Friday, August 31, 2012

Preparing to enter Preschool Special Education: the assessment

Ellie's possession of an extra 21st chromosome pretty much ensures that she will be receiving special education throughout her school years.  Upon Ellie's diagnosis of Down syndrome, we started to learn all sorts of acronyms specific to the special education system.  It is comparable to learning another language in my opinion.  ECI, PPCD, ARD, LRE, IEP just to name a few.  To make it even more complicated, some of these capital letters are the same throughout the USA & Canada while some are state-based.  To make it all a bit easier to follow, we are in Texas.

At a private preschool over the summer.  She was the only kiddo with SN.


From birth to three years of age, Ellie participated (actually still participates) in Early Childhood Intervention [ECI].  In Texas, Ellie received developmental therapy services weekly from a licensed social worker.  This therapist provided sensory integration, PT, OT, and speech.  For a very (and I mean VERY) short period of time, Ellie received monthly speech therapy services through ECI from a licensed speech pathologist.  I argued for more services because PT/OT/ST cannot all be effectively implemented in one 45-minute weekly session, but that is entirely another blog post all together!   Anyway, ECI is only effective until the child is 3 years-old.  The day after her 3rd birthday, she is booted out the door.




Ellie turns 3 years-old on September 16th.  She will start school on Monday September 17th.  In ECI, we have started to prepare Ellie for entering the school system.  The BIG KID school as I like to call it.   The elementary school.  In Texas, she will attend the Preschool Preparedness for Children with Disabilities [PPCD].  I am sure it is called something different in other states, but it is PPCD in the Lone Star State.  As I mentioned earlier, when a child with special needs turns 3 yo, she no longer receive services from ECI, but rather from the school district.  This is where people start to toss about the scary acronym of IEP--Individualized Education Plan.

As per WikiPedia, An Individualized Education Plan or IEP is designed to meet the special educational needs of one child, who may have a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would.[1] In all cases the IEP must be tailored to the individual student's needs as identified by the IEP evaluation process, and must especially help teachers and related service providers (such as paraprofessional educators) understand the student's disability and how the disability affects the learning process.


I have heard great things and I have heard horror stories.  I have heard about battles between the parents and the school district.  I have been scouring blogs for information and educating myself about Wrights' Law.

I do not intend to go into our school with guns blazing, but rather with coffee and donuts.   I do not think the special education teachers and therapists go into their field of work with the goal of having it out for my child.  I do believe that they are trying to provide a realistic education plan that will best serve my little girl.  However, I also believe that I know my child best.  I know how she learns best and I know what motivates her.  I also know what her struggles are and areas that greatly concern me.  We are all a TEAM and as a team, I do expect to be allowed and encouraged to make recommendations and to have my concerns and ideas heard.  As a team, I also intend to listen to them with an open mind.

One issue that greatly concerns me is that many school districts, including Ellie's, does not use signing [ASL] as a form of communication, but rather Picture Exchange Communication [PECs].  While Ellie Bear somewhat grasps the concept of PECs and even uses pictures to request the iPad or Mr. Potato Head, she mostly communicates with signs--or should I say gross approximations of signs.  I do wonder how this falls under the special education laws?

We have not met to discuss Ellie's IEP yet.  It is in 2 weeks.  I am literally peeing my pants with anxiety.   Yes, there will be a blog post about the IEP.  Yes, you can bet on me having several panic attacks.   Who would like to watch my daughter while I sweat it out at the school?  Who would like to hold my hand while I sit next to the education team?






Where are we in this process right now?


The Screening:
Last month there was a screening to determine Ellie's eligibility in participating in the PPCD program.  Yes, I recognize it is a bit laughable because a diagnosis of Down syndrome which encompasses intellectual disability and speech impairment automatically qualifies her for services.  Therefore, the screening was more of a formality and it included a team of two special educators.  The testing room was a large playroom.  With a slide.  A tall slide.  Ellie stormed into the room, waved "hi", removed her shoes, and made a beeline for the slide.  She spent the next hour eating a black crayon, briefly working on a puzzle & shape sorter, putting everything in her mouth, running, sliding, running, sliding, running, putting the baby down the slide, running, and sliding.  She was silent nearly the entire visit except for the one time she said "car" and attempted to say "guitar".  She did show off a smidgeon of her fine motor skills which was beautiful.  Ellie really proved to the screening team that she does indeed have Sensory Processing Disorder with severe motor and vestibular seeking behaviors and extensive oral cravings & mouthing.  I think that the team was rather fatigued just watching her.

