steps into my friend Colleen's house. Fortunately the cabby was a driver we've had many times (the same one who bought me one of those huge pretzels last time we were here.) He's very nice, and was very helpful getting Axel into the cab. But Axel had recognized him and was excited to see him so he was more willing to walk with *slightly* less support. LOL
Video of the wobbly boy. At the end when I jumped it was because he was gonna fall over! I don't know if you can see it in the video, but he's staggering when he walks. LOL
And what did he need most? A BATH!!!!!!! While he was busy playing on the floor with toys I snuck into the bathroom and ran a bubble bath. When I brought him in there he said, "Bahwvhueo bath! Aheksidioah bubbles!!!!" This grin stayed on his face the WHOLE time.
Axel is a very skinny boy, and while he's had some waisting of his upper body (because the halo vest was doing all the work) his shoulders have gained a lot of muscle.
To say he loved his bath is an understatement. He was sensory seeking like crazy, rubbing his belly and shoulders all over the place. It will be a few days before I can give him a much needed hair wash. I have to wait until the holes from the pins are closed and scabbed over.
His restrictions at this point are, "No contact sports (think we're going to need to talk to Angela about this) or anything where he'd really jar his neck." Otherwise he can do anything he feels like doing! Running, jumping, climbing, it's all good!!!!
Thank you all SO MUCH for your love, support and prayers through this.
Axel woke up in this morning and said, "Halo off." But I wasn't sure...was he repeating a phrase or did he REALLY understand what "halo off" means?
6:10 a.m. our buddy Nolan and Axel on the way to the hospital.
I have to laugh at the rest of the pictures. They're all basically the same just a change of scenery, clothing, and hardward. LOL
My tears for the morning started when I took Axel's halo shirt off. You may remember back that first I had to figure out how to modify his shirts to fit in/around the halo fram. He can't put them on himself because he has to step in and out of them. They don't go on over his head. Then once we pull them up we velcro them through the upright posts. The shirts have to be washed separately because the velcro catches on everything in the machines and wrecks any other clothing in with them. And, he only had three t-shirts and one long-sleeved shirt that I'd modified. My tears about the halo shirt were...I think...related to the change in stress level, not to mention one less hassle in the process that we will never again have to deal with.
We got his gown on. Not even hospital gowns work around the halo frame. Oh how I loathed that thing! One little thing I don't think I've ever told you about the halo frame. Attached to the back of the plastic shell was a wrench that was velcroed in place. A wrench? Yes! It stayed with him AT ALL TIMES!!! If he were to ever choke the wrench is to be used to take the halo off FAST in order to perform the Heimlich maneuver. Getting him dressed and undressed every day was a reminder just how scary the halo can be.
He got a bear. Axel LOVES stuffed animals, and is the only child I've ever had who actually plays with them. He talks to them, cares for them, worries over them if they're sick. This bear is good and squishy too. The bear did end up wearing half of the silly goose medicine since Axel didn't really care for it. LOL He's such a good and tolerant bear, just like his new owner.
When Dr. Samdani came in to talk to us before surgery, I started crying as soon as I saw him. He is the nicest, most compassionate man! He put his arm around me as I tried to collect myself and pretend I wasn't really crying. I was just so overwhelmed. I don't get why I was like this today, and it kind of surprised Dr. S. too I think. LOL "It's not you, it's me." I said. LOL
Our first picture post halo!!!!! They weighed Axel before giving him the pre-op sedative, and he's gained another 5 lbs since we were here 6 weeks ago. However, I think that when they calculated his anesthesia dosages, they gave him a dose based on his TOTAL weight, including the halo which weighs 7 lbs. He took a LONG time to wake up!! The nurse said, "Well, he can leave any time...if he'd ever wake up!" LOL
For the first time in 3 months I was able to his him without getting impaled by the halo pins. I stroked his hair ALL over. I rubbed his chest and tummy, and when he rolled to his side I rubbed his back. All places he hasn't had anyone touch since May.
I cried some more.
It took him and hour and a half, and he still wasn't able to walk or even sit up at that point. He was just a drunken sailor. This picture was taken down in the orthotists office where we had to go get the brace adjusted. He may look good here, but see how I have him propped against the arm of the chair???? As soon as I snapped the picture he flopped forward. He has ZERO control of his neck, just like a newborn baby, and it will take several weeks for him to regain any control or strength.
From there we had to go to xray for a new set so the hardware that's inside his neck, along with new bone growth, can be evaluated. Getting the xray was interesting since he had no ability to sit up at that point!
Here we are waiting for our cab to come. I wondered how I would get him to walk into the cab, THEN up the steps into my friend Colleen's house. Fortunately the cabby was a driver we've had many times (the same one who bought me one of those huge pretzels last time we were here.) He's very nice, and was very helpful getting Axel into the cab. But Axel had recognized him and was excited to see him so he was more willing to walk with *slightly* less support. LOL
Video of the wobbly boy. At the end when I jumped it was because he was gonna fall over! I don't know if you can see it in the video, but he's staggering when he walks. LOL
And what did he need most? A BATH!!!!!!! While he was busy playing on the floor with toys I snuck into the bathroom and ran a bubble bath. When I brought him in there he said, "Bahwvhueo bath! Aheksidioah bubbles!!!!" This grin stayed on his face the WHOLE time.
