Blogging about life in Minnesota, 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!"

Monday, August 27, 2012

How are we REALLY doing?

A few weeks ago, a very good friend of mine called me. We hadn't talked in awhile because life has 
been...well...busy. She finally asked me, "How are things really?"

I had to chuckle. She knows the potential for a really rough transition bringing a new child into the house; the potential for severe behavioral issues from any one of my kids, but particularly the one most recently added. A quick thought of my blog came to mind. Am I open enough here about the difficulties? I think so. 





















I have to say, things really are really good! Of all the kids Angela is probably the most difficult, but she was tricky to deal with before the boys joined us. If there is ever a problem with her it's stuff I would consider very normal sibling issues (like when she tells Axel, "Don't look at me!") which are minor, but more often it's just her own "stuff" that rocks the boat. Like when it's time to turn off the T.V. to come eat dinner. I don't argue with her, as there is no point in engaging her at this point, so I just unplug the t.v. and and leave the room. Most of the time she comes to the table then, other times she stews about it for a few minutes. If that's the most severe problem we have with Angela, I can handle it. LOL 

Axel is really a very easy kid. He occupies himself   with a variety of toys and activities.
 He loves most new activities I present him with, provided they don't require him to THINK. He it's something has to learn, or put some type of effort in, then things are not quite so easy. Eventually he gets it and can be found later initiating the activity on his own.  Right now he's very interested in numbers and the calendar, and spelling words. He now finger spells several. It's so fun! The only time Axel really gets into trouble is if he and Angela are playing together and he gets over stimulated. When they play together I keep a very close eye on things, often having them move their activity to the living room.


And then there is Asher. Could God have given us an easier kid? I don't think so! Unfortunately the fact that he's "easy" is because he doesn't really know how to do anything. Getting him to engage with toys is very difficult. He'll do it for a few minutes if you're right with him, but he had 7 years of laying on a floor with nothing at all to do or play with, so that is his default now. Several times I day I have to go looking for him, and most often find him in his bedroom laying on the floor in a patch of sunlight, lounging like a cat. Old habits die hard! Even so, every day we see changes: discovering a new toy he'll play with himself - for a couple minutes anyway, a task he can now do himself, a new food he can eat without my pureeing it, etc. When he starts school in a week we're upping the ante a bit and will be requesting more from him. ;-)

So yes, things are THAT easy. Really. Yes, adopting one more does put us at risk of getting a really difficult kid. We know that. We had the same quiet fear when we were in process to adopt Asher. Our house was (still is) very peaceful. What if we wrecked that???? I think every adoptive parent probably has the same reservations each time they decide to do it again. We'd all be a bit crazy to assume every adoption would be as easy as the two we've already done.

Dakota County Fair

It's fair season here in Minnesota. A couple weeks ago the weather was perfect for an evening visit to the county fair! I took lots of videos but only a couple of pictures.






Then we hit the midway. Axel and Angela rode the kiddie roller coaster (the 'screaming' you hear is actually another ride right behind me that needed a belt replaced!)


When they got off I just knew Asher would love riding it. The vibration, the speed...all of it is right up his ally. Dean and I discussed. Should he or not? We opted for yes and I rode with him. I was right, he loved it. When we got off he tried to drag me back to the entrance.

Angela dragged Axel onto another ride. A little fast for him but I think he liked it. Angela? The faster the better for her!


When it was time to call it quits, we got one last treat of Dippin Dots. A new experience for Axel and Asher. Axel was a good big brother and made sure Asher got his share.

Sunday, August 26, 2012

Go'in to the Zoo zoo zoo

This spring Dean's hours got cut at work. That means he lost 20% of his pay, but it also means he's home one day during the week. He had been taking Wednesdays off, but a few weeks ago decided to change things up and take Fridays off instead. The cut in income has hurt a bit, but the long weekends with my most favorite person in the world have been great!

It's been so hot here all summer we haven't really been able to do much outside. Angela does not tolerate the heat well and uses a cooling vest once it hits 80*, but we've been in the high 90's to over 100 and her cooling vest doesn't do any good at that point. But a couple weeks ago the temperatures finally started to drop into normal ranges! The Minnesota Zoo is just minutes from our house so that's where we headed. It's the first time we've been there this summer.

