Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

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

Saturday, July 28, 2012

NDSC convention: Getting There

It's a long drive to from Minnesota to Washington D.C. If we had driven straight there it would have been around 1,100 miles. I don't do anything the "easy" way. Well, we had trouble even getting out of town in the first place. Getting gas, stopping at the bank, etc. We made it a whole 90 minutes down the road and met my good friend Diane Higbie for brunch.

The first night the we made it to Michigan City, Indiana, which is 489 miles. If you look at a map you'll notice this isn't really along the way. Yeah, the last time Angela and I went to New York I messed up in the exact same area. I'm blaming my GPS. They kids were wiped out!




No pictures of swimming kids because...well I was in the water with the kids! This is when it occurred to me that I need two adults to take the kids swimming. Angela can swim but the boys are each HANDS ON in the pool. Axel doesn't understand why he can't just bend over and pick up something that's under water and tries to breath when he's under there, and he frequently tips over in the water. This happens while I'm holding Asher with my other hand and he is trying to pry my fingers off because he wants to swim! He is constantly putting his head under water, coming up laughing then doing it again. He's like holding a slippery worm in the water.

The next morning I got the kids up bright and early because we had to nearly double our miles from the previous day! We had 739 miles ahead of us. Good morning from my tired kids!


We were on the road by 8:00. This day we drove from Michigan City, IN to New Egypt NJ.
We arrived at 11:45 pm. It took about an hour to get everyone to wind down and get to bed. I promised the kids a swim in my friend Tink's pool in the morning, but in order to have a second set of hands we got up early to eat and get in the pool. I do NOT belong in a pool at 8:00 a.m. but the kids had fun! Asher was NOT happy when it was time to get out, and kept trying to drag everyone back to the pool.


We were on the road by 10:00 a.m. headed to DC, another 180 miles away. Since the kids had a swim first, they were pretty quiet. About an hour from our destination I received a phone call. The person who was lined up to help me out with the kids while we were at the conference called and canceled. I was not happy! Had I known before I left home I could have brought another caregiver along. This ended up causing me major difficulties over the course of the weekend and there were many things we weren't able to do because I only had one set of hands. It was a MAD scramble to find someone who could help me. Thankfully I have a friend in the D.C. area who was kind enough to rearrange her family's entire schedule to accommodate us.

Next up...the Convention!!!!

Wednesday, July 25, 2012

I know, I know!

Between driving, doctor appointments at Shriners, and a couple days without internet I haven't been able to catch up on my blog! I'm hoping to be home late tonight or early tomorrow, hang out for a day then get caught up!!!

Sunday, July 22, 2012

Really?

When Angela was born and we received her diagnosis of Down syndrome, I quickly immersed myself in the DS community. (and that was pre-internet days!) I became a board member of the the DS association of MN (DSAM) 


When Angela was 7 I was lead to the Downsyn.com forums, which happens to be THE best place on the net to discuss all things related to DS!!! (and yes, even better than Facebook.) Downsyn is my internet home.


 As Angela got older I started public speaking, traveling all of the US. I've spent 17 years attending conferences and workshops - including the NDSC convention - and have met some of my dearest friends among the other parents with whom I share this walk. Friends I cannot wait to wrap my arms around again each year. 


 Imagine the feeling of shock I felt when, one week before the conference, I was informed that the director of Reece's Rainbow had contacted the board of the NDSC and expressed her concern because I was attending the conference. 


Did you just pick your chin up off the floor like I did? 


What in the world was the purpose of this? Was it to get me banned from the conference? Apparently the $20,000 which Reece's Rainbow contributed to the NDSC in the last year talks, because there is no way if I, as a general member, requested such a meeting that it would actually happen. Money talks people, and some will take advantage of that. That said, I never knew I was such an influential person that someone felt the need to express their discomfort at my attending a conference with several thousand other people. I will be careful to not let that go to my head.


Let me explain something: I did not drag my kids 1/2 way across the country because I wanted to engage in a dialog about Reece's Rainbow.  No. Like everyone else I brought my kids to a conference to meet others like them, for Angela to find her own voice in the Youth and Adult conference, to gather information about DS and the issues WE face in our family every day, and to see my old friends again. THOSE are the reasons I attend the NDSC conference. 

