A few bumps in the road, pneumonia, creative communication

*I apologize in advance for some missing photos - I used Photobucket for free as a means to store my photos and they are now holding a few hundred pics of mine for hostage unless I pay for an expensive plan and I also managed to lose half my photos from my computer*

Two weeks ago today, my little Bear had her upper airway craved out like a little jack--lantern.  Okay, she had her tonsils and adenoids removed and it was rough.  Rough!  I had naively imagined that my little girl would be like her little friends and bounce back in a few days. So much so that I actually created lesson plans to work on with Ellie during the 2 weeks she would be missing school.  Needless to say I did not crack open those beautiful file-folders even once.

We avoided the hospital and the ER--two big successes in my opinion.  For just after Bear lost the scabs from her throat and screamed from immense pain for a few days, she started to perk up.

And then got. . .

Pneumonia

Photo Courtesy of Mayo Clinic

I kid you not.  It is common for a child to still snore for a bit after her T&A surgery.  The uvula and base of the tongue are still slightly swollen and there is snot.  Lots of snot.  Think buckets of thick, nasty snot.  And thick, stretchy saliva.

On the 7th night post-op, Ellie was snoring loud enough to rival her daddy, but it sounded different.  I am not one to high tail it to the pedi for every little sniffle, cough, or fever, but it sounded "off" to this worrywart mama bear.  My stethoscope had a crack in the tubing so I couldn't hear anything but turbulence.  Plus, she is my kid.  I don't diagnosis or treat my kid (okay, that is a lie).  I took her in and guess what--crackles and rhonchi in the right middle and lower lobe and the left lower lobe.  Poor air movement.  Possible mucus plugs.  A questionable oxygen saturation (more like someone kept yanking it off before we could get a pretty wave pattern).

I was told that if I had waited another 2-4 days it would have been bad.  I should also mention that she was already taking Omnicef as a post-op precaution so I wasn't really holding out a lot of hope for the Augmentin to work.  Thankfully, it did seem to battle the pneumonia.

The Donut Sandwich.

Because I took her to the pedi, I learned that Ellie dropped two pounds.  I wish I could drop 2 pounds.  Or fifteen.  Anyway, this was clearly the result of not eating.  Every day Andrew would bring home donuts hoping to coax Ellie into eating.  Bear would grabbed a beautiful, delectable, chocolate-frosted ring of fried dough, take one bite out of the frosting, and then just hold the donut.  Cradle it like a baby.  Not eat it.  Eventually, I would eat it.  I gained more than 2 lbs.

Now the not-so-chunky chicken is feeling better and she believes we have donuts.  All. the. time. Daily, I show her that there is no hidden box of donuts in the pantry, fridge, or freezer.  Still, she frantically signs for them and then signs "car".  As in "mama, you will get me a donuts.  in fact, you will drive to the donut place and give me a donut.  i demand a donut.  the Bear wants donuts!"

The thing is, I didn't know she was signing for donuts for a couple of days which meant we had quite a few meltdowns.

Sign for sandwich

Ellie's sign for "donut"

Mama Bear down!

By day 11, Ellie was feeling pretty good.  Well enough to want to do something besides laying around or watching TV.  However, I was sick!  This Mama Bear has an awesome immune system.  I rarely get sick, but of course it happens on a day Andrew is at work and a day when Ellie is in hyper-Bear-mode and not at school.  I blame Texas for my illness.  I think virus and bacteria love this roller-coaster of temperatures--50s one day and 90s the next.  Even the mosquitoes think it is a grand ole party.  It is like one large petri dish over here.  I am going to move.  Somewhere cold.  Like Greenland.

I did find time to give her a haircut.

The Augmentin Rash

Oh so you thought the tonsils and adenoid saga was over?  Not so!  Remember the pneumonia?  The antibiotic got switched to Augmentin.  A drug she has never been on.  Right now I am warring between blaming the sunscreen or the Augmentin.  We haven't used the sunscreen since that Sunday and I have continued to Augmentin. The rash is getting worse and not better so I am not holding out a lot of hope here.


Here is another entertaining sleep picture:

I hope to be back to our regularly scheduled programming soon.  Until then, be sure to tell Jon Stewart and Comedy Central what an a** he is. . . er I mean ignorant, insensitive little prick man he is.  While I understand he thoughts on Congress, the use of the word f@#ktard is no different than saying r*tard in my book.  #stopdisablityslurs

I do not understand: Who Qualifies for Civil Rights?

The Austin, Texas headline reads Civil Rights Lawyer Questioning APD Mental Health Training.

It goes like this:

Austin Police respond to call about a disturbance involving a man, Herbert Babelay, who has a mental illness. According to the police chief when the 911 call came in, the caller, Babelay's roommate, said Herbert Babelay "has firearms and threatened to kill himself and others."