Because the zoo is closely and we have a membership, we only visited parts of it. Apparently all the pictures I took, except for the camel, were in the farm. LOL Going to the zoo is a great way to introduce the boys not only to new animals they'd never heard of before, but also to learn the ASL signs for them too.

Angela was the only one to ride the camel. We didn't even bother to ask Axel knowing he'd be afraid of it and Asher...well...I don't trust him to stay on and I didn't want to ride. LOL







It wasn't easy to get Axel up on the tractor. He really wanted to, but he is petrified of having his feet get off the ground even a few inches. He'll climb up the climber in our back yard now, but things that are unfamiliar? UGH! Takes A LOT of coaxing!

 Asher, on the other hand, has no fear of anything and climbs anything that is remotely climbable! Notice he was already up there and seated while I was still trying to get Axel to step down the steps they have in place.





KIDS IN THE COOP!

Climbing...

Climbing





Always climbing.

Thursday, August 23, 2012

Nickelodeon Universe Responds



Today I received a phone call from Mr. Eric Engstrom, director of Mall of America attractions. He was responding to the online complaint form I filled out regarding our experience at the mall on Monday. I must say, I was pleased to get a phone call from him. I mean, you fill out and online form and hit "submit" and trust that someone is going to actually read it!  And is Jimmy the the tech support guy reading it or someone who can actually DO something?  Mr. Engstrom gets bonus points for reading my blog post to find out the whole story. ;-)

Mr. Engstrom was not at all happy to hear about this situation and how it transpired. He reacted personally to the discrimination that occurred. Why? Because Mr. Engstrom has Cerebral Palsy (CP). He has spent his entire life dealing with similar situations and he wasn't happy to hear it happened on his watch.

We discussed all the details of the incident. He acknowledged the inappropriateness of the discussion that took place about Angela with her standing right there, along with the reaction of staff to my request for Angela to ride independently. Mr. Engstrom never made excuses for their behavior. He never made excuses to cover their butts until he had an opportunity to speak with the staff who were involved so he could backpedal later like some other department heads might do. No, he never did any of that. I so appreciate him for the way he discussed this with me.

Mr. Engstrom asked me what I would like to see happen, including how they could make it up to Angela and the boys.  I told him I didn't want anything, other than to make sure this doesn't happen to anyone else.

I have Mr. Engstrom's word there is change coming to the Mall of America! We discussed several options for training staff in the area of disability awareness. After all, they have countless people with a wide variety of disabilities coming through the mall on a daily basis. The staff needs to know how to react appropriately. Training policies at the mall will be re-written.

While I did not want any type of compensation, Mr. Engstrom has given us four Nickelodeon Universe wristbands that will not expire.

Thanks to my readers for your support as I navigated dealing with this incident. I know many of you are raising kids who are differently abled. Please, if something  happens to you, don't be afraid to speak up. Don't think of it as "making waves". Instead realize bringing an issue to light can create change so those coming behind you don't have to experiences it themselves.


Wednesday, August 22, 2012

Nickelodeon Universe follow-up


I spent most of yesterday morning making phone calls to address the situation that happened at Nickelodeon Universe at the Mall of America.

1)  I filed an online complaint with Nickelodeon Universe. I wonder who actually gets those?

2) I contacted the Minnesota Disability Law Center. They took all the information about the case and said it would be approximately one week before I hear back from them.

3) Contacted the Minnesota Governor's Council on Developmental Disabilities who was not happy to hear about the incident. They gave some input on additional calls to make. 

4) Contacted the Minnesota Department of Human Rights. They took my information and got back to me within a couple of hours. They took a formal statement and informed me about the process. They said it was a clear case of discrimination based on disability. 

5) Contacted local news stations (KSTP, WCCO, and KARE) about the incident. I haven't heard back from any of them.

Tomorrow is another day. Since I got all these phone calls and conversations completed I can spend tomorrow doing fun stuff with the kids!

Monday, August 20, 2012

Mall of America and Disability awareness

Today I made a spur of the moment decision and took the kids to Nickelodeon Universe at the  Mall of America . For those who are new here, my three youngest kids, Angela 16, Axel 12 and Asher 7, all have Down syndrome.

