I have no idea what I am doing: fostering independence

I really wish that parenthood came with an instruction manual.  Only modify that manual to be about special needs parenting and have it contain the knowledge and wisdom of a parents, teachers, psychiatrists, occupational therapists, speech therapists, patient advocates, and well, everyone!

All children are unique individuals with their own strengths and struggles so really you cannot lump them all into one group, but I do wish that I had some guidance.  I honestly have no idea what I am doing here when it comes to teaching Ellie life skills.  Am I doing too much for her and holding her back?  Or are my expectations too high?

My goal, like most parents, is to help my child to be come self sufficient.  She already is and will be capable of a great many things and while I am not under the delusion that Ellie will grow up, move across the country and live 100% independently without any supervision, I do want to foster her independence as much as possible.  What that will look like in the future -whether she lives in a nearby apartment nearby with someone checking in on her vs. a group home vs. living with us, I do not know. The thing is, I have absolutely not idea how to identify and teach her the necessary life skills to set her up for success.

Right now, I have the following short-term goals in mind:

A. Be able to make her own "meals" (a Nutella sandwich is a meal - don't judge!)

1. Able to remove bread from package
2. Open/close the Nutella jar (she's getting there!)
3. Properly hold knife to remove Nutella from jar and spread onto bread
4. Be able to open a package of food (i.e. remove the wrapper from a nutrition bar)
5. Be able to unscrew the top to her supplemental nutritional shake

B.  Get this kiddo poop trained!

• First and foremost,  this is out of my control and Ellie's control given her complex GI history and colon situation, but it is a goal nonetheless.

C. Able to change her bedding and put her clean laundry in the correct drawers

• Bonus points for folding.

D. Drink from an open cup with all of the contents ending up on the floor or herself.

E. Understand the concept of time.

• Ellie can read both an analog and digital clock to the 1/2 hour mark, but she doesn't really under the concept of time.  For instance, if I were to say that Kyla comes at 4:00, she does not understand that.  If I say you've got 5 more minutes, she only seems to grasp it if I set a timer.

Sounds easy, right?  It isn't.  I have a 10 year-old daughter who thinks like a 4 year-old with the fine motor skills and receptive language understanding of a 3 year-old.  Are the goals that I have set for her appropriate for her developmental level?  Am I pushing her too much or not enough? I feel like a horrible parent when I think it would be so much easier and faster to just do it for her (obviously, I am trying to avoid the "just doing it for her").

Oh and by the way, do not google "how to use a knife" or you will get some weird and disturbing results.

This brings me to changing my mindset.  Rather than focusing and lamenting about what she can't do (yet), instead let's celebrate what she can do all while trying to figure out how to give her the tools the she needs to succeed. . . . once I figure out what those tools are, that is.

After all, she has already attained several life skills in the past few years and I know that she will continue to gain more!

What she has already accomplished:

• Laundry -  This kiddo has been using the washing machine with minimal assistance for years now.  I need to work on the whole folding clothes and sorting thing.  Also, I need to keep reminding her that if she is going to wash a lovey, she should wash her other dirty clothes at the same time.  As in, do not do an entire wash cycle for 1 blankie!
• Cleans house - dust, wipes counters, sweeps/mops floor
• Orders food at a restaurant - this is where her speech device comes in handy
• Swallow pills
• Administer her inhaler with assistance
• Makes her enema for her cecostomy tube
• Differentiates between trash and recycling (can someone educate my husband that cardboard can be recycled and styrofoam cannot?)
• Able to get dressed, including socks and shoes
• Able to put on jacket and pull up zipper
• Uses a key to unlock doors - while this is good, it also means she is now able to get into my office!
• Packs her lunch - granted her idea of a lunch includes  an entire bag of grapes, a bag of baby carrots and an unwrapped zone bar, but at least she didn't forget the ice pack!

So. . . if anyone has that special needs parenting instruction manual please send it on over to me!

October is Down Syndrome Awareness Month: The Many Faces of Down Syndrome

October is Down Syndrome Awareness month and to celebrate, I'd like to introduce you to some of the members of this amazing community that I became a part of when Ellie was born with Ds. While all people with Down syndrome carry 3 copies of the 21st chromosome and share some facial features, they are all unique individuals just like everyone else.  They look like their family members and they have their own interests and strengths.  

Wyatt is 10 years old. He loves his big brothers, walking on the beach, reading, superheroes and playmobil!

Camryn goes by Cammie and is 8 years-old.  She loves the dirt, rocks, popsicles, swinging, and sliding. She is all and all full of energy, happiness, and love.