At the end of the screening, I was informed (very nicely) that it would be likely that they would recommend placement in a special classroom within the PPCD program.  She would not be at her home school with kids from her neighborhood.  With kids that are both typical and with special needs.  They believed that her "extra" needs, meaning her excessive mouthing, her incessant climbing, her poor attention span, her sensory processing disorder, and lack of communication meant she needed more one-on-one teaching which she would receive in this special classroom.  I was a little shocked, but not devastated.  The thing is, I know my daughter has motor and oral seeking behaviors.  I know that they [the behaviors] create real safety concerns and that they impede her learning.  I know all this and I want what is ultimately best for her.  I spoke with her developmental pediatrician afterwards and she agreed that a more one-on-one type setting would be most beneficial for Ellie even if it meant a noninclusive environment at this early age.  For the past 2.5 years, I believed my daughter would be attending the school down the street from our house and at the end of the screening, I was left wondering exactly what school she would be going to.

Shortly after her screening, I became familiar with LRE or Least Restrictive Environment.  This means:

As per WikiPedia: Least restrictive environment is identified in the U.S. Individuals with Disabilities Education Act... By law, schools are required to provide a free appropriate public education (FAPE) in the least restrictive environment that is appropriate to the individual student's needs.
"Least restrictive environment" (LRE) means that a student who has a disability should have the opportunity to be educated with non-disabled peers, to the greatest extent appropriate. They should have access to the general education curriculum, or any other program that non-disabled peers would be able to access. The student should be provided with supplementary aids and services necessary to achieve educational goals if placed in a setting with non-disabled peers. . .Because the law does not clearly state to what degree the least restrictive environment is, courts have had to interpret the LRE principle. 





The Assessment:
Yesterday Ellie completed her play-based assessment at the elementary school with a team consisting of a special education teacher, a speech therapist, and a child psychologist.  Our ECI developmental therapist was present as well.  Our ECI therapist was a life saver.  She has known Ellie for 2 years and 11 months and guided Ellie through the assessment.  Our therapist really showcased Ellie's strengths, but she also drew attention to her weaknesses.  This is really important because now the team can formulate realistic, appropriate, and attainable goals for my daughter's development and education.

In an attempt to provide a peace offering, I brought donuts with me.  The team mistakenly believed I brought them (all dozen apparently) for Ellie.  Contrary to popular belief, I do not typically stuff my hyperactive toddler Bear full of delectable, deep-fried, sugary confections.  Donuts 1.  Donuts 2.  I also dressed up to show that I am a professional, meaning I didn't wear shorts or flip flops and I wore foundation, a necklace, and earrings.

I should also probably mention that in the past month since her screening, we (Andrew, myself, Dr. F from developmental peds, and our ABA therapist) have really worked with Ellie on decreasing her mindless climbing, increasing her attention span, and decreasing her distractibility.  She has come a LONG way in the motor seeking behaviors (climbing, swinging, hanging), but the oral seeking is as bad as ever.  Let's just say that the team could not believe they were watching the same sassy little girl.  The child that previously behaved like a human pinball/wind-up toy was actually sitting.  GASP!

Back to the actual assessment...Ellie did utilize the slide a fair amount in the beginning, but then she calmed down and worked with the therapists on tasks that required her to sit at a table.  Anticipating Ellie's propensity to munch on crayons like a major food group, the team had the nuggets of colored wax strategically hidden.  However, Ellie ate a marker.  No lie.  She bit right through the plastic.  Jaws of steel, this kiddo!  Ellie also showed off various signs paired with vowel sounds.  While the team was performing this 2 hour long play-based assessment, I filled out a novel a packet of developmental test questions that required the usual always, sometimes, never, or not able to responses.  I loathe these forms.  Most of these questions were a tad ridiculous for a 3 year-old, which the therapists thankfully acknowledged and agreed with me.  Apparently, this specific test is applied to kiddos up to age 6.  No, my child does not say 6-word sentences.  She only says 6 words total and certainly not combined together--Mama, Dada, Ball, Yeah, No, and Car.

Their assessment, along with my answers to their questions, suggested that Ellie has a lot of splintering in the different developmental categories.  What this means is that there is no continuum across the one developmental area (social, self help, fine motor, gross motor, cognitive).  For instance, she may do activities socially that are very appropriately for a typical 3 year-old, but in other social areas, she is at an 18 month-old level.  She can do complex problem solving, but in other areas she cannot "connect the dots" so to speak on more simple tasks.   She also has great difficulty generalizing.  For example, she understands the command "clean up", but you have to be very specific on how to do it such as "books on the shelf" or "blocks in bucket".  While splintering is not extremely uncommon among those with special needs, it is not very typical among those with Down syndrome.  Interesting is all I have to say on that matter.

