Blogging about life in Minnesota, raising our six 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!"

Monday, July 29, 2013

Poor dogs!

The night before Dean and I left for Serbia, in the chaos that is me getting ready to leave the country, about 9:00 pm I sat on the couch to catch my breath, go over my list and see what was left to be done.

That is when I looked at my dogs.  They were in desperate need of grooming. Then I realized that while we would be gone, the back yard would thaw out. The mud...omg the mud!  I decided the dogs MUST be shaved down before we left. There I was, until 1:00 a.m. bathing three dogs and making a mess of the house by shaving down down all three of them.

 That was back in April. Sadly my dogs have been very neglected since then. Also, Zurri is getting fat. I want Zurri and me to start  a new exercise program but to be honest, I can't take her in public because she looks like a stray.

Zurri feels so much better!

She says she's ready to start working out!

Tomorrow is Dudley's turn!

Thursday, July 25, 2013

Shriner's Update

Today was our appointment at Shriner's Hospital.

It was Axel's 2 year post-op follow up. He is doing just great and the surgeon is pleased.

Asher had his c-spine and then full-spine X-rays. He has horrible kyphosis but it is completely positional and not something we need to worry about for now. His AAI is...well...not really AAI.

AAI is movement between the C1 and C1 vertebrae. Last year Asher's was borderline, but now it looks fine, measuring at 4mm which is within normal ranges.

And then there is AOI. That is the movement between the Occipital (the head) and C1. That measurement needs to be under 10 mm, and anything over that needs to be fused. Ashers measures 8.5-9mm. Most kids don't get worse after age 8, but Asher has delayed bone development. So, we're going to recheck him in 2 years and see where it's at. For now he has no restrictions. YAY!

Wednesday, July 24, 2013

Hello Philly!!!

This morning Axel, Asher and I hopped on a plane bound for Philadelphia, PA. The boys have a check up with their spine surgeon at Shriner's Hospital on Thursday.

This is Axel's 2 year post-op check up. Can you believe this is what we were doing 2 years ago in May? I don't know what was worse: seeing him in the halo, knowing the screws were boring into his head, or knowing we had months ahead of us to deal with this contraption! It seems like a long time ago now, and all that is left are eight faint scars on his forehead and the back of his head. The scar on his hip, where they took the bone graft, is nearly invisible.

Asher is also being seen. When he first came home in December 2011, I made sure his AAI screening was one of the first things done. Everything looked find then. Six months later the kids and I were driving to D.C. for the 2012 NDSC conference, a trip which included Axel's one year post op visit. Well, two weeks before the trip, Asher started playing with a clicking sound in his neck, which is the same thing Axel had been doing prior to his surgery. Axel's surgeon was kind enough to squeeze Asher onto the appointment schedule That's when we were told  his was borderline and would need to have precautions in place to prevent injury to his spinal cord.

I should have started buying lottery tickets right then.

Asher can do some interesting things with his neck. We call this "taco neck". To see it in person makes people squirm. Just try putting your ear below and behind your shoulder like that!
Asher, spring 2012- taco neck

There is a theory that Asher's first screening done when he got home was not accurate because his bone age was significantly delayed due to malnutrition, so there wasn't enough calcifications on the bones for it to be seen. 6 months later, after rapid catch-up growth and good nutrition it showed up. He's grown A LOT in the last year, so I'm really anxious to see what his new X-rays show.

Here's the horrible part. I would rather them tell me it's time to do a fusion than deal with him being on restrictions forever. This kid is BUSY, a climber and frequent faller. I have 10 near heart attacks per day. Axel's AAI was much more obvious and left no doubt that he'd need surgery.

I will update more on Thursday after our visit.

 Every time we come out here (and I think this is 5th or 6th trip) we don't have time to see or do anything fun in Philadelphia. This time we're going to hang out a couple extra days. Friday and Saturday are scheduled to be some really fun days with lots of friends.  I can't wait!

