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!"

Sunday, October 31, 2010

21 Things about Angela

1. We did not know prenatally that Angela had DS. It was a surprise to the doctors, and mostly to us. But the week before she was born, I knew something was up, and so when I was told the news I wasn't surprised at all.

2. Angela was born at 4 lbs 4 oz. Since that day her nickname has been "Peanut". All of her brothers, her dad and I still call her that.

3. Angela loves stripes. That's all she wants to wear is stripes, and the wider the stripes the better. Rugby type shirts are her favorite.

4. Angela's favorite area to shop is the boy department of any store. See number 3 for the reason!

5. Angela's favorite show on TV is "The Middle" followed VERY closely by "Modern Family".

6. Angela is a better dog trainer than most adults. It has never occurred to her that a dog might not listen to her, and because she expects a response from them, and she has no reservations and is all business, they do respond! That is exactly how I wish dog owners in my classes would be with their own dogs. (this can also get her into trouble with a dog she doesn't know!)

7. Angela's most favorite person in the world is her "Big Guy Dean". If we go somewhere, she always introduces us as, "This is my mom (like she HAS to say that part) and This is my big guy Dean!" (and fawns all over him! ROFL)

8. Angela is a "dual diagnosis" kid. She has Down syndrome/Traumatic Brain Injury. Sometime right after she was born she suffered a stroke or two, which in Minnesota counts under the TBI category. (in other states only an external blow to the head counts as a TBI) Then in December 2009 she was also diagnosed with complex partial seizures, which are also considered under the TBI label.

9. Up until a year ago, Angela was an extremely aggressive child. I mean, extremely agressive! She could never be around small children or animals without direct 1:1 supervision. Because of that we couldn't even consider adopting. I always questioned if it was truly a behavioral disorder or some type of seizure because the behavior was unprovoked. Finally one day her neurologist saw an episode in his office and said, "Is THAT what you've been seeing? Because THAT is a seizure!" She was started on a specific kind of seizure drug that day, and since then she is a completely different kid! She has had 3 or 4 breakthrough seizures since then, but they are short. Because they don't look like a seizure, we're like, "Where the heck did that mood come from? Oh yeah! Bet that was a seizure!" We get her medication levels checked and sure enough, she needs a dosage adjustment.

10. A year ago Angela told me, "Mom, I have bad news. I'm moving far away and you're not coming." I think it's safe to say she will NOT be living with me forever!

11. Angela has had 22 major surgeries, and at least that many minor procedures. Often with several things done at once. (like ear tubes, tear duct cleaning and tooth extractions all at once.) We call these "tune ups"! LOL Most of her major surgeries have been GI related.

12. When I shattered my wrist a couple years ago Angela was in 7th Heaven! She got to play nurse FOR REAL! As soon as my doctor made me stop wearing my brace, Angela claimed if for herself and wore it for several weeks.

13. When Angela started preschool at 3 years old, she was only able to say a few words, but she signed more than 600 signs. She had more, but that's where we stopped counting. I was a Sign Language Interpreter for almost 25 years, so the signs were all in my head and I didn't have to look anything up. I was able to sign naturally with her.

14. Angela has Cricopharyngeal Achalasia. It is very rare, and is unrelated to Down syndrome. This is a progressive disease, and extremely rare in children. In December 2009 she had surgery in Boston to improve her ability to swallow but it didn't work. We were supposed to go back to discuss much more invasive thoracic surgery. We haven't gone back. Angela has horrible problems with wound healing and I just can't stand the thought of putting her through this horrible surgery. It will be FAR WORSE than any surgery she's ever been through. Right now she's stable, so we're just waiting. I'm trusting God to tell me when it's time to start looking at this again.

15. Two years ago we switched from windows operating systems to Macs at home. Angela taught Dean and I how to work our computers. LOL She's still showing me how to get to some things.

16. Angela is willing to try every sport there is to try. Really, she's willing to try anything, since she has no fear.

17. Angela has 4 older brothers. Rob 24, Noah 23, Tyler will be 22 soon, and Bryon 21. She also has a step brother Aaron 21. Is it any wonder she's not a "girlie girl"? LOL

18. Angela has the best sense of humor ever. Seriously, this kid can work a crowd! Dean and I are pretty immune to it but some people are pretty entertained by her. (I don't think her brothers are. LOL)

19. Angela hates breakfast food. When she gets up in the morning she asks for lunch because she hates all typical breakfast foods and would rather have a sandwich or lunch type foods. I have to get pretty creative to get her to eat before school. (She is my polar opposite. I prefer breakfast food over anything else. LOL)

20. Angela loves to watch Dean league bowl every Thursday night. The waitress there knows exactly what to bring her for a drink and brings it for her before Angela even makes it to the table. Angela knows every person on the league, I think. (and there are a lot!) She cheers for every bowler and gives them high-five's for all their strikes and spares.

