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

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

Wednesday, February 29, 2012

Freight Trains

Yesterday was Day 1 in the floor finishing process. They guys came and patched the floors where there used to be cabinets, then did filling, sanding and the first coat of polyurethane.

While the poly was being laid Dean was home with Asher and Angela while Axel and I were doing our Tuesday afternoon/evening running. (ST/OT/misc errands.) When we came home the house was overwhelmed by poly fumes. We had planned to close off the main floor and just stay in the basement with the windows cracked until Friday when we can be on the floors again. However, 1/2  hour in the house and I knew we needed a quick change of plans! I got on Expedia and booked a hotel room up the street, threw together a bag for the kids and off we went. Dean came along to help us lug all our crap into the hotel then he went back home to stay with the dogs. Asher was very confused and stressed. No smiles our laughter and "frozen" wherever we put him. He was really freaked out by all of this.

Last night was the first time I've ever slept in a hotel room with all three kids. Each and every one of them snores like a freight train! It was well after 2:00 this morning before I finally fell sound asleep. We need a family sleep study done, so my next mission is to find a sleep clinic who will do that. LOL

I was woken by the alarm at 5:30 along with a horrible smell. Asher, who was sleeping in my bed, had a blow out. I really just wanted to walk out of the hotel room and not come back! But then who would gt breakfast for the kids???? So I cleaned up Asher as best I could and was just about ready to wake up the other two when at 6:00 I got a text from Dean saying that school was two hours late due to the storm that came through last night. Oh, I was so glad to hear this! It gave me all kinds of extra time to get everyone situated AND back home to catch Axel's bus.

Once Axel was on his way, Asher and I took Angela to the doctor for some fasting blood work that needed to be done, then off to school she went. All excited because tonight is her last floor hockey game. Or is it? Asher and I were just getting back to the hotel room for lunch and a nap when Dean called to say the game had been canceled. :-(

I'm hoping I can take the big kids swimming in the hotel pool tonight. I wish Asher could go too but he can't with his stitches. Just two more days and we can start putting our house back together!

Monday, February 27, 2012

Random

Some random pictures from the last several weeks.

Just some of my kids at a late Christmas celebration at my sisters. (this was the last weekend of January) 
Angela, Noah, Axel and Asher. (We're missing Rob, Tyler, Bryon and Aaron) 

Daddy got a pellet gun in the guy's gift exchange. This is the only time Asher will be holding it!

Angela and cousin Harper playing Twister. 

Axel waiting to to visit with his surgeon at Shriner's in Philadelphia. 

Asher REALLY wishing someone would let him play with that shop vac!

A father son moment I couldn't miss!

 Couldn't miss a mother/son shot either!

Angela's team getting awards after their first Basketball tournament. They play 1/2 court.

 My friend Joanie came over to pick up a dishwasher. We haven't had a chance to visit in ages! This is her most recent addition, Trumann. Angela was in love with him!

Dudley, guarding the ball so none of the other dogs can get it. The white dog next to him is Zurri, who is staring at him hoping he'll walk away from the ball. 

Daddy and Asher walking around the hospital waiting to get discharge papers. 

 Another father/son moment, this time in the hospital. They were both sound asleep.

Progress

Here's what the kitchen looks like today!




Next steps? Primer and paint today, then tomorrow the floor guy comes. While the poly is being put down I say we hotel it for three days, Dean says we just live in the basement for three days. Money is an issues since every last penny is being put into the kitchen so we'll see. Next week we'll be ready for the cabinets. Ahhh but will the cabinets be ready for us? NO! Two to three weeks left for those!

Saturday, February 25, 2012

The Neglected Child

A few weeks ago someone left a comment on my blog saying that I seem to have forgotten I have THREE kids at home right now, and that nothing much has been said about Angela lately. Based on a blog post I see this same person must have left a similar comment on another friend's blog. Really? I have the feeling you don't have a blog of your own to post all kinds of stuff about your  kids for the whole world to read. Let me explain something to you:  This is MY blog. It's what I choose to write, not what I choose to live. When you watch a reality TV show, do you expect you're getting the whole story in those few minutes??? Well, YOU probably do. I'll let you in on a little secret: YOU'RE NOT.

While Angela loves when I post stuff about her on my blog, she is in high school, and there are parents, teachers, and classmates of Angela's who read here. It would be lovely to think the whole world loves and adores all my children but I'm not that stupid. Not everyone who reads my blog does so because they adore Angela and want to know more about her.  High school can be a very cruel environment sometimes. That all make makes me very selective of the things I choose to post about her.

Then lets talk about who's in front of the camera more. Lets face it, Angela is at school all day, then goes from there to practice for whatever sport is going on at the time. Four days a week she walks out the door at 6:45 a.m. and doesn't come home until 5:00. Then she spends every-other-weekend with her dad so two Friday's a month she leaves for school at 6:45 a.m and I don't see her again until Sunday evening. Axel leaves at 7:30 and gets home at 3:30....or 5:15 if it's a therapy day. Then we race around getting dinner, showers, and everyone to bed before we do it all again, but only if we don't have other stuff happening. Then there is Asher who his home with me all day long and my phone/camera is always within arms reach.

Now, I'm going to pay attention to the ASHER who is laying in a hospital bed while Angela and Axel are being completely neglected. Oh wait! They're at their friend's cabin having the time of their life and are thrilled its not THEM in the hospital bed.