Angela goes to NU all the time. She is a total adrenaline junkie and has ridden every ride there. The only things she doesn't do are the new ropes courses which are beyond her physical ability. She rides every roller coaster, every stomach-turning spinny ride, everything. She has no fear. She has been to Disney and ridden the Dueling Dragons, Men in Black Alien adventure, The Incredible Hulk, Space Mountain, and the Tower of Terror, just to name a few.  If there is such a thing, Angela is a ride pro.

What Angela does have a problem with is navigating the stairs that are often part of the ride queues. At Disney this wasn't an issues because we were there as part of her Make A Wish trip, so we went through the handicapped entrances. At our local amusement park, Valley Fair, she uses the handicapped entrances because standing in a crowd of people is difficult for her. Using that entrance she usually waits the same amount of time she would have in the queue,  just  off to the side and not in a mob of people.  (she doesn't like waiting at stop lights either, by the way!)

So at Nickelodeon Universe we went to the first ride. It's the little trucks and just the boys were going to ride. I went to the HC entrance and waited. The attendant asked to see my chaperone pass. "I need to see it so you can ride free." she said. "I don't want to ride. I just want to help them get on safely." She said ok, but encouraged me to get a pass for the other rides. The boys rode, had a good time, and then we headed to guest services for a chaperone pass.

The counter was really busy so the staff called a manager down to assist me. Here is the gist of the conversation:

Me: "I'd like a chaperone pass for my kids."

Manager: "For all of them? Do you have other chaperones with you?"

Me: "Well, I don't need to actually ride the rides with them, we just need to be able to use the HC entrance so I can assist them getting on/off the rides."

Manager: "For a chaperone pass you need to ride the rides with them."

Me: I pointed to Angela. "She doesn't need anyone to ride the rides with her, but doing the stairs for some of the rides, as well as standing in the crowd is difficult for her. She can wait as long as she needs to but needs to access the ride from the HC entrance."

Manager: "No, she cannot ride the rides alone. I don't feel comfortable allowing her to ride alone. She'll need a chaperone."

Me: "Umm what you don't know is she rides the rides all the time and is perfectly capable of getting on/off the ride herself, but she DOES need to use the HC entrance."

Manager: You're going to let her ride THAT? (pointing to a ride zooming past that goes upside down) by HERSELF?"

Me: "She rides it all the time!" (And really, what good is a chaperone going to do for her on that ride when they're hanging upside down?)

At that point the manager decided to call another manager down to help with the matter.

Manager 2: "She cannot ride the rides alone. If she cannot do the stairs then she cannot ride the rides without a chaperone."

Me: That doesn't make any sense. If that's the case, why does every ride have a ramp and handicapped entrance?"

At that point I turned to look at Angela, and saw Angela from the manager's perspective. A girl, who appeared around 10 years old, standing against the wall with her mouth hanging open and her stimming on a tread on  her sleeve. This person was making a judgement call based on Angela's appearance in that moment in time when she was bored out of her gourd listening to adults argue as to weather or not she could ride the rides alone.

The would be the part where I normally loose my cool. I will admit I almost did. I was so very close, and my hands were shaking, but I kept myself together.

Me: "Are you telling me that you, standing behind a desk seeing my kid for the first time, are going to determine what she is/is not able to do independently?" (Because really, for all this woman knew, Angela could have driven herself to the mall!!!!!) "I, as her mother have far more of an understanding what my child is capable of doing than you who is just meeting her for the first time. Never mind that she has ridden ALL OF THESE rides plenty of times, and the only reason you know about it now is because I came asking for a pass for ALL OF THEM to be able to use the HC entrance because I was told by a ride operator that's what I have to do. I have no idea how she's gotten through on the HC entrances before without any problem."

"Manager 2: "What if she were on (named a ride I don't recall) and for some reason the ride stopped in the middle of the tunnel. Would she be able, in pitch darkness, to exit the ride without assistance and walk, in the pitch darkness, out of the tunnel? That's scary for adults!"

Let me explain a bit. Angela is developmentally very much about 8 or 9 years old. Any 8 or 9 year old who is tall enough to ride that ride CAN DO JUST THAT! RIDE THE DAMN RIDE ALONE! There is nobody telling their parents they better be able to walk through a pitch dark tunnel and risk falling down a ledge because they can't follow the directions. How many ADULTS would freak out in exactly the same situation.