Hannah is 18, a senior in high school. Hannah loves singing, dancing and drama. Plus bowling and tennis. We have just been given the exciting news that Hannah is on the Homecoming court!

Ishika Pande is 10 years old and she loves dancing . Isla is learning an advanced level of Indian classical dance and has had more than 20 performances on stage solo and group from age of 6 . Other than that she loves talking a lot , cooking her own recipes and dressing up.

Ian is 9 years old. He loves school ,swimming, and the park. Ian is quite the social butterfly!

Kayla is 16 years old and loves archery, golf, baseball, swimming, coloring, dancing, and her younger brother!

Ruby is 8 years-old.  She loves dancing, her pet dogs, and slushees!

Amber is 9 years-old and she loves swimming.  

She has the nickname of AwesomeAmberSkye!

Alex is a 24 year-old senior in the MasonLife program at George Mason University. He likes sports especially swimming and basketball. He likes hanging out with his friends, playing video games, going movies and going to parties or just grabbing a couple of beers and watching football on the weekends.

Avery is 12 years-old. She loves school, basketball, swimming and cheerleading.

Julian is 9 years old and he loves to color, draw, and read.  

He enjoys gymnastics, dance, swim, and making silly jokes.

Cora is 8 years-old. She loves puzzles, music, and reading.

Ellyssandra Corinne aka Sissy is 8 year-old baby B of surviving triplets. Elly loves music to dance and singing and signing her favorite song. She loves Moana and Mary Poppins and swimming and running. Elly loves hanging with her animals her dogs Billy (which was Elly's first word) and Daisy. Elly is good friend and happy girl ahe has enriched our lives and taught us so much. Mommy and daddy and big brother Jorge Jr. ^^8^^ and your little brother Rory couldn't be prouder of you Sissy. 💙💖💙Triplets Forever

Benji is 9 years-old and loves playing with his siblings.  

He loves books, music, and nerf guns.

This is Ellie aka Ellie Bellie Bear aka Princess Twinkletoes and she is 10 years-old.  She fancies herself to be a singer and fashionista.  She loves to dance, swim, and ride horses.

12/27/1958 - 12/14/2012

This blog post is in loving memory of my Aunt Peggy.  Peggy loved bowling, swimming, and listening to John Denver.  She passed away just a few days before her 54th birthday in 2012.  She was a beloved daughter, sister, aunt, and great aunt.  Peggy, you are forever loved and forever missed.

A message from The Ellie Bear

I

am

coming

to 

get

you!

Next Month is Down Syndrome Awareness month and I hope to have a special post for y'all.  I also seem to have 3 unpublished blog posts that I never got around to finishing.  Just a lot of thoughts rolling around in my head and I'm having trouble getting them to paper/computer as well as the usual medical nonsense that Ellie must endure. *notice my husband's face in that last pic?  Yep, he wasn't entertained by our antics! *

Happy 10th Birthday, Ellie Bear!

Ten Years ago today. . . .

Ellie Marie Theurer

6 lb 10 oz

19.25 inches

Nickname: Ellie Bear; Chunky Chicken

Favorite past-time: sleeping 

Favorite food: formula

Favorite person: Daddy 

Favorite Book: Snuggle Puppy by Sandra Boyton

Favorite Song: Personal Penguin (from a book by Sandra Boyton)

Favorite TV show: Criminal Minds. . . wait, that was my favorite show to watch while I was feeding her

Today . . . Age 10

Ellie Marie Theurer

Nicknames:  Ellie Bear, Princess Twinkletoes, Turkey Bear, Stinker Butt, Miss Sassy-Pants

Grade in school: 4th grade

Favorite food: Nutella

Favorite past-time: playing with Barbies and coloring

Favorite activities: dancing, swimming, and horse back riding

Favorite people (in order of importance): Daddy, Kyla, Baba, Dr. Simon, Dr. Rangwalla, Dr. Rosenbloom, Dr. McQuiston, Mama, Grant, Grace, and Jack

Favorite Books: Pete the Cat books and Brown Bear, Brown Bear What Do You See?

Favorite Song: Don't Cry by Guns N Roses

Favorite TV show: Mickey Mouse

A Few Highlights

Irvine Park in California

Seal Beach, CA

CAMP Camp

Spring Break in St. Louis, MO

A rather unfortunate hospital stay

Attending a Kidz Bop concert

Braids!