Axel is a very skinny boy, and while he's had some waisting of his upper body (because the halo vest was doing all the work) his shoulders have gained a lot of muscle.
To say he loved his bath is an understatement. He was sensory seeking like crazy, rubbing his belly and shoulders all over the place. It will be a few days before I can give him a much needed hair wash. I have to wait until the holes from the pins are closed and scabbed over.
His restrictions at this point are, "No contact sports (think we're going to need to talk to Angela about this) or anything where he'd really jar his neck." Otherwise he can do anything he feels like doing! Running, jumping, climbing, it's all good!!!!
Thank you all SO MUCH for your love, support and prayers through this.
Tuesday, August 09, 2011
Things
Things Axel hasn't been able to do since February:
Climb the ladder on our awesome playset.
Slide down the slide on same playset....or any other playset for that matter.
Swim
Run
Be a boy!
Things Axel hasn't been able to do since he his surgery three months ago:
All of the things listed above plus....
Take a bath.
Look down at his feet while upright, or see objects near his feet while walking. (which means lots of tripping!)
Put his head on a pillow.
Get ALL of his hair washed. ( I can only get the very top of his head)
Learn about riding bikes.
Go to school.
Run.
Turn his head.
See his plate of food in front of him.
Wear one of his 5 baseball hats.
Wear a backpack (he LOVES backpacks!)
Wear normal clothes.
Scratch an itch between his waist and his head.
Get in/out of the car without help.
Get his shoes on. (well, he can get some of them on, but they have to be pretty easy!)
Wear flip-flops. (He had just been introduced to them before his surgery, but they're not safe for him to walk in with the halo on. He was fascinated by them!)
Go downstairs by himself.
Drink without a straw.
Pee standing up. (seriously! I spent 2 months teaching him how to do this, but he's not able to do it with the halo on. LOL)
Swing on a swing.
Run.
Play baseball.
Run.
Play with a water gun, or ANY OTHER water activity! (Well, last week I did have a moment of weakness and sprayed both him and Angela with the hose. It was just too much temptation!)
Crawl on the floor. (he can't pick his head up to see where he's going.)
Run.
Have I mentioned RUN yet???? This boy needs to RUN!!!!!!
His birthday is this weekend, oh how I can't wait to give him his gifts!!!!
Climb the ladder on our awesome playset.
Slide down the slide on same playset....or any other playset for that matter.
Swim
Run
Be a boy!
Things Axel hasn't been able to do since he his surgery three months ago:
All of the things listed above plus....
Take a bath.
Look down at his feet while upright, or see objects near his feet while walking. (which means lots of tripping!)
Put his head on a pillow.
Get ALL of his hair washed. ( I can only get the very top of his head)
Learn about riding bikes.
Go to school.
Run.
Turn his head.
See his plate of food in front of him.
Wear one of his 5 baseball hats.
Wear a backpack (he LOVES backpacks!)
Wear normal clothes.
Scratch an itch between his waist and his head.
Get in/out of the car without help.
Get his shoes on. (well, he can get some of them on, but they have to be pretty easy!)
Wear flip-flops. (He had just been introduced to them before his surgery, but they're not safe for him to walk in with the halo on. He was fascinated by them!)
Go downstairs by himself.
Drink without a straw.
Pee standing up. (seriously! I spent 2 months teaching him how to do this, but he's not able to do it with the halo on. LOL)
Swing on a swing.
Run.
Play baseball.
Run.
Play with a water gun, or ANY OTHER water activity! (Well, last week I did have a moment of weakness and sprayed both him and Angela with the hose. It was just too much temptation!)
Crawl on the floor. (he can't pick his head up to see where he's going.)
Run.
Have I mentioned RUN yet???? This boy needs to RUN!!!!!!
His birthday is this weekend, oh how I can't wait to give him his gifts!!!!
Here we go!
This morning will be crazy busy! I need to pack three of us: Angela, Axel and me. I could have done it last night, but that darn sculpy clay was calling my name, and at 12:30 a.m. I was putting pieces in the oven. So, back to packing....
For the first time in 3 months, Axel will get to wear NORMAL clothes. You know, clothes that I have not cut apart and velcro-ized to make them into halo wear? He doesn't even realize this part but I am oh so excited! He has only had three shirts to wear with his halo. THREE people! I had bought some fun summer stuff for him before his surgery and he'll finally get to wear some of it. He'll be all GQ and stuff. I'm going to have a hard time deciding what to bring with us for a whole two day stay. LOL
After dropping Angela off with her dad, this afternoon Axel and I will head to Philly where we'll meet up with our good friends Colleen and Nolan!! We'll hang out at their place for the night. Nolan and Axel have a lot of fun together! Then Weds morning is the big day! We arrive at the hospital at 6:30 and he'll probably be done and ready to leave the hospital by 8:30-9:00. WOOT WOOT!!!!
