My thoughts on Sarah Palin

I promise that I will answer all the questions that were posted or e-mailed. Many of these questions have been answered in other posts. Since I am (finally) done taking in general about the "facts" of Down syndrome, I will start by answering the other questions.

So I am finally getting to the very first questions I got :)

What do I think about Sarah Palin?
If she was a man, nobody would be questioning the commitment to a family (such as nobody is questioning if Obama is really committed to his family). Because she is a woman, it seems to be a big deal that she is running to have such a highly demanding job.
Her husband, Tod, is a say-at-home- dude. I know of many, many families, where the mother works, and the father takes care of the children.
I know, in our family, I would trust Andy 100% with our girls. He would do just fine having them all day long. Would he enjoy it? Absolutely not! Would I enjoy having a full time job? No way! I love my job staying home with our girls, but this is our family, our choice. Every family has their own dynamics.

As far as I know, Trig is a very healthy baby. If so, he does not require any special care. He is a baby, just like any other baby. Yes, I am sure that he will be going to physical therapy, speech therapy, and occupational therapy. In our area, (as I believe it is in most of the United States,) many of these services are provided in the home. So I am not taking Nichole to all these places, rather, her therapists come to our house.
I have also recently read of a family that chose not to receive what we would call "professional" therapy, and they took it upon themselves to help their daughter who has Down syndrome. She is a beautiful, very high functioning child. Her parents have done something right even without the help of therapists. I have no idea what Palins have chosen to do, but I am very confident that Tod is fully capable to provide for Trig's needs.

So, now I am curious, what do ALL of you think about Sarah Palin? Her husband? And her beautiful son?

Beautiful Poems

My friend Vonda Weikert wrote these two poems for her son Noah. They are absolutely beautiful. Enjoy!

In the spring of 99,
a gift from up above,
was sent to me from heaven
to cherish and to love.
He's not what I expected,
and at first I was afraid,
but who was I to question,
the choice that God had made.
For he gave to me an angel,
so precious and so sweet,
and I thank Him each and every day
that the two of us could meet.
I named my angel Noah,
he's the love that I adore.
He needs me more than ever,
but I truly need him more.
I'll turn my times of sorrow
into happy times at last.
The crying and the heartbreak
will be memories of the past.
We'll look forward to the future
and the milestones that it holds.
We'll battle all the boo boos, the sniffles and the colds.
We're together for a reason,
It was clear right from the start.
I'll be loving him forever, till death our lives will part.

Love,
Mommy

I pushed my little baby out,
they handed him to me.
I looked into his tiny face,
he was as perfect as could be.
Then the doctor said “Down syndrome”,
and my joy turned into fear.
How could he have Down syndrome,
for he was so sweet and dear.
His perfect hands,
his tiny feet and chubby little toes.
His jet black hair, his dark brown eyes,
and little button nose.
They have to be mistaken.
The diagnosis just can’t be.
Then they handed me the test results,
and it was plain to see.
My baby has Down syndrome.
Those words cut like a knife.
My baby has Down syndrome,
and he will for all his life.
I cannot make it better.
It will not go away.
But I can continue to love him,
with every passing day.
For God gave me a child with Down syndrome,
as it was in the plan He had.
And as time goes by I realize, Down syndrome isn’t bad.
My son has filled my heart with love,
and brought me so much joy.
He is my little angel. . . . . . . my perfect little boy!!!!

Love,
Mommy

Copyright © 1999-2002 Vonda Weikert. Used by permission of the author.

People First Language

This is a MUST read.

If you were to be involved in any type of public service, especially if dealing with people that have different "abilities." One of the first things that you would learn is something called People First Language (PFL).

What does this mean? It means that people are people first, regardless of their diagnosis.

Let's say I am diagnosed with migraine headaches.

Would you say...
She is migraine or She has a migraine

Would you say...
Migraine people or People with migraines

The diagnosis, does not account for who I am. I am person first, and I just happen to have a migraine.

