Saturday, August 28, 2010

The Girls

0 What are your thoughts?
Now that school has started, all the girls are settling in a routine. By all the girls I mean me included!

Ellie loves school, although she refused to have a picture taken for her fist day. "It is NOT the first day of school! I have been to school before!" It did not matter how many times we explained it was the first day for that new school year, she still would have non of it.
At preschool she likes having Nina in her class, but I do hope that she makes other good friends too. Her best friends moved up to Kindergarten, so she was a little sad about that.
We are, however, homeschooling Kindergarten. I was not sure that would be a good idea for us, since we have very similar personalities and feared it would be bad for our relationship. But after a week (who knows what I will say in a month!) I am loving it, and I think she is too. Confirmation that children do learn better one-on-one.
Why are we doing this? because she wanted to, she wants to learn to read and she wants to learn math (for real!) but she is not ready to be going to school every day, all day. She already struggles with only 3 days for preschool.

Nina is doing very well at school. She even has a friend! And although terrified of the potty at school, she has had no accidents! So she is doing very well.
We finally took her to the eye doctor, and sure enough, she needs glasses. The funny thing is, she wants glasses and cannot wait to have them. I will make sure to post pictures as soon as we get them, which should be in a couple of weeks max.
This explains in part her fine motor skills and how much she struggles to color, trace, or some hand-eye coordination tasks. We are excited to see her improve in that area.
She is also tolerating her braces most of the day, and she asks for them sometimes! At school, she gets around in her walker for the most part, so I do hope that this encourages her to try to take some steps (You know, seeing all the other kids walking might make her want to do it too!)

Nichole is as sweet as ever. I do love having three mornings a week just with her. I really want to work on her speech, as she is really struggling with articulation right now. She can say a lot of things, words, and phrases. We just do not understand her. She is dropping some signs because she is saying the words, but we do not get the words many times. For example, "napkin," "blanket," and "pancake" sound exactly the same. Good luck figuring out which one she says.
Homeschooling Ellie is now making me look into some preschool programs for Nichole. I am working on putting some things together so we can really get her going.

I am thinking about teaching a dance class for all the homeschooling families. I was going to do that just with my girls, but I think it will be fun and that way we will really do it and not just think about it. Also, maybe this will be the beginning of "adaptive dance." Because Nina and Nichole will get to be a part of it, and I think they will both be great little ballerinas.

Friday, August 27, 2010

The People Who "Are"

1 What are your thoughts?

It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?

It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.

The people who 'ARE' what the 'R' word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Thursday, August 26, 2010

What Adoption Does Not Do

0 What are your thoughts?
A good friend of mine recently sent me this link to the site Together For Adoption. It was written by Johny Carr, the national Director for Church Partnerships for Bethany Christian Services.

If you are adopting, have adopted, or know someone who has adopted, this is a great read.

In the adoption world, many times you will hear that a child's adoption, is much like our adoption into God's family. It is a good analogy, but we need to be careful with the theology behind. You can read the entire blog by clicking here.

This is an excerpt.

What Adoption Does Not Do

BY JOHNNY CARRPublished Aug 25, 2010

I love to tell our adoption story when I preach. During the sermon, I show pictures taken within the first few hours of James meeting us. One shows me and James laughing heartily together. Another shows him taking a nap with his new mom. One shows him and his new brother wrestling on the bed, while another has him walking hand-in-hand with his new older brother and sister. We had much the same experience with our daughter Xiaoli’s adoption.

However, what the pictures do not show is the hurt, confusion, and emotional stress our adopted children endured. James was four years old when we adopted him, and Xiaoli was six. They were both old enough to understand that something major was happening but, since they are deaf, they had no way to understand adoption.

Even for the children who do have language, how do you describe adoption? How do you fight the rumors that circulate in the orphanages about what happens to adopted children? How do you prepare them for a family who might not look like them, smell like them, act like them, or use the same language? Every adoption story is accompanied by a story of grief and loss.

When we are adopted into God’s family, the Holy Spirit takes up residence in us. This is where the one-to-one relationship breaks down. The Holy Spirit gives us the ability to know the mind of Christ through our salvation (1 Cor. 2:10-16). We are made into a new creation (2 Cor. 5:17). When children are adopted, they receive a new family and the prospect for a new life, but they are not a new creation.

Adoption does not heal a child’s past. People often say that my adopted children are “lucky” to have been adopted. I know what they are trying to communicate, but they are not grasping the totality of what my children have lived through.

Recently I read an article by Catherine Olian, writer and former producer of 60 Minutes. This is part of what she wrote about her daughter who was adopted from Ukraine:

Outside our home, she behaved herself and charmed most everyone. She did take exception when adults told her she was “lucky”. In her blossoming English she would unhesitatingly respond, “Did you lose your first brother and sister? Did you grow up cold and hungry? Did you live two lives, in two different countries? No? Then you must be the lucky one.” I’ve yet to see anyone disagree with her.