Today I got a tiny glimpse inside the back of Axel's halo vest. OMG it's BLACK in there! Like dirty, gross, and black! He's gained weight since it was put on and I can't get my hand in there anymore to clean it. Just think...three months of not bathing. Who knows what's growing in that thing? It's GOT to have bugs in it or something; it is that nasty.
Because we can't get them pulled up under his vest, his pants have to sit low on his hips. That means there's always a gap between the waist of his jeans and vest where his belly peeks out. Guess what? He has a little belly poking out! It's too cute, and whenever I see it, I have to tickle it. It BEGS to be tickled.
Please keep us in your prayers today for safe and uneventful travel, (functioning landing gear and all that stuff! Oh, just realized I never finished that post. Oops!) and Weds for a safe sedation. I'm sure it will be just fine, and I'm an old hat at this stuff, but still....
See ya soon with halo-free pictures!
For the first time in 3 months, Axel will get to wear NORMAL clothes. You know, clothes that I have not cut apart and velcro-ized to make them into halo wear? He doesn't even realize this part but I am oh so excited! He has only had three shirts to wear with his halo. THREE people! I had bought some fun summer stuff for him before his surgery and he'll finally get to wear some of it. He'll be all GQ and stuff. I'm going to have a hard time deciding what to bring with us for a whole two day stay. LOL
And baseball hats! He'll finally be able to wear his beloved baseball hats without perching them on top of his halo.
And backpacks...oh how this boy loves a backpack, but they don't work with a halo.
After dropping Angela off with her dad, this afternoon Axel and I will head to Philly where we'll meet up with our good friends Colleen and Nolan!! We'll hang out at their place for the night. Nolan and Axel have a lot of fun together! Then Weds morning is the big day! We arrive at the hospital at 6:30 and he'll probably be done and ready to leave the hospital by 8:30-9:00. WOOT WOOT!!!!
Today I got a tiny glimpse inside the back of Axel's halo vest. OMG it's BLACK in there! Like dirty, gross, and black! He's gained weight since it was put on and I can't get my hand in there anymore to clean it. Just think...three months of not bathing. Who knows what's growing in that thing? It's GOT to have bugs in it or something; it is that nasty.
Because we can't get them pulled up under his vest, his pants have to sit low on his hips. That means there's always a gap between the waist of his jeans and vest where his belly peeks out. Guess what? He has a little belly poking out! It's too cute, and whenever I see it, I have to tickle it. It BEGS to be tickled.
Please keep us in your prayers today for safe and uneventful travel, (functioning landing gear and all that stuff! Oh, just realized I never finished that post. Oops!) and Weds for a safe sedation. I'm sure it will be just fine, and I'm an old hat at this stuff, but still....
See ya soon with halo-free pictures!
Monday, August 08, 2011
Just tired
It's been SO hot here. Heat index over 100* more days than I can count. Pretty much the entire month of July, I think. Because Axel's entire upper body is encased in lambs wool, there have been very few days he can spend time outside more than just going back and forth to the car.
A couple weeks ago I was rummaging for something in the garage when I found this stroller. We bought it for Angela when she was about 8 or so, so she could push her baby dolls around the yard. She needed really close supervision though because she would either give it a big shove done our VERY long, steep driveway, push it over the cliff on the side of the driveway, or shove it into the pond. Stinker!
I brought it out for Axel (wondering if I was setting myself up for the same problems!) knowing that he would love to push it around the yard.
How right I was! The few days it's been nice enough for him, he has spent HOURS with the stroller and the baby I brought out for him. Sometimes he stops and leans in to talk to the baby, "Badee wandaeelbyeabphe....K?" Gives her a gentle kiss and off they go again.
Yesterday wasn't too bad, but today has been PERFECT! Again, Axel has spent hours with his stroller. Finally he pulled up a chair to watch Papa weeding a flower bed. He sat here for a good half hour before deciding he was tired and came into the house. It's a lot of work lugging that halo around. Soon Buddy....soon it's coming OFF!
A couple weeks ago I was rummaging for something in the garage when I found this stroller. We bought it for Angela when she was about 8 or so, so she could push her baby dolls around the yard. She needed really close supervision though because she would either give it a big shove done our VERY long, steep driveway, push it over the cliff on the side of the driveway, or shove it into the pond. Stinker!
I brought it out for Axel (wondering if I was setting myself up for the same problems!) knowing that he would love to push it around the yard.
How right I was! The few days it's been nice enough for him, he has spent HOURS with the stroller and the baby I brought out for him. Sometimes he stops and leans in to talk to the baby, "Badee wandaeelbyeabphe....K?" Gives her a gentle kiss and off they go again.
Yesterday wasn't too bad, but today has been PERFECT! Again, Axel has spent hours with his stroller. Finally he pulled up a chair to watch Papa weeding a flower bed. He sat here for a good half hour before deciding he was tired and came into the house. It's a lot of work lugging that halo around. Soon Buddy....soon it's coming OFF!
