Educating about Down Syndrome

One comment frequently made by parents of kids who have Down syndrome is they can't find a doctor who know's anything about it. I find this to be a very strange phenomenon considering Down syndrome is the most common occurring chromosomal disorder.

The fact so many doctors know nothing about the condition is very scary. Think about it: A doctor such as an OB/GYN is delivering a baby and knows enough to diagnose it, but this person who knows nothing about it is advising parents about their options. To the average Joe, or Dr. Joe, Down syndrome is a scary thing. They remember back to when they themselves were in elementary school when the classrooms with "those kids" were tucked away; a mystery to all the other students. There aren't many good memories associated with it, and so they perpetuate the fear by giving new parents inaccurate and often very scary advice.

Sadly, when doctors go through medical school they get little, if any, information about Down syndrome, something they are sure to run into at some point in time. Dr. Julia Kinder has set out to change all of that! She has started an online petition asking that third year medical school students receive, at minimum, two hours of education and training related to Down syndrome.  I think this is especially important for those planning to become pediatricians, OB/GYN's and Neonatologist; the very people brand new parents depend on for advice!

If you would like to see (and hopefully sign!) the petition, please visit change.org , or you can view it by clicking right here! 

8 years ago today

Eight years ago today, in hospital in Kragujevac, Serbia, a baby boy was born. His name was Lazar.

I imagine that when the doctor look at Lazar's hands and feet he knew right away. Lazar was different. Born into a society where different is bad. Where the left over opinions of Stalin, Lenin and Hitler still prevail, Lazar was one of them; a "useless eater" who could never be a contributing member of society.

But Asher's parents knew that although they couldn't give him all the things he needed, he wasn't "worthless". They visited as much as they could. I know, because I'm a mother, that his mother's heart broke every time she left him behind. I cannot judge her for leaving. I don't live in that society but I understand the pressure she was under.

Just a few months before his 7th birthday, Lazar's birth family chose to allow him to be adopted internationally. They hoped a family from the U.S. would find him, giving him opportunities he would never have in Serbia.

One year ago today, on his 7th birthday, Lazar's mother and father were at the orphanage having a small birthday party for him. I know they could see he was already disconnected from everyone, and the party was really more for them. They wanted to feel as if they were doing something for him. And maybe...maybe in their hearts they knew this would be the last time they saw him. The very next day, on November 1st, they were informed another mother and father had chosen to add him to their family on the other side of the world.

I cannot imagine the heartache his birth mother felt as she waited to hear the decision by the social center.

So while we celebrate the life of our son, Asher, we also recognize the heart ache felt by another mother in a small town in Serbia. Tonight she cries tears for her son while being happy he has found a family. We are eternally grateful for the decision Asher's birth family chose for him. We love our son more than anyone could imagine.

Update 2016:

Asher is 12 years old now. A handsome young man anxious to try anything we put before him. He is a true blessing to our family!

The End of Another Season

Living in Minnesota brings with it traditions like going "up north", which technically means going anywhere in northern Minnesota, but in reality can mean anywhere outside of the metro area.  I think everyone I knew going up had cabins or lake property "up north". Every weekend there is a mass exodus out of the cities to the major highways that head north.

Leech Lake, MN
photo credit www.vacationhomes.net

Almost 20 years ago my parents sold the house I grew up in, moving to property on Leech Lake, Minnesota. Lake homes come with responsibilities centered around the lake and boats, one of which includes the annual "Put the dock in" weekend which happens late April or early May (whenever the ice goes out)  and "Take the dock out" weekend which happens in late October before the lake freezes.

Last weekend Dean and I took our first weekend alone, without kids, in two years! This may not seem like a big deal to many, but for Dean and I who were used to having every-other-weekend to ourselves this time alone together has really been missed! We headed Up North for the 2012 Take Out the Dock weekend at my parent's place. 

Bob volunteered to dig around in the frigid water to find the chain while my brother holds his legs and Dad supervises. (usually someone is IN the water in wader boots!) 

 Pulling the furthest posts out of the water

 Dean removing dock sections.

