Thursday, September 30, 2010

Nine Months With Nina

1 What are your thoughts?
I cannot believe that it has been nine months since Nina has been home. The reality is that almost a year ago we flew to Ukraine, and at times I still feel like we have a long way to go. which I suppose we do! Nine months is not that long looking at the big picture.

In the last week or two, Nina has begun to look at pictures of our family. She wants to see all our family albums. Why? She is looking for herself. She constantly asks, "Where is Nina?" I think she finally is beginning to understand the meaning of family. That we all belong together. She is searching for her past with us.

This morning she asked if she came from my belly (Ellie had made a comment about her and Nichole being inside of me.) I told her she did not, that she grew in a different mommy's belly. Then I told her how Andy and I had found her picture, and how we had fallen in love with her so much, that we flew very far away to go get her. It was sweet to see Nina's face glow with excitement and the understanding of being wanted. A good reminder for me that this little girl has a very fragile past. Also a reminder, that Nina will have questions about what life was like before us, and trying to put the pieces of her life together.

Nina is trying to make sense of her life, and I need to pray for my heart to grow and grow in love for Nina, to chose love even when it is hard to do so, and to remind her that she is wanted, and that she belongs with us. She always did.

Tuesday, September 28, 2010

I Wish You Would Have Met Her

9 What are your thoughts?

I watch intently as my grandma sits on her vanity bench, carefully applying her makeup. She puckers up as she puts her lipstick on and it makes me giggle. With one hand she gently touches up her hair while she bats her eyes at the mirror. She is beautiful, and I am mesmerized by her. She looks at me and asks if I want some blush for my cheeks. I nod and cuddle close to her while she applies the pink color to my face. I smile and gaze into her hazel eyes.

My grandma and I sing together in the car. We have our own special and favorite songs. She is the only one that never criticizes my singing. I feel so free, so accomplished. I love our car rides together.

Once, my grandmother gets pulled over. The officer approaches the car and my grandmother bats her beautiful eyes at the young officer. He shakes his head with a smile and tells her to “be careful.” He too, has fallen to her charm. I understand, for I am under the same spell and will do anything for her.

My grandmother sings on the stage at one of her recitals. She wears a long, velvety, maroon dress. A grand piano in the background and a full house of spectators, all gathered to hear her sing. She invites me up on stage and I hold on to her leg. I am so proud of her. And she is mine, my grandma.

We sit on her bed, playing “kitchen.” I think she has just as much fun as I do. I forget that she has a weak heart, and that she needs rest. We laugh together, and I offer to put on a play for her. I perform and she claps for me, she tells me it was the best act she has ever seen.

Sitting on a kitchen stool I watch as my grandma separates the yoke from the white. One smooth motion as she cracks the egg and separates its contents. She pours the yoke into a small china cup and dumps a couple of teaspoons of sugar and hands it to me. I enjoy the sweet treat while she continues to bake. Later, we make flour tortillas together. We like to spread butter and sprinkle sugar on them. It is our weekend tradition.

My parents say I am being disobedient. She asks, “Ellen, won’t you do that for me?” I do, I do in a light year second, no questions asks.

I grow up, and find that I cannot stop talking to my grandma about life. I want to know what she thinks, I want her advice. She listens, she asks questions, and then I lay down with her as we watch a Mexican soap. She needs some rest, but her presence is peaceful, comfortable, and familiar. She has always been there for me.

She greets my husband with a hug and a kiss. She tells him “Pero que guapo eres mi chulo!” forgetting Andy understands some Spanish and loving that she calls him handsome. She says she is proud of me, of how I have lived my life. I want her to be proud.

I see her sitting on a chair looking outside her window, watching as birds fly by. A rosary in her hands and her lips moving. I know she woke up early and has been praying for her family, for me, my husband, my girls. She has always prayed.

Today she has closed her eyes for the last time. She celebrated her homecoming in Heaven, the life of the party. I imagine her hazel eyes sparkled as she met Jesus. Her heart, always weak, has now been restored.

But I miss her. Oh how I miss her. I wish you would have met her; you too, would have fallen to her charm.

Monday, September 27, 2010

It is almost time!