Surgery Day!

Yesterday was the day we've spent 2 1/2 months waiting for. To get all these pesky little things take care of at once and put them behind us!

In the Pre-op exam room. Asher was kinda loving the attention, and he really enjoyed the company of the Serbian translator.

Got a little Versed did ya, Asher?

Yep, that head is pretty darned heavy!

Then he was taken away from us. He was beyond loopy at that point and really didn't care at all. During the 3 1/2 hour surgery he had his tonsils and adenoids removed, an incision made in his ear drums to check for fluid (his drums are too scarred to be able to see fluid through them),  a bronchoscopy to check his airway since he has a history of tracheolaryngeal malacia, and endoscopy with biopsy to rule out Celiac disease, a colonoscopy and rectal biopsy to rule out Hirschsprung Disease, unburied his penis, circumcision, and some other rectal work of which I'll leave out the details. The poor kid doesn't have one single orifice that wasn't touched, and he has stitches on the most sensitive ones. Poor baby!! And I have to say, I've never seen a "cast" on a peinis before. So there.

After surgery there were lots of tears. Those of you with post-institutionalized children will understand our pleasure at not only seeing those tears, but that he was initiating hugs and kisses from both Dad and Mom. And, he LOVED the oxygen mask. Silly boy.

Then we went up to our massive room. "The Suite". The Amplatz Children's hospital is designed with families in mind, as all children's hospitals should be. The space between the bed and the back wall is "family area" and hospital staff are not to enter that area. They're to stay on the near side of the bed. 
 
Doesn't everyone need three TV screens? A 52 inch and two 30 somethings. The room has Wii, DVD, and everything else you can think of. You can have Wii going on one screen and a movie on the other, and regular TV on the third screen, or you can put internet on one of them. Parents and kids can be entertained at the same time. The big screen TV also has a camera on it so kids can video conference with their family and friends at home or their classrooms at school.


I mentioned earlier that Asher loved the oxygen mask. When he is scared, nervous, or just plain unsure of what's going on he hides behind his hand. We couldn't figure out why he liked the mask so much until we realized that whenever a new person walked into the room he'd put the mask TIGHT on his face. He was hiding behind it. One of those sad but cute kind of things.

He has been eating, drinking and peeing really well (the good part about the fact he's already on pureed foods.) and will probably be going home today. That first poop is not gonna be fun and I kind of wanted to hang out here for that but I think they'd rather we go home.




Friday, February 24, 2012

Big day tomorrow!

Ok, I just looked at the clock, and it's already tomorrow. CRAP!!!! There are only 4 hours left for me to sleep.

Friday morning is Asher's surgery and we have to be at the hospital at 5:30. Like the doctors really get there at that time. I know better! Surgery is scheduled for 7:30 so the doctor's won't arrive until around 7:00, right? LOL

Please pray that Asher does well with the anesthesia. He doesn't have a history which includes anesthesia that we know of, so there's no way to predict how he'll do. Both Axel and Angela wake up all fine and dandy. Could we get so lucky as to have a 3rd child who is the same way?

Here's the list of what he's having done:

Tonsills and Adenoids removed
ABR (Auditory Brainstem Response - hearing test)
Ear tubes if needed
Bronchoscopy
Endoscopy w/biopsy
colonoscopy w/rectal biopsy
Three-phase urological procedure

Yep, I think that about covers it! We were gonna try to get the dentist in too but there are already four doctors involved so we'll have to hold off on that stuff.

Thursday, February 23, 2012

But you CHOSE this!

So you decided to have children. You experience your first pregnancy; the morning sickness, the aches and pains, the swelling. You might even have days where you complain about some of the uncomfortable parts of being pregnant. And those last days, when you're feeling as big as a house? Well you might complain to your spouse that you can't see your feet, much less tie your shoes. You WANTED to get pregnant, and you might even complain, but other women sympathize with your pregnancy woes.

The baby arrives and you learn about sleepless nights, sucking boogers out of stuffy noses, poopy diaper blowouts, and all the other things that come along with having babies. You WANTED this baby, and you might even complain, but other parents sympathize with your parental woes.

Your baby eventually starts school. You learn about parent teacher conferences, the reams of paper that come home in the form of permission slips, classroom notices, and all those other things school finds necessary to send home. (and thats for a child without special needs!) You WANTED this child, and you might even complain, but other parents sympathize with your parental woes.

And then you decide to adopt a child.

When you go through the paper part of the process, often referred to as the "paper pregnancy", you experience the millions of forms, the deadlines, the money. You WANTED this adoption, but for some reason, if you let even one breath of an expression of frustration out of your mouth, people will say, "But you WANTED this adoption. What did you expect?"

If you adopt internationally you travel to the other country to get your child. This is the "labor and delivery" part of the experience. You learn about eating in foreign places without anyone to help you read a menu. You learn about getting around, and the "Groundhog Day" effect that happens when you have to say for several weeks. However, don't let even one breath of frustration out of your mouth, because people will say, "But you WANTED this adoption, what did you expect?"

You get your new child home, and you learn about the sleepless nights, the endless poopy diaper blowouts, the sucking of boogers out of stuffed up noses, the.neverending.doctor.appointments. Whatever you do, NOW is not the time to complain, because it is going to be thrown back in your face that "you WANTED this adoption. What did you expect?"