Saturday, July 21, 2012

With the Passage of Time it Happens




It’s happened to me.

It didn’t happen 5 year ago when I turned 40. No, I was still feeling pretty good at 40 and my skin was in decent condition. Unfortunately another 5 years of motorcycle riding and the passage of my 45th birthday a couple weeks ago brought with it some changes I’ve been trying to ignore.

Yes, my skin is finally changing. All those years out in the sun unprotected as a kid have taken their toll. (remember all those blistering burns?) I’ll be honest, I haven’t really paid much attention to my skin. I mean, it’s there. I wash it., dry it and I’m on my way. Unfortunately age spots, crow’s feet and frown lines have now found their way into my morning skin inspection. I’m starting to pay attention!  Oh, I’ve spent money on “quality” products before, but I’ve never been impressed with them.

 Dove has come out with a revolutionary line of premium body wash. These products contain the highest concentration of NutriumMoisure technology of all the other Dove products! 
Since I'm really wanting to start over with skin care, I decided to try the 


Oh I am loving it! It contains skin natural building blocks to help improve skin's look over time, and can give you visibly more beautiful skin in just one week. My skin not only looks better, but feels amazing! 

Dove® VisibleCare™ Renewing Crème Body Wash is designed to nourish and replenish your skin. In the past I've tried products that leave me feeling like I have a film covering my whole body, but The Visible Care Renewing formula has a rich, pearlescent cream that creates a luxurious lather, then rinses clean. 

I have a very sensitive nose, so anything I try has to be appealing. I want whatever I use on my skin to make me feel clean and smell beautiful. The Visible Care Renewing Body Wash has a fruity floral fragrance that includes a modern combination of Pink Mimosa and Pomegranate. I absolutely love the scent! 

After one week of using the product, I can say I have visibly more beautiful skin from a body wash, and as we've shed those winter coats it's time to show it off!

So what is your favorite skin care regimen? Leave me a comment, and while you're at it you can enter to win the Dove sweepstakes, and I have a coupon for you below too!

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Thursday, July 19, 2012

DC or Bust!

On Tuesday morning the kids and I loaded up the van for a marathon trip to Washington D.C. for the 40th annual National Down Syndrome Congress convention. 

Ok, I have had about 5 people tell me I'm crazing for taking my kids on this trip alone. Ummm really????? Who do you suppose takes care of these three every day? They go everywhere with me, so why not on a road trip? Ok, I will admit that two weeks ago I was kind of dreading the drive with four of us (and all our crap) crammed into the car! However a week ago Dean's car died on the side of the road so we finally bit the bullet and bought a van. Oh how I'm loving my Sienna! The kids are all spread out and it's awesome! 

Here we are, ready to pull out! (the van is no longer this clean or organized!) 

The first day we had trouble just GETTING out of town! Oh this drives me crazy when this happens. I just want to GO, not have one delay after another. Stop at the bank, stop to get gas, meet a friend for lunch, then GO already! LOL The first day with 11 hours of driving we only made it to Michigan City, Indiana, which is only around 450 miles. 


On Wednesday morning we got up early and ate breakfast, and were in the van by 8:00. I was so proud of myself for getting everyone moving and pretty much stress free. That was until we got on the freeway and I realized we should not BE in Michigan City and that I really didn't know where I was going. Unforunately at this very moment is when my GPS app decided it couldn't connect to the network and I had to drive by my internal compass for about 20 miles. This is never a good thing.

Finally we got going the right direction. We drove all the way to New Egypt, NJ, which is 739 miles. Yes, we nearly doubled our miles. Yes, we spent 15 hours on the road. (I think 3 hours of that was spent at pit stops.) The last of which was four straight hours without a stop. Yes, my kids were ready to bed done with the van!

And because they were such angels the day before (and they really were!) and because I promised them, although we didn't get to bed the night before until around 12:30, we were up at 7:00 and in the pool by 7:30. 

By 10:15 a.m. we were back in the van. Asher looked at me like I was flipping INSANE! We took our time getting up to D.C. and arrived around 3:00. I was ready for a nap! 