Sunday, August 07, 2011
Serving Life
It happens sometimes, that something is brought to my attention that I've never thought of. I love when it does happen, because I'm all about learning new things. You know how the old "Cheers" character "Cliff Claven" knew a tiny bit of everything? "Useless trivia" is the term that comes to mind. I'm kinda like that...and probably just as annoying!
Have you ever thought of what happens to prisoners who are given life sentences? What happens when they grow old and die? Are they just alone in their cell? What about prisoners who develop cancer, or MS, or Parkinsons, or any of the other ailments that strike the rest of our civilian population? Those things are difficult to deal with out in the real world, I can't imagine how a prisoner deals with them.
So the other night I watched a documentary about a prison. "Serving Life", which aired on the OWN network, is about a hospice program set up in Louisiana's maximum security prison at Angola. The prisoners housed here are the worst of the worst. They have murdered, raped, and committed every heinous crime you can think of, and they die there. Most are serving life sentences. Some have changed their hearts, but that doesn't change their circumstances. They still have to serve out their sentence.
These are big, tough, sometimes scary looking men. They've been involved in horrible crimes, but each has volunteered to work in the prison's hospice program. At the beginning of the show, you can see it: some are wanting to get involved only for something to do. Yeah, they'll be helping someone else, but is that really why they're there? They're tough. They can do this stuff. After all, most of them have killed. But what they don't realize is how their world, the whole way the think about life, death and dignity will be forever changed. They learn about compassion. TRUE compassion. You cannot care for someone day in and day out, cleaning all manner of bodily fluids from their beds, helping them bathe, change dressings on bed sores, watch them say goodbye to the few loved ones who still care, or struggle to breath in their last moments...it is hard to do those things without compassion. Most of these men had never known what "compassion" meant. Now they know.
"Serving Life" I highly recommend it.
Saturday, August 06, 2011
Cooking with Leah: Episode 1
I don't think if I've ever written an entire post about my experiences in the kitchen. The reason is they're not pretty. I even won a "worst cooks" photo contest on the Food Network website once. (the photo looked great, the rolls were deadly!) Remember my post a few days ago about the clay babies and the Michael's incident? Well my cooking attempts often turn out a lot like clay babies. It's just that some people do not belong in the kitchen. Period. My mom used to tell me, "Well if you cooked more, you'd get better at it." Well, that might be true, but who would do more of something they hate? And I don't know which came first, the inability or the hatred and it will probably take years of therapy to figure it out.
I don't remember when I stumbled across The Pioneer Woman's website, but it was those orange rolls which caused me to win that contest. I'm sure when The Pioneer Woman, or you, make those rolls, they are scrumptious! (so please PW, if you find your way here, don't hate, ok?) Just like I thought the Michael's store would make me more creative, I thought TPW would make my cooking suck less.
Since the orange roll incident, I have not been back to TPW because I felt betrayed somehow. She did not help me the way I thought she would. (And I agree, it's possible nobody can.) A couple days ago, while skimming through my favorites list, my curser stopped on her link. I clicked on it. There were those damn orange rolls again. The picture makes me drool while my brain screams "Don't even THINK of trying that again!" Scrolling down the page, on the sidebar, was a thing for "16 minute meals". Oh that is SO up my alley because 1) that's about how long my attention span is in the kitchen and 2) I usually start thinking about what to make for dinner around 5:45 p.m. Do you see how I get sucked into these traps? The Pioneer Woman has been talking with the Michael's advertising people. I'm sure of it.
So first I made Pasta with Pesto Cream Sauce. I read the recipe. I wrote it down. I went to the store and bought the required stuff, along with a little jar of "organic pesto". I didn't realize **I** was going to be making the pesto. (I swear, I do read at a college level.) I had no idea the basil, and pine nuts and a little olive oil could do that. I came home and made...PESTO! I even ...gasp...let Axel help me. He LOVES to cook. Silly boy. Anyway, guess what? It wasn't bad! In fact, since I LOVE pesto stuff, it was quite tasty. Dean is not a huge pesto fan, so I've discovered, so I'm not sure what he thought of it, but the kids and I did like it.
Since I am a glutton for punishment, AND I'm determined to at least attempt to cook meals for my family...sometimes...I went back to TPW's website again, and scrolled down to that 16 minute section. Beef with Snow Peas.
This had interesting and exotic stuff in the list of ingredients, like ginger. It looks like a giant turd. Anyway, I found a small piece at the grocery store that cost me all of $.06. And is there a big difference between "flank steak" and "sirloin tip"? I thought about calling Dean and asking him (For hubby Dean, the meat salesman, and his meat-seller-cutter family, I am a painful and daily reminder of his failed screening methods when he was dating.) but I really didn't want to hear him sighing into my ear on the phone. I know that sigh well since I hear it often.
At 5:30 I started making dinner. Perfect, since it's a 16 minute meal, right? Only I am not TPW. I keep forgetting that part.
So cut up the meat "against the grain". Seriously? Is this cooking or shop class cuz who knew meat had a grain? I tried me best to make the sirloin tip that was on my cutting board look like what was in TPW's picture. I think it was pretty close.