I don't understand it. I don't get it at all. Time and again newly adoptive parents say to me, "I get NO support from friends and family..." because those friends and family have the belief that because the family WANTED the adoption, they are never allowed to feel frustrated, scared, or...God forbid...exhausted.

People! Being a parent is just that. Parenting. It doesn't matter how your child came to you; by birth, remarriage, or adoption. All those things we parents go through when we birth a baby are the same things we go through when we adopt. We are exhausted caring for a newborn with a wonky sleep schedule, and we're exhausted bringing home a child who's entire biological system is functioning on the clock from a different part of the world. We clean up poopy diaper blowouts from our toddler, and we do the same for our newly adopted child who came home with God.knows.what bacteria, or just travel tummy.

This morning I read THREE different blogs in which the writers, all newly adoptive moms, have NO support from family, and very little from friends. Stop treating them this way! Just because they CHOSE to adopt doesn't mean they should never get tired. Doesn't mean every single day of their lives will be all roses. In fact, they might have that child home a full year before they feel like a single rose has bloomed! Get over yourselves. Get off your high and mighty horses. You would destroy your family ties because if it were you, YOU would not have chosen to adopt so that makes it wrong for your family member to do so?

If your family member was called by God to adopt, they should instead listen to YOU and disobey His call on their life????

And there's my rant for today.

Wednesday, February 22, 2012

Mary

On the other side of the world, in Serbia, she spends her days in a crib, already confirmed available for international adoption and still she sits. Nearly 6 years of looking at the same four walls. Nobody has bothered to teach her to walk. Nobody has bothered to teach her to talk, or play with toys.

With dark eyes as big as saucers she takes in her small world.


Sadly, there isn't much to take in. She is loosing hope. I've seen her three times now, and she's loosing her battle to stay connected to her world. Her spirit is screaming for her mother to find her. "Mama. I am here. Can you hear me calling you? Can you feel my spirit touching yours?"

I know her mother is reading here. You may not know you're her mother yet, but your spirit is stirring. You're busy worrying about money and God is telling you, "Stop. Stop worrying. When I lead you follow and you'll be on the right path."

You think you don't have the stamina needed to get through the international adoption process, but I'm here to tell you to stop worrying. You could have your daughter home by summer.

"Mama. I'm here. I will wait for you Mama. I can't wait to feel your arms around me. I can't wait.....Mama."

I didn't know I was his mother

 It was April 2010, and I'd made the trip to Serbia with a friend. We visited two foster homes to meet the boys who lived in them. One had Down syndrome, and one did not.

His name was Djordje. This little boy came out to greet us. I said to my friend, "Wow, for a boy with Ds he's tall for 4."

"Four? He's NINE!"

"Ok, well then I take it back. He's really tiny for 9!"

He was a funny little guy, eager to show off for us, and play with these two crazy ladies who didn't know how to talk right.

The first time I met Axel, I didn't know I was his mother.

When I returned home from that trip, Dean and I started the process to adopt a little girl I'd also met along the way. As things with that adoption continued to fall through, we started thinking: Who was most in danger right now? The little kids with DS had time, but that older boy. That 9 year old. His foster family was ready for him to move along. Dean asked if Djordje had any issues that I worried about dealing with, and I said, no, absolutely not. He's a lovable little guy who I wouldn't hesitate to bring into our family.

Suddenly I had lots of questions that couldn't be answered. When I had met him the first time, I wasn't looking at him with a mother's eyes. What size clothes was he wearing? Did he seem to hear? What size shoes? What kinds of sounds was he making? Did he say ANY words?

One month later, on December 1st 2010, I was holding him in my arms once again. Only this time, I knew I was his mother.

It wasn't easy. Bringing home a 10 year old boy who had lived in four different settings before coming to us was tough. He'd never been allowed to form bonds that weren't destroyed when he was moved from one place to the next. He tested us...oh how he tested. There were many times when I begged God for insight into what made Axel tick. What was the root hurt that was fueling one behavior or another. How many times I stood in the shower (aka my prayer closet) and cried because I really didn't know what to do or how to help him. And always....always clarity coming to me in those moments, when God would give me a word to explain Axel's latest antics, like "bruised", "fearful" or "distressed", or maybe show me an image from Axel's eyes and how he viewed a certain situation. That doesn't mean I handled those situations perfectly with this information, and I have made plenty of mistakes, believe me. I'm human, and often felt like I was flying by the seat of my pants. But Dean...Dean has been my rock and together we made it through some rough adjustments.

The first time I met Asher, I didn't know I was his mother.

It was November 30th, 2010, and I was making a visit to the orphanage in Belgrade. I hoped to visit the little girl we'd originally tried to adopt, and also check up on a few other kids. The next day I would be meeting Axel again! Oh, there are SO MANY cute kids there, its very hard to know that you're going to leave them all behind.

I was with another family at the time, and together we met this little guy. Other than the fact he was very cute, he didn't stick in my mind as "my child" because he was so young. Still in a crib. Our age minimum was 6 and this little guy was no more than two...or was he? His name was Lazar, and I didn't know he was already 6!



But he knew...he knew I was his mother. He tried to tell me but I didn't hear. I wasn't speaking his language because I wasn't  his mother...yet.

When I met him again, exactly one year later, he looked much different. 