When Babelay pulled his long rifle gun onto the responding police officers, he was shot and killed by an officer.

Babelay had threaten to kill others.

Babelay pulled a gun on an officer.

Babelay was shot by an on-duty, full uniformed, police officer.

Babelay was mentally ill.

An independent investigation will be conducted to look at how police handle mental health calls with the argument that the police officers should have waited for a mental health officer to arrive.

Police chief Acevado sees no problem with an independent investigation into the incident.

This all happened in matter of days.

______________

The MyFox DC headline reads Man with Down syndrome who died in custody had heart problem

Three months ago in Frederick, Maryland.

A young 26 year-old man, Ethan Saylor refuses to leave movie theater after watching Zero Dark Thirty.  Saylor was not armed.  Saylor was not threatening to harm others.  Saylor had no weapon.

A theater worker calls security from a nearby store.  Security members are actually un-uniformed, off-duty police officers moonlighting.

Saylor is suffocated to death during the arrest by off-duty officers.  Suffocated while being hog-tied with his face mushed into the floor for "1-2 minutes".

Saylor had Down syndrome.

There is no independent investigation conducted by an outside consultant.

We have been fighting for an independent investigation.

It has been 3 months.



What is wrong with this picture?  I do not understand.  Where is the #justiceforethan?  Why has there been no independent investigation?  Shouldn't we all have civil rights?

Sign the petition and spread the word.

Change.org Petition

The White House Petition


Want to do more?  Ways to Help *note: we have been doing Twitter Rallies every Thursday at 8pm CST*

This post is part of a Blog Symposium brought to you by:

Down Syndrome Uprising

Add your Advocacy post now!

A somewhat rough recovery: s/p tonsil-and-adenoidectomy

I shall not keep you in suspense.  No, we have not needed to take the Bear to the ER status post tonsillectomy, adenoidectomy, and ear tube insertion. . . but we have come very close as a certain little Ellie Bear does not want to consume her fluids.  Or take her medicine.  Or stay awake long enough to drink her medicine or any liquids.  The oral syringe is my best friend and Ellie's biggest enemy right now.

In the past few days, I have given my daughter sugary concoctions and food items that I swore I would never keep in the house let alone beg her to take.  She now has reason to believe that we have cupcakes in the pantry and that ice cream is an acceptable food for breakfast.  That several types of juice and Gatorade have a home in our fridge.  Swirly straws and various drinking apparatuses have been introduced to my stubborn toddler.  The thing is, they are not enticing enough.  Even the Capri Suns were purchased in hopes of enticing her to drink.  Capri Suns--a treat only at birthday parties.

She is holding her own face mask.  The Child Life Specialist got it out to show her and Ellie just yanked it from her hands and put it on her face with the attitude of "uh huh!  I know how this thing goes, girl!"

My little bundle-of-energy isn't behaving like my Ellie.  The spider monkey has disappeared.  She has not tried to climb onto the kitchen island once.  I know!  She is a different child.  Plus, she watched a movie.  An entire movie.  While sitting.  The whole time.  Snuggling with me.  Did I mention it was a whole movie?  As in more than 5 minutes? I would say it is glorious to snuggle with my little Bear, but I am sad because I know that she is behaving this way due to pain. . . and I cannot make it better.

How do you explain to a child that you put them through this pain to make them better?

On Tuesday, the day of her surgery, Ellie tricked us.  The little turkey led us to believe that she was fine and dandy.  Good to go.  Chugging apple juice to the extent that I was a bit worried about the contents of her next diaper.  Scarfing down ice cream like there was no tomorrow.  Attempting [and succeeding] to climb over the railings of the hospital crib and trying to escape her hospital room--with her diapered tush hanging out of her gown.  Ta-ta Dell Children's!  The Bear is on the loose!

Ellie tiredly sat in that post-anesthesia care unit trying to sign along to Signing Time and the Wiggles.  Shouting to everyone that her name was "Eeeee!" when asked.  She charmed the pants off everyone!  She was my Ellie.  A little drunk, but still my spunky Ellie Bear.

Then.  Suddenly.  The Scream.  Not an "I'm pissed off. Give me M&Ms" scream, but an agonizing scream.  Pain.  Severe pain.  From my baby.  Full body tensing.  Panicked look in her eyes.  The Scream of Agony.

Though not because pieces of her upper airway were scraped out, but because of pain from her bladder/ureter.  Yes, she was grabbing the diaper area.  She would scream for 10 minutes, then urine would gush out into her diaper and she would calm.  Repeat.  Repeat. Repeat.  The vicious cycle finally slowed to twice an hour. It was so horrendous that the nurses finally requested the docs to come and look at her and were begging for a PCA pump [patient-controlled-anesthsia aka IV pain med pump].