 Disconnecting one side of the dock from the main section.

 The big dock frame is pulled in by a winch. 

 Raising the legs on the boat lift. 

 The bigger dock and boat lift are in, now just need to get the last section out of the water. 

 Another season on the water has come to an end.

While the boys were taking the dock out, my sister and I got all the lawn and deck furniture put away into storage. We look forward to spring when we'll be back to take it all out again!

Talking with Daddy

Remember when I said Asher is becoming much more verbal? Here's another example. He LOVES to talk to Daddy! At the end when I'm signing, he's signing "where?" to go with the song. LOL

Patching

On Weds Asher had a check up with the pediatric eye specialist at the University of Minnesota. I really like Dr. Bothun! Angela has seen several eye specialists over the years and so far he's my favorite.

When we first got Asher it was clear he wash't seeing very well.

We couldn't wait to get him into the eye doctor! Asher has severe astigmatism, Strabismus, nystagumus and is far sighted. All of this put together caused his left eye - his weaker eye - to shut down completely. When the eyes can't focus together the brain turns one off so it can process the information. The poor kid had no depth perception and, since he always had to tilt to turn his head to see out of one eye,  his balance was off and he developed torticollis.

I had hoped that there was a simple fix, like surgery, that would help with the strabismus at least. (because in my perspective from having kids with high medical needs, surgery is "easy"!) We could not be so lucky. I had hoped that Dr. Bothun was wrong (though in my gut I knew he wasn't) and we got a second opinion. The second doctor agreed that surgery wasn't an option for Asher. There isn't a surgery to fix his combination of problems and really the astigmatism was the biggest culprit in Asher's visual difference.

We opted to go with glasses first to see if the corrective lenses would pull his left eye closer to straight. It really worked quite well, but after 10 months in lenses his eye still isn't seeing very well independently. The doctor said it was time for patching.

Ugh! I hate patching!

A couple months ago when his glasses were getting fixed I patched his eye to see if that would help him any while we waited for his glasses to come back. . His left eye gets 'stuck" looking at his nose! Ummm...about 20 minutes and I couldn't stand it anymore and took it off!

So today we're at it again only this time he has his glasses too. I put the patch on and his eye shot straight to his nose.

I had just put the patch on when I took this picture. Within a few minutes his lip was out and he was desperately trying to tell me "all done" in every way he can think of. It's been 30 whole minutes and he keeps putting my hand on his eye and signing "please". He tried walking circles around the dining room table but finally just sat down on the floor with his bottom lip out again. Now his thumb is in his mouth.

Months. It's going to be months of patching. I'm not sure if either he or I can stand it that long.

Asher

Asher's first school picture! (minus his adorable glasses which were being repaired)

There is one similarity between Asher and Axel. That is the fact they are both very well behaved for me, pretty well behaved for Dean, but kinda naughty for everyone else! And that, my friends, is where the similarities end.

I keep having to remind myself that no two kids are alike, and the (minor) things that cause me to be frustrated with Asher are just that: minor. I also have to remind myself that "slow and steady wins the race!" because Asher is on his own schedule when it comes to hitting developmental milestones.

It IS a lot of fun watching him go through all the developmental stages. I could put a developmental timeline in front of me and mark exactly where he's at. It's very interesting to see stages that I never knew were so critical, or that my other kids went through without my noticing or remembering.

Last week Asher learned how to get something he wants. Think of a not-quite-talking toddler who points and grunts, and that is where Asher is now. It's FUN to see because it's so new for him. Before he would just wait until someone finally gave him something, and now he can reach out in the general direction of the desired item and kind of milk the air to show us he wants it! YAY ASHER! This then turns into a game of guessing what he wants! "Is it this? or THIS? Did you want this?" to figure out what it is he wants, then we show him the sign for whatever it is. When we finally get it figured out he LAUGHS a full bellied laugh, so excited that this communication thing gets him what he wants!