As this incredible wave of orphan care and adoption ministry continues to gain momentum in churches, we must make sure that we have a good theological understanding of adoption and a good practical understanding of adoption.

While I will continue to show the sweet pictures of our adoption journeys during my sermons, I will also take the time to educate families about the grief and loss that is always part of adoption. Healing can take place, and for many children, it starts with adoption…but it doesn’t end there—it never does.

Tuesday, August 24, 2010

The Party

3 What are your thoughts?
For Ellie's birthday party we went to the Minnesota Children's Museum. She had a blast! This was the first year she did not have a party with friends, and I don't think she minded it at all. It was the "funnest day of my life!" according to her. Ellie has alot of those days.
Adult, child ratio was 2:1. let me tell you, that is the way to go! Because sometimes 3 little girls really do need 6 adults to help them have fun!

Monday, August 23, 2010

Great Sermon

0 What are your thoughts?
If you have time to listen to a great sermon, then go ahead and click HERE.

My husband preached on August 15. He shared about our journey with adoption, and many of the feelings that we had to wrestle with as we walked that road. I have shared here in writing, but I recommend you here him share as he speaks.

If you have had any storms in your life, I highly recommend you listen to him, it is not just about adoption, this really is about life and the hard things we go through.

Just look for August 15 by Andy Stumbo.

Sunday, August 22, 2010

My Princess Is 5!

2 What are your thoughts?
My big girl is 5 years old! Five years ago, Ellie turned me into a mother; a job I always wanted to have. She has filled my life with smiles, hugs, kisses and silliness.

Let me tell you a little bit about the day she was born.

We arrived at the hospital around 5 am. I was not given the okay to push until 7:30 pm. It was long and painful. And in our little town, an epidural is not an option, you just deal with the pain. For all those hours, Ellie had her little foot jabbed against my ribs. I would push it down and in no time, she was digging it in again. Not a nice thing to do to mommy when she is trying to bring you into the world!

I pushed for 2 1/2 hours. And her little foot was still pushing on my ribs. Outside the delivery room was my mom, dad, little sister, aunt, cousin, and 2 friends of the family. They say they could hear me screaming and that it was taking a long time. I do not remember any of that, except her little foot.

One of the nurses said to me, "Push like you mean it!"

What? Don't you mess with me right now!

"What do you think I am doing!" I screamed right at her.

She smiled, "Now, that, was your best push." She added on, "Let's make her angry so she can push that baby out."

Ellie did not crown, she did not come body part by body part. She just finally got her little foot against my rib just the right way, and she pushed herself all the way out! One moment she was all in, and the next one she was ALL out! You should have seen the doctor's face as he had to catch the flying baby!

Then they laid her on my chest as I cried, "My baby, my baby, my baby." Ellie looked up straight at me, and just like that, I felt a love I had never felt before.

Happy birthday my sweet Ellie. I am so proud of you. You are a dream come true. You help me remember what it is like to play, and dance, and accept others. I have so much to teach you, yet you have taught me so much more. I love you with all my heart, and foot, and belly, and hands!

Wednesday, August 18, 2010

Music Video

2 What are your thoughts?
Yes, I am posting a music video. You might even say, "Again? More music videos?" Yes, more!

But, this is too cute to pass, you have to watch it. A seven year old boy wrote this song for his little sister. I admit, I got a little teary eyed.

What is the impact of children with Down syndrome on siblings? Well, just see the heart of this seven year old boy. Phenomenal!

Monday, August 16, 2010

Love To Read

4 What are your thoughts?
I have always loved reading. As a little girl I read as many books as I could and my goal was to be able to read the big books. I watched "Tom Sawyer" the cartoon and I knew we had the book on our shelf. Once in a while I would pick up the book and try to read as many words as I could.

Once I could read, I devoured many of the classics, like Heidi, Little Women, and of course Tom Sawyer.

Little Women and Tom Sawyer were my favorite books. Maybe my "comfort" books. I read every version I could find in English and Spanish. I have not read Tom Sawyer for a while, but four months ago I found another version of Little Women (free on Kindle!) and I had to read it again.

I am always in search for good books to read.

I just finished "You Matter More Than You Think," by Leslie Parrot. Great book, I might have to blog about it.

I am currently reading "Hello, I Love You" by Ted Kluck. This one is turning out to be quite therapeutic as he shares his journey bringing home his two sons from Ukraine.

But I am out of "fun" book ideas.

Any suggestions? What do you like to read?

Tuesday, August 10, 2010

If You Want Me To

3 What are your thoughts?
I am looking for information on a surgery for Nina called PERCS. I was trying to find blogs where I could see the before and after difference in children that have this surgery.

I cam across a blog that was playing a song. It caught my ear, and in light of my previous post, I thought it was timely.

