Myths aka My daughter is not always happy.

I started this post for World Down Syndrome Day. I'm only a month late!  

There are lots of myths out there about Down syndrome---which is kind of funny since everyone knows someone who has a child with DS.  Just go somewhere with your child with DS and someone will say how their second cousin has a Downs kid.  (Hey!  That's what they say!)  They will almost always mention how this child is always happy and loving at family reunions.  (Their family member must handle crowds much better than my daughter does.)  I'm not judging these people at all.  I'd much rather have someone try to engage me in conversation about Sara than ignore her or look at us with pity. I appreciate their attempt to find some common ground---especially since the classic questions "What's your name?" and "How old are you?" don't get your conversation very far with Sara.

Anyway, here are some of the myths that I've heard about people with Down syndrome and the truths as I've experienced them.

People with Down syndrome are always happy.  Variations:  They are angels here on earth.  They are so innocent and could never do anything wrong.  
I recently read a news article about a young man with Down syndrome who had been suspended from school for aggression.  I don't remember the exact situation but I remember the comments.  Countless readers were appalled that he had been suspended.  After all, people with DS were all loving and kind and could never be mean or aggressive.  It must have been a huge misunderstanding because these angels on earth are incapable of doing anything wrong.  It's not in their nature.  

I can assure you that none of those commenters were a parent (or teacher) of a child with DS.  Sara is incredibly sweet and kind.  She has a great heart.  She also bites and hits.  She is capable of doing wrong---just like any other 5-year-old.  She is very often happy but not all the time.  She experiences all the emotions that any other child does.  She is a human being, after all.  An extra chromosome doesn't change her into a robot incapable of human emotion or feeling.  Oh, and every morning when I have to get her up from school, she looks and acts nothing like an angel on earth.


People with Down syndrome will never get a job or live independently.  I also hear the converse of this---that all people with Down syndrome will be able to live independently, marry, and be famous actresses on Glee.  
I've read a lot of debates about whether or not DS is a spectrum disorder like autism.  Those who say it's not a spectrum disorder say that you either have it or you don't.  You can't "kind of" have Down syndrome. Those who say it is a spectrum disorder point to the wide variety of needs that people with Down syndrome have in all areas of life.  Some are very healthy; others have countless medical problems.  Some are verbal; others are not.  Some learn to read and write; others do not.  The list could go on and on.  That one little extra chromosome can affect every aspect of a person's life or barely affect their life at all.  

Back to the original myth---it is unfair to assume that every child with Down syndrome will be dependent on caregivers for the rest of their life.  It is also unfair to assume that every person with DS will live independently in the community.  There is such a wide varying of abilities in people with Down syndrome.  As with any person, they will reach their highest potential when encouraged and, maybe even, pushed to be as independent as possible.



Everyone with Down syndrome has three copies of the 21st chromosome.
I actually didn't know that there were three types of Down syndrome until the pediatrician suggested Sara might have Mosaic DS.  (She does not.)  

95% of people with Down syndrome have Trisomy 21.  Every cell of the person has 3 copies of the 21st chromosome.  This is the type of DS that Sara has.

1-2% of people with Down syndrome have Mosaic DS.  Some of their cells have an extra copy of the 21st chromosome and some do not.

3-4% of people with Down syndrome have Translocation.  In this type, a part of the 21st chromosome breaks off and attaches itself to another chromosome.  Cells then have an extra piece of the chromosome but not an entire extra chromosome.


Families suffer from having a child with Down syndrome.  It's not fair to the siblings and the parents always get divorced.  
I don't have all the statistics in front of me and I won't pretend that I took the time to find them all.  (After all, you'll never find two stats that agree anyway.)  It is true that having a child with a disability can be very hard on a family and a marriage.  Statistics do show that there is an increased divorce rate for families with disabled or chronically ill children.  However, those stats do not apply to families of children with Down syndrome.  Dr. Brian Skotko has spent his entire career conducting studies to show how a child with DS can positively affect your family.  If you are really interested in this information and the studies behind it, I would encourage you to read some of his work.

As a teacher, I have met some great families that have young adults with DS in them.  I've also met some that I wouldn't choose to socialize with outside of my professional relationship with them.  This is also true of families who have children with autism or any other disability.  Families are families no matter who is in them.  Some function well.  Some do not.  A family won't be perfect because it has a child with DS in it but it also won't disintegrate from that either.