Asher's sign vocabulary is increasing rapidly! He's also putting together two signs to say things like, "More please" and "Bath please". He can request a toy being turned on/off by signing "On please". Also, Asher is no longer silent! He has found his voice and is playing around with sounds all the time. He is able to verbally say "more", "mama", "dada" (sounds like nga nga) and "all done".

Asher is very shy about making new sounds. He likes to practice in private or when he thinks nobody will notice. I remember how oh-so-very difficult it was to get him to imitate sounds. Now he does, but in private. LOL Like in this video, he's sitting on the rocker with his back to me, which to him means he's alone. He's making sounds we've spent weeks trying to get him to do in therapy. LOL



Then there is the part that is frustrating to me. As much as Asher is changing and growing, (and he has grown A LOT!)  he really has no desire for knowledge. Right now we're working on matching colors - which he can consistently do - and naming them. Apparently Asher has ZERO need for this kind of information because getting him to do it is very difficult. Really, Asher doesn't want to do anything that requires any kind of thought. I honestly don't know how to get him motivated. I also don't know if this is just a developmental thing or just Asher being Asher.  When he came to us he was like a 6 or 9 month old baby who could walk. Now 11 months later he is very much 2- 2 1/2! That's a lot of development in just a few months time. I'm anxious to see what changes the next year brings, and am hoping one of those changes is a desire for knowledge.

Last Week to Vote!

This is the last week to vote of The GIVE on from Cultivate Wines! And guess what? In this last week you can vote every 15 hours! If you follow me on twitter I'll send out a reminder. In the meantime, here's the link again. Please take a couple minutes to vote!

This is Why

This is why I continue to speak out for Serbia. You have seen the posts about the Pleven facility in Bulgaria and the horrid places in Ukraine. Heres a link to a blogpost written by Beck who is currently visiting an institution in Serbia. Although there are starving residents in this facility, there is love. Most of residents in other Serbian facilities are not so lucky.

 The first time I went was because I didn't feel I could advocate effectively without experiencing for myself. Beck, a reader here, is in Serbia right now, experiencing for herself what I have been talking about for a couple of years now. Please, go have a read.

And thank you, Beck, for respecting the privacy of the most vulnerable of Serbia's people. 

About Those Hugs

As  much as I dislike stereotypes, there is one characteristic that is common to many kids with Down syndrome, and that's the hug factor. I do know kids with DS who don't like to hug, but most that I know will hug nearly anyone they meet.

If you are a parent of a young child with DS, I have some news for you:

It is not cute, nor is it safe, for your child to hug everyone they see. 

If I had a typically developing 6 year old, would I want them walking up to strangers and hugging them? Absolutely not. (at least I HOPE not!) So why, because my kid has DS, is this ok? Do you realize how vulnerable it makes my child? Your child is just as vulnerable when you allow the hugs.

I once watched a documentary where several pedophiles were interviewed. One of the statistics mentioned was that if you were put into a room with 100 complete strangers, statistically 2 of them would be pedophiles. So when we turn our kids loose in that room, they have a very good chance of hugging that person. But don't think they have to hug them to be vulnerable. Maybe they hugged the person NEXT to the pedophile, or even someone 10 feet away. If you don't think the pedophile was paying attention and making a mental note on who the easy target was, think again.

When Angela was little she, too, liked to hug everyone. We had a mantra "Hugs are for family, handshakes are for friends." that we recited every time we walked into a public place and we would talk about who was going to be there. The conversations went something like this:

Me: We're going into the grocery store. What's the rule?
Angela: Hugs are for family, handshakes are for friends.
Me: Who works at the check out?
Angela: Diane
Me: Is Diane a friend or family?
Angela: family.
Me: Really? Does she come to Thanksgiving or Christmas with us?
Angela: No. She's a friend.
Me: Right, Diane is a friend. What's our rule?
Angela: Hugs are for family, handshakes are for friends.
Me: Does Diane get a  hug?
Angela: No, she's a friend. No hugs.

I also had to put my foot down with school staff. "Why is my child allowed to hug school staff? These are nothing more than good acquaintances to her and she should not be hugging them." It was tough to follow through with until I asked them if they would allow THEIR child to hug everyone at school? The answer was usually no.