Monday, July 22, 2013


This is my 2000 blog post! Can you believe it? I'm going to re-post my very first entry,  written 8 years and one month ago. 

Thursday, June 30th 2005

It Sneaks Up On You

It sneaks up on you ya know. When you have little babies nobody ever warns you that one the not so distant future....they're going to grow up and do adult things. Like driving! Last winter I realized just how fast it happens.

When I learned to drive, (I swear it feels like it was yesterday!) I took all three of my behind the wheel classes before my parents...ok my mom...would allow me to drive the family car. I remember them arguing about which vehicle I should drive, the suburban or the cadillac. Each parent had an argument for why I should drive the other's vehicle. At the time I thought it had to do with how difficult either one was to drive. Now I know better!

Fast forward to 2005, and my 16 year old son Tyler has just gotten his permit. Much to my surpise, things have changed! The first change is that now, when a kid takes behind the wheel, they have one lesson then come home with a list of things to practice before the next lesson! What? You want this kid, who's only been behind the wheel once in his entire life, to drive MY VAN? Not only that, but it comes with a little note like, "15 hours practice, then schedule you're next session."! Do they not realize that 15 hour is a very long time?

Now, I have convinced myself that I am going to be the "cool mom" and let Tyler drive all the time. I can handle this. I am a grown up, have survived the military and everything. I should be able to handle a few hours of drive time with my son. I was soon going to come to the realization that teaching my child to drive was to be the scariest experience of my entire life! It out does Army basic training, tear gas chambers and gas mask training. It outdoes childbirth even.

Our very first time went something like this:

My older son Noah (age 17 but not yet a driver himself) was in the back seat. I calmly handed the mini-van keys over to Tyler, noting that he was grinning so hard I thought he might actually hurt himself. He climbed behind the wheel, looking around for the shifter like he knows its there...somewhere. Calmly, and without a word, I reach over and touch the end of it with my fingertip. He giggles, "Oh yeah. It was in a different spot in the instructors car." I swallow hard, then double check to make sure my seatbelt is securely bucked. I look back to see that Noah is now sitting in the middle of the back seat, looking for something to hold onto.

I encourage Tyler to adjust the seat to fit his long legs, instead of it's current setting that fits my very short ones. He opts to leave it where it is, with his knees about 6 inches from his chest, leaving little room for the steering wheel. I remind him to adjust the mirrors to fit his line of vision, he opts to leave them where they are too. Then he reaches over and turns on the radio. I turn it off. Afterall, I need to concentrate here.

Now, we have an extremely steep driveway, with a 10 ft drop on what is now the driver's side. (Lets remeber that I, the mom, am on the passenger side of the car. This is NOT the place to be if you have control issues!) Picture a rollercoaster. As you come up the hill you cannot quite see over the peak to the other side. This is exactly how our driveway is. Funny I've never been afraid of this driveway before, but at this moment I have visions of us finding the edge and rolling down that hill. Tyler makes himself very tall in his seat to watch the nose of the van go up over the crest of the hill. By the way he's holding his breath I can tell he's scared to death. Then realize I'm holding my breath too!

Having survived the driveway (I only had to hold my breath a few seconds before it was over.) we pull onto the street and C-R-E-E-P up to the stop sign. This turn will put us on a busy highway with many blind entrances. Suddenly I want out of the car because I feel like I'm going to be sick. But I suck it up, say nothing, and hold on just a little tighter, hoping that he can't see my white knuckles on the door handle.

Out on the street, I realize how very narrow the lanes have become, especially since Tyler clearly has trouble staying in his! 55 miles per hour seems much like the Indy 500. Fortunately I don't really have to worry about it, because Tyler won't go more than 40mph. In my side mirror I notice the cars stacking up behind us and decide that when a kid gets his permit, the parents should be given a "student driver" magnet for their car. (a few days later, on yet another practice session, I wrote in the dust on my back window "student driver, pray for the mom" but Tyler didn't think it was funny. Go figure.)

