Friday, March 30, 2012

Forget Me Not Friday: Albina and Tabitha

Every week, every day, I think of her.  I wonder, is she warm enough?  Did she get enough to eat?  Does anyone hold her?  Sing to her?  Tell her that they love her?

She is beautiful, sweet, and precious.  Yet, she has no home.  No family.  In less than 2 years, she will most likely be transferred to a mental institution.

I pray daily that her forever family will find her.  I have no doubt that they will.  After all, how can a person's heart not melt when they see her face?

My dear, darling Tabitha, I will never stop advocating for you.






Finally, does anyone remember this sweet little girl?  It is Albina!  A Perfect Lily is doing a huge give away to help her forever family, the Jolly's, bring her home.  They are really struggling with fundraising and could use our help.  Details can be found here.  Hurry because the give away ends on Saturday 3/31.


Albina



Forget-Me-Not Friday is a blog host sponsored by Jane at Flight Platform Living with the goal of bringing about awareness of orphans with special needs in Eastern Europe.   To learn more about why this is such a cause close to my heart, please click here.



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Thursday, March 29, 2012

Boy with Ds inducted into the National Honors Society

I had written an article a while back for SpecialNeeds.com about having high expectations and pushing the limits.  Today I read a wonderful, inspiring story that reinforced my belief in expecting the best from our children whether they have 46 or 47 chromosomes.

John Marrs, a young man with Down syndrome, was recently inducted into the National Honors Society at his highs school.  For those of you who have heard of the NHS or were perhaps even members know what an amazing achievement this is.  Can I hear a "whoot whoot"?!  Congratulations John!!!!

John Marrs Inducted into Honors Society

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Wednesday, March 28, 2012

Being Good Enough


The desire to be perfect is a common want.  The desire to be a perfect mother is so coveted.  Yet, we have all heard that we cannot be perfect, but we can be good enough.  However, I am often stressed and frazzled and left wondering "am I good enough?".



I want what is best for my child and imagine that what is best for Ellie is not always what is best for everyone else's child.  I am sure that is even true among siblings as each child is uniquely different.  The question is "how do I know what is best for Ellie?". It is that question that plagues me.  That leaves me spending large amounts of my free time researching.  Researching and worrying.



There is no joy in worrying.  It eats away at the soul and steals time away from your loved ones.  It robs you of your sleep.  It sucks the happiness out of your down time.

It is not productive to fixate on the things that cannot be changed.



Here is what I do know, my husband and I try to provide the appropriate therapies to help Ellie succeed.  We are trying to keep her socially engaged while providing her with "down time".  We obviously feed her, clothe her, and give her shelter.  Most importantly, we shower her with love and Ellie knows that she is loved by us.  I am going to try to take a step back from my incessant worrying and enjoy today because all of what I just wrote says that I am good enough.



What sorts of things do you worry about while parenting?

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Monday, March 26, 2012

11 Random Things: Part 1

My cyber friend, Andi at Bringing the Sunshine recently tagged me in 11 things blog meme.  I tend to become a bit nervous about these types of posts because rather than writing about my Ellie, I am forced to write about myself.  Fortunately, this meme's only requires random tidbits that will help readers learn more about the writer (in this case, me) behind the blog.  Because I will be tagging 11 fellow bloggers at the end of this post, I will get a chance to discover all sorts of juicy information about those who blogs I religiously stalk read.

The Rules

1) Post these rules.
2) Post 11 random things about yourself.
3) Answer the questions set for you in the post of those who tagged you.
4) Create 11 new questions for the people you tag to answer.
5) Go to their blog (or email them or tweet them) and tell the people you tagged that you’ve tagged them.
6) No stuff in the tagging section about “you are tagged if you are reading this.” You legitimately have to tag 11 people.
Today is Part 1 in a two part series.  I will answer the questions selected by Andi in Part 2 next week as well as post my questions for my blogging buddies.

11 Random Things About Me

1) If I listened to the movie "He's Just Not That Into You", I would not be married to Andrew.

Andrew was a groomsman and I was a bridesmaid in my friend's wedding.  We exchanged 4 sentences and then he and the other groomsmen ran off to watch a manly movie that probably involved fart jokes and hot chicks while I snuck into the bar area to catch the World Series score.  Fast forward approximately one year later.  My friends were living with Andrew and I went to visit.  Oh yes, I totally shacked up in Andrew's house pre-marriage.  The whole visit he didn't even try to make a move.  I would like to think I was irresistible, but alas, I was/am not.  Sigh.  I asked for his number.  I asked for his email.  I ignored all his signals, or lack thereof and pursued this little stud muffin.





2) Banned, from PetsMart.  Without Andrew, I would be in serious risk of becoming "the crazy cat lady".