If You Want Me To by Jenny Owen

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

ya oh oh no

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley

If You want me to

Monday, August 9, 2010

Jesus Draw Me, Ever Nearer

1 What are your thoughts?
Here is the song I posted about last night.

I often find myself wishing that there were no hardships in my life. However, life happens, and we do live in a broken world. May this song be an encouragement to you, as you face the different storms of life.

Sunday, August 8, 2010

Draw Me...Ever Nearer

1 What are your thoughts?
"Jesus Draw me, Ever Nearer"

Jesus draw me ever nearer
As I labour through the storm.
You have called me to this passage,
and I'll follow, though I'm worn.

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.

Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.

Let the treasures of the trial
Form within me as I go -
And at the end of this long passage,
Let me leave them at Your throne.

This blog could be a series of posts about how wonderful our family life is, or of how well I can handle having three little girls under the age of five. It could be full of wonderful moments and great photos that show you how put together our little family is. I could paint you a word picture of us as the poster family in a Pastor's magazine.

The truth is, we are far from having it all together. We are broken people, and we do the best we can loving God through our brokenness. We struggle in life, we mess up, we even dare cry and shout out to God, "You have abandoned me! You don't even care!" Once those words are out of our mouths, we realize how needy we really are.

Last May I posted about Grief Is Not a Speed Sport. It was as honest a post as I could write at the time. But let me back up a little. On July 28th of 2009 we committed to adopt Nina, and on that day, we began a journey that we knew would be emotionally draining. Except now it is not just something that we know, it is something that we have lived, it is something that we are still experiencing.

I have shared as much as I can share about our adoption journey. I have shared about when we first met Nina, and of how falling in love with her has been a journey. Some things I am not ready to share yet, because I am still working through those feelings.

Adoption is hard, it is very hard. The process begins as soon as you start getting paper ready. This process is emotionally exhausting. Then you travel to a different country, already emotionally exhausted. For me, at the end of my time in Ukraine, I was an emotional mess. Just ask the many eye witnesses at the different airports as we made our way back home. Arriving home did not "wipe away my tears" so that we could start anew, I was already too spent to give anything to my girls. I was too tired to love Nina.

God began healing in me, in my heart, when He sent that Russian speaking lady to our small hospital room. It was the day I gave "birth" to Nina. It was the day I first loved her. She had already been with us for almost exactly four months.

A friend said to me, "Ellen, the fact that you were called to adopt Nina does not mean that it is any easier for you than it would be for me. It is going to be hard, the difference is, you were willing to obey, even though it is difficult."

Throw in there some pretty significant issues with my family of origin, and you have a recipe for an emotionally unhealthy woman. Hello, my name is Ellen, and I am needy. If I don't do something about this, I am going to loose it.

In light of the emotional state of our family, Andy asked for a Sabbatical. We had that time from the end of June till last week. Throw in there some pretty sweet counseling, family time (that we really should have had when Nina and I got back from Ukraine), time away from home, and some time to sit on God's lap and you have a recovering me. Hello, my name is Ellen, and I am a recovering...human being.

We have learned much about taking care of our hearts. Of looking at what is inside and actually dealing with it, working through it. Allowing ourselves to feel, to let go. In reality, it is not just about the journey of adoption, it is the journey of life.

Today at church we sang, "Jesus Draw Me, Ever Nearer." A perfect song as I reflect back over the last year. A perfect song as I can see the treasures that have been gathered through the trial. Treasures that have made me love God even more, and hopefully made me more to His likeness. In light of that, I am thankful for the storm, and I am thankful for the journey.

(And if you need to, go ahead, read again the lyrics of "Jesus Draw Me, Ever Nearer." We all have storms in our life)

Thursday, August 5, 2010

Inclusion and Friendship for People With Down Syndrome

1 What are your thoughts?
I came across this essay written by a high school student. It is an essay on friendship, and about the things that really matter in life, even to a teenager.

I am aware that some people might not see school inclusion as a good idea. Some are fearful that those with intellectual disabilities might hold the rest of the class back. Unfortunately there are still some who think that children with intellectual disabilities need to be confined to the special education classroom. However, I know that Nichole has much to offer her typical peers. So enjoy this beautiful essay written by Kaitlyn Smith.

Kaitlyn Smith
Period 5, 11/30/09

My Best Friend… My Hero

Staring up at the huge hill of stairs flooded with people slowly making there way to the top, I was frozen still. It was the first day of my freshmen year of high school, and I spent all morning making sure my outfit was pretty enough, my make up was blended enough and my hair was straight enough. I walked into school with my head held high, but my mind scattered in a million different directions. I had no idea who I was. All that I cared about was trying to fit in and look stylish. Looking back at freshmen year I am very ashamed of the person I was, but proud of the person I have become. My life has changed so much since freshmen year, and it is all thanks to one special person… my best friend.