Me: "Ummm I am not stupid enough to think that there are not emergency lights in that tunnel, and that you would have ANY PATRON exiting the tunnel on a narrow sidewalk next to a drop off where the tracks are, in the pitch darkness, as that would be a law suit waiting to happen."

Manager 2: "Well it has happened. In fact we tell all riders that if a child is afraid to get on a ride then they should not ride it at all because if they're afraid of that, an emergency situation would be far worse."

Me: "You know, I've been coming to this park for a long time. Never have I stood in line and heard, "All riders must be 42 inches to ride the ride, and must be able to exit the ride without assistance in pitch dark in the tunnel should it break down."

This is just the gist of the conversation that lasted nearly 25 minutes. In the end I asked for a refund of the ride points I'd already purchased while the woman continued to explain to me why it was bad for me to let Angela ride any of the rides independently. At some point I asked the manager to guess Angela's age for me. She thought 10 or 11. "That there shows how poor your judgement is in making this call. She is 16. You're looking at her for 3 minutes deciding she can't ride a ride when you haven't seen her doing anything other than lean on that wall."

So the boys rode their ride, and in front of the manager I told Angela, "I'm sorry. This lady says you can't ride the rides. We'll have to go home now." We got our refund and left.

Grrrr

So on the way home I called one of our caregivers to get her opinion. She often takes Angela to such venues and she agreed that Angela is perfectly capable or riding the rides independently.

My next stop was the NU website. Their rider safety information states:


BASIC RIde INfoRMAtIoN
In order to ride independently, a rider must have:
  • the ability to exhibit seated postural control
    under dynamic conditions of the ride
  • appropriate center of gravity, control of
    upper torso including neck and head, ability to hold on with one functioning arm, ability to brace self with one functioning leg
  • minimum two or three functioning extremities
  • ability to enter/exit ride within specified
    parameters without endangering self or others and mental capacity to be aware of the hazards, to self or others, of failure to ride in prescribed manner

    entry through the special access entrance should be limited to the guests requiring the access
    and up to three escorts. Additional members

    in your party should enter the ride through the standard entrance and join the guest and escorts at the loading area. Special access entrances are intended to accommodate guests needing special assistance and not to bypass others waiting in line.



According to the parameters determined by the powers that be at Nickelodeon Universe, Angela should be able to ride independently, and she should be able to access the the special access entrance that is available on every ride. 

So what would you do next?



Sunday, August 19, 2012

Another Blog

If you're new here, you may not know I have several blogs. (Not all are public) If you haven't visited this one yet, you might want to stop over and take a look.

Friday, August 17, 2012

How long will YOU ignore them?

“We learned that orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they’re not real before you hold them in your arms. But once you do, everything changes.” –David Platt

Wednesday, August 15, 2012

The Dentist

Last week all three kids visited the dentist. Oh Joy.

Thankfully none of the kids have the dental phobia I have, instead developing only positive attitudes about sitting in that chair.

Axel, trying to talk around the hygienist's fingers.

Asher LOVES people to put stuff in his mouth! (no, really!) He was thrilled to have all this stuff going on. He loved this visit.

Angela just loves attention, period. She was in a different room than the boys, which means neither Dean nor I were with her. Just the way she likes it. There's a reason we call her Miss Independent! 

Next week Asher will have his four front teeth pulled. His bottom front permanent teeth are already all the way in but the roots of his baby teeth are completely intact. His upper front baby teeth also have intact roots and the adult teeth are just starting to come through. This is a very common problem among kids with DS. In fact I don't think Angela had 8 teeth pulled at the same age for the same reason. 

Oh, something that blows air; his second favorite thing!

Axel's teeth are very healthy. (all the bad ones were pulled when we brought him home 20 months ago.) He even has two new teeth coming in to fill in some of those gaps! 

Angela's teeth could stand a better cleaning. She didn't have any cavities but she did have a fair amount of tartar. We use an Oral B electric toothbrush, so all she has to do is get to the right spot. Apparently that isn't good enough. No more brushing on her own for awhile!

This is why

Mini serbian reunion in D.C.! Axel, Asher and Sofija,
all adopted from Serbia.


I received an email today that took me off guard. "Why did you stop advocating for orphans? You adopted two kids and yet you won't advocate for rest of the kids."

Ummmm hmmmmm

Really?