Kids with DS never grow up.
They do grow up.  Just like every other human being.  They turn into adults in every way.  This is one of the many reasons it's important to teach them boundaries and social skills when they are young.  My mantra is:  "What's cute at 5 isn't cute at 15 and is criminal at 25."  Sara loves men (preferably between 45 and 60).  She has an uncontrollable desire to touch them.  Because of her height, she ends up grabbing butts--a lot.  Because she's 5 and cute, people smile it off.  They won't be smiling it off when she's 15 and they really won't appreciate it when she's 25.  That's why we are working on it now.  Because she will grow up!

Also, if you see an adult with Down syndrome---they are an adult.  Please treat them as such!  Can you imagine if someone talked to you as a 5 year old all the time?  How frustrating would that be?


Children with Down syndrome are only born to older parents.
Again with the stats that I don't have in front of me.  The majority of babies with DS are born actually born to women under 30.  That's because the majority of all babies are born to women under 30.  While being older increases your chances of having a baby with DS, younger women are not at all exempt.  Any woman could have a child with Down syndrome at any age.


People with Down syndrome plateau and stop learning.
This isn't true of anyone so why would it be true of people with DS?  Everyone can continue to grow and learn throughout their life.  Now, if your child with DS is 15 and still working on phonics, it might be time to find another way to teach them to read or to focus on important sight words but that doesn't mean they won't learn anything anymore.  It just means phonics isn't going to work for them and you might need to prioritize the important skills that they need to learn at this phase of their life.


All people with Down syndrome will be over weight.  
A lot of people with DS do struggle with weight but a diagnosis of DS does not have to equate with obesity.  Like every other human being, they will benefit from proper diet and exercise.  They should also have their thyroid functioning checked regularly, as this can be an area of concern and can lead to weight gain.


People are afflicted with or suffer from Down syndrome.  
Why can't we just say that they have Down syndrome?  It's a result of their genes.  I don't suffer from curly hair.  I'm not afflicted with shortness.  Those are just things that I have because of my genetics.  Sara has Down syndrome.  She doesn't suffer and she's not afflicted.


All people with Down syndrome are stubborn.
This might not be a myth.  I'm pretty convinced it's not.

Easter Happenings

I know that I owe my few loyal readers a real update.  Someday maybe I'll have time to sit down and write one.  I promise that the lack of updates are simply because we are crazy busy.  Sara is doing amazingly well (except for her current cold/ear infection/fever/general miserableness).

Here are some Easter pics to enjoy.  I'll throw some in from last at the end so you can see how much she's grown and changed in a year.

Unfortunately, we spent a good chunk of Saturday at the pediatrician's office.  The official diagnosis is an ear infection but I'm convinced there is more to it.  She's still running a fever and coughing.  Now the poor dear is starting to lose her voice.

She must have dyed eggs at school this year because she was definitely familiar with the process.  You could tell she wanted to enjoy it but just didn't feel well.  

This is what happened when we tried to dye eggs last year.  

She got a great Easter basket from our friend Jenny again this year.  Jenny picked great, thoughtful gifts for Sara that she, of course, loves.  It's so fun to open gifts with her.  She slowly opens each present and gets so excited over every single one.  She seemed confused that I didn't have any gifts so she gave me one of hers for each one she opened for herself.   She is genuinely surprised that all of these things are for her.  Me?  

She loved finding the eggs we dyed.  Her "hunting" skills have improved greatly in the last year.  I guess my hiding skills will have to be better next year.  

Since she isn't contagious anymore, we managed to get ourselves dressed up and headed to church.  (Pretty much all we've done this weekend.)  I can't believe how grown up she is getting.  

Last year's Easter outfit.  

Happy Easter from the Keller Family!  May your truly understand what Easter is all about---God's plan to save, redeem, and adopt us!  

Avon

I've been looking for ways to help adopting families since I completed my own adoption.  I love knitting and will keep doing so but it doesn't make a ton of money in the spring and summer.  So, I've decided to sell Avon online.  I have no interest in selling in person or going door-to-door.  I just want to organize online parties for adopting families.

My first family is Laurence's family.  The commission from any purchases made from my site during the month of April will go to his family.  You don't need a special code or anything.  Just make a purchase!

Laurence's family currently has a matching grant through a local church.  That means, my commission donation will be doubled!!  40 to 80% of the price of your purchase will end up going to help this family!!  And, you still get a great product.

Summer is coming.  We all need to stock up on sunblock and bug spray!

Please pass this link on to your friends and family.  Who doesn't want to help someone while buying things they already need?

www.youravon.com/adoption

Sometimes, You Need More Than Love

All you need is love

All you need is love

All you need is love, love, love

Love is all you need.  