6 What are your thoughts?
October is just around the corner. And did you know? October is Down syndrome awareness month and it is also when we celebrate Nichole's birth!

In honor of my daughter Nichole and since it is a special month to celebrate those with an extra chromosome, I will invite you to ask any question that you have about Nichole, Down syndrome, parenting a child with Down syndrome, or life with a child with Trisomy 21.

What could you ask? Things like:
-What is it
-Is it contagious
-What causes it
-What is life like...
-What has been...
-What is the most difficult
-What is the greatest...
-Did you think
-I have wondered...
-Would you ever...
-Does Nichole...
-I feel like...

You get the idea.

Please know that there are no stupid questions or comments. Chances are if you are thinking that, someone else might too. It is Down syndrome awareness month so what a better time to ask these questions or share something about these wonderful works of art (people, like my daughter, who have Down syndrome.)

I will try to post every day, and I really do need some ideas! So join me in celebrating people with Down syndrome!

Thanks for your comments, and keep them coming!

The Homeschooling Adventure

3 What are your thoughts?
"Homeschooling? Me? Never!" This is what I would have told you if you had asked me six months ago.
When it was time to either enroll Ellie in Kindergarten or stick to the plan of one more year of preschool, it seemed like an easy choice. We did not want Ellie to be one of the youngest in her class. Personally I have never met a parent that regrets the decision of waiting, yet, know quite a few that wish they had. As a new mom in this schooling thing, we felt it was better for Ellie to do one more year and follow advice from people we trusted.
But then Ellie said she wanted to learn how to read and write just like her friends. And she wanted to do math. It was not just a little idea, she was really excited about it. But she did not want to get up early and go to school every day.
I always thought that if I homeschooled one of my kids it would be Nichole. I thought Ellie and I having such similar personalities (yes, she really does take after her mother) would fight a lot and just be frustrated with each other.
Well, after five weeks of homeschooling Kindergarten, we are loving it!
We don't push it, we just have fun. Ellie said, "I love homeschooling, it is just mommy and I and we get to work together!" She even asks for it during the weekends.
We are almost done with the alphabet (phonics) and she is doing so well with math! I mean incredibly well! And she is loving it!
I am not sure what we will do next year! Thankfully, we have a few months to figure that one out!
And what else are we doing via homeschooling? A dance class! Yes, I am a dance teacher again. And you know what else? Nina and Nichole get to be a part of it!
And we are loving it so much, that I have some stuff ordered for Nina and Nichole. Who would have known it. Me? A homeschooler?

Sunday, September 26, 2010

She Has Syndrome!

0 What are your thoughts?
"Nichole has syndrome!" Nina blurts this happily out of the blue.
"What did you say?" I ask
"Nichole has syndrome!" She responds while jumping on her knees excited.
"You mean she has Down syndrome?"
"Yes!" She squeals.
"And Nina, remember, you have Cerebral Palsy."
"Yes, yes I do! I have Cereal Pasy! Just like my friend Oksana! And that is so cool!"

I still don't know where this conversation came from, and I am not sure she will always think that having "Cereal Pasy" is cool. But today, it gave me a good laugh!

Saturday, September 25, 2010

EKS Acts of Unity

0 What are your thoughts?
“Eunice Kennedy Shriver Day” (EKS Day) will promote a global call for people to commit acts of inclusion, acceptance and unity for individuals with intellectual disabilities (EKS ACTS). I have been asked to help spread the word about this fantastic day by my friend Gillian (who's post I have copied here, she gets all the credit!)

Anyone can participate with an Act of Unity. You don't need to attend or host a big event. Your Act of Unity can be as simple as:
  • blogging, emailing, texting, and using your social media outlets to spread the word about the day.
  • Change your profile picture to a photo of Eunice (many images in that link to chose from), and
  • use one of her iconic quotes as your status update. Click HERE to hear audio files of Eunice speaking.
  • On twitter post: RT: I pledge to honor @SpecialOlympics by performing an Act of Unity on RT to sign.
  • Be sure to post your Act of Unity HERE.
"Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love."- Eunice Kennedy Shriver