This time I came knowing I was his mother. I didn't remember ever having met him before, probably because he looked so different. His face wasn't familiar eat all! No, this was a new child I had never met before. And to be honest, he was. GONE was the child I didn't remember meeting. Clearly his nutritional level had changed, and he was "flat", without any affect at all. Gone was the eye contact. Gone was his ability to participate in the world around him. No, I had never met this child.

*It wasn't until we were home for about 6 weeks that I discovered the pictures I'd taken that very first time I met Asher one year prior. I still don't remember having met him. *

If you read back through my adoption blog during those first few visits, you'll see it was not easy. Three months ago I wrote these words:

Asher has had his entire 7 years behind institutional walls. Through the glass partitions I watch him in his group.  Sometimes toys are scattered on the floor, like miscellaneous blocks that don't go together. Nobody has taught the children how to play with them so they are nothing but objects with which to hit themselves in the head or tap on the wall. Asher stands in the middle of the room or lays on the floor, eyes cold and distant, unfocused, lost in his own world. His world, the one in the institution, has nothing for him so he has left to find somewhere better in his mind. He doesn't rock, he just stands frozen like a statue. If he lays on the floor he is still. Sometimes he finds a thread from someone's clothes, or a stuffed animal that still has it's tag, and dangles it before his eyes, occasionally using his other hand to give it a twirl. This is Asher's day....every day....for every waking moment.
Ever so slowly, over the course of the next two weeks, Asher started to appear. 

With flashes of eye contact...

And a the hint of a smile...

I eventually found him.

The little boy who now sleeps down the hall is not the same boy I met just three months ago. I am his mother and he is my son. Today he spends his day bursting with squeals of delight and great enthusiasm at every new experience. 

So many adoptive parents think that they will feel an instant connection to the child they're adopting, and if they don't they think there must be something wrong with them.  I met BOTH of my children prior to adopting them and there was no "instant connection" then, so why would there be when I returned to adopt them? I didn't expect there to be, and there were no guilty feelings when there weren't. I have parented children who were not biologically mine before. I knew ahead of time that it feels different. 

Bonding takes time, particularly when the child is not biologically yours and he or she is no longer a baby. And sometimes...sometimes a child who is not biologically yours never feels like they are your child. Sometimes they never get past feeling like a niece or nephew. And do you know what? There is nothing wrong with that. If your niece or nephew suffered a terrible tragedy and came to live with you, do you think you could help them heal? Absolutely! And so too will you help your adopted child. And those days when you really don't feel like loving them, you might have to fake it. Have you ever had an annoying neighbor kid come over to play? Their every habit grating on your nerves but you still treat them well because...well..you should! You even find yourself watching the clock for when it's time to send him and his habits - which were created in his other life - home. Sometimes your adopted child might feel like that annoying neighbor kid. Because you might feel that way doesn't mean you're doing anything wrong. You can still show a child love and caring without feeling like they are "yours", just like you do with the neighbor kid. Your job is to help heal the wounds in that child's heart and spirit. Love them. There will be days when you feel like you can't. Get support, pray, call a friend, talk to your spouse, pray some more, stand in the shower and cry. It will get better eventually, but you MUST seek out support if you feel like you're sinking. 

As for us, both Axel and Asher are truly "my" children now. We have bonded. That doesn't mean every day is a cakewalk, but I can say I have never had one single day where I regretted the decision we made to bring these boys home. 

Monday, February 20, 2012

I have a secret

I've had a secret for a week or so, and I've been DYING to spill it because I'm so excited I can hardly stand it!!!! Today I was finally given permission.

Another Serbian prince will be coming home!!!!

And no, he's not coming here.

Today a friend of mine and her husband committed to another 7 year old boy who was just recently added to Serbia's list of children available for International Adoption. They already have a 7 year old they also adopted from Serbia at the same time I adopted Axel. In fact, I met them in Serbia. (Funny how we have to fly to the other side of the world to meet other adoptive families. LOL)

Their paperwork is all complete, they're just waiting for their immigration approval. Hopefully they'll be able to travel the end of March. Like us, they have not yet seen a picture of their little guy, and they likely won't have any idea what he looks like until they meet him in person. And you know what? Like us, they really don't care. Theirs is the second truly "blind" adoption into the US from Serbia. (our adoption of Asher was the first.)

As soon as they post something on their blog, I'll post a link, but it might be awhile. I'm just so very excited to know another little boy is getting a Mama, Papa, and a brother. A family, a home, and LOVE!!!!!

It's coming along!

The floor guy was here last week and confirmed what I'd told Dean before, that he has to refinish the entire floor on the main level, not just "patch in" the new floor. That means we have to empty the main floor living area (living room and dining room). We had been considering selling our huge sectional, but now that we have to clear out everything and don't really have a place to store it, it's a good time to sell! Gotta love craigslist when you need to get rid of stuff quickly! We also sold our range and dishwasher.

So, the agenda today is to get the main floor packed up, which is a good time to throw stuff out that we shouldn't be hanging onto in the first place!

The sheetrock is up, so that just needs taping/sanding. When that's done the floor guy is ready to do his thing, which includes patching kitchen floor, sanding entire main level then poly it all. When that's done???? THE CABINETS GO IN! Not excited at all. No...not at all.

Somehow, on some level, I know that when I pack up all this stuff, it's gonna take until June to get it all put back.