Soy sauce in a bowl. Got that. Wish the whole process were that easy.
Cooking Sherry. Ok, I could not find that in the store, and I was not ABOUT to ask someone where it was because I didn't not want to appear like I hadn't a clue what it was. Besides, we had wine at home. I was sure that would work just fine. Just to be safe, before adding the wine I posted a question on Facebook, which is almost as good as google only way more fun (and distracting.) My friend Tink quickly posted that wine might be too sweet or something, but that Brandy would be good. Oh Brandy! We have lots of that! It's possible I put in more Brandy than was called for, but that is impossible to know since the recipe didn't call for it. And I only drank a little.
Mince the ginger. Ok...umm...this is where it occurred to me I was in over my head. What the heck do you do with ginger? Like, it has a peel kind of like a potato. Do you leave it on or take it off? My trusty facebook friends said take it off, and Tamara even posted a link to a video all about ginger. See? BETTER than google!
By this point I was at the 30 minute mark. Stupid Facebook.
Scallions. When I saw the green onions in the grocery store I was pretty sure they're the same thing. My FB people said, "close enough".
The snow peas were super easy, but only 45 seconds in the pan? Really? That hardly seemed long enough, so I did them a little longer. Like maybe 5 minutes because I got distracted by Hannah Hart in her Drunk Kitchen. She and I should talk.
So then it was time to cook the meat. Holy cow did that stuff cook fast! Ok, maybe the 45 seconds for the snow peas WAS enough? Hmmmm Interestingly, the meat was incredibly tender! I have *never* produced tender cooked meat before. Ever. I almost felt a little bit proud of me.
It was at this point that I realized I'd forgotten to start the rice. You see, this is where I always screw up. If the recipe does not say, "Start the rice NOW!" I won't do it until the very end because I am so busy worrying about not sucking at the rest of the process. So to TPW, please add that step to your directions, k?
One of my trusty Facebook friends told me an "easy" way to cook rice. HA!!! She does not have one of THESE! So while the rice cooked I had to leave the meat and snow peas on the stove to stay warm. Those poor snow peas!
And then, after a total of 61 minutes, dinner was served!! HOORAY! Everyone but Axel seemed to like it. Too much meat for him. And nobody fell over dead two hours later, which is always a good thing. I might even make it again.
I don't remember when I stumbled across The Pioneer Woman's website, but it was those orange rolls which caused me to win that contest. I'm sure when The Pioneer Woman, or you, make those rolls, they are scrumptious! (so please PW, if you find your way here, don't hate, ok?) Just like I thought the Michael's store would make me more creative, I thought TPW would make my cooking suck less.
Since the orange roll incident, I have not been back to TPW because I felt betrayed somehow. She did not help me the way I thought she would. (And I agree, it's possible nobody can.) A couple days ago, while skimming through my favorites list, my curser stopped on her link. I clicked on it. There were those damn orange rolls again. The picture makes me drool while my brain screams "Don't even THINK of trying that again!" Scrolling down the page, on the sidebar, was a thing for "16 minute meals". Oh that is SO up my alley because 1) that's about how long my attention span is in the kitchen and 2) I usually start thinking about what to make for dinner around 5:45 p.m. Do you see how I get sucked into these traps? The Pioneer Woman has been talking with the Michael's advertising people. I'm sure of it.
So first I made Pasta with Pesto Cream Sauce. I read the recipe. I wrote it down. I went to the store and bought the required stuff, along with a little jar of "organic pesto". I didn't realize **I** was going to be making the pesto. (I swear, I do read at a college level.) I had no idea the basil, and pine nuts and a little olive oil could do that. I came home and made...PESTO! I even ...gasp...let Axel help me. He LOVES to cook. Silly boy. Anyway, guess what? It wasn't bad! In fact, since I LOVE pesto stuff, it was quite tasty. Dean is not a huge pesto fan, so I've discovered, so I'm not sure what he thought of it, but the kids and I did like it.
Since I am a glutton for punishment, AND I'm determined to at least attempt to cook meals for my family...sometimes...I went back to TPW's website again, and scrolled down to that 16 minute section. Beef with Snow Peas.
This had interesting and exotic stuff in the list of ingredients, like ginger. It looks like a giant turd. Anyway, I found a small piece at the grocery store that cost me all of $.06. And is there a big difference between "flank steak" and "sirloin tip"? I thought about calling Dean and asking him (For hubby Dean, the meat salesman, and his meat-seller-cutter family, I am a painful and daily reminder of his failed screening methods when he was dating.) but I really didn't want to hear him sighing into my ear on the phone. I know that sigh well since I hear it often.
At 5:30 I started making dinner. Perfect, since it's a 16 minute meal, right? Only I am not TPW. I keep forgetting that part.
So cut up the meat "against the grain". Seriously? Is this cooking or shop class cuz who knew meat had a grain? I tried me best to make the sirloin tip that was on my cutting board look like what was in TPW's picture. I think it was pretty close.