21. Angela loves unconditionally like the rest of us should. She forgives quickly like the rest of us should. She's never afraid to try new things, like the rest of us should do. Angela is the most amazing person I know.

Last post of the month

Today is the last day of 31 for 21. I think this is the 4th year I've participated. 3rd for sure. Whatever it is, it's the first year I have failed miserably, ON THIS BLOG! I'm going to play the "overwhelmed adoptive mom" card, and say if you combine the posts on my two blogs I've actually made 60 blog posts including this one, and that totally counts, right? Especially since Axel, the child we're adopting, is a child with Down syndrome. HA! Totally going with that one. I should have thought of that in the beginning. DUH!

Anyway, in the wee hours of this morning, I was writing a post about Angela and I couldn't decide which blog to put it on! It's related to the adoption, and splitting my attention between our soon-to-be-home child and Angela, and how to handle that. So, as you can see, it was a toss up where to post it. If you don't already read my adoption blog, I'd love to hear your thoughts.

And so ends another year of 31 for 21. Wow, October sure went fast! Next year I should have double the material! ;-)

Thursday, October 28, 2010

Failing as a Parent

I have failed my kid miserably, and she is only 14. Can I still fix it?

If you have HBO, have you seen the documentary Monica and David? If not, you HAVE to check it out! It's about a couple with Down syndrome who have gotten married, and are learning about living and loving together, and their family learning to let them do just that. It was fascinating for me to watch. And, I have to admit, some parts were hard for me to watch to. Like their wedding night when the hotel room door closed behind them. I told Dean, "That is where I would want to put my thumb in my mouth, my fingers in my ears, curl up in a fetal position and hum in the corner." Really, when that day comes for Angela, I'm gonna have a hard time with it.

Anyway, this movie was a slap in the face of reality for me. Monica is a bit obsessive about some things, as Angela can also be sometimes. Ok, a lot of people with DS have some...ummm...obsessive tendencies. Several times they showed Monica making her bed. As she made her bed, all I could think of was the mess Angela's bed is left in each morning and the fact that Angela is perfectly capable of making her bed, I just don't seem to have the patience for teaching her how to do it. It's not that I haven't tried, it's just that our sessions have not turned out very well. One of us always ends up irritated with the other. Oh my, Angela and I are soooo much alike!

In other segments of the movie, Monica and David are doing chores together, like taking out the trash. (It was pretty cute to see them bickering over some small detail.) But the scene reminded me of my friend Tamara's recent blog post about her son Shawen doing chores. And that is when I realized that I have failed Angela miserably.

You see, although Angela has four older brothers, she has been very much an only child since they moved out when she was 7. (well, except for the revolving door stuff with Tyler.) When she was little, and we pretty much did everything for her, and since she was the only one here, it's been pretty easy to just keep the same patterns in place.

Some things have changed. Like, she showers independently and stuff like that. But she can't make a bed. She doesn't take out the garbage, or do any kind of household tasks unless asked to, which is rarely. Occasionally she lets the dogs in or out, and we're met with a huge attitude when we do tell her to do it.

I have news for Angela.

The sh** is about to hit the fan.

There is a new brother coming, and I'm pretty sure he is NOT going to be a happy camper when he comes. He is loosing a family, and a foster sister who he is bonded to. I have no idea how independent he is, but I'm going to assume he's not at all and hope I'm pleasantly surprised.

You know how girls, when the hit the age of about 7 or so, start to mother everything? Suddenly they're very into mothering their nieces and nephews, etc. Well, Angela just started hitting that developmental stage about 6 months ago. I think that's interesting since I've been saying for awhile that cognitively she's very much 7-ish. All of a sudden here came this very 7-ish behavior! Prior to that she was really pretty rough with little ones. We're hoping we can use that "mothering" thing to our advantage when Axel comes home. Hey, it's my blog, and I can be delusional if I want.

Anyway, we've been talking to Angela about how she's going to be the "big sister" and how big sisters do things themselves because when moms have new babies, moms have to take care of the new baby. Bringing Axel home is going to be a little bit like bringing home a new baby because he's going to need lots of attention. We talk about how when she was born, she had to go to lots of doctor appointments, and her brothers had to come along. Most of Axels visits will be while she's at school but she'll be able to come along to some of them. (she was thrilled about this, because she LOVES to come to the doctor when it's my turn and not hers! LOL) Axel will need someone to tuck him in at night, and read him a story, and teach him how to be a big kid. She can help by showing him how big kids act, and do thier CHORES like a big kid. And do their HOMEWORK like a big kid, etc.