Saturday, February 18, 2012

He Only Needed a Brother

The last couple of months, Axel has been refusing to sign at home. We have no idea why, but are guessing it's because he's trying to "code switch". Meaning he's figuring out that at school everyone signs, because if you don't people don't have a clue what you're saying. At home people sign, but if you talk people can still understand you. (well, we can when you speak words, not Axelese.) It's been a source of many parent/child standoffs recently, and there have been times when Dean and I walk around carrying on fake conversations in our own fake babble language to get our point across. (this backfires when Axel makes up answers to our babbled questions by saying, "Sure" or "Ok!")

What we didn't know was we only needed to give him a brother.

Tonight Axel, Asher and I were on our way home and stopped at the gas station for dinner from the freezer section. (Yes, really. I'm so tired of not having a kitchen!) We were standing at the check out line when I turned to observe this instructional session between Axel and Asher. This is one of those times when I wished I had a video camera on my head and just needed a "record" button so I could share it with you. This conversation was all in sign combined with spoken words:

Picture: Axel standing next to me, Asher holding his hand. (not the other way around.)

Axel: signing in Asher's face "Asher. Asher. (frantically tapping Asher on the shoulder.)  ASHER! "EAT" " Demonstrating the sign "eat" so that Asher will copy it. Asher didn't catch on so Axel took Asher's hand and  put it to his mouth, "EAT. Your turn. EAT".

Asher:  signed "eat".

Axel: "Asher. Go see Papa. Papa home. PAPA. Asher. See? PAPA"

Asher:  did his version of "papa" which is a fisted hand on the back of his head.

Axel: "No. Asher. Papa" ( Axel carefully opened Asher's hand and placed it to his forehead to form the sign Papa.)

Asher: signed Papa.

Axel: Good work Asher. Good boy. Papa home. Go home see Papa.

I stood there the whole time at the register, watching this exchange, beaming from ear to ear. I'm sure those around me, if they couldn't see what was happening, were wondering why there was a tear running down my cheek.

Because...

it's comfortable.

Thursday, February 16, 2012

Please Pray for Serbia

If you don't follow the news from Europe, you don't know that Eastern Europe and the Balkan region are seeing the coldest temperatures they've seen in recent memory. Not only that, but they've had more snow than ever recorded before. Parts of Serbia have gotten as much as 15 feet of snow! Roads are closed, and the Serbian government is begging people to conserve electricity. The Serbian ministry is on it's second week closed in an attempt to conserve energy. The power in Serbia comes mostly from coal, and the supply ships cannot make the trip up the frozen rivers. The power company says it can only continue at present levels for one more week.

Now, think about the institutions and orphanages in that region. They're cold to begin with, now add temperatures sometimes exceeding -30* fahrenheit. When it's this cold, and it's hard to get food and supplies around due to the snow, these children are suffering more than they usually do.

Wednesday, February 15, 2012

Where to start with Asher?

I've been really torn about when to start Asher in school. Although he seems to be bonding with us really well, he's still so much of a baby. He's learned lots of things, but I haven't even touched on things like colors, counting, etc. No, it felt like he needed to "just be" for awhile; to learn what it meant to be part of a family, about brothers and sisters, a what it's like to have a refrigerator full of food, to watch food be prepared, discover cause and effect...and to know love. To discover things he's missed for 7 entire years. Just be.


It's hard not to compare him to Axel when he first came home. Asher has been home a little over two months. By this point Axel had 50 or so signs. Asher has about 15, but will imitate everything.  I have to keep reminding myself that not only was Axel developmentally older, but he was communication starved. Axel had been exposed to four languages and didn't have a first language. He understood Serbian only slightly better than he understood English. Sign was definitely the right way to go with him. (Interestingly, in the past few weeks Axel has been saying Serbian words here and there. He never spoke while in Serbia!) He's kind of having a speech explosion at the moment, as we hear a new word or two each day.


I finally made the decision to start Asher's assessments for both private therapy services and school. I don't have any trouble starting him with private therapy since I can attend with him. But school? Yeah, I'm not sold  yet. Besides, there's that whole baby thing....


So yesterday was his first school assessment. I decided I wanted the language-based portions done sooner than later so we could do them before he lost all comprehension of Serbian. A Serbian translator was arranged, and the testing began.


Asher blew us away.


Asher knows LOTS of stuff. His receptive language skills...in Serbian...put him somewhere around a 24-36 month level. (we don't have the actual tally back yet.) Given the fact he was raised in an institutional setting AND has Down syndrome, he's doing quite well. He was able to follow most directions given to him by the translator, things that in English he's not even close to understanding the language yet. It was VERY interesting to watch and in hindsight makes me wish we'd done the same for Axel when we brought him home. 


One funny thing that happened. The translator arrived and greeted Asher and introduced himself. Upon hearing Serbian, Asher got a HUGE grin on his face, took the translator's hand and headed for the door with him. It looked like he was saying, "Thank GOD you came! Take me with you cuz these people talk crazy talk!" 


And the part that brought tears to my eyes: The translator asked him, "Where is your Mama? Hug your mama" and Asher turned to me and gave me a hug. He KNOWS who Mama is. I knew he know who his Daddy is, but I didn't know about me. It brings tears to my eyes just to type it out here. 


So now I have a better idea where to start with Asher's education. I know he's ready for colors, counting, and some other things in English. Though his motor skills are deceiving, he's really not such a baby anymore.