Axel was a little more difficult. Being newly adopted he had no idea who was "family" or what that meant. We were ALL new to him so how was he supposed to distinguish one person from another? We spent 6 months following very strict rules to help him get it figured out. Nobody but Dean or I would give him foods (including treats or snacks) We were the only people to help him with anything. All of his needs and wants were satisfied by us and nobody else. Nobody...and I mean nobody...but us were allowed to give or receive hugs with Axel. If they didn't live in our house they were not allowed a hug.

Somewhere around 6-7 months we loosened the slack a bit. One day Dean's parents came over and I let them know they could give him a hug. Axel leaned in with just a shoulder but looked to us to make sure it was o.k. What a milestone that was! We also developed a small poster of a circle chart. Picture a target:

The very center circle of the target contains pictures of Axel hugging those who live in our household. The next outer ring contained pictures of Axel hugging grandparents, aunts and uncles, but in all the pictures mom or dad were standing right there as well. The next ring was pictures of Axel giving handshakes or fist bumps to people like his phy ed teacher, the doctor, bus driver, etc. This worked well to help Axel learn who was family and who was not!

Asher, adopted almost one year ago, is an entirely different story. We have been pretty strict about the no hugging rule but it is clear Asher has many issues surrounding attachment. (He is definitely somewhere on the spectrum of RAD.) If we're in a public place Asher has been known to grab the hand of a total stranger walking by and let go of mine! If I didn't say anything he would keep walking with him. The interesting thing is the reaction of the stranger. They always look at me kind of scared, with an "I swear I didn't have anything to do with it!" kind of look on their face. If I were to guess I'd say he's looking for another mother who doesn't have any of those dang rules like no sucking on your tongue, no dangling or grinding your teeth! These total strangers are completely flattered  this child is trying to hug them. Please...don't take it personally! Asher will do this with absolutely every.person.he.meets. And, just like hugging, it is so very much NOT SAFE!

Angela is 16 now, and we are STILL trying to undo the hugging habit, because it is NOT CUTE at 16 years old to hug whomever you meet. If I could go back to having a little Angela again, I would  institute the same hugging rule we have for the boys.

"Hugs are for family, handshakes are for friends!"

The Caretaker

Axel is the most caring, compassionate young man I've ever known. If I bump into something and happen to say "ow!" Axel is very quick to ask. "Ok mom?"

If Asher falls down, Axel is the first one there to help him up. If Angela needs help tying her shoes or zip her jacket, Axel is quick to offer a hand. (he is especially proud of his ability to tie!)

Both Axel and Angela like to help Asher with after-meal clean up. Angela is all business and gets it done quickly, but Axel? He takes his time, is especially gentle, and doesn't miss a spot of chocolate. ;-)

Axel has also taken it upon himself to teach Asher how to sign the alphabet. 

Axel is a great role  model for Asher. When there is a new activity I want Asher to do which I know he won't particularly like, I can count on Axel to give me a hand. (I absolutely LOVE the grin Axel gives Asher, and watching Asher's TOES! He is always grabbing things - like his own feet - with his toes. LOL)

Where's Axel?

Last year Halloween was a whole new concept for Axel. He really didn't understand what was going on. But this year? Yeah, he totally gets it now! He's very into "scary" and scaring people, and loves using his newfound ability on Angela who does NOT like scary things. 

Cooking With Kids

Some of you saw the title of this post and though "Huh? She's cooking?"

I know, right? It's true! The kids and I cooked - kinda - over the weekend. We made fruit pies.

Sorry these pictures are a little blurry. There must have been something on my lens.

Everyone has pie crust. Asher is really confused and probably wondering that I'm going to have him do THIS time?

We cut out all the crusts and Angela is putting hers into the press.

Asher adding the apple filling he picked out.

Painting the edges with egg.

Axel waiting patiently while Angela added the blueberry filling to her pies. (this was probably one of the few moments he wasn't trying to tell her what to do.)