We struggle to find ways to explain all of this to Angela in ways that will be fun and exciting for her, and not make her resentful of the intruder who is about to descend upon her empire.

Monday, October 25, 2010

Oh, giddy!

(edited to add: Well this was supposed to be on my adoption blog. Oops. I'm gonna leave it here anyway, for those who wonder just what is involved in the international adoption process. It's definitely a labor of love!) It seems it doesn't take much to make my knees shake these days. Todays episode was brought to me courtesy of the Department of Homeland Security in the form of our fingerprint appointment letter.

Our appointment isn't scheduled until November 17th, but this is international adoption we're talking about, and it comes with it's own set of rules.

You see, this appointment was scheduled by the Immigration Dept. adoptions division in Missouri, and they don't really know the calendar for the St. Paul office. So we'll take our tickets to the office ourselves and ask for a different appointment. Sometimes they will get you in later that same day, or perhaps the next, but there is no need to wait until the date set by the main office, which is weeks away.

Once the biometric fingerprints are done, they are sent back to the Immigration Dept's main office, who will have them within 24-48 hours. Then we wait for their approval. That is our golden ticket! A copy of that golden ticket is sent to the US Embassy in Axel's country, telling them we have permission to bring him back to the US, and allows them to issue his passport!

Sunday, October 24, 2010

True Successes

Dave Hingsburger, over at Rolling Around in My Head, has an interesting post today. It's something that has bothered me for a long time whenever I have seen stories of people who have Down syndrome who are in the news because they've done something great. Or have they? Sometimes they haven't. (Go read Dave's post.)

His post reminded me of something that happened with Angela when she was in 1st grade.

It was the week of Thanksgiving, and she had come home with a paper plate turkey in her backpack. You remember those, right? Paper feathers glued on one side, the head on the other, googlie eyes, etc. Angela's turkey was beautiful. In fact, it was perfect. TOO PERFECT! Considering one of her biggest struggles was the effect a stroke had on her fine motor skills, and she could barely manage a scissors, much less cut along a line well enough to cut PERFECT feathers, I found it odd that this beautiful turkey had found it's way home. Even the eyes of this turkey were perfectly aligned. I asked Angela about her turkey, but she was indifferent.

I had subbed in Angela's special education classroom before and had seen what went on, and it had bothered me. The classroom aids did far more than "help", and with the kids who needed more assistance the "hand over hand" work was...well, they DID the craft work and the kids got to watch. Lucky them!

So the next day I attached a note to the perfect turkey and sent it back to school.

"Mr. Smith, it appears that the example turkey was put into Angela's backpack by mistake. Could you send home HER turkey? Her turkey is the one that is butchered and mangled, with the eyes lopsided and extra blobs of glue all over the place. I was really hoping to display HER turkey on our refrigerator for the holidays when her grandparents are here."

A couple days later, a mangled and sorry looking turkey came home, and Angela proudly showed it off.

Just a couple weeks later I was walking through the hallway of her school. There were now snowmen hanging on the wall outside her classroom. Although they were PERFECT, they bore the names of the students in Angela's special ed. class. All except one. There was one sorry looking snowman with both arms, hat and scarf glued to one side of his body (where one arm should have gone), one cyclops-like eye in the middle of his face, and a triangle (the nose?) on the lower body part. And there was her name too, written by herself. I know, because you couldn't tell what it said.

I was so proud of that snowman!

Saturday, October 23, 2010

IPAD


Hey! Did you know a lot of schools are now using the Apple Ipad as communication devices for kids with DS, Autism, or other communication disorders? I've had several parents tell me they  have been using them at  home as well and are really liking the the versatility and variety of things you can do with this thing! We're really considering getting one for Angela for Christmas because of the writing programs, along with several other things. We're also considering getting one for our new son Axel who we're bringing home in December, and is non-verbal.

Since they're so handy for kids with disabilities, AND, we're coming into the final stretch before we bring Axel home, we're doing an an IPAD give away! Hop on over to our adoption blog to see how you can enter to win an Apple Ipad!

Thursday, October 21, 2010

Holy buckets!

Did you know our family is growing? Yup! We're going to multiply our 21st chromosomes even more! Go have a look at our adoption blog. His name is Axel, and he's adorable!