I advocate for orphans ALL.THE.TIME!!!!! Where have you been? Google "Serbian Adoption" and my blog is the second hit only behind the Department of State's website.

Ukraine orphans have plenty of people advocating for them. Russian orphans have plenty of people advocating for them.

Who is advocating for Serbian orphans on an almost daily basis?????

Who is helping Serbian family fund raise for their travel?

Why did everyone stop advocating for these kids and families just because Reece's Rainbow stopped listing them on their website? You want to know some truly forgotten kids? The orphans of Serbia who nobody speaks for.

Oh I get it. It's because pictures of the Serbian kids can't be put up. What? You can only have a heart for a child who's face you can see in a picture?

I have chosen to advocate for Serbian orphans for a couple reasons:

1) My boys are both from Serbia.

2) The Serbian ministry has worked diligently for nearly two years to make sure theirs is a "clean" system. That there is no corruption. There are no bribes being paid. There are no outlandish prices being charged for expedited passports (I  have heard as much as $1500 USD in Ukraine! Serbia? $30!!!!!)

3) You work directly with the Serbian ministry. This allows you to ask questions not only about the process but about the child you intend to adopt.

4) You KNOW the child you've chosen is legally available for adoption. There are no surprises when you get there, something that seems to happen a lot in Ukraine.

5) You know before you go if the child has siblings.

The list goes on. Serbian orphans need families too. I set up a separate blog to outline the process and profile families who are currently in process. Out of 60-some kids, take a look at just a handful of Serbian kids who have found families in the last couple of years.

If you have a child from Serbia and you'd like to share your story on the Serbian adoption blog, please leave me a comment with a link and I'll post it.

9 Months Home

Most people do a "6 months home" post, but...well...we all know I'm a slacker, right?

Today Asher had a 6-month post-adoption visit with the International Adoption Clinic at the University of Minnesota. Asher and Axel were the first kids with DS to go through that clinic so they've really appreciated being able to follow them. Also, both boys will be appearing in Dr. Eckerlie's upcoming book that deals with issues related to orphan care post adoption.

So, on to the visit!

Asher has grown 2 1/2 inches (thats .28 inches per month) and10 lbs since his adoption 9 months ago. He is now the same size Axel was when he was adopted just 20 months ago at age 10! I really do not remember Axel being this small! In fact today Asher is wearing a pair of pants Axel wore to the hospital when he had his surgery a year ago in May. Don't get too excited though. Asher is still incredibly small. He doesn't look like a 2 year old anymore though. Now he might almost look 3 1/2 - 4!

Back in January when he was first seen, Asher's iodine was very low, which can cause problems with thyroid function. The fix for that is iodized salt, fish, etc. Today Asher's TSH came back really high, which is indicative of hypothryroid, something that is a common problem among people in the Down syndrome community.

His other blood level that came back today was Vitamin D. Back in January his Vit. D level was at 15. Normal is between 30-100. Asher's level of 15 is almost nonexistent. Well, today after months of treatment and playing outside in the sunshine, his level is DOWN to 13.

We're now being referred to pediatric endocrinology to address both issues.

Dr. Eckerlie was very pleased with the changes she sees in Asher so far. His gait is much improved as are his oral motor skills. She was also excited to see Axel with us, since she hasn't seen him since he came home in December 2010. Axel has grown more than a foot since then and gained 20 lbs. He doesn't even look like the same kid.

So, who out there in the blogosphere has experience with chronic vitamin D deficiency?

When God Intervenes: Spinal Fusion Warnings

photo www.duejustice.com Kelley Law Group, P.C.

I need to take you back to April of 2011. I, along with an entire group of people from around the country, was to be leaving on a trip to Serbia. I needed to meet up with the group in D.C. so we could fly together to Serbia. My friend Kaci had a terrible time finding a flight for me. Finally she found ONE seat on ONE flight that would get me to D.C. in time to catch the group's flight to Europe.

One seat. On one flight.