Now let's do a little exercise. Let's talk about Down syndrome...
She is Down's or She has Down syndrome
Down's babies or Babies with Down syndrome

My daughter is NOT Down syndrome.
Down syndrome is something that she has, not something that she is.
Down syndrome does not define who she is as a baby.

Nichole is a baby FIRST, and she just happens to have Down syndrome.

Andy will be the first one to say he does not hear it all the time, sometimes he slips and does not use PFL. Me, on the other hand, hear it every single time. It is possible that I have been talking to you and I have gently corrected you, please do not take it personal, it is just that my baby is not her diagnosis. She is a baby, really, weather she has Down syndrome or not.

On a similar note, I was asked

Is it...
Down's syndrome
Down syndrome
Down's

It is Down syndrome. But, in other places, like the UK, it is Down's syndrome. So, it really does not matter, just for as long as you use People First Language. :)

Ellie's Sister

I am often asked about how we have explained Down syndrome to Ellie. At her age, it would be unrealistic to try and explain chromosomes. We could talk about how her sister is "different," or the challenges that she will have in her life. However, we have chosen not to do so.

If there is something I really want for my daughters, for Ellie in particular, is for her to see Nichole as her sister, and nothing more. I want them to play together, laugh together, and be friends. The last thing I want is for Ellie to look at her sister as "different."

We have said a few things, like it will take Nichole a little longer to grow-up. Ellie accepts it. She does not care that her sister is taking longer to grow up. After all, how would she know the difference?

We do not talk about how Nichole is different, because Nichole, and all children with Down syndrome, are more alike other children that they are different. Instead, we talk about all the things that they can do together, and the things that they will be able to do as they grow up.

Someday, Ellie will start to notice that her sister is not like everyone else. I am aware that someday, Ellie will start asking questions about her sister. It breaks my heart to know that Ellie will start wondering if her sister is different because of other people. Someday, she might hear someone say something about Nichole, that she is "slow," that she "can't talk well,' or that, "she is retarded." (If you have not read my post on Down syndrome and health, PLEASE do so)

One of my dreams for Ellie, is simple. That she will love her sister. I want Ellie to be an advocate, I want her to stand up for Nichole. Most of all, I want her to want her sister. I know maybe some day, Ellie could be embarrassed of Nichole at some point in life, and I cannot tell you as a mom how hard that would be.

Are we going to tell her that Nichole is different? We will, and when we do, this is what we will say.

Your sister is different. Many people think that she is not perfect because there are some things that are harder for her, or she is not very good at. They think those things are bad. But, there is something all of those people do not know, but we do.
Nichole is different, because God knew our family needed her to be this way. She is different because she has a big heart, a heart that can love better than any other. Her eyes are different. She is able to see people the way God sees them, regardless of who they are, what they look like, what they smell like, or if they are popular or not. She has a harder time talking because what she has to say, she can say it with a hug, with a smile, with a kiss. What she has to say is that God's love is abundant, and pure, and real.
She seems not to be as smart as others, but in reality, she is smarter than most of us, because she knows about what really matters in life. She knows all about love, joy, peace, kindness, gentleness, goodness.
Your sister is a very rare gift to this world, and God has chosen us to be her family. We are so lucky! God will bless you so much because she is your sister.

Before Nichole was born, I was excited that our girls would only be two years apart. I pictured them being best friends forever. Doing all sorts of things together. Like I have shared before, this was the hardest dream to let go off. As a matter of fact, I still have to continually let go of it, I would be lying if I said I don't think about that anymore.

But there is something I do know. Nichole is the best sister Ellie could have. God knows exactly what He is doing. Because of Nichole, Ellie will have a bigger heart. Because of Nichole, Ellie will learn to see past the outer shell of people and look into their hearts.Because of Nichole, Ellie will know how to love unconditionally. A "typical" sister, would not change her life in this way.