Tuesday, October 19, 2010

Timing Life

Angela does much better dealing with life when it is her decision to move along with tasks than when it is an adult telling her to get going. I think a lot of kids are that way. Sometimes when she's told it's time to be done with something and move on to the next, she gets stuck. We call this "stalling out". She'll end up sitting there talking to invisible people for up to 1/2 hr sometimes, just to avoid whatever it is you told her to do. Trying to physically move her is asking to have the issue escalate into a mess. This used to be a much bigger problem, one that we haven't seen for awhile, but once in awhile it sneaks up on us and catches us by surprise. Interestingly, if we pay attention the calendar there is a distinctive pattern! >insert PMS wink here<

So today, after the shower scene gone wrong, I went on a quest for a shower timer. I'm done dealing with the shower. I found this cool one on Amazon. This is just the kind of visual indicator Angela needs to see her time is running out!
 I also found this very cool timer, called the On Task Timer designed by a mom with triplets who needed a way to keep everyone moving in the morning. It has 52 different task stickers, and you can put your child's entire morning on a disk so they are kind of moved along through their morning routine without you (me!) constantly hounding them to "Hurry up!" and "You better get moving, you're going to miss the bus!". With this they can see how much time is left. For Angela this might be helpful since she sometimes gets lost in her room when the invisible parties start and she doesn't want to miss out, which makes her late getting upstairs for breakfast. It doesn't happen very often anymore, but when it does, it can throw her whole day off. 


For the kid who likes lights and sounds, there is the Time Tracker Pro

There were some other really fun ones on Amazon as well, and I'm sure if a person spent some time on Adaptivemall or any of the other accessibility websites there are a lot more to be found as well. 

Angela is really very independent. I bet I could set her whole life up to be run by timers and the only time I'd see her is when she'd come upstairs for meals. Unless, of course,  I put "Come give mom a hug!" on her schedule, then she'd oblige me for a minute or two. Although I think she would be thrilled to be "on her own", I would miss her far too much! Besides, she's only 14!!!

It's Not All Roses

Raising a teenager who has Down syndrome is  not all sunshine and roses. Angela, like most teenage girls, is a moody little thing! This morning she is refusing to take a shower, so we're having a stand-off.

There is no such thing as a quick shower for Angela. Once the water turns on, it becomes a stage with an amazing sound system! You know that great echo that showers give? Angela is fully aware of the improved sound quality and takes full advantage of it, singing her heart out (at top volume) until the water runs cold. This is why I woke her up at 6:30, so there would be plenty of time for the hot water to run out. And, last night she promised to take a shower this morning with "no problems" which USUALLY means there will be NO PROBLEMS!

Angela does NOT like to be late for school, and in particular does not like to miss Home Base, which is at 7:50. It is now 7:13. (Remember, she's been up since 6:30) If she is going to make it to Home Base then the little cookie better get her rear end into the shower!

Today is not one of those days super days, and I'm not caving on the shower business. She's just going to be late for school, and that will be where the consequence happens. She's going to be upset about it. She won't like having to tell the office why she's late, nor will she like that she missed Home Base and the fun things they do in there.

It's a good thing I don't have to be anywhere this morning. And that I'm not also getting someone else out the door at the same time. (speaking of which, if you're not following my adoption blog, you might want to be doing that this week!)

Saturday, October 16, 2010

Act I

A lot of people will say their children (weather they be young, teens, or adults) with Down syndrome are natural actors. I am one of those people! Angela was born with a natural ability to imitate people, a quality I have seen in many people with Down syndrome who I have worked with over the years.

About 3 years ago, while my dogs and I were participating in a production of Seussical the Musical, Angela was invited to join SOS Players in Hudson, Wisconsin. What a gift that program was to her! Angela was the only participant among 40 who was disabled. She went on her own, without assistance, and did what everyone else was doing. She met the same expectations as all the other participants. The only thing that was done differently was the monologues. All the end of the year, for the spring showcase, all the participants performed skits and monologues. Angela had a little trouble understanding the concept on a monologue, so we had her do a dialogue with. All of the topics covered social issues, and Angela's was no different. Her's covered a topic that was meaningful to her.

Here is the first dialogue she did the first year she participated in SOS Players. She was 11 years old. (in the beginning section you can pick her out, she's wearing a black Tshirt.) She was VERY nervous, and her voice was a bit shaky in the beginning!


This is her second year. She was 12. (sorry for the person sitting next to me who coughed the entire time!!!)