Fun song and a sentiment that has caught on in the adoption world.  If you just have enough love, everything will be ok.  You fell in love with a picture and God calls us to take care of the orphans so you have to adopt this child immediately.

I see all the time that people say:  "I have enough money to raise a(nother) child.  I just don't have any money at all to contribute to my adoption."  "I can't get a loan and I don't have a credit card."  "I have no other way to get the money.  No one that will support me and no one I can borrow from."  "I don't have the time or energy to fund raise."   I have seen people literally "fund-raise" (usually beg) the entire $30,000 for their adoption.  I've seen it more than once.  It happens.

Now, before you lump me in with people that are against fund raising at all.  That isn't true.  I wrote a whole post about my fund raising philosophy.  I fund raised for my own adoption.  BUT, I also contributed about a third of the cost myself and only fund raised a third of the cost.  (The other third came from grants.)  

I'm not saying you have to have ten thousand in the bank to adopt.  I'm not saying you have to pay for the entire adoption yourself.  I am saying, that if your budget is so incredibly tight that you don't have ANY extra money from week to week, you probably don't have the money to raise an adopted child---especially one with special needs.  (And pretty much any child over the age of 2 that has been living in an orphanage is going to have some sort of special need--whether physical or emotional.)

Kids with special needs are expensive.  My daughter is very healthy.  She has Down syndrome but she does not have any of the physical ailments that go along with it (except for cataracts).  Even as a healthy child, I have spent hundreds if not over a thousand on her health care in the year she's been home (and I have pretty good insurance).  She has been to the cardiologist, the Down syndrome clinic, the dentist, the eye doctor numerous times, the hearing specialist, the eye surgeon, the pediatrician.  She has had x-rays, blood work, a karyotype, physicals, eye exams, hearing tests.  I have bought glasses for her.  I'm not listing those things to complain.  I am so grateful she's healthy.  I'm just trying to give you an idea of how quickly appointments and copays pile up.  (I also intentionally choose a child that did not have a heart defect and that seemed healthy.  I knew that as a single mother, I would be unable to take time off of work for open heart surgery and wasn't sure I'd be able to handle it emotionally either.)  

Most kids that are adopted internationally (with special needs) are not so healthy--especially if they have come from a neglectful orphanage or an institution.  Chances are good they have never had their teeth brushed.  They haven't had good nutrition.  They may be dehydrated.  Parasites are incredibly common.  The list goes on and on.  

Before you adopt that adorable child that so "needs to be rescued", you need to make sure that you have a plan in place to pay for that rescue and the redemption that follows.  You may see the adoption as the rescue but the years that follow are the redemption.  You will have to make up for years of neglect and lack of medical care.  Chances are very good that they will need to have dental work (and most dental insurances don't cover much).  It's almost a guarantee that they will need to see some sort of specialist at least for check ups if not regularly.  They may need therapies--physical and/or emotional.  All of these things cost money.  It's just the way our country works.  Medical care is expensive. And internationally adopted kids--especially those with special needs---need a lot of it!

So, if you don't have ANY money to contribute to your adoption, where in the world are you going to get the money for copays, surgeries, equipment and medicines? 

**I know that I probably have offended people at this point.  I'm not targeting any one family or situation.  I've just seen too many families come home and not have the money for the basic care that their children need.  It's the kids that suffer in this case and that just isn't right.  I thought the point of adoption ("rescue") was to give them what they couldn't get in their birth country?  

**There may not really be a correlation between people who "fund raise" for their entire adoption and those that don't have the money for basic care when their kids get home.  I haven't done a scientific study but it seems that way to me.  How frustrating for those that donated to your adoption to find out that you don't have enough money to care for your kids?  

Letters to My Daughter - My Heart for You

Mija,

Tonight, as I sat in your bed rocking you to sleep, I started praying for you.  This isn't something I do often enough but I poured out my heart in that quiet, dark, precious moment.  I prayed that you will be an over-comer.  That you will over come the first four years of your life.  That you will over come your rough start in school. Most of all, I prayed that you will over come your mommy's imperfections.  I mess up far more often than I'd like but I know that you are thriving in spite of my mistakes.

I am in awe of you and who you are.  When you fall asleep in my lap or when I check on you at night, I am in amazed that you are sleeping in my house.  That I have been entrusted with your little life.  I can't help but smile when I see your adorable little face in my rear view mirror.  Most of the time, it seems crazy to me that I have this little person in the back seat of my car and that I am responsible for that little person.  And, when you call my name or kiss my cheek, I often tear up because this amazing little person actually loves me and calls me mom.  Some days, I am overwhelmed by the responsibility.  Other days, I am in awe of the privilege that I have been given.