After returning from our honeymoon, I stopped by PetsMart to pick up kitty litter and dog food.  I walked out with litter, food, and Amelie.  






3) Ellie is our one and only child.

This is for all of you who ask when we are having our next child.  We are not.  Andrew and I planned, strategically of course, to have one child early in our marriage and one child only.  We wanted to maximize spoiling the little Theurer.  We discussed the adoption of Tabitha and started the complicated process, but unfortunately discovered that adoption is not meant to be.  





4) I wore a uniform for most of my life.

Being raised by the Sisters of Carondelet means one thing.  Plaid.  For 13 years, I wore the Catholic school girl uniform.  No, I did not look like Britney Spears.   Our skirts could only be an inch or something above the knee. Then I decided to be a nurse.  That meant busting out of the dorm in a very stylish white pants-white shirt-white shoes ensemble at the crack of dawn.  Finally, I graduated to scrubs.  Now, I wear the requisite "mom" uniform--comfy clothing with snot, food, and spit up as accessories.

I absolutely looked like this.



5)  I know how to analyze blood spatter.

During graduate school, I took multiple forensic nursing courses.  I am actually one credit shy of a minor--the clinical portion.  I can analyze blood spatter (i.e. arterial sprays, transfer, low velocity spatter, etc), gun shot wounds, and knife wounds.



6) During part of college, I live in Oaxaca, Mexico and yet, I barely speak Spanish.

I can barely speak Spanish because I no longer use it.  The longer you go without speaking a foreign language, the more words and conjugations you forget.  Oaxaca, by the way, is gorgeous and they are really not used to redheads with green eyes.  Buses would stop for me, baby.



7) Driving cross country is hobby of mine.

I grew up in St. Louis.  I moved to Philadelphia for college.  Afterwards, I moved to Portland, Oregon.  Then I moved to New Jersey.  Finally, I made Austin, Texas my home because I thought it would be important to live in the same zip code as my husband.  Do you have any idea how many miles I put on my car from all of those moves?   Did I mention that I camped almost the entire 3,000 miles between Portland and NJ?



8) I once thought that I would minor in ballet.

In Kindergarten, I started ballet lessons and continued to participate in this awesome sport throughout high school.  I am klutzy, but I could easily balance on point.  I am not graceful.  I am not coordinated, but I loved ballet.  I knew that I was not good enough to make a career out of my passion, but I thought a minor would suffice.  However, the college that I attended did not offer ballet classes.

Little Miss Tutu: Perhaps Ellie will study ballet. 


9) I learned how to play guitar by an awesome teacher named Duke.

I don't remember anything except a "C" chord.  Duke, is awesome.  He has a guitar with a jungle scene painted on it.



10) I know the names of plaid.  Yes, plaids have names.

As though wearing a school uniform for 13 years wasn't enough, I worked in a school uniform store.  I learned the names of the plaids for each school in St. Louis and parts of Illinois.  Garfield.  Blackwatch. Gordon. . .

Only Gerard Butler could pull off plaid (and pink).  Sigh.



11) My family and I have camped in nearly every state and yet Andrew does not camp.

When I say camp, I mean tent camp.  None of this wimpy cabin nonsense.  Although cabins are really nice.  Hum. . . maybe Andrew will cabin camp.

Big Bend National Park




Tag, You're It!

I wanted to tag everyone in my blogroll, but that would add up to way more than 11.  Therefore, I tagged people that I thought might play along and that I wanted to know more about.  

2. krlr at Trial Run
5. Penny at Penny's Peeps
6. Becca at The Bates Motel
7. Meriah at With A Little Moxie
8. Ilisa at Ailts Family
9. teal915 at Life is Beautiful


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Saturday, March 24, 2012

The Turtle Sandbox

Back in mid-February, I wrote about how sand provides great sensory input and then said we were getting Ellie a turtle sandbox.  Over a month later, I am happy to report that we finally got around to getting the sandbox. . .




Then getting the actual sand. . .


The reason the lid to the sandbox is propped up is because we are trying to block the sun.  We are too cheap/lazy to buy an umbrella so we had to get innovative. 



Then getting some sandbox essentials (shovel and bucket courtesy of a kid's birthday party favor) . . .




Hey, it only took us a little over a month.  Right now, Mr. Hotty DIY is working on framing the windows in our kitchen.  These would be the windows that we (aka Andrew) installed during our DIY kitchen remodel back in 2007.


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Thursday, March 22, 2012

Ellie's Best Friend

Sheryl and I met in our church mom's group back when Jack was 6 months-old and Ellie just entered the world.  I had just received Ellie's diagnosis of Down syndrome and Jack was just diagnosed with infantile spasms and later tuberous sclerosis. When Ellie decided to make mealtimes challenging by having an oat allergy, little Jack started a ketogenic diet to control his seizures.  Different medical issues with different challenges, but somewhat similar journeys in navigating the special needs world.