My purpose of this post is this. All of your children, no matter how many chromosomes they have, will have their own interests. Find what their interests are, and build on them. Maybe it is soccer, or basketball, fencing or pottery. For Angela, she had a strong desire to act. She absolutely thrives on being center stage. She is currently rehearsing for the school play, and will have opening night in a couple of weeks. This is the first time this director has had a student "like Angela" (her words, not mine) in the school play, and I think she's been surprised that Angela is able to keep up. But I'm not. There's no reason to be surprised. Just like the other students who enjoy acting, if it is something they enjoy, they will be able to do it and should be given the opportunity to try.

Tuesday, October 12, 2010

A message for new parents


14 years ago on June 6, at 11:06 a.m., the operating room was silent, except for the sound of a helicopter landing on the hospital roof. While the doctor's hands closed my open belly, hushed whispers from the doctors and nurses could be heard from the corner of the room. Finally, from out of my view, the pediatrician said, "She's starting to get pink now. Lets get her ready to fly."

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That first year was a scary, yet amazing year. In those first days we were told you were different from us, that if you survived there were things you would never be able to do. But we held you, we loved you, and we promised you the world, if only you'd hang on a little longer. You were beautiful! Your big dark eyes studied everything, and though they told us you'd likely never be able to communicate, you produced your first sign, "eat", followed a few days later by, "more", I should have known right then what was ahead! LOL You got your first hearing aids and learned the importance of sound. Before we knew it, your first birthday was was here, and for the first time I found myself thinking of the future. There were things I wanted to know! I wanted to know what you would be like at 3, at 6, 10....and at 13.

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Your second year came with a few surprise surgeries, and the many hospitalizations to go with them. The feeding tube that went in, then came out, then went in again. They told us you might never walk. Too bad they didn't get to see all of us sitting in a circle in the living room cheering as you walked back and forth to each of us. They didn't get to see the pride in your eyes, or in ours. They didn't get to see my tears of joy.

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Your third year brought a day I never thought I'd see. You started preschool! I cried that first time I put your tiny 20 pound body onto that HUGE bus! You were a signing maniac, and could say anything you wanted to say with signs. You started to read, and to run. You even started to eat and drink by mouth again. You were beautiful, with hair so long you could sit on it, and eyes that twinkled with mischief. You amazed everyone; teachers, doctors, but mostly us.

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Your fourth year. You learned to feed the chickens and collect their eggs. You learned to drive your Barbie jeep all over the farm, and where the mother cats hid their new kittens. You taught your teachers to think outside the box that is Down syndrome, and that they didn't have to do things the same way they have for the past 10 years. You were different! Your diagnosis didn't mean the special ed. setting was the right one, so you went on to teach your regular ed. preschool teacher that "different" can be amazing!

Your fifth year brought Kindergarten and new friends. And even though it was bigger than you, you learned to carry your lunch tray. You stopped signing for the most part, and talked all the time! If only we could understand you. With a lot of changes in our family that year, you still continued to make great progress, more than anyone had ever hoped for.


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Your 6th year brought 1st grade, reading, writing and math. You were the tiniest first grader ever! You loved going to school with your friends! Your speech took off and we were understanding you more and more. You were a shining star.


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Your 7th year brought two moves, and it brought Dean. It also brought a long winter in the hospital, and missing all of 2nd grade. You loved your dogs, and your bedroom, or going anywhere with Dean. But mostly you loved music!


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Your 8th and 9th year were unremarkable as far as medical issues were concerned. You continued to progress and flourish in school, which you loved!


Angelasummerflower



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PhotobucketYour 10th year brought us a scare we thought we'd never have to face, and set your motor skills back a bit. We were told you were a walking timb bomb, at risk of a massive stroke. That there would be no warning, that by the time we noticed anything it would be too late. Then we were told that was wrong, and then "Well, we just don't know." We were so confused! Whatever had happened caused you to loose the ability to run, and your walk became labored and you tired easily. Nobody seemed to know what to expect. But through it all were your shining eyes and smile! Still happy with every new person.



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PhotobucketYour 11th year brought your Make A Wish trip, which brought some of us (You, me, Dean, and Tyler) to Give Kids the World in Florida. A magical time for all of us, and a time for us to celebrate the fact you were still with us. We made so many memories together on that trip! Even with all that, during that year you learned to swim, and amazed me with your tenacity.



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PhotobucketYour 12th year brought horseback riding, pierced ears, braces and gold medals in Swimming. You started performing on stage, and we were so proud of you! Your comfort on the stage, in front of a crowd proved to those who didn't know you that even those who are "different" can be performers.