Was it a UTI?  Was it a bladder spasm caused by the anesthesia?  An over-distended bladder? The doctors and nurses seemed clueless.  I googled.  I Facebooked.  I tapped into my previous nursing experience.  Mostly, I tried not to cry in front of my baby.

Ding ding ding ding ding.  As it turns out, Bear's IV fluids should have been discontinued once she demonstrated that she could maintain her oral intake of liquids.  As in, the IV fluids should have been shut off the moment we reached her hospital room.  Once the IV pump was off, the excruciating pain decreased and the screaming ceased, but my Ellie wasn't the same little girl from earlier that day.  She was cranky.  Irritable.  Hyper.  An overtired type of hyper.

I was also puked on.  Dried, coffee-ground-blood puke all over my clothes. The clothes that I changed into for sleeping.  Yuck.  Zofran was given which helped the vomiting, but caused the hyperactivity.  Oh yes, FYI Zofran hypes up a child like crack.  

Finally, around Midnight, Ellie calmed enough to fall asleep.  Only to be woken up by loud beeping.  I spent 2 years working in a PICU and I know my alarms.  I also know that a lot of times they go off because the battery is low, the wire is kinked, or the child removed the lead.  This alarm was none of that. Apparently, Ellie couldn't keep her oxygen [O2] sats up while sleeping and was dipping pretty low once in a deep sleep.

Introducing, the nasal cannula.  Ever try to keep one of those bad boys on a little toddler?  Yeah, even with the little sticky dots and tagaderm and even more tape, Little Miss had the cannula ripped off in record time.  Fortunately, her skin remained in tact.  I spent the remainder of the night vigilantly [in panic mode] watching her monitor and holding a face mask in front of Bear.  If she turned, I chased her with the mask.  With the mask, she would sat in the low 90s.  Without the mask somewhere in the 80s. Typically, the upper 80s but everyone once in a while she would slip to 80%.  

My persuasive powers allowed the ENT surgeon to feel comfortable discharging Ellie into our care.  Who knew that batting one's eyelashes could go so far!  In all seriousness, Ellie's surgeon and I go way back and she knows that I tend to be hyper vigilant [aka worry-wart /  obsessive].  Yes, Ellie's O2 sats sucked while sleeping but chances are, they were low prior to the surgery--you know, obstructive sleep apnea and whatnot.  When awake, The Bear was rocking at 96%.  She has no signs of respiratory distress and everyone knows the best healing happens at home.

Since discharge on Wednesday, it has been a battle to keep fluids in her.  We have tried various sippy cups, straw cups, dixie cups, swirly straws, regular straws, and the dreaded oral syringe.  We have tried foods that count as fluids--yogurt, ice cream, applesauce. I even did the reverse psychology of "this is mommy's drink, not Ellie's".  Five days of obsessing over every sip and every diaper. Five nights of laying with my daughter cuddled up against me, nearly kicking me off the bed as she moaned in between doses of pain meds.  Five days and I believe she finally turned a corner.

Ellie woke up and drank 3 ounces of a Capri Sun without any coaxing.  She also only took a 3 hour nap as opposed to a 5-6 hour one.  She put together a few puzzles and she ate part of a donut.  She signed along to "Signing Time".

I know that you all are thinking that I should have been prepared.  The hospital discharge papers warn of a 10-14 day recovery.  Yet, this was the Bear's 5th surgery and she has always bounced back quickly, even after her GI procedure.  Even when ill with a high fever, Ellie tries to climb into the sink or escape through the dog door or demands a "sandwich" from Quiznos.  My little Bear has proved to me over and over again that she is a little trooper and with this surgery, she has proved the same.  She is strong.  She is resilient.  She is a trooper.   While at times I felt helpless, I also knew that I could give her the only thing that others could not--I could be her mommy.

Home

I will write a more detailed post, complete with stellar iPhone photos when The Bear is doing a bit better.

In the meantime, Ellie Bear had some really huge, cryptic tonsils and a nasty (as in lots of crusting and mucus--I said NASTY!) adenoid of substantial size was removed.  I am told it was quite impressive.  She is also the proud owner of a new set of ear tubes.  Ellie likes to trade her tubes in for a brand new pair every 6 months-1year or so.  You know, she needs the new model.

Yesterday was rough due to reasons unrelated to the throat and she did have some oxygenating issues at night during the scant few hours of sleep she did get.  Again, more details later.

We are home after we all batted our eyelashes at the ENT surgeon.  As much as we love the scrumptious hospital food, stellar concierge service, and luxurious sleeping arrangements, we knew that Ellie would recover much better at home.