I was trying not to say much too him because I've heard that a distracted driver is a dangerous one, but there was a major intersection coming and I couldn't help myself. "Ok Tyler, now we're coming up to this stop sign. You can start to slow down now....Tyler...Slow DOWN now Tyler. Oh my God SLOW DOWN!!!! STOOOOP!!! How come you didn't slow DOWN when I told you too? Don't you know when the light is red, and the cars in front of you are stopped you have to stop too, and that takes TIME and DISTANCE???????"(ok, well yeah I was near a nervous breakdown, and I kid you not my chest started hurting with heart attack like symptoms.) I am pretty sure I heard Noah stifle a scream in the back seat. I looked back to see his expressionless face had gone white as snow.

We drove about another 2 miles and it started sleeting. I also noticed the traffic was picking up as it was peak rush hour. I made the executive decision that our little practice session was going to be cut short. I told Tyler to pull into the next convenience store, and when we parked (which took several tries to get the aim just right) I gave him a dollar and told him to go get a pop. When he came back I was sitting behind the wheel.

For the first time, I hear a 17 year old voice from the back seat, "Now I know why I don't want to drive."

There is no way we're going to have 15 hours of practice time before his next behind the wheel session. In fact, we're going to LIE!

It's time

Life has taken many twists and turns over the last 2 1/2 years. Nothing I could have ever predicted, but nothing I have regrets over either!

Sadly, the time has come for me to walk away from one part of my life. I've written about it here several times, but the post that explains it the most can be found here.

Here's a link to my craigslist ad. I cried while I wrote it. (really....I cried writing a CL ad!) Please feel free to pass it on. The sooner I can say goodbye the easier this will be. 

Sunday, July 21, 2013

It's not them, it's me

Parenting kids who are not biologically yours can be difficult. Parenting kids who have come from traumatic situations is tough. Parenting post institutional children is...well its difficult and tough.

Some days I'm not very good at it.

When Axel is e.x.t.r.e.m.e.l.y slow doing e.v.e.r.y.t.h.i.n.g, I have to remind myself a gazillion times per day that this is just how he is wired. He doesn't have a "fast" speed. His speed options are "slow" or "sleeping". It is hard not to get irritated when I'm trying to rush everyone out the door
Ice cream face! Most of his melted before he ate it.
Its not him, it's me. I need to realize this will never change and I need to allow him more time. I am terrible at math, but I am a good problem solver. I need to remember there are many things Axel is really good at, and that being quick just isn't one of them.

When Axel is getting lost in some sensory experience, and his eyes glaze over and take on that far-away look,  I need to cut him some slack. I need to remember all the years he spent wrapped up straight-jacket style and that his brain may never figure out what to do with certain types of input. I need to remember that sometimes he just needs to check out for a few minutes.

When Asher lays on the floor for hours on end dangling a stuffed animal over his face and grinding his teeth, I need to remember that he spent 7 years doing just that. He didn't know how to do anything else, and so unless he is being directed through an activity, this is his go-to place. It's hard to watch him leave reality when I know how much he loves it. I need to remember that those 7 years have far more influence on his brain than the 19 months he's been home.

When Asher is exercising this new defiant attitude he has developed, I need to remember this is a normal developmental stage for a 3 year old, which is exactly where his 8 1/2 year old self is! I need to remember this is PROGRESS!! That his new-found whining is communication he never had until last week, and instead of being irritated by it I need to celebrate it. (and to be honest, I find it kind of cute...for now.) Yes! Yes! I will celebrate WHINING!! When he asked me, in sign, if he can put his swim trunks on (because he wants to play with the hose...again.... I need to enjoy the fact he has enough language to make the request!!!

When Abel stomps his foot at me when I tell him "no", I should not get mad. Abel has spirit. The spirit his caregivers loathed is the one we need to embrace.  He is a survivor and a strong one at that. When he asks me 700 times for something I have told him he cannot have, I need to remember that just three months ago he had zero ability to ask a question or make a request. Now he can sign "I want drink please", or "I want cup please" (which is his favorite stimming object that replaced the block) He can tell me he needs to use the bathroom. He can ask if it's time to put his shoes on. He can sign "Want outside please" and then "Swing please" to tell me what he wants to do out there. Three months. Amazing.