We spent the evening meeting up with old friends and now the kids are crashed in their beds. Tomorrow holds big fun and we're all really excited!

Monday, July 16, 2012

A New Blog!

For those who have come here looking for information about Serbian adoptions and how the process works, I've started a new blog!

Finding Serbia is intended to be an information site, and also a place to feature adoptive families who are currently in process, as well as links to previous adoptive families who have already brought their Serbian kids home. So go have a read (although there is currently only one post up!) and meet some of the families. And if you have completed a Serbian adoption and would like to have your blog linked, please drop me a note.

Sunday, July 15, 2012

mOOOOOMMM!

My big brothers warned me. "Watch out! When mom decides you're getting a haircut and there are no haircut places open, it won't matter."


It didn't start out too bad. Snipping here and there. 

And then she said a bad word, and brought out the clippers!

She mumbled about "I should know better than to touch the scissors right before a big event. "

And the next thing I know, I look like THIS!

Feels better though. I'm always hot, so this is nice and cool.

 And then it was Axel's turn.

Wednesday, July 11, 2012

A Step Backward

When Angela first started walking (at age 24 months) she had orthodics made for her to support her then very flat arches. Several years of wearing those inserts in her shoes allowed her foot to form a very nice arch and by age 5 or so she didn't need them anymore.

Later, around age 10, I noticed that her right ankle was starting to pronate - or roll inward. This can eventually lead to problems in the knee, then hip, then later the back so we saw the orthotist and she was again given inserts in her shoes. She wore them about a year, and to be honest, I don't know what happened. Pretty sure I dropped the ball or something. She probably outgrew her inserts and I didn't bother to get a new pair made.

And here we are at 16. Angela has been complaining about her right hip, and we've been hearing it make a horrible popping noise when she stands up from sitting, and she gets really sore if she does a lot of walking.

So a couple of weeks ago we went to see an orthopedic specialist. What she told me was surprising. First of all, Angela does not have the hips of a 16 year old young lady with Down syndrome. The majority of people with DS  have low muscle tone. Angela has what is referred to as "mixed tone", meaning some areas of her body are loose (low tone) and others are tight (high tone). Hips are a problem area for many people with DS, but Angela's hips have very high tone. Not only are they tight, they are a bit too tight.

Here's a picture of some the hip muscles. See that white band labeled "iliotibial band"? It is the ligament that connects the iliac crest (top of the large hip bone) to the top of the tibia ) the lower leg bone.
Angela's iliotibial band is too short, making it always tight. Also, Angela's tibia, (lower leg bone) is a bit shorter than the other leg.

So, she has a tight, too-short muscle in her upper leg and a too-short bone in her lower leg. This makes her right leg approximately 1 inch shorter than the other. This may not seem like a lot, but when you spend your life walking like that, it does damage to the back. In fact, Angela walks slightly bent forward at the waist. This is due to that short muscle pulling her forward. Because she's walked this way her entire life, the ligaments at the front of her ankles have also gotten shorter. Walking straight upright is impossible for her.

Putting all of this information together, the orthopedic doctor suggested I talk Angela's neurologist and see if he things Angela also has CP (cerebral palsy). Not that this diagnosis would do anything for her, but it might help understand some things going on with her, considering the ortho also noticed that Angela's hand on that side is very tight too. All very odd considering the strokes she has were right-brain strokes, meaning they affect the LEFT side of the body. Hmmmm

Anyway, Angela has now progressed past the point of basic inserts in her shoes helping her. Her right leg needs significantly more help, so she was given an AFO.




You'll  notice the AFO does not have a joint in the ankle, meaning Angela is not able to flex at the ankle AT ALL! This is to correct a drop foot.

 Angela's gait was terrible before, and she has a horrible callous built up on the ball of each foot.


Guess what? She walks HORRIBLY in this brace! Yeah, it's going to take her time to get used to it, but she doesn't know how to walk in it, and isn't going to know how unless she gets some PT to show her how. Frankly, I hate this brace. I want her to get this brace instead. Angela's heel has never hit the ground first while walking, so she doesn't know how to make that happen. The other brace would make it happen.