Beauty Sleep: Tonsils, Adenoids, and Ear Tubes-obstructive sleep apnea and chronic sinusitis

*I apologize in advance for some missing photos - I used Photobucket for free as a means to store my photos and they are now holding a few hundred pics of mine for hostage unless I pay for an expensive plan and I also managed to lose half my photos from my computer*

There is something so precious about a sleeping child.   Her face goes slack.  Her beautiful eyelashes brush against her cheeks.   So peaceful.  Tricking one into thinking that she is an angel and not a wild child.

So beautiful and peaceful until Ellie started to sleep in some rather worrisome positions.  Positions that can suggest obstructive sleep apnea.

Sitting up.  Upper body raised half on the bed.  Head thrown back.   All ways a child naturally attempts to make it easier to breath while sleeping if they has apnea.  Of course, my daughter is a wind-up toy.  She essentially is go-go-go until she literally collapses so this could also be the case--collapsing mid-play.  

We did not do a sleep study.  While it seems that a sleep study is the gold star for diagnosing and determining the severity of sleep apnea, Ellie did not undergo one.

Ellie's lateral neck Xray to rule-out possible AAI showed moderate obstruction by the adenoids.  Ellie's head/neck CT scan from her extremely scary fall in February showed the same as well as a wicked case of sinusitis.

Photo: www.kids-ent.net

You cannot see the adenoid. It is a lymphatic tissue located behind the nose-where the nose meets the throat.  Similar to the tonsils it is a part of the immune system in that it can help fight infections.  An enlarged adenoid can make breathing from the nose rather difficult.

An enlarge adenoid can also contribute to sinus infections in children in that it blocks drainage from the sinuses.  This fluid accumulates in the sinuses and makes the perfect breeding ground for bacteria and viruses.  This is Ellie's problem.  Her MAIN problem.

My little Ellie has had a sinus infection since January.  Yes, January.  As in several months.  She has a low grade fever every 7-14 days that lasts anywhere from 24-72 hours.  Then the snot appears.  Thick, very thick snot.  Copious amounts of snot.  I don't rush to the pedi every time The Bear has a fever or snot.  Remember, former pedi health care provider over here.  I wait and do a lot of nasal saline.  When the snot wasn't going away and the fevers were hitting nearly every 1-2 weeks, I would finally take her in.  Sinuses.  Always the sinuses. We would try antibiotics and things would improve for a bit, but it was never completely eradicated.  About 1 week after antibiotics, BAM! it would be rear its ugly head.  We even tried nasal antibiotic spray that required me to go to a special pharmacy to compound it.  We do intensive allergy treatment as well. Her sinuses just wouldn't/won't clear.

Fortunately, my little girl is a trooper. Nothing stops her.  Febrile or not, she would still be climbing onto the kitchen island or running around our backyard attempting to play fetch with Sophie dog.  However, she was missing school and she was in pain at night.  That sinus pressure while laying down was too intense and this mama bear couldn't ease her nighttime suffering.

Therefore, we are removing the adenoid!

Where do the ear tubes come in?  That pesky honking large adenoid is also blocking the eustachian tubes.  Again, as with the sinuses, when the eustachian tubes are obstructed, fluid can accumulate in the ears.  This can lead to hearing loss as well as infections.  Ear tubes allow any fluid in the middle ear to drain.  This will be Ellie's 4th set of ear tubes!

Why are you taking my tonsils and adenoid?

In a few hours, I will hand my baby over to the surgeon for her 5th surgery--the ENT trifecta of tonsillectomy (oh, did I not mention her large tonsils?!), adenoidectomy, and ear tube placement.  As with any surgery, I panic and worry.  There is anesthesia involved!  We have to spend the night in the hospital! So what does a mama bear do when she is up at 2:30am and cannot sleep due to anxiety?  She blogs of course!  Now my husband, he is up because he is more worried about her attempting to climb out of the hospital bed and cracking her head open--I think his worry is more appropriate as that is more likely to happen.

Prayers and happy thoughts would be appreciated today as my baby, my little darling girl has surgery.




References:

Obstructive Sleep Apnea.  Lucile Packard Children's Hospital. http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/apnea.html

Children's Sleep Apnea.  American Sleep Apnea Associtiation.
http://www.sleepapnea.org/diagnosis-and-treatment/childrens-sleep-apnea.html

Tuncer U, Aydogan B, Soylu L, Simsek M, Akcali C, Kucukcan A. Chronic Rhinosinusitis and Adenoid Hypertrophy in Children. (Jan-Feb. 2004). American Journal of Otorhinolaryngology. http://www.ncbi.nlm.nih.gov/pubmed/15011200

Adenoidectomy. Children's ENT and Facial Plastic Surgery: Children's Hospital and Clinics of Minnesota http://www.pedsent.com/surgery/adenoidectomy.htm



The Hailey Herald is a delightful blog about a little girl who rocks something extra.  Her mom is a fabulous writer and Hailey is gorgeous.  She also likes to conk out in the funniest places/positions.