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And here we are. You're 14 years old now. I can still smell the baby you. I can still feel your fuzzy hair. I can still feel the touch of your chubby little hands. Today I looked at the creases on your palms, and remembered my fascination with them when you were a baby. Those creases that told us the truth of your diagnosis. But I also remember how you proved everyone wrong. That Down syndrome wasn't the curse they wanted us to believe. Down syndrome was our blessing. I remember wanting to know what you would be like at 3, 6, 10...and 14. If only all new parents who've been told their baby has Down syndrome could see ahead. If only they could see everything would be o.k. That there is life after diagnosis. I wish that all parents could have a child just like you Angela...they would be so blessed.









I am a bad blogger

I'm a bad blogger, but I'm claiming a good excuse! It's because we're working really hard on adoption related stuff, and I can only be pulled so many directions at once! We are working on sharing some exciting news on our adoption blog. Hopefully Monday or Tuesday will be the Spill the Beans day!

In other news, Angela is has been busy with play rehearsals, and bowling practice. She has the Special Olympics area tournament this weekend, then next weekend is opening night for the school play. She has worked very hard at BOTH things, and we couldn't be  more proud of her!

Me? I've been busy wrapping up the homestudy. It's now been sent off to immigration for final approval, and...well..I have to zip my mouth from there.

I've also been busy raising these puppies, who are now 6 1/2 weeks old! Can you believe it? On Thursday they'll all go in to get spayed and neutered, (for those who get these confused, females get spayed, males get neutered.) then next week they go home to their new families.

And just in case you're wondering just how cute these puppies are, have a look!


Now, I am off to go clean up more puppy poop! Yay me!

Saturday, October 09, 2010

Myth or fact? On Lying

I love 31 for 21, because you get to read some really fun stuff about great people, all who are walking around sporting an extra chromosome which makes them part of the same club we're in.

Today Becca over at The Bates Motel, brings up one of the misconceptions about people who have DS: That they have an inability to lie.  My good friend Tamara gives her perspective as a mom to a 13 year old boy and his attempts to get away with doing things he's not supposed to do.

Not one to be left out, I have a couple stories to share. Shocking, I know!

When Angela started telling tall tales, they revolved around TV shows, and her wanting to be part of them. She would often say things like, "I have 5 brothers, Robbie, Noah, Tyler, Bryon and Zack." Umm...sorry but "Zack" is a character in a Disney channel show!

A couple years ago they started to get a little more involved. We'd be at a grocery store check out and the cashier would attempt to make polite small-talk with Angela, who would find a way to announce, "I have a soccer tournament today!" No...no she didn't! She wanted to play soccer, and since the store clerk didn't know Angela didn't actually play for a team, she was free to say whatever she wanted. Except she forgot her mother was standing right there!

Angela knows the months of the year, and the days of the week. She knows the dates of every birthday of ever person in her family (including all of our dogs!) and she loves to go over them with me several times per week. Angela's birthday happens to be on June 6th, so imagine my surprise when we showed up to watch Dean bowl one Thursday night to find one of his league friends had a birthday gift for Angela. In December! Apparently the week prior Angela had told him, "Next week is my birthday! December 6th!"

My favorite incident happened last spring. It was a Friday morning and I was getting ready to drive Angela to school. As we were getting in the car she informed me, "I need money! For Bruegers bagels. Today we're walking there for lunch." I had vague memories of having signed a permission slip for this a couple weeks prior, so I didn't doubt her. I didn't have any cash so we swung into a gas station so I could access the ATM, then bought a pop so I could break the $20 I'd just gotten. As we pulled up in front of the school I handed Angela a $5 bill which she promptly stuck in her front lapel pocket of her jacket.

"Hang on a sec." I said, as I pulled out my phone. I quick called her teacher. "Are you walking to Brueggers Bagels today? Oh...you did that two weeks ago? So there's no reason for Angela to need money today then huh?"

Angela handed me the $5 bill with a smirk on her face and quickly got out of the car so she could get into school safely without a lecture.

Angela tells stories all the time, and it's pretty clear that she has a hard time understanding the line between fantasy and reality. But there are certain times, like about the money for the field trip, when she knows exactly what she's doing is wrong, and makes a choice to lie anyway. And yes, we do address the issue! Yay for us, another normal developmental milestone to address! HA!

i have a voice

Wednesday, October 06, 2010

More Alike Than Different

A lot of people ask me where I see Angela in 10 years. Oh, I have a VERY good idea. Watch this video, and you will too!

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You may remember about my post about this little guy a few months ago.  I met him when I was in Europe last April. He is like a brother to Ianna. They have been together all day, every day, for the past three years. Every picture that I get of Ianna, they are together, and every picture that my friend Tammy gets of Scott has Ianna in it. But things are urgent for him right now........