I don't even like making her wear this brace. Although she's been wearing it to summer school (which is only 3 hours), I don't think we'll be taking it with us on vacation. She gets exhausted walking with it and she'll be walking A LOT in the next couple of weeks.

Angela's left leg was the recipient of an SMO.

Obviously the SMO is much less invasive. It is mostly correcting her now flat arch on that side, along with giving her ankle more support so it doesn't pronate.

Overall, I'm irritated with these braces. To me they seem like they're going to cause more problems than actually help. As soon as we get back from our trip we'll be making another visit to the orthotist!

Tuesday, July 10, 2012

Adam: It happened so fast

Over the years I've talked about Angela's friend Adam on my blog. Like Angela, 13 year old Adam has Down syndrome. Angela and Adam have been friends for several years. Although they go to different schools and only see each other once a week or so (well, daily right now since they're in summer school together) if you ask Angela "Who's your boyfriend?" She won't hesitate to say Adam. He made her 13th birthday very special. He's so tiny in those pictures!!! He towers over Angela now.



Adam died last week. He died, he saw Jesus, and then he came back.

A few years ago Angela started swimming with an amazing coach. Coach Keanne. A few months later we invited Adam to the swim lessons. At the time Adam wouldn't enter the pool without a lifejacket. I don't remember how long it took...not much time at all...for Adam's swimming skills to improve exponentially. Now, 5 or so years later, Adam swims competitively not only for the Special Olympics, but also for his high school swim team.

On Monday, July 2nd, Adam asked his mom if he could go for a swim in the pool at their apartment complex. They had just moved in and he'd been enjoying being able to swim often. Monica told Adam he'd have to wait for a few minutes. She needed to take a shower and when she got out she'd go down to the pool with him.

When Monica got out of the shower Adam was gone. She knew he'd headed to the pool without her, but he's an excellent swimmer so she wasn't too concerned. She got dressed, slipped her phone into her back pocket, and headed to the pool to watch her son.

When Monica entered the pool gates, there was no sign of Adam. In fact, there was nobody at all in the area. It was a hot 103* that day and there wasn't a ripple on the water. Maybe he'd gone to the arcade room instead? She turned to walk away, when a thought came to her, "Maybe he's swimming under water?"

Monica turned back to the pool, and when she did noticed something blue in the bottom of the pool. Adam was wearing blue trunks earlier in the day.

She went to the edge of the pool. He was sitting like he often does when he's challenging his own personal breath-holding record -sitting on the bottom of the pool with his arms up. Only there were bubbles coming up...but wait...they weren't bubbles...it was orange....it was vomit.

Monica dove in. She doesn't remember getting Adam - who is bigger than her - out of the pool. (Later the apartment managers would view the security tape, saying it looked as if she was dragging a feather across the water and up the steps with little to no effort.)

Adam wasn't blue, Adam was purple and he was already swollen. He had no heartbeat. Adam was dead. Monica screamed for someone...anyone...to call 911. But it was 103* that day. Everyone had their windows closed and their air conditioners running. Monica had just finished re-certifying for CPR a couple weeks before. She knew procedures have changed, and started doing chest compressions. In her head she repeated the steps, constantly screaming for someone to call 911.

One crazy man and his son were playing football, outside in record-setting heat, on OTHER SIDE of the apartment building. They heard the scream for help. At some point the apartment manager came out and tried to help. The fire department arrived but the apartment manager was at the poolside so the first responders came jumping over the fence.

Adam's heart was restarted and he spent a couple days in intensive care. He was released from the hospital on Friday. (obviously the week was much more complicated than how I just wrote it!) Today Angela saw her favorite person at summer school!

When the apartment management staff reviewed the tape, they confirmed what Adam said had happened. Earlier Adam and his brother (who is a member of the Coast Guard) were challenging each other. How many times could they swim across the width of the pool without taking a breath? On the video, Adam, alone in the pool, was recreating the challenge and was on his FIFTH trip across the pool when he hit his head on the side. Already out of oxygen from holding his breath and now stunned, he sank to the bottom. It was determined Adam had been under water approximately 2 1/2 minutes before Monica spotted him. From the time Monica entered the pool area until she jumped in was approximately 7 seconds. (she says it felt like several minutes.) He was probably without oxygen somewhere around 5 minutes total.