Jack is Ellie's best friend.   She mostly ignores all of the other kiddos in playgroup, but she follows Jack around like a little puppy.  She wants to doing what he is doing.  Play with what he is playing with.  Jack is my little buddy who is always ready to give me a much needed snuggle.



Please visit Sheryl's blog Thumb In Mouth to read her special post about friendship and World Down Syndrome Day.  Be sure to have tissues handy by the time you get to the last sentence because her final words had me sobbing.  Check our her blog to learn more about Jack, Tuberous Sclerosis, and The Ketogenic diet.

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Tuesday, March 20, 2012

World Down Syndrome Day 3.21




March 21st has always been a very special day for me.  It was the day that my brother entered the world and attempted to make my childhood full of sibling rivalry and love.  He was my playmate and is now one of my closest friends. Evening more meaning was added to the date March 21st when Ellie was born.  March 21st is recognized as World Down Syndrome Day.  A day chosen because it represents the three copies of the 21st chromosome.  Get it?  3-21!

My brother Matt when Ellie was just 3 months old.


This year is even more exciting.  This is the first year that the United Nations is recognizing today as World Down Syndrome Day.  Seven years ago, our communities started celebrating today and now, it is officially recognized by the UN.  Not that we really needed the UN to approve this day or anything, but it is lovely to have such recognition.

Andrew and Ellie: Buddy Walk 10/11
For our community, this day is about unity.  About all of us coming together to celebrate our children, our siblings, our aunts or uncles who all carry that extra special chromosome.  It is also about education.  About teaching others that we are more alike than different and that all life is precious, no matter how much genetic material a person carries.  I love seeing not just our local or national communities coming together, but the entire world.  So many countries uniting. All of us showing the world that people with Down syndrome are loved by their parents, by their siblings, by their friends.  That people with Down syndrome have meaningful lives and are contributing members to society.   Down syndrome is not something to fear.

Three Generations: Grandma Awa, Ellie, and Anna


I love the first video because it features children with Ds from countries I never even heard of (yes, I clearly need a social studies and geography lesson). It is beautiful to see these children in the classroom.  Learning.  With other children.

The second video is unique in that it shows the parents of children with Ds.  Parents with inspiring messages.  What would they would go back and say to themselves when they first learned of their child's diagnosis.  I especially like the one that says "Normal is a setting on a washing machine".  So true!

Going back 2.5 years ago, what would I say to myself?  "There is no such thing as normal, but there is amazing.  My daughter is amazing and perfect.  It will be okay.  For she and you are stronger than you think."



From my family to yours, wherever you may be: Happy World Down Syndrome Day!

http://www.worlddownsyndromeday.org/


Down Syndrome Map: Let Us In-I Want to Learn
2+1 = 3






IDSC for Life: All Life Is Precious

What would you say to yourself if you could go back?


Link up your blog at My Stubborn Little Miss or at With A Little Moxie.


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Monday, March 19, 2012

Sensory Integration: desensitizing for bath time

If Ellie were a Disney Princess, she would be Ariel from The Little Mermaid because like the redheaded mermaid, she did not want to be "under the sea".  From birth, the Princess toddler was adamant that bath time was the worse sort of punishment imaginable.  Ever hear a banshee scream?  Come to our house at bath time. Want to watch a toddler do death defying acts in a bathtub?  Again, visit our house.



It has taken us over two years, but we have finally made it.  Ellie loves bath time!  I know that you probably don't give a whole hill of beans about this, but let me tell you, this is a HUGE milestone in the Ellie Bellie Bear household.

My dear daughter is typically a sensory seeker.  She craves motion and often satisfies those needs by running, climbing, swinging, and by pushing ridiculously heavy objects that even I have difficulty moving.  She is an oral craver.  There is almost always something in her mouth.  Hum. . . perhaps this is affecting her ability to speak?

However, in her sensory processing disorder world, she is an avoider in one area--her head.  Mostly with water to be exact.  She hates water on her head.  I take you back to this:

This is before she turned a lovely shade of eggplant from screaming.
Look at those rolls of fat!  Chunks!  


and this:

I thought the Duck was working (see left), but it didn't last long (see right).


The Bear screams like a full-grown banshee when water comes into contact with her head.  I was petrified to give her a bath.  I mean, kids don't really need baths, right?  They don't get that dirty.  After much brainstorming and many experiments, we are finally able to give Ellie a bath without Andrew thinking I am performing cruel acts of torture.  Let me tell you, it was so bad that I had to give baths without Andrew in the house.