At the end of the assessment, I was informed that the team will recommend at her IEP that the best placement for Ellie would be at her home school in a typical PPCD program!  This is an inclusive program in which half of her peers are typically developing children (these are preschoolers that are children of the school's staff) and the other half are children with various special needs.





Thus far, I have learned a great deal from this process.  I have learned that all school districts are different.  My friend's little boy who does not have Down syndrome in the neighboring district had a 20 hour assessment--4 hours/day x 5 days in which his mother was not present.  Whereas Ellie had a whopping 2 hour long assessment.  Do I think they gathered enough information during this short assessment?  Yes, because Ellie was having a typical morning.  She showed off her strengths and her weaknesses beautifully.  She was behaving the way she normally behaves at home, at her regular preschool, and at playgroups.  It was not a bad day or a good day, but a "normal" day for her.  Now, if she was a cranky pants and Little Miss Clingy, then I might say differently!

It will be intriguing to see how her IEP meeting goes.  Good thoughts and prayers would be greatly appreciated!  I am still a novice and I would love for you to share your experiences and your advice.
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Wednesday, August 29, 2012

Friends Don't Count Chromosomes

I have a blog post that I have been working on and working on and working on.  I am having great difficulty getting my thoughts to come across coherently and I apologize.  Ellie has made many friends such as dear Jack and our mother's club buddies.  Friends who see past the her differences such as the chewing on everything or the fact she doesn't verbalize.  Yet there are those little girls who say horrid things such as "Elwie, I don't want to play with you because you chew on my toys."  Or "Elwie, go over there!"  Or how about the "Creepy Baby" incident?  One day, hopefully soon, I shall publish my brewing post.

The moral behind my unpublished, jumbled post is:

Friends Don't Count Chromosomes





Being a parent is difficult.  What do I say to my little girl once she realizes that she is not accepted into a circle of friends?  I am thinking that I need to figure this out soon!  Yet, being a parent is so rewarding and I cannot imagine my life without my little girl who happens to sport some designer genes.  I hope to get this post in order soon.  I hope share with you that my Ellie Bellie Bear has a best friend at preschool.  A charming friend who asks "Where is Ellie?  She is my best friend ever." and her mother who looks past Ellie's Trisomy 21 and SPD and says "when can we meet up for a playdate?"  A mother who by offering to host a playdate is teaching her daughter and her older brother that being different is okay.  That friends do indeed do not count chromosomes.


Stay sassy, my sweet Ellie.  You are rockin' and others will indeed appreciate that!

Now, if I can just my act together and get my post up about friendship!
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Sunday, August 26, 2012

The demise of the pink chair

When the levee breaks,
mama,
you got to move.

We all know that our children with Down syndrome tend to have low muscle tone throughout their bodies which happens to encompass all of those little muscles within the intestinal system. Unfortunately, this commonly leads to constipation.  The Bear is no different in her propensity to back up, but every once in a while, our methods to uncork can backfire.


Warning: This post is indeed about poop. Toddler poop.




Toddler Bear has been plugged up ever since she stopped her daily 1-pound consumption of grapes.  Apparently, heavily processed cheese crackers do not have the same laxative properties as all natural fruit.  I turned to Miralax and apple juice for a few days and just little tiny pebbles of stool painfully emerged.  Until Thursday at preschool.  There was a massive Code Brown situation that involved a change of clothing and a rinse in their industrial kitchen sink.  Thankfully, the preschool will welcome her back into their classroom.  Big. Sigh. Of. Relief.  I saw the discarded, soiled clothing and I thought for sure they would be forever traumatized.

I foolishly believed that the worst was over.  I firmly thought that I escaped a massive fecal clean-up that would necessitate a Hazmat suit.

While it does not happen often *wink*, Mama Bear was incorrect.  Saturday rolls around and the Chunky Chicken was innocently playing on her pink armchair with Signing Time in the background.  I was there perfecting my "porcupine" sign because who knows when I might actually need to whip out my vast knowledge of random animal signs like skunk or porcupine.  Uh, does anyone know how to sign kookaburra?  Anyway, I heard a swoosh or a pfffffuuutttt.  Then, the stench hit.  The air purifier went from green light to red light indicating that the air had become very "unpure".

There was a fecal explosion oozing out of Bear's diaper.  Up the back.  Out the diapers holes.  Dripping down her legs.  I was left wondering "when did she eat an orange crayon?!?!"