20

190

They're not very big numbers, are they?


What about 3800? Is that a big number? In the scheme of things, not really. I've seen much bigger. But that $3800 is that last amount of money that is preventing us from bringing our boy home. That's it! That is all that is standing between us and a plane to Eastern Europe!

So where does the number 20 come in? That is the $20 people spend on Starbucks each week, or on McDonalds, the magazine subscription your niece was selling last week...or any number of things in life that, when they think about it, probably is really money they'd rather spend elsewhere. For us, that $20 is a life.

And what of the 190? If 190 people felt that they could spare $20, one little boy in Eastern Europe, who has spent his entire life living in an orphanage, will be spending Christmas home with his family where he belongs! Talk to your family, talk to your kids. Ask them if they think your family can spare $20 so that one little boy might know the joy of a mother, a father, a brother and a sister.

You can help us bring our son home by clicking on his button.



How to Make A Mom Cry 101

How to make a mom cry, before 8:00 a.m. is quite easy, actually!

1) You have to be a boy.

2) Make sure to get dropped off at "the circle" in front of school about the same time as Angela.

3) While Angela is walking into the building, and while her mom is waiting to make sure she makes it into the building without dropping anything, holler from the opposite side of the circle (50 + feet away.) "Hi Angela!" and wave enthusiastically with a big grin on your face. Then add, "Hey, wait up!" as you hurry to catch up to her.

4) If Angela grins from ear to ear, covers her mouth, and turns to check if her mom noticed this exchange, there will be extra tears from said mom.

Tuesday, October 05, 2010

Defending the fatherless

Most of you know that my family is in the middle of adoption from Eastern Europe, but I have a lot of new readers in the past couple of months, so I'm going to take the opportunity Down syndrome Awareness month offers to talk about the plight of orphans who have Down syndrome living in Eastern Europe. Please allow me to repost:
++++++++++++++++++++++++++++++++++++++

There are many children in the orphanages who will never be adopted, either because nobody wants them, or because they have been deemed "unadoptable".

When I met "M" (pictured below in my previous post) and after spending some time with her, I made the comment, "She has so much potential! She will take off if only she is given the chance at a family." The staff looked at me as if I had just grown 3 heads right before their eyes.

You see, in their culture, "having potential" doesn't have the same meaning it does to me. To them, it means being able to have a college education, or at a minimum go to a regular school. To me it means the child has the DESIRE to live, and ABILITY to communicate, even in the smallest of ways, and I can see how quickly he or she attempts to interract with me. (sadly, there are some who have lost the will to live, and you can see it in their vacant eyes.) For M, it took less than 5 minutes to teach her three signs. "Me", "More", and "camera".

There comes a point when someone has to decide which children's names will be placed on the list that says they are free for adoption. "M", wasn't one of those children. When we asked why, we were told, "Who would want her? There are so few families, we save the spots for those who are more likely to find a family."

Later, a staff person asked me to explain to her what I meant when I said a child had potential, because clearly "smart" to me had a different meaning than it did to the people of their country. You have to understand, this person has a heart for these children. She will FOREVER be a friend to me. She is working against a society who doesn't understand WHY in the world we would want these children. Is it any wonder their biological parents don't want to take them home when they will only be stared at by strangers, and ridiculed by their friends?

I explained that there is a family for EVERY SINGLE CHILD THERE, no matter how severely delayed they are, even if they are nothing more than breathing lumps of skin and bones taking up space. To be honest, after years of institutional life, there are many children who would fit just this description. But somewhere, deep inside them, is a spirit, and a spirit doesn't need a whole, fully functioning physical body to live! So yes, there is a family for every child, but those families will never know their child is out there...waiting...unless they are made available for adoption and we can talk about them! Without exposure to the world of parents who are searching for THEIR child, these children will die a miserable death. Just last week, two children died in this facility...and they died alone.

I pray that we convinced her to get every child on that list that they can. While it seems an impossible goal to find a home for every child, God has no limits! HE knows where every child belongs, weather it be in his arms or in the arms of earthly parents.

Here is a child who is considered "unadoptable".


Do you see how big my hand is on his chest? Guess his age. No, you're not even close, guess again. He is 21 months old, and he is the size of the average American 4 month old. This lack of growth doesn't have anything to do with his heart condition, but rather his life in an institution with a lack of physical stimulation. Don't get me wrong, the caregivers are trying, but they are short staffed, and there are soooo many children.