Can you help?

I wish that I had more time to write and more time to advocate for this little boy.

The Nine Family will be traveling to Eastern Europe later this week to adopt their little boy Sebastian.  Sebastian just "celebrated" (if you can call it that) his 3rd birthday in an orphanage.  When the family last received an update, he weighed 12 pounds.  Yes, you read that correctly.  Twelve pounds, as in the same weight as my cat.  It is imperative that this little boy be with his forever family ASAP.

They are short on funds.  Not much, but those funds are still precious and greatly needed.  Can you help them out?

Read the family's blog here: http://littletreasureofours.blogspot.com

Read more about my blogging buddy's plea here: http://ourcorabean.blogspot.com/2012/12/wish-list.html


Or, donate directly through Reese's Rainbow.

Don't forget to spread the word.  They are leaving this week!

Sebastian [Linden]

Thank you.  From the bottom of my heart, thank you.  These children are not forgotten.  They will never be forgotten.  I will not forget.

Five Years of Bliss

This is Andrew.  Yes, I know what you are thinking; that he is scrumptious.  Oh and he is, but mitts off for he is MINE!

Nearly 8.5 years ago, I stood in the back of St. Joseph's church in St. Louis with my friend Anne (who is now my cousin-in-law) looking at two engineers (yes, I knew that they were both engineers.  You can just tell.  Trust me on this.  I can spot one a mile away.  My family is full of the Big Bang characters).  Anne and I whispered to each other "so, uh, which one is the groom?"  To my ultimate delight, my baby Drews was NOT the groom.

Four sentences.  That was the extent of our "conversation" at that wedding.  You know, he is a real talker.  I learned that he was indeed, an engineer.  In Texas.  The Lone Star state.  The state that I said I would never live in.  At this point, I was living in Oregon or New Jersey or one of those states that was far far away from Texas.

Quiz: Guess where we are? Hint: not Texas
a. Smokey Mountains, TN
b. Rocky Mountains, CO
c. The Alps Mittenwald, Germany
d. Allegheny Mountains, PA

A year later my friend Jessica begs me to visit her in Austin, Texas.  She and her engineer husband just moved to Texas and were living with Andrew.  Their house was not quite done being built.  Jess was lonely.  She was also the ultimate match maker.  I was living in Jersey and working in Philly.

Of course I visited.

This is where I will tell you:

I went against everything from the movie "He's Just Not That Into You".

Yep, everything.

I have no idea why, but I am glad that I did.

I pursued this hot, sexy man.  I asked for his email and his phone number.  Clueless, he didn't ask for mine so I gave it to him.

Maybe "He's Just Not That Into You" doesn't apply to engineers?

We emailed a few times and finally, while on the phone with Jess, I had her put Drew on the phone.

"Why don't you call?!", I asked.  I am relatively certain Drew had some lame excuse, but he was thinking "she is so hot I don't have a chance".  Okay, that part is not true.  He was really thinking "why would I start a relationship with someone on the East Coast when I will never ever leave Austin?"

Then, he wouldn't leave me alone.  For a man who hated the phone, we would spend hours talking.  He would visit me every 4-6 weeks.  A few months later, we were engaged.

Let it be known that I moved 1,717 miles in the dead of winter to be with my Drew-Drew.  I shall repeat that 1,717 miles.  One-thousand-seven hundred and seventeen miles or 25 hours of driving.

I loved him so much on the day of our wedding.

I loved him even more when Ellie was born.  How can you not?  Isn't this the sweetest picture?

My love continues to grow each year.

To this day, I will ask him:

Honey, can you get you reach those wires under the desk for me?  Honey, can you reach that toy from under the couch?  Babe, can you pick this up for me?  All so I can smack him on the a**, er buttocks.  Because, he is that scrumptious.


Happy anniversary, Andrew, my soul mate.

Oh and, can you reach over and untangle my printer/computer wires for me?






* The answer to the quiz is: The Alps Mittenwald, Germany.  Andrew and I honeymooned in Bavaria (Germany).  Currently, Andrew is in Germany.  Without me.  He is cheating on me with two coworkers.

I want my mommy: What You Can Do #justiceforethan

"I Want my Mommy"

Those were Robert Ethan Saylor's last words as right before he was suffocated to death while being hog-tied by 3 off-duty, un-uniformed police officers in a Regal Cinema in January 2013 in Frederick County Maryland.

"I want my Mommy."

Words that he frantically cried out as his mother was on her way to deescalate the situation.  As she tried to get there in time to rescue her son.

"I want my Mommy."

A dying plea from a young man with an intellectual disability as he was attacked by strangers.  As he waited in the theater after the movie Zero Dark Thirty for his aide who went to retrieve the car.