Soy sauce in a bowl. Got that. Wish the whole process were that easy.
Cooking Sherry. Ok, I could not find that in the store, and I was not ABOUT to ask someone where it was because I didn't not want to appear like I hadn't a clue what it was. Besides, we had wine at home. I was sure that would work just fine. Just to be safe, before adding the wine I posted a question on Facebook, which is almost as good as google only way more fun (and distracting.) My friend Tink quickly posted that wine might be too sweet or something, but that Brandy would be good. Oh Brandy! We have lots of that! It's possible I put in more Brandy than was called for, but that is impossible to know since the recipe didn't call for it. And I only drank a little.
Mince the ginger. Ok...umm...this is where it occurred to me I was in over my head. What the heck do you do with ginger? Like, it has a peel kind of like a potato. Do you leave it on or take it off? My trusty facebook friends said take it off, and Tamara even posted a link to a video all about ginger. See? BETTER than google!
By this point I was at the 30 minute mark. Stupid Facebook.
Scallions. When I saw the green onions in the grocery store I was pretty sure they're the same thing. My FB people said, "close enough".
The snow peas were super easy, but only 45 seconds in the pan? Really? That hardly seemed long enough, so I did them a little longer. Like maybe 5 minutes because I got distracted by Hannah Hart in her Drunk Kitchen. She and I should talk.
So then it was time to cook the meat. Holy cow did that stuff cook fast! Ok, maybe the 45 seconds for the snow peas WAS enough? Hmmmm Interestingly, the meat was incredibly tender! I have *never* produced tender cooked meat before. Ever. I almost felt a little bit proud of me.
It was at this point that I realized I'd forgotten to start the rice. You see, this is where I always screw up. If the recipe does not say, "Start the rice NOW!" I won't do it until the very end because I am so busy worrying about not sucking at the rest of the process. So to TPW, please add that step to your directions, k?
One of my trusty Facebook friends told me an "easy" way to cook rice. HA!!! She does not have one of THESE! So while the rice cooked I had to leave the meat and snow peas on the stove to stay warm. Those poor snow peas!
And then, after a total of 61 minutes, dinner was served!! HOORAY! Everyone but Axel seemed to like it. Too much meat for him. And nobody fell over dead two hours later, which is always a good thing. I might even make it again.
Friday, August 05, 2011
Ramblings from this morning
A bloggy friend of mine wrote a blog post this morning that I found interesting, and caused me to think again about some things I've seen in the community of international adoption over the last couple of years.
It goes back to adopting children who have specific medical diagnosis such as Down syndrome, CP, etc. I KNOW Ds. Not only did we have an older child with DS when we chose to adopt, but I had spent years working with and around both adults and children who have DS. I can look at many children adopted out of institutional settings who have DS and tell you "that's institutional behavior" or "that's just a Ds thing." Not always, but much of the time. It's just part of knowing Ds, I guess. I've never seen anything Axel does that has left me wondering which it is (Ds vs. institutional behavior) but I have wondered what he's input he's looking for in various stimming behaviors. I guess it's safe to say that our comfort zone is in the world of DS.
When we chose to adopt, we started the process for a child who has Apert syndrome. I know a little about AS from previous experience, but I didn't know a lot. Dean had never heard about it so knew nothing about it at all. I started digging. Dean started digging. We both sat on our own computers researching AS. Dean made connections with other families who were raising kids with AS, and I did the same. We found there is a family who has an adult daughter with AS at the new church we were attending. We felt like we had an idea what to expect, and which specialists we needed to line up in advance of bringing this child home. We knew there were lots of very painful surgeries, and having been a mom who has dealt with a lot of post-operative wound care, I understood what that involved. I understood what it's like to see my kids in physical pain after surgery. We also looked at our proximity to medical care necessary for a child who has Apert syndrome. We live close to all of it. And isn't it funny now that we're going all the way to Philadelphia for Axel's AAI? But that's my point I guess...the ability to access the specialists needed. Anyway, in the scheme of things we felt prepared. There would still be surprises, and struggle, but we had prepared as much as possible without actually having the child to care for.
In the end that isn't the child we brought home. (Someday maybe we will, it hasn't been for lack of trying on our part!) Instead we brought home Axel, who had no known medical issues. (pretty unusual for a kid with DS, and foreign to me since Angela has almost everything a kid with DS can have. LOL) But we also knew that Axel's little body was probably hiding some secrets, and boy was he! Still, once we're done dealing with his neck he still has a few minor medical things to address. These were put on the back burner as soon as we found out about the AAI, like getting his tear ducts cleaned out so his eyes aren't constantly watering.
So while reading other adoption blogs, I'm a bit shocked when I see people who've never parented a child with complex needs adopt kids who have just that, or big name diagnosis, like DS, and they do NO research about the issue. Like, nothing more than light reading. They're still in the "Kids with Ds are so sweet!" mindset. (Angela will dispel that myth for you, by the way.) Probably part of the reason this is so confusing to me is my nature is to dig for information. I am a research junkie. I've seen families who have older kids who are non-verbal not give them any way to communicate, either sign, a device, PECS or anything. Now if their child won't use them, that's one thing, but some don't ever bother to try them. Not because they don't have the resources, but because they don't want to. Really? REALLY! Like the child they've brought home will NEVER go out in the world and have to communicate his wants and needs to anyone other than his or her parents. REALLY?