He has Down syndrome, and a severe heart defect....and he is blind. He was afraid of me when I first touched him. A voice speaking sounds he doesn't understand, a hand he couldn't touch because he had socks over them to stop him from chewing on them. And yet, it only took a few minutes of stroking his face, and talking to him softly, telling how much God loves him, before I got this




Giggles that came all the way from his toes!!!! And with that giggle the tears came streaming down my cheeks, because the reality was just too much for me to comprehend. Holding him proved to be more than I could handle. You see, he snuggled into me, sucking the love out of my heart like a sponge as my tears spilled down my cheeks. I turned away from the rest of our group, afraid that my "weakness" would get us kicked out.  Putting him back in his seat was indescribable. I fastened him back in, then quietly stepped out into the hall to collect myself. 

This boy spends his days in a crib, either sitting in an infant seat on the floor (or sometimes it's sitting in the crib) or just laying in his bed, waiting for the next time a caregiver has a moment to come check on him. If he's lucky, they'll have time to hold him. He has a roommate who will be going home to his forever family soon. A little boy with no arms and legs, but is cognitively normal. His other roommate cries all the time, but her cries are not always answered. Even so, she'll go home to a family before too long. But this boy? No. Not him. He will spend his days isolated in the darkness of blindness, listening to the sounds of the world go by in the hallway, all the while waiting.........just waiting.......and eventually his waiting will end and he'll find himself in the arms of a father who loves him more than any of us ever could.

Talking the talk

How do you talk about Down syndrome? In this world of politically correct oversensitivity, it seems every time you turn around there are new rules for what's ok to say, and what's not! How do you keep it all straight?

When you're talking about people who have disabilities, it's pretty easy. It's called "People first" language.

HUH?

If you remember the person comes first, and not the disability, you're gonna be ok! When I talk about my child, she is just that...a child. Her disability, while it is a part of her, it does not define her. If I were to stand her in a group of her peers, you would not be able to pick her out. She is a person first, her disability is not the the first, or even the second or 3rd thing you see. (well, I guess this depends upon who you are, because I just don't see it anymore.)

Here are some common comments, and their "people first" counterparts.

"I have a Down syndrome child who is 14."
"I have a child with Down syndrome who is 14."

"My sister has a Downs baby! He is so cute!"
"My sister has a baby with Down syndrome! He is so cute!"


"I hear you're adopting a Down syndrome child. Where are you adopting from?"
"I hear you're adopting a child with Down syndrome. Where are you adopting from?"


"I teach special education and have lots of Down syndrome students in my classroom."
"I teach special education and have lots of students who have Down syndrome in my classroom."


"Disabled students should have the same rights in school as all other students!"
"Students who have disabilities should have the same rights in school as all other students!"


"Downs kids are so sweet and loving!"
"Kids who have Down syndrome have the same range of emotions as everyone else."

Monday, October 04, 2010

The Middle of the Night

Angela's alarm is set for 6:50 every morning. This allows her just enough time to get up, dressed, and the necessary tasks done before I drive her to school each morning. Most nights she gets her clothes set out at night before she goes to bed, but if I'm behind on laundry which never happens then I will set clothes out for her before she gets up in the morning.

Now, Angela has a habit of waking up in the middle of the night, and chatting away for a couple hours at a time, usually at the top of her lungs. (or so it seems in the quiet of the night!) When this happens I will make the trip to her basement bedroom and whisper yell at her, "Angela Faith! What are you doing UP? GET TO SLEEP! It's the middle of the night! Enough!" before trudging back up stairs and back to bed.

One day last week I got up a little early, as in, ten whole minutes before Angela's alarm went off. Realizing I hadn't gotten her jeans out of the dryer the night before, I quickly got those and a shirt out and snuck into her room to set them on the chair where she sets her clothes at night.

From the darkness I heard,

"Who's in here?"

"It's just me. Mom."

"What are you doing here?"

"I put your clothes on your chair so you can get dressed."

"Mom, go back to bed! It's the middle of the night for goodness sake!"

Saturday, October 02, 2010

D is for Down syndrome

Keep and eye out, you might see a young lady you know in this video. This was made when Angela was....mmmm...9 I think? It debuted at the NDSC in Atlanta, GA.

When did this happen?

When did this happen? When did my little girl, the one who was born a premie, with more medical problems than we could keep track of, who we were told would probably never walk, never talk, and never amount to much...when did she grow up? If you are a  new parent, who have just been told your new baby, or the baby you're carrying has Down syndrome, and you have been told the same things we were, DON'T LISTEN TO "THEM". Listen to your heart! Love your child just as you have or will love your other children!

Today, I'm taking my beautiful young lady to a fall festival, where she'll spend the day with her friends.  Without me.