Our friendship started at the beginning of sophomore year in gym class. When the teacher paired me up to work with her all year, I was excited because it was an opportunity for me to get to know her better. It didn’t take long before we became incredible friends. We sit together at lunch everyday, call each other on the phone, make each other cards, go to the movies, go shopping and spend every spare second we can with each other. Although this seems like a relationship that any teenage girl has with her best friend, it’s truly different. My best friend has changed my life.

Right from the moment I met her, I knew my best friend was a blessing. I needed someone in my life that was going to change my perspective and give me a different outlook. She did just that. Walking down the hallway with her one afternoon on our way to lunch, we passed a group of people that looked at her and laughed. My best friend looked right at them, kept a smile on her face and ignored it. After time and time again this same scenario played out exactly like the first, I finally understood. She doesn’t care what people think of her. After seeing how happy she is just being herself, I realized something that changed my life. I don’t need stylish outfits and perfect hair; I can be myself and be perfectly happy, just like my best friend. When I wake up in the morning, I no longer have to stress about the battle of finding a perfect outfit. I know that no matter what I wear my best friend will treat me just the same.

After my best friend made me recognize that who I am is acceptable, I stopped worrying about what people thought of me. I’ve heard repeatedly from several different people, “you’re definitely not the normal teenager,” but what is normal? Getting drunk every weekend, having every other word out of my mouth be a cuss word, dating ten guys a month, and experimenting with drugs? Well than I am completely fine with being different, and my best friend taught me that.

After being able to put all the pointless high school drama aside, I have been able to have so much fun! Instead of worrying about getting a date to homecoming, I went with my best friend. We got ready together with a big group of friends, and then all went to the dance. We danced all night together and had such an amazing time. For once I could enjoy homecoming without worrying about what my date was thinking, and if my hair was staying in place.

My best friend has changed my life more than words can explain. She is my hero. I have gained a new perspective on life, and have learned that you just have to be yourself. Some people look at my best friend and think that she’s different, but she’s not… she’s just like you and me. The only difference between my best friend, Kathleen and me is that she has Down Syndrome, but that is what makes her my hero. As Steve Guttenburg once said “If you’re an underdog, mentally disabled, physically disabled, if you don’t fit in, if you’re not as pretty as the others, you can still be a hero” and Kathleen is mine.

Wednesday, August 4, 2010

Stir Crazy!

0 What are your thoughts?
Today I will give you a peek into my life. After almost 2 weeks being inside because of chickenpox, the girls are going crazy!

Ellie is all scabbed, so she is good to go! Nichole is only a day or two away. She seems fine, but she is still really crabby and wanting to be held all the time. However, her spots seem to be all scabbed too!

So here it is, windows into our living room. And this goes on! Some moments are sweet, as you will see, but mostly, it is loud and wild!

Monday, August 2, 2010

Seven Months Home

1 What are your thoughts?
Nina has been with us for seven months and I cannot believe how fast time goes by. If you saw her now, you might think that she has been with us for longer because her speech is so...normal. Like it was the language she was born speaking. She still does not speak like a typical four year old, and some words confuse her. We know there are also some things she does not understand. But overall, our communication has little barriers. Mostly, we do not even think about the fact that she is still learning. She really is that good!

Nina has begun to refer to the orphanage as "Ira's house." Ira is the name of her favorite worker. She tells us what she did and didn't do at Ira's house. For a child that we were told was cognitively delayed, she has a brilliant mind! Today, she even told us about the day that we first met her! Really, she told us about it! She said, "Nina scared, and Nina just smile, like this." And she showed us the exact same look and smile we saw that day. Except we did not see the scared part. We were blown away by her memory, and how accurately she could describe it.

She says she cannot remember how Ira spoke, or what she ate. She says she had no toys, she only played with balls. She loves her family and her house because she has her own toys to play with, and nice sisters to play with too.

Some days I do not think about the fact that we adopted her, while some days are hard, and her behaviors remind me that we are just getting to know each other.

I am looking forward to her going to school. I am nervous of how she will do, but excited for her. I think this will be good! Just a few more weeks and she will be a preschooler!

Sunday, August 1, 2010

What About Your Child With Special Needs?

0 What are your thoughts?
We started this blog when our first daughter, Ellie, was born. Yeah, what a creative blog address huh? I suppose we were not thinking about future children, or the fact that it would become more than sharing pictures.

When Nichole was born, I began to write with a purpose, because the lessons she taught us were many, and because our lives were being transformed.

So this time, instead of me sharing one more of those lessons, I want to know about you. What have you learned? How has your child changed who you are?

Yes, I am asking for you to leave me a comment, or shoot me an e-mail, because I think we can all learn from each other.

And after you leave a comment, if you feel like it, you can read how I would answer this question. My Teacher of Life.



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