"I want my Mommy."

The last words heard by the 17 witnesses as Ethan's face was pressed into the floor.

All over a movie ticket.  All over $12.

Was it worth it?  Was it really worth it?  Is your life worth $12?  Is your child's life worth $12?


As I have said before in my post Dying At The Hands of Police, this is not about whether or not he should have been allowed to watch the movie again.  It isn't.  This is about a violation of human rights. Ethan's rights were violated and he died because of it.  He DIED.  Excessive force was used on this young man with Down syndrome.  Oh he kicked at them.  He cursed at him.  Therefore, the security guards deemed it necessary to use 3 sets of hand cuffs on him?  Hog-tie him--a method of restraint that has been banned from most police forces?

Where is the outrage? 

If you have absolutely no idea what I am talking about or why this is important, my blogger buddy Meriah sums it up nicely here: It's About Human Rights-Justice for Ethan.


This goes beyond police training.  These 3 OFF-duty officers used excessive force.  They also ignored basic training in using the hog-tie method.  So why would more training change this?


Additionally, in seeking police training and police training ONLY, we are further re-inforcing the grossly mistaken belief that Down syndrome killed Ethan. "Oh we need to train police about arresting people with Down syndrome because that guy died from Down syndrome".  Remember that Ethan's death was ruled as a homicide and yet it was said he died from Down syndrome?

As Meriah at With a Little Moxie suggests as does a few fellow bloggers, that the police involved in this homicide got off with a "hand tap" because Ethan had Down syndrome.  Would there be a bigger uproar if he had been black?  Another race?

A Cry for an Independent Investigation

The National Down Syndrome Congress states that an independent investigation is needed as does the International Down Syndrome Coalition and Down Syndrome Uprising.

 The NDSC believes an independent investigation of what happened is necessary.  “Beyond the need for accountability, we need to know exactly what occurred so that we can work with law enforcement to ensure that it never happens again.”  

Down Syndrome Uprising asks for you to contact:
To demand an independent investigation, contact these instances here.

IDSC: Please consider signing this petition and this petition.
We are asking for a simple request. An independent investigation. Then when all is said and done, we will be quiet. 

The time is now.

 What can we do?

Sign the Change.org petition.  There are a few floating around on the interwebs, this one here is the one that has been signed off on by Ethan's family and is gaining the most momentum.  Sign and share!



https://www.change.org/petitions/justice-for-robert-saylor



Bring attention to the Department of Justice to open an independent investigation:

• Petition--this one needs 100K signatures and we only have 791 to date

• Letter to the DOJ

• Call DOJ: (202) 307-5138

Write to people with public contact: FBI Maryland Field Office / DOJ / Attorney General & Assistant Attorney General /  Frederick County MD police Dept. / Maryland State Police

• Copy and paste this letter--address listed here as well.

Twitter

• #justiceforethan 
• Stay tuned for twitter parties
• Read here for more details
• Sample twitter feeds:
• “Join us in our push for #justiceforethan”
• “Love someone with Down syndrome? Join us in our push for #justiceforethan”
• “Disability rights are human rights. #justiceforethan”
• “Death ruled homicide, cops walk free. We need #justiceforethan”
• “Down syndrome isn’t a cause of death. #justiceforethan”
• “No one should die over a movie ticket. #justiceforethan”

Add this picture to your blog, to Facebook, to twitter.

href

="http://wp.me/p2ZfJC-22x" title="#justiceforethan" target="_blank"><img src="http://www.withalittlemoxie.com/wp-content/uploads/2013/04/justice250.jpg" alt="#justiceforethan" style="border:none;" />

You can also check out Little Bird's Dad step-step 8 Days for Ethan.

You do not need to be a part of the Down syndrome community to be sympathetic or to make a difference.  You just need to have a human heart.  Do one or all of the above to help make a difference.  It takes just 3 seconds to copy and paste a letter, to make a phone call, to tweet.

Then, remember to share.

I cannot do this alone.  Ethan's family cannot do this alone.

Dear Pepsi

We will happily accept several cases of Pepsi products (preferably Diet Dr. Pepper aka DDP) in exchange for Ellie's advertising.

*why yes, she did attempt to put 12-pack of Pepsi into the cart.  She got as far as lifting it from the display.  Super Bear strength.
**yes, she really did scream  say "ball" while pointing at the Pepsi logo.

Play For All Abilities egg hunt

Ellie:  Ball.  Ball. Ball!

Me: Okay, Bear.  Where do you see a ball?

Ellie: BBBBBBAAAAAAAAALLLLLLLLL!!!!!!