I wrote this post about that flight. Here's part of what I wrote:

The day was full of "You've got to be kidding me God!" moments. Like my flight from Minneapolis to DC, and the person I sat next to. You see, for Axel's upcoming surgery, his surgeon planned on using a synthetic product called BMP in Axel's neck instead of taking a bone graft from his hip like they do with the younger kids. But BMP  has been in the news recently, and after doing what research I could about it, I'd asked his surgeon so specific questions, which he answered, but I was still feeling uneasy about it. 
Until yesterday. (was it yesterday? I don't know what day I'm on. That flight was on Friday LOL)  Anyway, the man I sat next to was really nice. He and I spent the entire 2 hr flight talking about our families. He has two boys, and of course I used to have a houseful of them at home. I  had shared about Axel, and the upcoming surgery, and about our dilemma over the product that was going to be used in Axel's neck. All during this conversation, the man didn't share WHY he'd been in Minneapolis, just that it has been a business related trip. Finally, about 20 minutes before we landed, I asked, "So what exactly do you do for business that brought you to Mnpls?"
He's an attorney for Medtronic, the company that produces the product going in Axel's neck. He gave me a lot of information (at least what he was able to share due to legal issues ) about the stuff that's been happening with the FDA investigations surrounding BMP. "Don't let them put that product in your child's body." he said. Although the FDA hasn't pulled it from the market for cervical spine repairs, he said it won't be long before it is. Now he's not a malpractice attorney, he is defending the company who PRODUCES the product.
I ended up emailing Axel's surgeon somewhere on the trip and told him abou the conversation, and that based on that plus what I'd read a month or so ago, NO, we do not want that product put inside our child. I did get an email back from him saying he's comfortable with our decision since it is an informed one. This means Axel's surgery will have a different component to the healing process (he'll have to heal from hip surgery at the same time as the neck stuff) but that's how the little kids are done so I'm confident all will be well.
 I have heard BMP in the news a time or two since then, but tonight I saw an ad for a class-action suit against Medtronic, so to google I went. Wow! It didn't take much effort to turn up article after article about the lawsuits involving the use of BMP. Most of the sites are ad sites put up by attorneys, so I went looking for real information.

The June 2011 issue of the North American Spine Society published this article. (remember my conversation with the attorney took place in April 2011) and The Spine Journal published this article calling for an end to "Years of Living Dangerously".

BMP was designed for lumbar (lower back) fusions, however Medtronic was encouraging the use of off-market use - that is use that is not FDA approved - including using the product for cervical (neck) spinal fusions, which is where Axel's surgeon planned on using it.

In April 2012, Medtronic settled a lawsuit over misleading statements regarding Infuse to the tune of $85 million dollars.



Tuesday, August 14, 2012

12

Yesterday was a very special day here in our house. This young man turned 12 years old.

When he woke up in the morning the first thing he said was "Party!" I told him yes, today is your party! He was so excited! Then I said, "Axel,  how old are you?"

 He signed 11. 

"Nope! Today 11 is finished. Now you're 12!" 

Clapping and cheering ensued.

Later in the day the REAL party began. Angela was just as excited for Axel's birthday as he was. LOL A couple times I had to remind her that it was AXEL'S birthday and that he gets to do the stuff without her help. She was very good about calming herself down and taking a step back. 

There was the birthday song...

and there were the presents...

and of course cake to be enjoyed!



But his most favorite gift he actually received the day before. We've been discussing this for awhile, but we had this hazard in the back yard:

Yeah, looks beautiful, doesn't it? Well that picture was taken 7 years ago and that 20ft x 40ft pond didn't look so nice anymore. It was time to fill it in. Filling it in allowed us to get this for Axel.

Yes, I know EXACTLY what you're thinking. That we're insane. It's possible you're right. First, this is just a battery operated toy, not a gas powered machine. It doesn't go very fast, but it's plenty fast for Axel

Believe it or not, he was much better at this point. The first time he rode I decided I was better off not watching and just letting Dad call me if we needed a run to the ER or something. Sometimes its just better for the mom to NOT WATCH!  Oh, and check out where the pond used to be!

We've had a couple of these:


(he wasn't moving in these pictures, just stuck on top of the rock.) and of course his head is so tiny we have a hard time finding him a bike helmet that fits. Good thing he doesn't ride a bike. We're on the hunt for a smaller helmet.

He gets better each time he rides it; going longer and longer in between hitting objects. YAY! Still, I predict an injury or two before summer is done.

It was sure fun to celebrate Axel's second birthday with our family. It can't go without saying that while  we celebrated, while we watched the joy on his face, there are people on the other side of the world who are missing this part of his life. I think about them every day.