What the tape doesn't reveal is what Adam told his mom in the hospital. In the very matter-of-fact way our kids have of retelling events, Adam said, "I hit my head. I saw Jesus. I told him I can't come yet because my mom needs me."

And Monica's message to all of you, "I don't care how old you are, or how good a swimmer you are, NEVER EVER EVER be in the water without a buddy. Even Michael Phelps shouldn't be in the water without someone else around. Accidents happen, they happen fast."

Sunday, July 08, 2012

More on Adoption Spotlight

Last week I posted about the blog "The Adoption Spotlight", and the use of one of my blog posts without permission. I filed a complaint with the blog's host, Wordpress and received a notice the post had been taken down. Today I received the following email, informing me I have 14 days to take legal action or my post will be put back up. I am posting the email in it's entirety, however I have blurred the contact information including mailing address, email address and phone number, however I have left the blog owner's name in place.

*** Edited to add*** The address given is to the Warsaw hotel in Moscow. I'm waiting for Wordpress to give me the ip address of the poster.









Saturday, July 07, 2012

OT

Occupatinal Therapy comes in many forms. Here's Asher's therapy for today.




Thursday, July 05, 2012

Adoptions in Montenegro

US citizenship and Immigration Services (USCIS) is unable to resume processing adoptions from Montenegro.

When Yugoslavia dissolved, Serbia and Montenegro were all one country until they split back in 2006. Montenegro has now become party to the Hague Convention on Protection of Children, however the Department of State has determined they do not yet have a fully functional convention process in place. If you were intending to complete an adoption from Montenegro, please see the USCIS website for more information.


Wednesday, July 04, 2012

The Lost Key

There is a key missing from our house. Dean and I have searched everywhere for it. We have asked God for help and still nothing. We are at a loss, coming up empty regardless of where we look.

This key holds so many answers for us.

It is the key to Asher.


Asher is the easiest child I have ever parented, and I there have been many! He is so easy to please and very compliant. All we have to do is give him something to dangle and we won't see him the rest of the day. People would think having a child who is extremely easy to parent a good thing, but in the world of international adoption, this "easiness" has nothing to do with the child's personality and everything to do with his inability to leave the isolation he was accustomed in order to interact with the world around him.

When I first met Asher, he spent most of his day doing this:


But he had a lot of spunk. You can see it at the beginning of this video. The turning away and making faces.


This loss of 'spunk' is bothersome to me. Where did it go? Were the demands we put upon him just too much?

Still today, at 7 months home, he will spend most of his day doing this: (he's a little miffed here as to why I'm not telling him to stop like I normally do.)


But, as you can see at the end of the video he is easily stopped. I bet 30 times a day I go looking for him because he's hiding some where so he can stim undisturbed.

Every kid is so different. Axel came home CRAVING information. Asher? He came home happy to be in a family and to have a variety of things to dangle. If anything requires real thought - like learning to match colors - forget it. Not only does he have zero interest, but he just shuts down. And no, it's NOT too hard for him, he just doesn't WANT to. Keep in mind this is a boy who I can say, "Go get your shoes and your glasses." And he'll come back to me with his shoes, glasses AND socks because HELLO you don't wear shoes without socks Mom! He follows all kinds of directions. He is a very bright little boy.

We have discovered that if there are small kids around (developmentally 2-3 years old.) he becomes quite animated, making all kinds of sounds and very curious about what they're doing and wanting to participate. We don't have many of those kids around here. He has also started initiating communication. Signing "up" and making a noise to get me to pick him up. Signing "eat" and "more" when I'm eating something and he wants a bite, "shoes" when he wants to go somewhere, "all done" when he wants to be done with something.

A couple days ago, at 4:30 a.m. I decided that Asher isn't going to summer school. He would only be going for a couple of weeks before we leave for D.C., with teachers who don't know him (or the "rules" about hugging, etc.) and we'd just be handing him over to total strangers, reinforcing to him he can just go to anyone. Nope....all of that can do more harm than good at this point. And so the big kids with be headed off on 7:00 a.m. busses and Asher and I will be hanging out.