Tuesday, February 14, 2012

I really am here!

Life has been crazy busy lately. So much so, that I haven't had much ambition for blogging. Believe it or not, I hardly know what to say. Well, that's not really true either because I have several posts started, I  just don't know where to go with them.

Last week was only slightly busy, but Thursday things turned crazy somehow. First, on Thursday Asher had a private PT assessment. It was interesting to see the things he knows how to do, things he knows what to do but isn't yet able, and other things that he's just not ready to do or understand yet. He'll be doing PT twice a week. This week he has an OT assessment, and I'm assuming that will be twice a week as well. He has surgery on Friday next week and once he's feeling a little better we'll start feeding therapy, probably a couple times a week. My life will be all therapy, only at different times as Axel's sessions, which means some days I'll spend most of my day at the therapy center. YAY!

Friday I had a meeting with the local school district to start Asher's school-based assessments. I wanted to do all language based assessments soon using a Serbian translator so we could get a true idea of where he's at with receptive language since I really had no idea. The assessments started today. (more on that later.)

Saturday Angela had her first ever Special Olympics basketball tournament. She's playing 1/2 court, and all of the girls on her team have played before. Since this is Angela's first year, she really doesn't understand the game much. She and I will work on this a bit so she knows she IS allowed to knock the ball out of people's hands, but...only the OTHER team. LOL

You may remember my post about Dad a couple weeks ago. His blood pressures didn't come down and my mom had to leave town for a week, so on Friday my sister went to spend the weekend up north keeping Dad company. On Saturday Dad really wasn't feeling well so he took his blood pressure and it was 215/110. Umm.. WAY HIGH! My sister brought him into the ER where he was given some IV drugs and his oral meds were changed. Since she had to come home to work, Asher and I went up on Sunday evening so she could come home. By Monday when he went to his regular doctor his pressure had come way down, his appetite was back and he was doing just fine, so Asher and I came home last night.

Asher was very quiet up at my mom and dad's place. I'm sure he wondered where I was taking him now, and wondering why we left Daddy behind! He really didn't make a sound while we were there, other than laughing at their little yorkie when the were playing. When we came home last night, although we got in late (it's a 4 hour drive) he was THRILLED to see his daddy and laughed and squealed with delight for an hour! Oh, how happy he was I brought him back!!!

Between the events of the last few days, and the fact our house is an absolute disaster with construction mess and just plain disorganization, it all makes me want to just sleep the day away. I swear I have to go to three different rooms just to make a bowl of cereal for a kid. Dinner is a joke (like it wasn't before. HA!) and I really feel like I'm loosing my mind when I have to get something done. I cannot WAIT for this project to be done so we can get back to normal.

Sunday, February 12, 2012

What's that saying?

Killing two birds with one stone! Potty and soaking his injured finger...er...arm.

No shirts

It's not very "European" to be walking around without a shirt. This is Asher's opinion of this no-shirt business. Do you see that tummy? The most adorable tummy ever! He is the cutest little man.

Friday, February 10, 2012

When I Suck at My Job

I'm a regular poster on the Down syndrome forum called Downsyn. I've been there for years, and even as most of the "old timers" have moved on to Facebook or other social media sites, I've stuck around. It's my online "home" if you will.

Lately I've been having a problem getting things done, specifically paperwork related to my kids, or showing up to the right place at the right time for meetings or other events. Yes, I keep a calendar, but this month I'm going to blame it on the fact my calendar keeps moving around due to the kitchen remodel. Don't worry, next month I'll find a new excuse.

So yesterday on Downsyn my friend was looking for an old post she wanted to print out and give to her daughter's teacher. She was sure I had written it, but I had no recollection of it at all. She eventually found it, and she was right! It was written by me in 2005. I laugh. In 2005 I hardly knew anything at all. So here's the post. I bet there are a few here who can identify with it.
...............................



I've heard them talk in the staff lounge. You know who they are.... You know who you are! You've talked about the parent of a child with a disability who has become uninvolved in their child's education. No wonder that child can't succeed! Afterall, his parents do nothing for him! They never turn forms in on time. They forget to sign permission slips, and God forbid there should be homework, 'cuz you know it's not going to get done anyway! When you do see this parent, (I'm going to follow the law of averages and say it's the mom) she the looks like she just rolled out of bed. HHmmmmm I wonder if you really know? I wonder if you REALLY have a clue what it took to get that child to school? I'm not talking about just that morning, but for the past several years!

Lets first take the mom of a typical child. They fly through infancy and toddlerhood, hardly noticing that their child does 10 new things a day. Yes, they notice the major milestones...When the baby sat up, crawled, etc. But most of the time they can't tell you the other very little things, like the day their baby discovered his hands, or the day he started cruising furniture.

Then the child hits 3 or so and can start dressing himself. (Do you know how many moms of kids who are perfectly capable, dress their children? It's sad!) and the very next day it seems they're 5 and headed for school. Mom now moves into a new phase of her life, particularly if this is her youngest child.

Now, lets turn the tables a bit. My baby had Down Syndrome, but you could substitute a number of diagnosis in it's place. She spent the first 6 weeks in the NICU, with me and the rest of my 5 kids making the 120 mile round trip every day so I could 1) see her and 2) hopefully get her to breastfeed.