They will play together, laugh together, and be friends. As a matter of fact, I really do believe that the will always be friends, always best friends.

There are two other little girls with Down syndrome in our church. Ellie loves them both. She wants to play with Ryley because she is a "big girl" and she is fun (and has a pretty cute brother). The only difference Ellie sees in Ryley is that she cannot talk as well, but she knows it is because Ryley has a big heart that loves a lot. She knows Ryley loves her, and that is enough for Ellie. And there is Jennifer, one of her best friends. There is nothing different about her.

And Nichole...Ellie will tell you in the future, there is nothing different about her either!

And in the small ways that she is different, I hope someday Ellie says, "I want to be more like my sister." And, "She is my closest friend."

Celebration

We celebrated Nichole's Birthday with family and some friends that have truly become like family to us. Nichole is loved by so many people.

When Nichole was born, I quickly realized that the way we dealt with her diagnosis, would pave the way for how others would look at her. I decided, a year ago, that I would share my daughter. I knew that as everyone else got to know her, they would fall in love with her and see the beauty of her life, with an extra chromosome and all.

I would say that we have a wonderful "family" that celebrates her life with us. A "family" that is able to see the blessings that have come packaged in this little baby. A "family" that without a doubt would say babies with Down syndrome are the sweetest babies (and Ellie too!). A "family" that has blessed us in return.

Thank you, to all of you, for showering our family with love. We are so thankful for you, and we love you all, very much. You will forever be in our hearts, and you will forever be part of our family.

Nichole was not so sure about her cake, so mommy had to help her eat it. She loved it!

Grandma Chachi loves Nichole.

So do her aunties, Ale and Luisa (Lindsey is in the picture too, she is the most fantastic babysitter, and an auntie too)

And here area some pictures of Nichole's (and ours) new family)

Lindsey and Connie Glandon (we missed the rest of the family)

Grandpa Ken and Grandma Darla

Randy and Marilyn, who watch Nichole every Wednesday so I can be involved with youth group.

God Chooses a Mom for Disabled Child

I do not think of Nichole as disabled, because she has so many abilities. Yes, there are many things that she cannot do, but there are many that she can do. If she is disabled in the world's eyes, I know I am disabled in God's eyes. So what is worse, to be disabled in a world that will pass, or disabled in that which is eternal?

I came across this poem when Nichole was little. I have posted it here before, but I thought I would post it again. Even though I cannot relate to all the poem, these last verses are so true, and are the only ones I am writing.

I do not like the title, but then again, Erma wrote it a long time ago. I am grateful that she was able to see the beauty of those that are "less than perfect," and capture it in such beautiful words, and from a mother's perspective.

God Chooses a Mom for a Disabled Child
by
Erma Bombeck

There is a woman that I will bless with a child less than perfect.
She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word.'
She will never consider a 'step' ordinary.
When her child says 'momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her child, she will see it as few people see my creations.

I will permit her to see clearly the things I see---ignorance, cruelty, prejudice---and allow her to rise above them.
She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

Health and Down Syndrome

Some of you have been asking and wondering what are the health issues associated with Down syndrome. Is there any special care?
Like with any child, there may be some health problems, and like with any child, you will do whatever it takes to ensure that your child stays healthy and provide the best resources for him or her to develop.

It is very true that there can be some serious health issues associated with Down syndrome. Some people believe, that only 20% of babies with Down syndrome make it to delivery, and the other 80% are lost in natural miscarriage (this is not factoring abortion numbers). So every person you ever see with Down syndrome, is a true miracle!

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

Nichole has a small hole in her heart. She will be having an echo (a heart ultrasound) next month. Our Cardiologist has not been able to hear the heart murmur in the last couple of visits. He said he was hopeful that the hole in her heart has closed on its own (God is a perfect physician.)
Nichole has issues with Reflux, they will last a little longer than the average baby, but then again, Reflux is common in all babies.
Nichole gets her hearing and thyroid checked every six months. So far, so good!
Even though colds and ear infections are more common in children with Down syndrome because of their smaller passages and poor drainage, Nichole has never had an ear infection. She is however, congested quite a bit, but in the large scheme of things, it is not a big deal.