We've been together for a year now and I've seen so many changes in you.  You are talking and communicating so much.  I honestly think I hear a new word from you almost every day.  You are so proud to try out new words, signs, and sounds.  We both get frustrated when I don't understand you but you've come so far.

You have matured so much.  You are calmer and you can take a minute to listen before totally losing it.  Sometimes there are still some less-than-stellar moments but we are working through those together.  You want to do the right thing and you want to be good.  We haven't used the stroller in months.  You even managed to walk through the mall without too much trouble.

You love life.  There are still so many aspects of every day life that are new to you.  You've really enjoyed the snow this winter (until you get wet).  You love going new places and seeing new things.  You've gotten a little less sure about new people but you warm up quickly.

You are learning that you can't have everything.  While this might seem silly to include, it's such a huge thing.  You don't expect me to buy you something when we go to the store.  You can look at something and then put it back.  You don't expect anything from anyone, really.  So, when you get a special treat, you are so very grateful.

You are so determined and a great problem solver.  You want to do things for yourself and you want to help everyone you meet.  Sometimes you're problem solving skills border on manipulation but I know that your determination and creativity will take you so far.

Sara---I am so proud of the little girl that you are becoming.  Sometimes, it breaks my heart to see you growing up so quickly.  You are not the little toddler that I met a year ago.  You are a fiercely independent 5-year-old who doesn't always need her mom.  But, when you're tired, and you ask to be my baby, I will gladly rock you in my lap.  I promise you that I will hold you as long as you let me.  You can be my baby as long as you need because I will always be your mom.

Te Amo Mija,
Your Mom

February 2014

Valentine's Day - Last Year

Last year, on Valentine's Day, I was in Colombia. (Cause I was pretty much there forever.)  My friend Jason and his daughter Claudia left that afternoon.  They had pretty much been my life-line and my sanity.  They were my escape from the hotel and the hotel food.  They were my connection to home.  And they left me.  (I can't blame them but....)

Susan and her girls were at the hotel at the time but I knew they were just passing through.  They were a lot of fun but I knew that they, too, would be leaving as soon as they possibly could.

Since it was Valentine's Day, Susan and I went to the grocery store and found the closest thing to American candy we could find for the girls and threw a tiny, little party in her room.

Pretty much the cutest Valentine's dates ever!

In the middle of our little party, the hotel owner knocked on the door and told me that I had a phone call.  I knew that it was too late at night for "The Call" (the one saying the adoption decree is ready) so I was interested to see who it was.  (A secret admirer, perhaps?)  I picked up the phone and realized it was my amazing in-country rep.  The hotel owner had called her because she was worried that I was depressed and thought she might need to come cheer me up.

Our amazing in-country rep

Apparently, in their minds, Valentine's Day is a HUGE American holiday and I must have been so sad about missing it.  I had to try really hard not to laugh into the phone.  I was in a funk but it had nothing to do with Valentine's Day and everything to do with my friends leaving.  It took me quite a while to assure her that I was fine and not missing anything at home.

I'm not sure I've ever even celebrated Valentine's Day.  The one year that I was dating someone in February, he was at college in Ohio and I was student teaching in Costa Rica.  I've gone out with groups of girls to "celebrate" but that's about it.  It is certainly not a big holiday to me and I was kind of relieved to be so far away from it for once.

It goes to show, though, how kind and caring Colombians are.  Even if they are a bit misinformed.

This year, I'm spending Valentine's Day with the Love of My Life.  

Family Photo Shoot

My family does photos every five years.  It involves quite a bit of whining but we know that every 5 years we are getting them done.  I will admit to being a part of the whining but most of it comes from the male members of the family.  

It's fun to look at the photos because we've added someone to every picture.  We started in 1995.  The boys were so little then.  In 2000, we added my brother Rob.  In 2005, my sister-in-law Amy joined the group.  In 2010, my niece Grace made her first family photo appearance.

Our 2010 picture.  

Since 2010, we have added my niece Kinsley and Sara.  I wanted to do pictures again since they will all be so big in 2015 and there will be at least one more addition to the picture by then.  There were a couple of hold-outs of the male persuasion in the family and I hold no power to convince at least one of them.  So, we decided to do just the women this time around.  (Everyone will be in the 2015 picture.)

Sisters

Mother and daughters

All the women

Cousins - Take 1

Cousins - Take 2

Cousins - Take 3

Nana and her granddaughters