Apparently, Ellie thinks the little pastel, plastic eggs are balls.  Oh wait, never mind, she is nearly tackling to the ground a mother holding an egg-filled basket with a balls painted on it.  BBBBBAAAAALLLLLL! Thankfully, this mother totally understood the excitement surrounding the ball basket and appropriately braced for the impact.

It was early Saturday morning and we were at the Play for All Abilities Park in Round Rock, Texas for an egg hunt.  This is one of my favorite parks but it is 30 minutes from us, meaning we do not make it out here very often.  The Chunky Chicken screamed "Yay!  Oh yeah oh yeah" as soon as our car pulled into the park.  Clearly, it is one of her favorite parks too.

The park was closed to the public that Saturday so that children with special needs and their siblings could participate in an egg hunt.  For many, this may have been their first hunt that they could fully participate in.  True, there were eggs scattered on the ground like a traditional egg hunt, but there were also plastic filled goodies of yumminess strategically hanging by nylon thread from the rails of the playscape.  At such a level that children in strollers and wagons could easily reach them.  There were eggs carefully placed upon the windowsills of the building in the small pretend play town (er, life skills learning center).  A town that is designed for wheelchairs, adaptive strollers, walkers, and wagons. Eggs that were at the perfect height for children in wheelchairs, walkers, or adaptive strollers.

While some of the eggs contained candy, there were ones cleverly marked with princess or car stickers that held non-edible items--a chance for children with special diets to reap the benefits of the prize in the egg rather than woefully think "I can't have this".

At first, Ellie didn't even care about the eggs.  There was sand!!  And sand!  And did I mention, SAND!?  Then the playscape.  Oh how she loved to frolic, er climb and run like a wild child hyped-up on caffeine (and yet, this child doesn't get caffeine).

After her ball-tackle incident, she finally figured out that there were eggs and that the eggs belong in her basket.  The eggs were also BALLS!!!!!  Ellie wanted to play with the eggs.  She didn't really care that each and every single egg contained a delightful temporary tattoo of "Seton Medical Center".  Really?  Come on!  Everyone wants to have "Seton Medical Center" emblazoned on their hand.   Seriously, she didn't care that anything was inside the egg.  She just wanted the balls eggs.

While this is a park for children with All abilities, sadly, people do stare.  Let's face it, my daughter looks different.  She is unbelievably gorgeous and clearly most people are jealous of her beauty and spunk, but she does look like she has, well, Down syndrome.  Some of my friends have kids with Ds, trachs, walkers, and other medical devices and conditions.  People stare.  While I would like to say it is just the children.  The adults also stare and sometimes rather rudely.  It happens and it can be unnerving.  At this egg hunt, there were no stares. There was acceptance.  We were all a part of a club.  A club celebrating the awesomeness of various abilities, but abilities none-the-less and taking a moment to enjoy carefully planned event for our children.  An event tailored towards all abilities.

*Notice the this hot mama isn't in any pics again?  Hmmm.



More about the Play For All Abilities Park:


The park was many years in the making.  Five to be exact.  A park designed for all children.  Typical children, children with sensory issues, children with autism, children with motor issues in wheelchairs or adaptive strollers.  All children.

It is something I used to take for granted.  Accessible parks that is.  Until I had Ellie. Ellie has Down syndrome.  She took longer to sit, to stand, to walk, and to climb than many of her typical peers.  She also has sensory processing disorder.  She has trouble regulating herself and is in constant motion. She needed/needs a safe place to spin, twirl, swing, and climb.  They have equipment at this park that allows Ellie to do all of these things.  She is afraid of water.  Their water table has helped desensitize Ellie.  She no longer has a meltdown if her arms, legs, and torso get wet (her face is another matter and another blog post!).

Each section of the park was carefully planned to be accessible and stimulating for all children. It is fenced in so that my wayward running Ellie Bear does not end up in the parking lot or run over by a train.


There is sand.  Lots and lots of sand.  Good for Ellie.  Good for sensory experiences.  Not so good for mama.  Sand in shoes, car, clothes = laundry + vacuum + bath.

There is also a little town for pretend play, complete with traffic lights, wheelchair ramps, and side walks.  Actually, this town can be used in teaching people about life skills.

The playscape is accessible to wheelchairs and it isn't very high off the ground.  What that basically means is I am no longer having heart attacks and the sprouting of gray hairs when Ellie attempts to climb onto the playscape.

There are swings for all ages and medical devices. Meaning there are swings for wheelchairs, swings that offer greater support, regular swings, and baby swings.  I will tell you, though, there are not enough swings.  There are 7 swings total.  Two of which Ellie can use.  Both of which are typically occupied.  This can cause Ellie Bear Meltdowns.

There are also not enough picnic tables, but that is besides the point.

If you ever happen to be in Austin or Round Rock, be sure to check out the Play for All Abilities Park. Oh and give us a call.  The Bear is always up for SAND!