The kids really enjoyed this activity, especially the eating of finished pies. Oh, and Asher liked licking the stuff off his fingers. While this was a very simple activity, there is a lot of therapy mixed in. There's a lot of parents of young kids here who are new to this world of parenting kids with special needs and might have a hard time picking out the "therapy" parts. There are a lot! Post in the comments all the things you can find. 

Who Will Benefit?

A few months ago you saw me post about Project Hopeful and their quest to win a $50,000 prize from Cultivate Wines. What a blessing for this organization to have won!

A few days ago I mentioned Cultivate Wines again and their latest contest for a $50,000 grant. My focus this time is on the The Morning Center.

From their website:

A pregnant woman who chooses life for her child needs a caring community of support. Far too often the Christians who urged her not to abort can offer nothing more for maternity care than a government aid form. 

It is time for Christians to provide loving, personalized maternity care in Jesus’ Name, to anyone who needs it—free of charge. 

The Morning Center hospital and mobile care unit project is the next step in the pro-life movement. Together, we can bring a new day in maternity care and lavish the love of Jesus Christ on women and unborn children who desperately need it.

If The Morning Center wins the vote, that $50,000 will not benefit one mother. It will not benefit 10 mothers. Instead, it will benefit HUNDREDS of mothers per year, for several years to come! And what about the hundreds of children who will not be aborted thanks to the loving care provided by The Morning Center staff? So many lives, so many people, so few days left to vote.

Please visit The Morning Center website and read about their services, and how many people will benefit their winning the $50,000 grant. Then, GO HERE and vote every day. Don't forget to share with your friends and family! 

The First Time

The first time I met Axel was April 9th, 2010. Another woman and I had traveled together to Serbia to get information on several children who were said to be registered for international adoption. (We would later find that not only were some of the children not registered for adoption and still had their parental rights intact, but it was illegal for us to have been taking their pictures and posting them on the internet!)

I wasn't in Serbia as an adoptive parent, or even a potential adoptive parent. In fact, Dean wasn't thrilled with the fact I was going on this trip! He left me at the airport having looked me right in the eye saying, "Don't even think about falling in love with some kid. I am NOT adopting!" Famous last words!

We drove by car from Belgrade to the city of Kragujevac. We pulled in in front of a small house and out came this little boy. Now, we had discussed many kids over the course of this trip, and because I had no vested interested in remembering all of the information on every single one, I thought this was a four year old we were going to visit. "Wow, he's tall for four!" I said.

My traveling companion quickly replied, "Four? He's NINE!"

"I take that back. He's TINY for nine!"

Meeting Djorjde for the first time!

His name was Djordje (translates to George) and other than being very tiny, he didn't look like he had Down syndrome. "Has he had a chromosome test? Maybe he has a different syndrome." We played with him for about an hour. He was a fun little guy; very social and eager to be in front of the camera. He was quite the little show off! He wasn't talking at all but his social workers really didn't know why. Our visit ended and we left.

Over the next few days Dean and I discussed the possibility of adopting a little girl I'd met our first day in Serbia. The man who wanted nothing to do with adoption was smitten. ;-) We ended up getting stuck in Bulgaria due to the Icelandic volcano, which gave Dean more time to contemplate this decision. By the time I arrived home he was ready.

We began the paper process in July 2010. By September we knew the little girl we'd hoped to adopt was one of the children not legally available for adoption. We thought about who was  next most at risk, the ages of the children, etc. Angela was 14 at the time and we knew we weren't prepared to bring a toddler or younger into the house. Since I had met Djordje we decided he would be a good match for our family. Well, Dean was always a little worried about the "what ifs" more than I, since he hadn't met him.

On Weds, December 1st 2010, I once again found myself pulling into the driveway of a tiny house in the middle of Serbia. (You can go here to see pictures of that day.)

Sixteen days later Axel and I arrived home and he got to meet his new Papa and sister Angela for the first time.