He was happy with the corn dog....

 until he found the stick. Who put a STICK in my food??? Complete Meltdown ensued. 

When Abel pees his pants in fear when we walk into a store he is experiencing for the first time, or a doctor's office, or when he is very rough with his therapist when I'm not in the room, I need to remember his history. I need to remember that "therapy" wasn't always a pleasant therapuetic experience for him. When he acts as if we are murdering him by making him sit in a new chair for the first time, or a new swing, or a put a pencil into his hand that he has never seen before, I need to remember that his strong flight or fight response is what saved his life. (surely my neighbors have heard this scream by now and wondered if they should be making a phone call!) When he freaks out because I put a piece of tape on his finger, I need to remember "humor" is a developmental milestone, and he is not there yet.

Most of the frustrations I have in parenting our adopted kids are my problem. They are my reaction to parenting kids who have histories and habits that developed long before I came into the picture. I need to remember that kids who have Post Traumatic Stress Disorder (PTSD) have memories that can be triggered at any time, in any setting, and I will probably have no idea what triggered them. Those memories can make my life difficult and it is not the fault of my child.

For every time through the course of a day that I must give out reminders, I need to give myself three. It's only fair, since it's not them, it's me.

Saturday, July 13, 2013

It's why we chose them

When we chose to adopt, all we had left at home was 14 year old Angela. We didn't want an infant or toddler. Dean and I are on the older end of the age range to be considered candidates to adopt. But there was more to it than that. We specifically chose kids who nobody else wanted. Kids who were too old to be "cute".  Kids who probably have more baggage than the younger ones. Kids who's chances of ever being adopted in their own country were far worse than younger kids with the same diagnosis.

We chose Axel. He was 10 1/2 years old at the time. He had lived in four different settings by the time we arrived in the picture. The previous 1 1/2 years had been in a foster home, but they were very much done with him and he would soon be headed back to a either the Kulina or Subotica institutions, where he had already spent 7 years of his life. We chose him for all the reasons everyone else had passed him over. He had Down syndrome, he was older, he had behavior that was difficult to manage. All those things made him perfect for our family.

We chose Asher. He was 7 years old at the time. He lived in a world of isolation, disconnected from reality. He didn't smile. He didn't laugh. He didn't cry. Asher merely existed. He wasn't cute. His tongue was gigantic from seven hears of sucking on it. We chose Asher for all the reasons everyone else passed him over. All those things made him perfect for our family.

We chose Abel. He was 10 years old at the time. He was hyperactive. He was destructive. His behavior was atrocious and the staff couldn't really manage him. He could not talk. He was still in diapers. We knew what his future looked like. It was dark and dismal. While we were there twenty 18 year old kids were transferred to one of the worst facilities in all of Serbia. It is where Abel was destined to go.

None of them have been easy kids. It has been work to add them to our family. Between the therapies, the behaviors, the teaching how to "be" in the world, it is work. But do you know what? At the risk of sounding like I'm bragging, it is work that apparently Dean and I do well.

Many people have asked me if I think any of our kids have RAD (Reactive Attachment Disorder). I think its an interesting question. Some people don't think it's a "real" diagnosis. Let me tell you, I lived with RAD long before we adopted kids. Time in a NICU, extended time in hospitals, traumatic births can all cause RAD. There are so many potential causes, and what doesn't affect one child can have catastrophic affects on another. That said, I think every child who comes through either the foster care system or from institutional care has *some level* of attachment disorder. It has taken Axel two years to feel like he's really attaching to us. Asher was much faster, and he doesn't have the passive aggressive behaviors so common among kids with RAD, but he is only ever-so-slightly more attached to us than he is to a random stranger at the mall. Abel is probably the one with the most attachment problems, though it could seem that way since he's only been home a couple of months. Thankfully we've been able to extinguish the most dramatic of his negative survival-skill behaviors (like flipping over furniture, attacking other kids, etc.) What we are left with is zero eye contact, minimal touch accepted, passive aggressive behaviors (which when combined with OCD which is oh so fun!)