Friday, September 24, 2010

Nina the Leader

1 What are your thoughts?
Nina got to be the Leader at school on Monday. As the leader she gets to lead the lines, bring a snack (and pass it around) and they get to be special for the day. No big deal really, but it is a big deal for the kids. And it is a big deal when you lived as an orphan and deemed as unworthy because of a disability. It is a big deal when you go to school and the teachers and your friends sing about how special God made you, and how much you are loved.
Nina uses her walker at preschool. I think being around all the other kids makes Nina really want to walk! She was headed down the hall to begin serving the snacks. She did great going around the tables, balancing in the walker with one hand, and serving the snack with the other hand. She chose bananas an chocolate milk.
The picture above is Nina with one of her teachers (which I cannot say enough how awesome her teachers are!) they were singing about loving Nina and God making her special (something like that!)
And my big girl Ellie. Both girls are in the same "group." They actually play together very well at school (and sometimes at home)
When my girls are leaders, I like to come to their school for the day. It was so sweet to see how all the kids look after Nina. Nina has one special friend who takes care of her with such tender care! All of kids are wonderful! They make sure Nina has her walker, they pat her gently on the back, they get things for her. A very sweet thing to watch as a mom. My prayer as a mom, is that Nina and Nichole always have friends like that.

Thursday, September 23, 2010

Ellie's Creative Creations

1 What are your thoughts?
This is Ellie's most recent creation. She used different media to make her picture. She still loves coloring and drawing, but she is going through a stage where that is boring and she wants to do a craft, or something that requires, gluing and pasting besides coloring or drawing.

She is a creative little girl and I am really looking forward the day that our walls are covered with her art. This particular one, she wants framed and put in her room. I think we can do that!

You can see more of her creations by clicking here.

And make sure you don't miss my previous post about Nichole and her rascal activities!

What Do You See?

3 What are your thoughts?
Look at the picture above. What do you see? First you will notice an ultrasound picture, in case you are wondering who it is, it is Nichole. Next, is a phone. Third in line is the monitor. Last, another phone and answering machine with 10 messages. So what is this picture all about?

We have two phones. One is just a phone, and one is the answering machine. The reason we don't use the answering machine phone is because we are too lazy to put batteries in, and the phone has been dead for about 2 years. So we took the easy route and plugged in a phone with working batteries.

Nichole loves phones, and she has been known to call 911. Nichole has a rule about phones. She may not grab our cell phones or working phone. She is free to play with the old cell phones and with the answering machine phone, that's it! You don't think she gets it? Let me let you in the other part of the picture that I forgot to mention.

The phone you see in the picture? It is the non-working, answering machine phone! Our sweet Nichole has been taking the working phone, and then moving the one from the answering machine over so that we think she is obeying!

Oh! And one more thing to point out about the picture, is that the ultrasound picture of Nichole shows her...smiling! Smiling all along at her mischievous deeds.

Wednesday, September 22, 2010

Welcoming Fall

3 What are your thoughts?
Growing up in Mexico I never really appreciated the change of seasons. I was 17 years old the first time I got to see the beautiful and abundant trees of Minnesota change from green, to deep reds, browns, and yellows. I had fallen in love with the greens and the lakes. But the reds and the warmth were just as inviting.

Today is the first day of Fall. It is beautiful to look outside and see the tress changing colors. The scent of pumpkin bars and apple cider.

And I also look forward to Thanksgiving. Last year we were in Ukraine, this year we will be home!

Happy Fall everyone!

Saturday, September 18, 2010

Our Down Syndrome Extra Family

5 What are your thoughts?
When Nichole was born, I did not know that her arrival to our family was also welcoming us into a new kind of family: the Down syndrome family.

I wrote an essay about our friend's daughter for the book Gifts 2. Still, as I struggled with the diagnosis and as I poured myself into doing research, I found an on-line community that was supporting one another. I read blogs from moms of children with Down syndrome, and I found forums where I was able to ask questions and share deep feelings. All these moms (and dads) welcomed me with open arms and became a life line as I journey through the unknown terrain of Down syndrome.

Our Down syndrome family is close. We support each other and we share our lives. It is amazing that you can develop such relationships without meeting face to face. yet, at some point, you want to meet the people that have been there for you just to give them a hug and say thank you! And also to see their children's faces in person and not just through photographs!