And while we're hanging out we will continue on the quest to find Asher's Key.

Tuesday, July 03, 2012

Birthday Boy

Today is a big day. The first child I gave birth to (because there is one more older than him. LOL) Turns 25! Happy Birthday Noah!






Monday, July 02, 2012

Thank you Wordpress

Email from wordpress:

Hi,
Your DMCA Takedown Notice has been received and reviewed.
In accordance with the requirements set forth by the DMCA, we have disabled access to the material identified as infringing. Please note that notification of this has been sent to the publisher of the material. Upon his/her request, we will forward the notice's details and provide them an opportunity to formally challenge this removal. If the publisher decides to submit a counter-notice you will be notified immediately.
Thank you.
--
Anthony

Sunday, July 01, 2012

Spotlight on Adoptions?

A couple weeks ago a new blog showed up. "Adoption Spotlight" focus is pointing out issues with US agencies and organizations who are involved with international adoption. There is very little on the blog  that is actually written by the blog owner. Instead he or she lifts things from other people's blogs.

Several people have asked me if I'm behind the "Adoption Spotlight" blog. I can assure you I am not! I found the link to it on another blog reformtalk.net  (another blog I occasionally read but don't necessarily agree with!) I contacted administrators of Reformtalk and asked who gave them the link, since they posted it when it was brand new. They wouldn't tell me who sent it, and had no idea who was writing it.

The Adoption Spotlight blog has lifted a blog post I wrote regarding Serbian adoptions, and stated "it is something of a guest editorial." I was very irritated to find this, because 1) I would not have allowed someone to post something of mine without linking back to my blog or putting my name to it. 2) It was taken without my permission. 3) I don't like the tone or "vision" of this blog and would have never approved something of mine to be posted on it.

I have contacted Wordpress, the blog host, and notified them there is plagiarized material on the blog. Wordpress in turn sent me the copyright guidelines and told me what I need to do. I have notified the blog owner (through comments since there is no other way to contact them) that they MUST remove my post. Not only have my comments not been published, but the writer has refused to remove my post.

Having said that, it is pretty easy to go back and read through any of my blog posts and compare them to what is written on "Adoption Spotlight" and see the writing style is not anything close to mine. I may be an intelligent and educated person, but I tend to write the way I talk. Most who read here who know me in person say when the read my posts they can hear my voice. You won't hear my voice anywhere on "Adoption Spotlight" except in what has been stolen from me.

Summer Days

If you want to keep kids busy, give them a bucket of water and paint brushes, and ask them to "paint" something outside. And don't tell them, but it's a good way to sneak in a little occupational therapy.







Since the kitchen remodel project is long-since done, Dean has been replacing our interior doors; removing all the old1970's hollow-core doors and replacing with oak. He's been been sanding them one at a time. Unfortunately the boy who doesn't want to let Daddy get out of is sight doesn't really care for the noise of the sander.


Learning to pound nails = teaching life skills. 

A week ago (the day of Destany's funeral) Angela left for a week at camp. She goes to Camp Wawbeek, part of the Easter Seals of Wisconsin programs. I think this is her 5th year at this camp, and she talks about it all.year.long! This is one of her counselors, Amy.

This hat is signed by all the other campers and counselors. When Angela got in the car she talked without taking a breath for 15 full minutes when she suddenly stopped. I looked over to see why she stopped...to find her sound asleep! LOL

While she was telling me her camp stories, she told me several stories about a counselor "Garby". I wasn't sure I was understanding the name right, and I asking her, "Are you saying "Garby" or "Darby?" She tried repeating the name for me, but finally gave up saying, "Ugh! Never mind! Just call him Jake!"

Axel was glad to see Angela. He missed her all week! I think next year he will get to go.

Asher was pretty glad to see her too! 

This should prove to be a fun holiday week, then the 9th the kids start summer school which will run for the month of July, only they'll be missing a good portion of it because we'll be taking a road trip to Washington D.C. to attend the 40th annual National Down Syndrome Congress Annual Convention.