When she came home, our life took on a very unusual kind of normal. It is the "normal" assumed by all parents in the US who bring home a new baby like Angela. It's called Early Intervention, and when run right can give babies with "issues" a fantastic boost in their development. The goal is to keep kids from falling behind, at least not very far. The sad thing about Early Intervention is you have to be a marathon runner to participate. Oh, did I mention participation is mandatory?

When you were a new mom, whether it was your first or you had others before, did you like people coming to your house? You may not have minded it, but with Early Intervention it's almost every day! That means almost every day you have to have your house clean! There is speech, PT, OT, Special Ed, D/HH, they all come for an hour per week.

Now throw in (in our case) and average of 3 doctor visits per week. These are not just visits to the pediatrician (who the heck is that anyway?) but specialists. Yes, its the ists that run our life. Cardiologist, Gastroenterologist, Endochrinologist, Pulmonologist, Orthopedist, Opthalmologist, Anesthesiologist, Radiolgist, Neruologist, and then some others like a surgeon, pediatrician, etc. In my daughter's first three months of life, she saw every one of these specialists on a regular basis. By one year of age, she had seen some of them far too many times for any tiny baby!

There are also meetings. Oh the meetings! IFSP's they're called, and they cause us parents much distress! I bet you have no idea how upset we become when an assessment of our child's skills has just been handed to us. We may not cry right then and there. Some of use have gotten good at hiding our tears. Instead we wait until later, alone in the bathroom (if we're lucky enough to have a lock on the door!) and we let the tears fall. We read the reports again and again. Not because we were in denial before, because honestly, we know exactly every little thing our child can and cannot do, but because seeing it in writing makes it real! Seeing in writing that our child is 2 years behind in one area or another is like getting punched in the stomach, and then whacked over the head with a 2x4, only it takes longer to recover.

So the Early Intervention schedule keeps up the pace until age 3 when that little tiny being goes off, on a bus, to school! School at age 3! On a bus! However, the other junk..all the ists, did not change. They're still there, it's just that now I have to call someone to say my child won't be in school today because today we're seeing of of the ists. LOL Some parents choose to work outside the home at this time, because they are under the false impression that things will slow down a bit. Silly them.

Along comes Kindergarten. The same specialists are still in their place, the only difference is the IFSP has now turned to an IEP and is more scary, because now this is real school! Now we have a new problem. We have think of things like mainstreaming, inclusion, resource rooms, FAPE. It seems that we spend a lot of energy fighting for the things our child needs. Unfortunately in the US, you're in the minority if your child is automatically included in the mainstream classroom. Isn't that sad?

Did I mention in all of this there are other children who need me too? As my friend Michelle so wonderfully said it, "They're hanging on for dear life in the shadow of her." Because yes, it's hard not to get lost among the ists and the schools, and the meetings, and the surgeries, and the occasional nap.

So when your field trip slip doesn't come back, or homework isn't done, don't assume the parent is uninvolved. Assume, instead, that she is exhausted and just plain didn't have the energy to remember one seemingly small detail.

PS. My daughter's teacher just called. Seems I forgot to put her almost invisible hearing aids on her this morning. Go figure 


I think this post is about do for a re-write because I just added two more kids and more "ists" than I can count. If I was sucking at getting forms done before, well...send me to bad mom jail now because I can guarantee this did NOT improve.

Sunday, February 05, 2012

Forward Thinking

We have a house full of short people. Angela is 15 now and 4 ft 8 1/2 in tall. (whenever people meet her in person for the first time they're always surprised at how tiny she is! LOL) She stopped growing about 3 years ago and since her growth plates are fused, she's now done.  Axel is 11 and the same height Angela was at the same age. Since I know his birth family (have met and am in contact with them) I don't expect he will be much taller than Angela.  And Asher? Who knows! Though I will eventually know, right now I don't know how tall his birth parents are. 

One of our jobs as parents of kids with Down syndrome is to teach them to be as independent as possible.

Enter our kitchen.

When Dean bought this house 10 years ago, the seller had just installed new cabinets. The seller was clueless. 



At first glance the kitchen doesn't look too bad. Once you start opening cabinets you quickly learn where the problems are. Approximately 30% of the cabinet space in our kitchen is unusable. Both upper and lower corners (the one you can see in the picture above, and the corner that's tucked off to the right that you can't see) are 100% in accessible.

Just before I left for Serbia to get Asher we decided to refinance the house and remodel the kitchen. We'd be doing it with little people in mind. All the cabinets in the picture above will be coming out.

Below are three views of the dining room. In this first one, this is the wall between the dining room and kitchen. It's gone!


This is looking from the kitchen out to the living room. This view will be changing!

We contacted Tim over Shafer Cabinets. Funny how things work. Tim has a niece who has Down syndrome who he adores. He totally understood the features we wanted in our kitchen!  He came to the house to get all the measurements, and over the course of a couple of meetings we've come up with a plan that will suit the needs of our growing family. Let me give you a pre-build tour.

These are the CAD computer generated images of our new kitchen. (no, these are NOT the colors we're using. LOL) This first view is looking from the dining room into the kitchen. The wall is gone and an island installed. Next to the refrigerator is where the microwave will be installed at counter height. Easily accessible to all the kids without pulling hot things down from over their heads. 

But it's inside the island that the kid-related changes will be happening. First the drawers. They will hold all the dish and glass wear. Right in front of these drawers is the dishwasher so emptying it will be a breeze for the kids. (you know, those important life skills!)