On labor Day, a few of us got together in St. Louis. No longer on-line friends, but now face to face friends. And I have to say, these women (and husbands) are phenomenal! I wish we could have had more than just a weekend together!
It is impossible to get a picture of all the kids happy and smiling! A few of the kids were not okay with the idea of pictures! This is from our first day together.
The picture of Ellie and Nichole watching a movie is just cute! At the hotel while we were getting ready for bed the girls were having some down time.
Below, is a pretty sweet play place at a large church. We got to use it and the kids loved it. I have to admit this play place had an awesome slide and I was a little sad I only got to go down one time. Nichole wanted nothing to do with this place!
Our biggest group get together was at a restaurant. I have "known" all these ladies since Nichole was a baby as their kids are all older than Nichole.
And here it is all of us moms at the restaurant. I think a few were missing. But what a fun group huh?
One night, we got to go hang out at Braska's house. Jack came over to play too. All three kids enjoyed signing time (I have to say it is pretty sweet to be around a group of people that all sign! Incredible!)

About little Jack...he wrapped me around his little finger. What a lovely little boy! He was being so sweet to me, hugging me and kissing me that it made Andy and I wish for a little boy just like him!

I wrote a post earlier today, so if you did not get to read it, make sure to read Special Needs: They are all so Different.

Friday, September 17, 2010

Special Needs: They are all so Different

0 What are your thoughts?
I grew up knowing little about special needs. What I knew, was that I was not to stare and to stay away from "those people." Once, I even heard that when parents gave birth to a child with special needs, it meant they had done something wrong and God punished them with such a child. Nichole has never been a punishment to us. Her Down syndrome has been one of the greatest blessings our family has experienced. I wish I would have known that before she was born, maybe it would have helped me deal with her diagnosis a little bit better.

Two years ago I had the privilege to attend a conference called "Parents as Presenters." It was the first time I had been surrounded by parents of children with different special needs. I had come to the conference expecting to have so much in common with these parents (which we did) but what I learned that weekend was that each special need has its own challenges and blessings. My eyes were opened to the world of special needs beyond Down syndrome.

Once we adopted Nina, her Cerebral Palsy challenged us in ways we never had been challenge before with Nichole. Somehow, I feel like my understanding of special needs has expanded, and yet, I feel like I lack in so many areas.

There is little about Down syndrome that I do not know or have not heard about. Really, once Nichole was born, I began to study Down syndrome, I began to research. Our Down syndrome family is close! In facebook, the blog world, the forums. A wealth of information that I access daily.

Cerebral Palsy? This is a different story! I feel like I have just dipped my toes in the waters of CP. The more I learn the more I realize that I have a long ways to go. I think starting out with an almost 4 year old did not help me "grow up" with Cerebral palsy along with Nina. I am discovering more and more that what we think are behavioral issues are sometimes common to CP. I am learning about new treatments, surgeries, procedures that are hard to understand or to know what they are for.

But I am learning, as I go along.

Down syndrome and Cerebral Palsy are so different. We had it "figured out" with Nichole. Nina's CP challenges those areas we had tackled with Nichole. There is no one size fits all with special needs.

Our family is stretched and molded with our three special little girls. What a journey we are on!

Thursday, September 16, 2010

Don't Accept, Expect: Paul Daugherty 2009 Keynote Address

0 What are your thoughts?
I read this keynote address a couple of weeks ago and I loved it! Paul has a child with Down syndrome, and what he has to say is what many of us parents feel. This is what we want professionals to remember, this is what we want to share!

Paul Daugherty delivered the keynote address at the Remarkable Families Symposium on Friday, April 3, 2009 in the Cintas Center.

Make sure to click here so you can read his speech in full. These are only excerpts of his address, my "favorite" parts:

Keynote Address

My daughter Jillian is 19. She is a senior in high school, who will attend Northern Kentucky University in the fall. She has performed in the school play, she has managed the school volleyball team, she was on the junior varsity dance team that entertains at halftimes of basketball games. Believe it or not, she holds the school record in her weight class for the bench press, the dead lift and the squat. (Dad already had one son. Maybe he wanted another.) Last summer, she worked 12 hours a week in a daycare center, making almost $8 an hour. The kids loved her, and cried when she left to go back to high school.