Yeah, toddlers never get messy.  (truth: we actually hosed her down in the backyard first)

How did we get here?  It was a very slow and painstaking process.  We desensitized her.  Each solution would work for about 2 weeks before the novelty would wear off and the screeching began again.  As she aged (yes, I know that 2 years-old is just ancient), bath time became more and more dangerous because not only was she slippery wet and squirmy, she was also mobile and would try to escape.  I feared that I would be explaining to the ER just how my kid ended up with a concussion.




de·sen·si·tize
  (d-sns-tz
tr.v. de·sen·si·tizedde·sen·si·tiz·ingde·sen·si·tiz·es
1. To render insensitive or less sensitive.
2. Immunology To make (an individual) nonreactive or insensitive to an antigen.
3. To make emotionally insensitive or unresponsive, as by long exposure or repeated shocks: "This movie in effect may resensitize people who thought they were desensitized to violence" (Steven Spielberg).
4. To make (a photographic film or substance) less sensitive to light.


Desensitization Therapy is a type of behavior therapy with a goal of reducing a person's emotional reaction (i.e. fear, anxiety, guilt) to a phobia by gently and gradually introducing the person to said phobia.

With the input of Ellie's early childhood therapist, some opinions of other mama bears, and creative thinking on my part, we were able make Ellie less sensitive to bath time.

Here is how we desensitized Ellie:
  • Tried to make the bathtub smaller and more cushioned--the inflatable duck bath.  
  • Lining the tub with towels to provide a cushion and sensory input on her bottom and legs (really hoping that this would distract her from her head getting wet.  Yeah, totally did not work and was a real pain.  I loathe washing towels)
  • Me hanging out in the bathtub with her
  • Holding Ellie in the shower with me
  • Going to the sprinkler park during the summer
  • Letting Ellie sit at the bottom of the tub while I showered
  • Letting Ellie sit at the bottom of the shower with me supervising outside of the tub
  • Letting the tub fill up with water while I took a shower with her
  • Sitting in a tub full of water, no shower, no mommy in the tub--success!
Another step that we implemented was using a detachable shower head with different settings.  We got ours at a great price at Costco and it was easy to install.  I have experimented with different sprays and pressures and I have found one that Ellie will somewhat tolerate.

It has been a few months and the Bear signs "bath", runs to the bathroom, and will climb into the bath fully clothed (yes, she is that excited). She enjoys playing with her toys and dumping water over her head (think of it as rinsing her own hair).




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Friday, March 16, 2012

Forget Me Not Friday: Wyatt


Oh my sweet boy.  Wyatt has not had it easy.  On top of developmental delays related to Down syndrome, he also has hydrocephalus and possible cystic fibrosis.  Wyatt really is not doing well at all and needs our prayers.  I have high hopes, that with a loving family and proper medical care, Wyatt will thrive.  

Wyatt 26HA

gpr3-26HA
Boy, born February 2009
Eyes: Gray
Hair: blond
Nature: Quiet

Update Sept 2011:  Our little Wyatt is not doing well.   He is described as a recumbent patient.  Along with his Down syndrome, he has hydrocephalus and can hardly move his hands.  
Update Jan 2012:  Wyatt also has possible Cystic Fibrosis and is fed through a tube.
Please let's rally for Wyatt and get him into a family who can save his life!! 

$3792.50 is available towards the cost of my adoption!


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2.9 Million Dollars and Suing God

Our Down syndrome community is in an uproar.  A huge uproar.  We are saddened and disgusted.  We are sad because it has happened before and it will happen again.  Our heart aches for the little girl involved.  For the little girl who will grow up and learn that her parents would have killed her in utero.  Our heart aches for her older brothers for goodness knows what they have learned from this.

Last Friday, March 9th, a jury reached a verdict and nearly 3 million dollars were awarded to a couple for a wrongful birth.  The wrongful birth of their daughter who has Down syndrome.  They sued the doctor and the lab techs who failed to diagnose their daughter prenatally in spite of a CVS.  Their reasoning--had they known that their unborn daughter was disabled, they would have aborted her.  These parents saw dollar signs.  They sued and they won.  Here is the whole story.

I loved her the moment I saw her.


There are so many things I want to say.  So many feelings floating around.  You see, I did not know until Ellie was born that she carried a little something extra.  I love my daughter with every single ounce of my being.  Was I shocked?  Yes. What I saying "Why God?"  Yes.  Yet the idea that I should sue never crossed my mind.   Do I honestly believe that this money awarded to these parents will entirely be used for their daughter's medical care?  No, I do not.  If her parents truly did not want their daughter, they could have put her up for adoption where are loving family would rejoice at having her in their lives.  Did you know that there is ~ 3 year waiting list for parents to adopt children with Ds?



As much I want to write about this, I know that I cannot describe my feelings as well as Deanna J. Smith at Everything And Nothing From Essex.  Please read her post "Perhaps You Should Sue God".

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