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Immunology and Vacation

We are back!  We had a lovely time in Seal Beach, CA and some nice visits with Andrew's dad and wife.  It had been 5 years since Ellie had seen them and she was just thrilled to see her Papa.  We tried to stay pretty busy and enjoy the gorgeous 80 degree weather which was a good 20 degrees cooler than scorching Austin.

The first day we went to the beach, but we stayed in the way back so she couldn't see in the ocean and want to go swimming.  She also spent time on the playground right on the beach, swinging to her heart's content.

So Disneyland.  It was an adventure and the first time that Ellie and I have ever been to any type of Disney resort.

We made the mistake of waiting in line for 45 minutes to get a disability pass.  A disability pass allows wait to go on a ride without waiting in the line.  For instance, say the wait is 40 minutes, you can go do something else and come back 40 minutes later to get right on the ride.  We did this specifically for Dumbo.  Ellie did not want to ride Dumbo.  Instead she wanted to ride the King Triton Carousel and the Circus Train a gazillion times. The wait times were not too long which was great for someone who has meltdowns, but we learned halfway through our visit that we didn't really need to wait at all or use the disability pass.  Ellie's stroller is actually a wheelchair.  That gives us access to the disability line and allowed us to hop right on the carousel and trains.  Apparently, this is for all the smaller rides.  The bigger ones, you have to have the disability pass.

Unfortunately, Ellie did not get to meet Mickey Mouse.  I am pretty bummed because I think she would have peed her pants with excitement.  She was pretty tired by the time we wanted to go to Mickey Toon Town I saw on the app that the wait was 35 minutes. You cannot use the disability pass or Fast Pass for any of the characters.  Andrew and I knew that there was no way she could wait that long. So yes, we went to Disney for a whopping 2 rides, but I am still glad we went.

Convaid Scout Wheelchair.  Goes up to 100lb.  Ellie's is purple.  Our insurance paid for it because 1. Ellie cannot walk long distances and 2. because she is a runner which is a safety concern.  

The following day, we went to this fancy smancy mall the size of a small town with stores like Dior, Armani, Michael Kors, etc. for the sole purpose of riding their carousel.  Can you tell that Bear loves the carousel?  She went on it 6 times and had a blast.

On our last day, we went to the beach up near the ocean.  That was a colossal mistake.  At first, Ellie Bear was quite content to play in the sand.  Then she realized that she was right by a lot of water and wanted to go swimming.  She didn't understand that, as per Infectious Disease, she could not swim in the ocean due to her cecostomy tube and possible immunodeficiency.  We ended heading back to the hotel room and used their swimming pool.  Ellie's idea of swimming is sitting on the edge and kicking her legs in the water.

A few hours after going to the beach, we get the call from Infectious Disease.  Her labs came back in early.  Great news! Her labs are mostly normal, well normal for Ellie (her CD19 B cell Lymphocytes [a type of white blood cells] are always a bit low).  That means she does not need IV immunogammaglobulin therapy!!!  So. . . she could have swam in the ocean.

On a side note, shortly after entering Disneyland, I managed to throw out my mid-back.  That area of the spine just below the shoulder blades.  It happened while I was transferring Ellie from her wheelchair to the toilet.  I started to get better and threw it out again on the way home due to trying to maneuver Ellie onto the toilet in the airplane bathroom.

The next two weeks are jam packed with doctors' appts - we now only have 4 since ID canceled- and back to school stuff.  Today, we see ophthalmology which should be fun because I have to tell the doc that Ellie still won't wear her glasses even with the atropine drops in her good eye.  Last visit, she said if this doesn't work, we will have to patch the good eye.  Riiiggggghhhhhtttt.  Because this stubborn child is going to leave a patch on.  Thursday is ENT and I am expecting that to be routine.  Yes, a routine appt!!! Next week is GI.  We plan to take her off the Protonix for reflux.  I am not sure that is going to happen seeing as about 30% of the time post enema, she throws up. This is new in the past 1.5 months.  She also had one day where she threw up twice for no obvious reason and then puked all over her iPad while in Seal Beach.  Next Friday is our new patient appt. with the Comprehensive Care Clinic. We have been waiting months for this appointment.  I am told that the office visit will be about 2-3 hours.  It should be fun.  This doctor will become Ellie's new pediatrician seeing as our really awesome, amazing, fabulous current one is no longer in our insurance plan.  Dr. B at the CCC, coincidentally, was Ellie's first GI specialist during the first 2 years of her life.  I am hoping that we can have a few playdates and make it to the neighborhood pool since Bear Bear needs to have some fun in her life..

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