Cameras in Special Education Classrooms

This past Thursday, Ellie came home with remnants of navy blue paint smeared across her face and strategically placed in between her fingers and up her forearms so that it was sure to remain through Easter Sunday.

As I took off her shoes, I noticed that she had no socks on.  Hmmm, had I forgotten to put socks on her?  It has been known to happen.  I removed her shoes and there, on the bottom of her right foot were two bold, blue blotches of paint.

I laughed.  That's my Ellie.  Taking off her shoes whenever possible.  We used to joke that we needed to staple the shoes onto her for we could never keep them on! Frequently, in the car, I would hear the WHOOOSH of the velcro and then a THUNK as she tossed a shoe into the trunk.  So it stands to reason that my little Chunky Chicken would take off her shoes at school.

The thing is, I was relieved to see the paint.  It meant that her shoes were not duct taped onto her.

Yes, I said duct taped.

Two months ago, I read about the little girl with Down syndrome who couldn't even walk down the steps of her bus because her feet and ankles were duct taped to the point of pain and impaired movement.  I was enraged.  I was mortified.  I also thought, this must be an isolated incident because who would do that to a child?

Until it happened to a friend of mind.  Only her daughter had her hands taped together (along with repeated verbal abuse and other physical abuse).  This teacher also abused an 8 year-old boy in the classroom as well.  He stated that "she [teacher] was a bully"

I am going to be honest, here.  I do not understand.  I truly do not.  Ellie has a wonderful teacher and a fabulous aide who clearly love working with kids.  They love Ellie and they love what they do.  My Aunt works with older teens in special education.  She obtained her degree when my cousin was out of school.  Ellie's babysitter, my "daughter" (people, I am not old enough to be her real mother!) is diligently studying to be a spec ed teacher.  She has passion.  She is excited.  She is going to be awesome.

All of these people have passion.  They want to work in special education.  No one goes into special education for the money.  So, why am I reading more and more new stories about children in special education classrooms being verbally and physically abused?

The scary part of all of this is: The parents did not know.  My friend, she was contacted by child protective services.  Yes, contacted by.  She did not contact them.  She did not know.  My Ellie is nonverbal.  It isn't as though she can tell me.  I wouldn't know either.

These are just TWO reports since February.  Go on google.  I dare you to and be prepared to be mortified.  There are so many more cases.  So many that it is mind boggling.

Cameras in Special Education Classrooms:

I have been reading a lot about the placement of cameras in special education classrooms.  The cameras go both ways.  They are for the protection of BOTH kids and teachers.  You have the nonverbal child who is being verbally or physically abused and cannot tell anyone.  Or you have the child who self-inflicts harm and comes home covered with bruises and blames the teacher/aide.  In the first instance, the camera would help build the child's case and in the second, the teacher's/aide's case.

I also know there are a lot of kinks that need to be worked out such as privacy rights of the child/children, the cost of installing and maintaining the cameras, who monitors the video feed, but I believe cameras could be a great deterrent and it bears more consideration.  In a recent Texas Observer article about the placement of cameras in schools, a police Sergeant stated that the cameras in his police vehicle made him a better officer.  He contends that it might do the same for teachers having cameras installed in the classrooms.

Enough Training & Overcrowding:

Moreover, I also believe that we need to fight for smaller class-sizes and more training for teachers in dealing with emotional meltdowns.  Many children with developmental disabilities and autism tend to have behavioral issues.  I for one, know that it can take TWO people to move my child to "circle time", sit down for lunch, or have her blood drawn (okay three people for that) or essentially have her do something she doesn't want to do.  She weighs less than 30 lbs.  That would take the teacher and the aide right there.  Add that to the other 11 kids her in class. . . . well, you see where I am going.  You can check out this article: Do Special Education Teachers Get Enough of the RIGHT Training?

I am saddened that this is happening in schools across the nation.  A place where we trust our children to spend the majority of their day.  A place where we expect them to be protected.


Cameras in Classrooms Petition

Cameras in Special Needs Classrooms Facebook Page


Stories about the pros & cons for Cameras in Special Education Classrooms:

http://www.myfoxhouston.com/story/21578260/2013/03/11/call-to-put-cameras-in-special-education-classrooms-gains-volume

http://abcnews.go.com/US/cameras-classroom-crusade-parents-special-kids/story?id=17150926&page=2#.UVmorr_QxIA

http://www.texasobserver.org/abused-special-ed-students-parents-cameras-classrooms/

http://www.myfoxhouston.com/story/19487972/2012/09/07/teachers-union-says-cameras-in-special-ed-classrooms-not-needed

http://specialedpost.com/2012/09/11/understanding-the-legal-hurdles-to-placing-cameras-in-sped-classrooms/