21 Things About Axel

2012-2013 school year, 5th Grade

1. Axel was born in Kragujevac, Serbia

2. Axel communicates using ASL

3. Since we got him 23 months ago he has grown 16 inches and 23 lbs!

4. Axel's favorite show is Thomas the Train.

5. On weekend mornings he talks Asher into opening their bedroom door to "go find Papa" when it's still dark outside!

6. When Axel first came to us he brought with him a toy cell phone. It's been replaced a couple of times but he ALWAYS has a toy cell phone with him and carries on lengthy conversations.

7. Axel eats anything we give him. When he first came he didn't care for meat but now he'll eat anything. Even pickled herring.

8. Axel started swimming lessons about 6 weeks ago and he's almost swimming on his own!

9. He just participated in his first Special Olympics bowling tournament. (it didn't go so well.)

10. Axel LOVES playing with his toy trucks! It's so fun watching him enjoy them.

11. He is really enjoying having a brother and sister. They all three get along very well together.

12. I don't think there was ever a kinder big brother.

13. Axel really loves school and is starting to tell me about his days. He is (sometimes) able to tell me what he had for lunch, or that he had gym class. (this is all done in ASL)

14. I'm going to guess that one of his favorite things to do with Papa is go fishing at Uncle Dave's because he asks about it all the time.

15. Axel can go to the bus stop by himself now and doesn't need me to meet the bus either.

16. He is slowly overcoming his fear of heights (as in, he doesn't like his feet to be off the ground at all!) and because of this is LOVING his new bunk bed!

17. In July Axel learned how to pump a swing. After school he likes to swing and will spend an hour swinging HARD and singing a song that we assume is about his day.

18. Axel loves to sweep the floors and dust. He's kind of a neat freak. Took me 8 kids to get one.

19. Axel thinks he's boss of the dogs but they don't listen to him at all. Probably because they don't understand Serberinglish.

20. Axel asks for chocolate milk at every meal, even though we rarely have it.

21. Axel's spoken vocabulary is growing every day, but he tends to speak on rapid-fire phrases, and not in the right context. His favorite phrase is "getouttahere" followed closely by "don'tcopyme". Yesterday morning he showed me a new sign. "Forgot". As in, he came to the breakfast table buck naked. I asked him, "Umm...where are your clothes?" and he replied with "forgot". 

Mama Kong

Boyz Room

When Asher first came home, we made a spur of the moment decision to put the boys together in one room. I had purchased matching twin sleigh beds the day before I left the US to get Asher. In the three weeks I was gone Dean and my son Tyler were supposed to be cleaning out the spare bedroom and setting up the beds for the boys.

Yeah, that didn't happen. They set up the beds, but all the..umm...crap that was in the room just got pushed to the side, not cleared out! So the night that we arrived home, here was I, exhausted, jet lagged and just a little bit irritable, PURGING that bedroom of everything in it, moving a dresser, etc. It wasn't very pleasant experience for anyone who witnessed the event, I'm sure.

And that was it. I never did any decorating in there, just left it as it was. There was very little room for the boys to play in there and I never felt satisfied with it because it was just thrown together.

About a month ago I decided I wanted bunk beds in their room. Never mind that Axel is petrified of heights. Never mind that I loved their sleigh beds. I just wanted to give them more space.

So what do you put in a room with a 8 year old and a tween 12 year old? Well, hows about some Rock-n-roll???? I found the bedding first, and did the room around that.

First, I found this bunk bed from IKEA. It's the Kura reversible bed, which can be used three different ways. What I liked most is when you flip the bed over to use as a bunk or loft bed, the top is only chest-high for me. Not too high for Axel and not a pain in the neck to straightened the bedding on the top bunk! When you buy it for $200 at IKEA, it looks like this:

It's ok looking. The blue makes it a little too "little boyish" for my taste, but when I googled the bed I found a lot of people who had done all kinds of things to them, which got my wheels turning! Dean and I transformed the beds. I love how the chrome paint turned out when I textured it. 

So, here's the rest of the room....

The walls went from yellow to light gray. (they look a little greenish in these pictures! LOL)

It still looks a little plain to me. I'm thinking of taking down some of the decals and doing a cityscape or something, and getting black shelves for Asher's toys.

Axel's favorite part is the new bedding. He LOVES guitars!

They really love their new space!