Here's another issue that I'm seeing more of: Families who adopt children with complex medical needs, but they happen to live quite a distance from the key medical facilities they will need to frequent with that child. That's fine if you are comfortable driving the distance. I did it for years with Angela before moving to "the cities". I had to learn to be comfortable driving downtown, and through the worst parts of the city since all the children's hospitals seem to be located in the highest crime areas. (Why is that anyway???)
What I have seen are parents posting things such as "There is just no way we are driving back and forth to the city once a week. We don't have time for it, and besides, I am not comfortable driving in the city." Really? So you bring a child home who needs medical care, and just don't do it because YOU don't want to? Didn't you know when you adopted this child how much TIME all the medical stuff takes? Doesn't that fall under the realm of medical neglect?
I have seen other parents refuse therapies for their newly adopted children because, "We accept them just the way they are." I'm sorry people, but while it's great that we love our children, and yes they are now getting FOOD, a FAMILY and LOVE, there are other things too, like speech therapy, occupational therapy and for some kids feeding therapy that they may need to overcome the delays caused by their years of severe neglect. I have a lot of friends who have turned down early intervention services for their biological children who have special needs. I "get" the intrusiveness they're avoiding. But when we bring these kids home out of institutional settings, this is more than just trying to help a baby keep up with their peers. This is YEARS of catch up. We cannot expect that our children will stay with us forever and never want to get out on their own. What child wants to live with their parents forever? Not only that, but we, the parents, could get hit by a mack truck tomorrow. Our job, as a parent of ANY child, is to help them reach their FULL potential so they can function in society as independently as possible. That's our job, weather our children are typically developing or not. NOBODY wants to be dependent on anyone else, and our kids who have disabilities are no different.
Jumping down off my totally judgmental soap box now.
It goes back to adopting children who have specific medical diagnosis such as Down syndrome, CP, etc. I KNOW Ds. Not only did we have an older child with DS when we chose to adopt, but I had spent years working with and around both adults and children who have DS. I can look at many children adopted out of institutional settings who have DS and tell you "that's institutional behavior" or "that's just a Ds thing." Not always, but much of the time. It's just part of knowing Ds, I guess. I've never seen anything Axel does that has left me wondering which it is (Ds vs. institutional behavior) but I have wondered what he's input he's looking for in various stimming behaviors. I guess it's safe to say that our comfort zone is in the world of DS.
When we chose to adopt, we started the process for a child who has Apert syndrome. I know a little about AS from previous experience, but I didn't know a lot. Dean had never heard about it so knew nothing about it at all. I started digging. Dean started digging. We both sat on our own computers researching AS. Dean made connections with other families who were raising kids with AS, and I did the same. We found there is a family who has an adult daughter with AS at the new church we were attending. We felt like we had an idea what to expect, and which specialists we needed to line up in advance of bringing this child home. We knew there were lots of very painful surgeries, and having been a mom who has dealt with a lot of post-operative wound care, I understood what that involved. I understood what it's like to see my kids in physical pain after surgery. We also looked at our proximity to medical care necessary for a child who has Apert syndrome. We live close to all of it. And isn't it funny now that we're going all the way to Philadelphia for Axel's AAI? But that's my point I guess...the ability to access the specialists needed. Anyway, in the scheme of things we felt prepared. There would still be surprises, and struggle, but we had prepared as much as possible without actually having the child to care for.
In the end that isn't the child we brought home. (Someday maybe we will, it hasn't been for lack of trying on our part!) Instead we brought home Axel, who had no known medical issues. (pretty unusual for a kid with DS, and foreign to me since Angela has almost everything a kid with DS can have. LOL) But we also knew that Axel's little body was probably hiding some secrets, and boy was he! Still, once we're done dealing with his neck he still has a few minor medical things to address. These were put on the back burner as soon as we found out about the AAI, like getting his tear ducts cleaned out so his eyes aren't constantly watering.
So while reading other adoption blogs, I'm a bit shocked when I see people who've never parented a child with complex needs adopt kids who have just that, or big name diagnosis, like DS, and they do NO research about the issue. Like, nothing more than light reading. They're still in the "Kids with Ds are so sweet!" mindset. (Angela will dispel that myth for you, by the way.) Probably part of the reason this is so confusing to me is my nature is to dig for information. I am a research junkie. I've seen families who have older kids who are non-verbal not give them any way to communicate, either sign, a device, PECS or anything. Now if their child won't use them, that's one thing, but some don't ever bother to try them. Not because they don't have the resources, but because they don't want to. Really? REALLY! Like the child they've brought home will NEVER go out in the world and have to communicate his wants and needs to anyone other than his or her parents. REALLY?