And she has Down Syndrome. In some respects, that matters a great deal. In others, it matters not at all. It's about perception, mostly. It's about insisting on getting what you pay for, and not leaving the ticket counter or the insurance office -- or the high school conference room -- until you get it.

People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.

Jillian once had a special ed teacher who sat in an IEP meeting with us and said, quote, she can't learn. Jillian has had teachers, too many teachers, who could not be bothered to explore her possibility. It has been amazing, watching these teachers, who at some young age must have though teaching was an opportunity to change a kid's life. Presented with Exhibit A in my daughter, most of them have attempted the bare minimum. They have missed their calling. They're enriched only by a paycheck. My wife Kerry and I have spent 19 years trying to change their perceptions. We will never stop. We have been guided by one thought:

Expect. Don't accept.

We have not allowed our daughter's aspirations to be tethered to the the way people look at her, without seeing her. We let Jillian set her own bar. Wanna dance on a team? If you're good enough. Wanna get a summer job working with kids? If they'll hire you. Wanna set the school weightlifting record. Sure, great, absolutely. No steroids.

We never say never. Never is not a word. It's a self-defeating state of mind.

We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.

We have spent an equal amount of time educating the educators. Don't just look at our daughter. See her.

All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud. Give 'em hell. Don't let them tell you what your kid can do. Expect, don't accept.

Something that we as parents have learned is, every small achievement is worth celebrating: Tying shoes, answering the phone, writing thank-you notes, making the bed, fixing breakfast. After each of these little triumphs, I always ask myself: Who got the better part of this deal? Jillian? Or me?

As parents, we've spent lots of time hearing what our kids can't do, will never do. We heard it from the first day. She'll never be able to... complete the sentence. We never bought into that. You get what you expect. Not what you accept. It is the difference between settling and battling. The difference between daydreams and real ones. You get what you expect. Not what you accept.

Don't accept. Expect.

What else did we hear? These kids won't read. Jillian reads at about a 6th-grade level. She's in a book club. These kids aren't good socially. There are times I wish that were the case. In her elementary school, Jillian was known as The Mayor. In intermediate school, she was appointed an ambassador, a 6th-grader charged with showing the rookie 5th-graders around the building.

Education should be the business of instilling hope. Too often, it isn't. I don't like being a pioneer. I'm not curing polio. I'm just expecting teachers to do their jobs. I'm not accepting any less. There are teachers at Jillian's school now who frown at the mention of my name. And my wife's. We're a pain in the ass. Other parents have to change diapers. We have to change minds.

But what a payoff.

Here is what Jillian does. Here is the service she performs, by being her: She opens my eyes to the wonder of the ordinary. I've enjoyed the little wins with Jillian I took for granted with her brother: Using a fork, spelling, times tables, discerning the incredibly vital difference between homogeneous and heterogeneous mixtures. Actually, for several years, Jillian has had homework I can't do, making me wonder who's got the syndrome thing here.

I would never have seen any of this without Jillian's vision. I look forward to the next generation of milestones: Jillian home alone overnight, Jillian in her own apartment. Jillian, God help us, learning to drive.

As these kids grow, so do we. We spend less time asking why and more asking why not. Their limitations are obvious. What's less apparent is how many of those limitations disappear when we expect better and more, from them and ourselves. And when we accept nothing less. Their potential is limited only by our preconceptions.

It's called Down Syndrome because a guy named Down identified it. It's not down at all, not for the kids and the teachers and classmates who choose to embrace them. Certainly not for those of us who are privileged to know them and love them.

As parents of children with disabilities, we face unusual challenges. But also, unique opportunity. As we blaze the trails, bend the minds and tweak the perceptions, we reap the rewards of knowing we've made the world a better place. We're only as good as the way we treat each other.

Expect, don't accept.

Wednesday, September 15, 2010

Nina has Glasses

7 What are your thoughts?
Yesterday Nina got her glasses. We have really talked about how great it will be when she has them, so she was very excited to finally get them.