The stove is the main appliance we purchased with the kids in mind. I don't even like to cook and I'm excited about the new stove! It has an induction top. Induction heating significantly reduces the risks of burns to hands and any other material! The stove also has touch-screen controls that are flat on the surface, rather than on the front where small hands can reach them that shouldn't, or in back where one would have to reach over a hot pan. And for fun there is also a warming drawer which I doubt I will ever use but Dean swears he will. Also, you'll notice this drawing has a bar-height breakfast bar. This has been changed and it's now counter height. We remembered how much difficultly Angela has getting up onto a barstool so counter height it is!

So what's done so far? Well you've already seen these pictures:

All of the cabinets are out now. New insulation has been put in, all the wiring re-done, plumbing capped off. Next to get done: New header put up, floors patched and refinished, sheet rock installed/taped, paint. We don't expect this project to be done until the last week of February. Right now, having no kitchen and washing dishes in the bathroom, this seems forever away.

Thursday, February 02, 2012

Oh Axel

Almost two years ago, when I met you for the first time, it never occurred to me I'd your mother just a few short months later. Never would I have dreamed I'd watch you suffer through some of the things we've had to "fix" for you. Back in November when you started having problems I dreaded the thought of having to repeat it all, and tell you that dreaded halo was in your future again. I was dreading having that contraption around for another summer!

But today we got great news! We learned the pain you're feeling is a pretty normal part of the healing process, particularly for a boy who's grown nearly 5 inches in the 8 months since the surgery was done! (and gained 21 lbs!)

I can't wait until this summer Axel, to show you all the fun things it will bring!

Wednesday, February 01, 2012

Ouch!

So Axel and I are in Philly to meet with his surgeon tomorrow morning. Asher and Angela are home with Dean, but yesterday Dean had a mandatory meeting at work so Asher had to stay with a sitter. I wasn't thrilled about this, because not only is he staying with someone else, but our house is under construction so he had to stay at her house. None of it sat right with me, but we really didn't have a choice in the matter.

Now, Asher is a very curious little boy and really wants to see anything and everything there is to see, and apparently that includes what is underneath a dishwasher. Our sitter stepped out of the room to get something and Asher must have spotted something under the dishwasher, so he stuck his hand under there.

That's when our sitter heard him crying. She came running and he was laying on the floor with his hand under his belly, but he was crying. There was blood on the floor so she turned him over and found his hand bleeding quite badly.

Now, our sitter is a very good friend of mine who happens to get quite bothered by the sight of blood. Her husband was home so he bandaged up Asher's hand and she called Dean to let him know that Asher had gotten hurt. It wasn't long after that I emailed her something and she told me about the injury as well. She didn't think it needed stitches but also hadn't gotten a very good look at it because...well...she can't do blood.

So I was in Philly, feeling HORRIBLE that I was not there for Asher. I was already upset that he had to stay with someone else because he is NOT ready to be in the care of others yet. In the midst of discussion, and after about an hour, my friend said she she changed her mind and she did think he needed stitches. It was noon by this time, Dean left his meeting early and headed over to pick up Asher.

I was just sick about the whole thing. Just a few weeks ago we rocked his world when we removed him from all he knew. We've been trying to build his trust, teach him to come to us when he's hurt, that mommies and daddies are there to kiss the owies and take care of him, etc. And then we  up and left him at the sitter who was under strict orders that NO hugging or carrying was allowed,  and THEN he got hurt. And where were Mommy and Daddy? They weren't there to help him!

He layed on the floor whimpering, which really bothered me because it's so not like him. Then he fell asleep. This was an "I'm going to "freeze" then shut out the entire world" type of sleep. It's a coping thing. He woke up after a few minutes but wouldn't make eye contact with the sitter. I got on skip with them and he came over and tried to lean into the computer screen for a kiss.

Break. My. Heart.

A few minutes of that and he went back to the couch, laid next to her two small dogs and went back to sleep.

I was on Skype with them when Dean showed up to get him. OH! Was that boy excited to see his daddy!!! Look, he came back! He latched on and was not about to let go!!!!

So Dean brought him into the doctor and had me on speaker phone. She described the injury and said his finger was sliced right at the base of the nail, but there was a hunk of skin missing so nothing to stitch together. However, with the amount of bruising she was concerned about the bone so they did an X-ray, where they found that he'd sliced off the tip of the bone at the end of his finger. POOR BABY!!! He must have laid on that floor with his finger throbbing! Can you just imagine?

So he has this bad cut, we're not exactly sure what he cut it on, and his vaccines are not yet completely up to date so lucky little boy also got himself a tetanus shot. He's also on oral antibiotics and we have to soak his hand in antibiotic solution a couple times per day.

My poor baby. I felt horrible for him. Not only that he got hurt, but that we weren't there. He's still learning to trust us and it just made me feel absolutely horrible for leaving him. It doesn't matter that neither of us had a choice in the matter, we both still feel bad that we let him down.

So tonight I got to see his poor bandaged hand. It's his waving hand, poor baby! This is my view via Skype.

Later in the evening I skpyed with the kids to say goodnight, and Asher was trying to hug the computer screen with me in it. Awwwww And he has just started leaning in for kisses and he did it over and over again, trying to get a kiss from mom. It's just not the same from a computer screen. I can't wait to get home!