IS vs. HAS


I have three kids in the house. They are not Down syndrome.

One is a 16 year old girl Angela. When I describe who she IS, I describe a young lady who IS full of spunk. She IS the life of the party. She IS an adrenaline junkie. She HAS brown hair. She HAS brown eyes, and she HAS Down syndrome. She IS NOT Down syndrome. She HAS it just like she HAS glasses on her face.

Another is Axel who turned 12 yesterday. He IS compassionate. He IS caring. He IS a genuine "old soul". He HAS big feet. He HAS brushfield spots hiding in his brown eyes, and he HAS Down syndrome.

The last is Asher. At 7 1/2 years old he HAS the world in front of him. He meets it head on every day. He IS learning to talk. He IS learning how to eat food. He IS learning that his dad and I love him no matter what. He HAS a home now. He HAS family. He HAS down syndrome, and it is the least of his worries.

My kids aren't Downs kids. They are kids, and they have Down syndrome. 

Awesomeness

You may not be a fan of flash mobs, but if you have a loved one who is differently abled, you'll like this one! (ummm grab a tissue.)

Sunday, August 12, 2012

NDSC: Friday

Ok, we've been home for three weeks and I'm still not caught up! I'm determined though. LOL

So Friday evening, the first day of the conference, there was much to do! But first, what to do with the boys? Well, a friend of mine, Kaci, who lives in the DC area has a teenage daughter Kira. God Bless Kira! With zero notice she dropped everything and gave up her weekend (and time saying goodbye to her boyfriend) to watch the boys for me a few times over the course of the weekend. I don't know what  I would have done without her.

But first, Angela was going to spend the evening at the Youth and Adult conference meeting all her new friends. She was SO EXCITED that I was leaving her. "Mom. Just GO." as she walked away with a backward wave over her shoulder. (I'll explain more about the Y & A conference in a separate post.) Can you find Angela at the table with her friends, ignoring me?


Then I raced to the lobby to meet Kaci and her kids as they arrived at the hotel. It suddenly turned into a Serbian reunion. See these three kids? ALL THREE adopted from Serbia. Sofija was adopted first, then Axel and Asher. While families who've adopted from Ukraine run into one another all the time, the kids from Serbia a rare in the U.S. (there were only 7 in 2011, and 12 in 2010.)

I quickly showed Kira to the hotel room, got them set up with electronics, then bolted to the sharing session I'd chosen to attend.  There were several sharing sessions from which to choose from. These are informal sessions meant to be more like group discussions than anything else. There were LOTS of topics! My friend Bethany Balsis asked me to come to her session on blogging to offer any input that might come to mind.


I can't say I had much to offer, but it was a lot of fun meeting people who I know from the blogosphere along with others who are considering starting a blog. So fun to finally put names to faces!

Because I didn't have anyone to watch the kids the entire evening, I didn't take them to the opening ceremonies. I figured it would just be too long to sit and there would be plenty of sitting over the course of the weekend. I really missed not being able to attend this. Still, check out this room, all set up for the ceremonies. That is A LOT of chairs! I don't know what the final numbers were for attendance. 


For the youth and adults, the highlight of Friday night is......(drumroll please!)....The DANCE! What would a DS conference be without dancing?  Dean made an observation once a few years ago. These particular dances are a lot like going to a wedding where everyone has already had a bit to drink. There are NO inhibitions!!! NONE! The DJ doesn't have work to get people dancing, all he has to do is start the music. The people in this community dance from the moment the first note is played and continue dancing their hearts out until the very last note ends. Even then you might have to drag some off the dance floor! Axel loved the dancing, Asher...well he wasn't a fan of the music and cheering people. When the dance first started he was ok, but after that he spent a lot of time with his hands over his ears. I had arranged for someone to be with us at the conference knowing Asher would not tolerate this event. After I recorded this he and I moved to a different area where he was only slightly happier. This video was taken right away when the music started. You cans see there is still a lot of space! It's the only time Asher was happy, but the other two??? Total blast!

Within about 20 minutes it was PACKED and I had a hard time keeping track of my big kids. LOL

Axel even got to dance with Diondra Dixon, sister to Jamie Foxx. 

It was a very fun day, one that none of my kids will soon forget! Next up? The workshops!