We think they really make a difference as we heard her say, "I can see better!" We are not sure she is repeating something we told her would happen, or if she in fact realizes that they help.

Ellie on the other hand was very sad about Nina getting glasses. She is afraid that Nina will get picked on, or that she will not look as cute. We talked to her about how much glasses will help Nina, and that looks are not important, but only what is inside our hearts. In some very small way, this is the first time that Ellie realizes that one of her sisters is "different." It amazes me because Nina has braces and a walker and Ellie has never made any comments. But glasses?

However, this morning when the girl were going to school, Ellie was the one to remind us not to forget Nina's glasses. At school, as they began to color, Ellie pointed out that Nina was trying to color inside the lines. Ellie cheered for Nina and celebrated. "Look mommy, the glasses are really helping Nina color better!" So the heart brokenness was short lived.

Thursday, September 9, 2010

Going to School

2 What are your thoughts?
It is hard to believe but the big girls have been in school for almost 3 weeks. Yes, I realize the fact makes this post a little outdated, but I promise this post has been waiting to be written because of its significance.

For starters. Ellie did not want a picture of her first day of school. Her only reason and complain was that "It is not my first day of school, I have been to school before." So I had to settle for a picture at school once the girls were settled in their class.

Ellie loves preschool and so far loves homeschooling as well.

Nina, unfortunately, did not get a special first day of school picture. I still might try to get one though. Sure it is only preschool, but that day signified so much more.
I dropped the girls off. I was very anxious about Nina and how she would handle school and the other kids. Fortunately she is in the same class as Ellie and they are in the same small group. It just happened that their group was assigned to the play-doh station. And wouldn't you know it, Nina loves play-doh!

Ellie and Nina's teachers are the teachers every parent wishes they had. I left preschool that day with the words from one of her teachers dancing in my heart, "I am not worried, I have great expectations for Nina, she has great potential."

As I walked back to the car, with the teacher's words still echoing, I allowed some tears to express the enormity of the moment. In the preschool room of a small town, a once-orphan girl was given the opportunity to learn. A fact, that would have never been possible had she stayed in Ukraine. Rather than a preschool room, she would be in the cold and stale room of an institution. This, because she has Cerebral Palsy, and therefore deemed as someone with no potential.

It might be "just" preschool, but for Nina, it was so much more. It was the promise of a future where the world will not close her up and leave her to die. But rather a world that says to her, just like her teacher did, "I have great expectations for you Nina, you have great potential."

And in her school she plays, she learns, she grows. She shows everyone that she indeed has great potential and our expectations grow and grow!

Sunday, September 5, 2010

Eight Months Home

2 What are your thoughts?
It is hard to believe that eight months have gone by. At the same time, we forget that Nina has not always been with us.

Nina's English continues to improve. While we know that she does not understand everything yet, it is easy to forget because she speaks very well. Maybe not like a typical four year old, but you would never guess she was adopted if you met her today.

Nina has started pre school, and that will be a post all on its own. She is in the same class as Ellie and she is loving it! She has the best teachers anyone could ask for and we are so excited for her!

Her outbursts and behaviors have improved thanks to being able to communicate. However, we are not sure if she is lying quite a bit, or if she is still learning English and she gets confused.

We finally took Nina to the eye doctor and as we suspected, she needs glasses. We should get her glasses soon and we will have some cute pictures to post. I really struggled getting "blue" glasses like she wanted to (from the colors we could choose) but I figured she has to wear them and we want glasses that she thinks are cute. Yes, I would have ordered plain brown, so maybe blue will be a good idea after all :)

For big news, now that we have the potty stool and she is comfortable using it, she can go potty all by herself! We have celebrated this milestone as it has given her so much confidence that she seems willing to try just about anything that "big girls do." She thought she might even be able to walk, but it ended up being a little hard. Regardless, I am thankful for adaptive equipment that allows a four year old with Cerebral palsy to be independent while going potty.

Nina uses her walker at school, and she does wear her braces most of the day. So that is a good thing! If only we could convince her that she can walk! (Because really, when she hold our hand, she is walking all on her own, she just does not know it yet!)



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