Low muscle tone. Almost all individuals with down syndrome have low muscle tone. This can be a physical trait, but this is what takes us to therapy each week. Our bodies have muscles everywhere! Our legs, our arms, our core, our tongue.
It takes children with Down syndrome a little longer to achieve certain milestones, such as rolling, sitting, crawling, standing, walking, running, jumping. Think about it, if you had to make your muscles work twice as hard, it would take you a little longer too!
Our tongues are powerful muscles, and we do not think much about that. Some babies with Down syndrome have a harder time when it comes to feeding. Nichole was not able to nurse well until she was about 5 months old, but she did just fine with a bottle. This also means that talking will come a little later. It is amazing how much you learn about all that your tongue does when you talk as you take your baby to speech therapy, talking is really hard work! And so many of us take it for granted.

There are a little extras that we do because Nichole has Down syndrome. We do these extra things because we want her to develop and reach those milestones. We have Physical Therapy, Speech Therapy, and Occupational Therapy. We basically have a whole team of professionals that are here to guide us as we help Nichole grow and develop. How I wish I would have had that with Ellie! It is not a weekly burden, because as a parent, you will do whatever you have to do, and a few hours a week, are no more than a few TV shows. It is that simple, and it is about priorities.

Now for the tougher one. I struggled in how to answer this question, so I will try to answer it as best as I can. Many individuals with Down syndrome have some degree of mental retardation. Retardation, means, that it takes them a little longer to learn things. It DOES NOT mean that they will not, but only, that it takes longer. Intelligence has been measured by IQ. Most individuals with Down syndrome fall into the mild to moderate mental retardation. However, each individual is unique. If there was such a thing as an IQ test to grade the emotional/intuitive level of a person, children and adults with Down syndrome would rank MUCH higher than a typical person. Unfortunately, we only test for Developmental milestones.

I love what my friend Christine from a Down syndrome forum had to say.
Is Nichole retarded, or is she slow?
She is neither.
She has Down syndrome.
She therefore does have some degree of what is clinically known as mental retardation. What this means can vary from individual to individual.
Yes, it may take her longer to learn certain things; however, in some areas she may not be delayed at all.
Until she shows us differently, we assume that she will be able to do the same things as everyone else.
People need to look past the physical features and the stereotypes they associate with these features and look at the individual. They will surprised at what they find.

Which brings me to the word "Retarded." The only "R" word that a person with an intellectual disability deserve is the word "Respect." Next time your friend is acting silly, or someone does or says something stupid, please, do not say, "You are such a retard, "or, "That's retarded." When you say that, you are talking about a people group, a people group that includes my daughter, and they deserve the same respect that you and I do. Before you use that word, think about who you are referring to, what you are implying. Would you say, "You are such a Nichole." Or even more, would you use a derogatory name that is associated to a people group. No, you would not. Because you know that it is not appropriate, you know that it is degrading and wrong. The word retarded is the most offensive word in the English language. It is a word that is used to describe something stupid, something with a fault, something with a mistake, and it is said in expense of my daughter. These are the people that need to be respected, but most important, valued! Because they are God's creation, loved by God.

That was heavy stuff. Did not know I would go there, but I believe this is part of raising awareness. And I hope that a little seed is planted in your heart. These are important issues, and issues that affect all of us directly or indirectly.

Going back to our original topic. There are health issues, and it is important to be aware of these. But like I said before, health issues are present in all babies, weather they have Down syndrome or not.

Other than that, having a baby with Down syndrome is NO DIFFERENT than having a baby. She is a baby! I feed her, change her, get her dressed, give her baths, hug her, kiss her, sing to her, play with her, and love her. Much like I did with Ellie, and much like you would with any other baby.