Here's another issue that I'm seeing more of: Families who adopt children with complex medical needs, but they happen to live quite a distance from the key medical facilities they will need to frequent with that child. That's fine if you are comfortable driving the distance. I did it for years with Angela before moving to "the cities". I had to learn to be comfortable driving downtown, and through the worst parts of the city since all the children's hospitals seem to be located in the highest crime areas. (Why is that anyway???)
What I have seen are parents posting things such as "There is just no way we are driving back and forth to the city once a week. We don't have time for it, and besides, I am not comfortable driving in the city." Really? So you bring a child home who needs medical care, and just don't do it because YOU don't want to? Didn't you know when you adopted this child how much TIME all the medical stuff takes? Doesn't that fall under the realm of medical neglect?
I have seen other parents refuse therapies for their newly adopted children because, "We accept them just the way they are." I'm sorry people, but while it's great that we love our children, and yes they are now getting FOOD, a FAMILY and LOVE, there are other things too, like speech therapy, occupational therapy and for some kids feeding therapy that they may need to overcome the delays caused by their years of severe neglect. I have a lot of friends who have turned down early intervention services for their biological children who have special needs. I "get" the intrusiveness they're avoiding. But when we bring these kids home out of institutional settings, this is more than just trying to help a baby keep up with their peers. This is YEARS of catch up. We cannot expect that our children will stay with us forever and never want to get out on their own. What child wants to live with their parents forever? Not only that, but we, the parents, could get hit by a mack truck tomorrow. Our job, as a parent of ANY child, is to help them reach their FULL potential so they can function in society as independently as possible. That's our job, weather our children are typically developing or not. NOBODY wants to be dependent on anyone else, and our kids who have disabilities are no different.
Jumping down off my totally judgmental soap box now.
Thursday, August 04, 2011
Ground Turkey Recall!
Dean received a late-night email from work last night. Cargill has done a voluntary recall of 36 MILLION pounds of fresh and frozen ground turkey. Please go to the Cargill website for full details.
The One About....
I swear this question is not about self back-patting. I have an assignment to do which requires me to ask this question: Thinking back in what you've read here over the years, what is your favorite blog post I've written?
7 months home: Lots of Gains
Back when we had Axel's first language assessments done, he tested below 12 months in both expressive and receptive language skills, and that's taking into consideration he was a new English language learner. It didn't help matters that he heard Serbian from birth - age 2...about the time he would have started talking, at which time he was moved to a facility where Hungarian was used. About the time he would have just started really understanding Hungarian, somewhere around age 4, he was moved to a different facility where both Hungarian, Serbian, and occasionally German was used. He was there until he was 7 when he was moved to a foster home speaking Serbian. 2 1/2 years later along comes us with our English. Axel never had a chance to develop a first language. He had NO expressive communication when I got him. Nothing. A couple of people who were around him in Serbia told me he would say a word here in there, like machina (car) or pas (dog). But my other Serbian friends who had no reason to glorify things for me said they didn't hear any recognizable words from him. There was just nothing.
The moment I took custody of him, I started signing to him. "Shoes", "shirt", "eat", "drink", "more". Everything. I signed every important thing I could think of as we it came up. The poor kid was suddenly bombarded with language. But guess what? This boy, starved for communication, GOT IT! It only took one time of him imitating a sign (drink) for him to realize that would make me jump and get him a drink!
This video was taken on December 4th 2010. I'd had custody of Axel for 24 hours at this point.
I look at this little boy and I want to cry. He had no knowledge. Nobody had given him a way to say anything. He didn't know the names of colors. He couldn't count, and didn't even know what numbers were for that matter. He doesn't even LOOK like the same child 7 1/2 months later!
Let me tell you where Axel is at now. His receptive and expressive language now tests in a range from 3-5 years. Yes, he is turning 11 years old. But people, he has gained 3-5 years of language skills in just 7 1/2 months!!! That is AMAZING!!! I have fed him new vocabulary (in sign) at every opportunity. The funny thing is, he was able to identify items and concepts that I haven't taught him yet (like "kite". I've not shown him a kite.) It is just impossible to get 10 years of exposure to the world crammed into this short time. I credit Axel's amazing speech therapist and the Signing Time video series for covering the gaps for me so far.
Axel has learned LOTS of things besides vocabulary.
Last week I really started pushing written numbers 11-20. We do them on the calendar and stuff like that, but I haven't really pushed him until now. Like most kids, the teens have been tricky for Axel to learn. You can see when they come up that he knows that "14" is different than the "4" he wants to sign, but he can't remember quite how to sign it. Do you shake it, wave it, what do you do? LOL Still, he tries hard! You even get to see him cue a word or two! Oh, and he almost always has a hat perched on top of his halo. LOL
We're still working on counting 10 objects consistently without needing help. You'll see how s.l.o.w. he does this. This is what fools most people into thinking he needs help, and it took me a while to realize he was sometimes sucking me in too! I know, it's painful to watch sometimes. This is the speed he does most things, and is the reason my hair is all falling out, I think.
Still to come: letter names, letter sounds, and cuing some words, maybe even some sight reading if I can get to it!
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