And do you know what? If given the opportunity we would absolutely do it all again. Yes, we absolutely would. 

Saturday, July 06, 2013


Five years ago we found the most awesome camp for Angela. Wisconsin Easter Seals Camp Wawbeek!! 

Camp Wawbeek has several different sessions throughout the summer, for a wide variety of ages and special needs. It is staffed 1:2, and then each 3 person team is part of a larger group of around 8 campers and four counselors. If your child isn't really ready for a "camp" experience, they also have a respite camp for those with more challenging behavior or medical needs. Respite camp has a 1:1 staff to camper ratio. It is open one weekend a month year round. The very first time Angela went to camp Wawbeek, she went for a respite weekend so they could get an idea which camp would be a better placement for her. At the time her behavior was really challenging. Although she required 1:1 staffing, the director felt Angela would like the regular camp better because she's a very capable young lady. So the staffed for her at a 1:1 ratio but had her attend the regular camp. I was really pleased they were able to see past the behavior and to the real Angela. They made adjustments to what they normally do and made accommodations to find the best fit for her. Now, years later, Angela's behavior is only rarely a problem and she attends the regular camp with the same camper.

Angela has been anticipating camp for weeks. We've been going over the calendar each day so she's gotten a daily reminder of when it's coming. Those who know Angela know how she gets a bit obsessed about what's coming up on the schedule. LOL Anyway, at 8:00 on the Saturday night before camp I decided I should get the rest of the camp forms filled out for Monday's drop off. When I opened the PDF's to print them I realized I had a problem. Drop off was the NEXT DAY! OMG!!

Panic ensued. I had planned on spending the next day getting laundry caught up so I'd have 12 days of clothes to pack for her. Instead I thanked God for 24 hour shopping at Walmart. Angela was due for some new summer clothes anyway, I just hadn't planned on it being that day.

I have gotten good at this packing for camp thing. I try to pack so Angela is as independent as possible while at camp. The less help she needs the better it is for her.

This is how I do it: Each 1 gallon bag below contains a full outfit: shorts, shirt, socks, underwear, bra. All Angela has to do is open a bag and put on everything that is in the bag. But this is in Wisconsin, and just like where we live in Minnesota, several seasons could happen within the same day, not to mention cool mornings and evenings.  I pack several pairs of jeans and sweatshirts to deal with that.

Here is all of Angela's camp stuff. I found a new product by Suave. It is a 3-in-1 shampoo/conditioner/body wash. The one I found came in a pump bottle, which is perfect for Angela who has trouble managing screw or flip-top bottles.

If I only stop once it is a 3 1/2 hour drive to camp in the Wisconsin Dells. The entire drive is full of great anticipation on Angela's part! Finally we reach the entrance into the Wawbeek camp forest!

Angela always tells me, "Just drop me off. Please?" Because she just wants to get on with camp already! LOL Every year I have to remind her there is a whole check-in process that we are required to go through, dropping off meds with the nurse, getting her things unpacked, etc.

And then....then I get in my car and drive home. Alone. Three and a half hours all to myself! We spend many days keeping the other boys busy, and going over the calendar so they know when Angela is coming home. They really miss her a lot, but before we know it, it's time to go back to get her!

She is always SO EXCITED TO SEE ME!!! She nearly knocks me over as she comes barreling toward me for a hug. This time Axel came along and he got the same warm welcome.

Angela with one of her camper friends.

And her camp counselors.

Bye camp Wawbeek! See you next year!

I haven't quite figured out how we will do it, but we're hoping to send all four kids to camp together next year. I know three for sure will love it. We'll see about the 4th. LOL