After letting lose this torpedo of stool, Toddler Bear was content to play while sitting in all of her soiled goodness.  However, this Mama was in a hurry because I feared fainting from the fumes created by a stool that had been cooking since Thursday.  Plus, it was ALL OVER. I grabbed Ellie's hand and nearly dragged her to the bathroom.  Little nuggets of waste were threatening to plop onto the wood floor from her diaper.

Then. . . she stuck her other hand into the back of her diaper.  Really?!  As though this wasn't gross or messy enough, my angel of a daughter felt the need to further cover herself in nastiness?

Upon plucking her into the bathtub, she ran her poo-covered hand with little flecks of orange crayon across the tiled shower.  I detached the shower head and hosed my little darling down all while she was screaming like a tortured banshee because her head got wet.  I felt great satisfaction as I watched rivulets of brown water escaping down the bathtub drain.

Convinced that Ellie was as clean as humanly possible, I removed her from the tub, placed a fresh diaper on her, and went to assess the damage to the floor and the chair.  The floor was an easy clean-up.  I have a dog.  Just kidding! Sophie dog did not indulge in stinky doo-doo.  The chair. . . oh the chair had smears everywhere from where the diaper literally exploded from the force of her little bowels evacuating.  There was no slip cover on this chair.  There was not a detachable cushion. It was all one piece. It looked like a zoo full of monkeys had a hay day flinging poo at it.  No amount of oxyclean, detergent, or even pet cleaning fluid could fix the chair.  I know because I tried.  These chairs are expensive!  We paid $10 at a garage sale, but that is besides the point.

We said good-bye to the pink chair, I scoured the bathtub, and I hid the miralax.


Are you sufficiently grossed out?

If not, my blogger buddy Leah has much more entertaining (and disgustingly hilarious) story about her little girl Cora.  Head on over to Our Little Cora Bean.  Warning, her post is not for the squeamish!





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Wednesday, August 22, 2012

Fun Foto Flashback

I recognize that I have been a bit negligent in my blogging and I promise that will change soon.  I have a "real" post in the works, but until it is completed, you will have to settle for cute, adorable photos of my darling Bear-Bear captured back when she was about 9-12 months-old.  Do admire the chunks!  The rolls!  The chubbiness!  Nom Nom Nom.  It is from these snapshots that Ellie earned the beloved nickname of "The Chunky Chicken".



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Monday, August 20, 2012

An Orphan No More, the Sader Family, and More Tabitha Pics

Let's shout it from the rooftops!  There is one less orphan in the world today.

Many of you may remember the Shpak family as I often blogged about their adoption journey as well as the various fundraisers they were hosting to help bring home their daughter Ruby (Shannon).  Well, yesterday, our dear sweet Ruby walked out the doors of the orphanage in Eastern Europe with her forever father and soon will be on a plane to meet the rest of her family.  I feel as though this has been the longest pregnancy ever, but the Ruby was well worth the wait!

Ruby (Shannon)


Congratulations to the Shpak family on their new family edition!

You can continue to read about there journey on their family blog.



Additionally, my dear friend Deanna and her husband Rob have just boarded a plane to head over to E.E. to meet their new daughter Harper (Charity).  For months they have been raising funds and filling out a mountain's worth of paperwork.  Please keep the Sader family in your thoughts and prayers for a safe travel and a smooth adoption.

Harper (Charity)




My darling Tabitha is still without a forever family to call her own.  She is still spending her days in an orphanage and I hope that her family will find her soon.  Here are some new pictures of our sweet little Tabby.
Tabitha



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Sunday, August 19, 2012

Food Wars: Ellie vs. Sophie Dog

Thirty paper towels.  A mountain of sponges and scouring pads.  A pile of soiled washcloths, dish towels, and clothing.  Food flung across the room.  Sour cream dripping off of tables.  Mashed cracker crumbs ground into the floor.  Sticky peanut butter welded onto the walls.  Water. Every. Where.  Mealtime is never dull in the Theurer household.  Welcome to the first ever

Toddler Vs. Canine Food Wars.

Meet your contestants:



Ellie aka The Chunky Chicken is a rambunctious toddler who enjoys playing with her baby doll, building block towers, and creating a ruckus.  Heavily processed, unhealthy cheese crackers and sour cream are currently the only two food items she will consume.


Sophie aka Princess Puppy Paws is a hyperactive border collie who enjoys playing fetch with her red, rubber bone and lives for eating kibble, heartworm pills, and peanut butter.  Her water bowl is never empty, but is it typically out of her reach during the daylight hours due to a maundering toddler.


Round 1:  The Cracker Games




Whoa!  Check out that tongue action!  (I am sorry, I just couldn't help myself!)

The point goes to . . . Sophie Dog!




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Round 2: Water Tampering

I vant to suck your blood!  Yes, she is eating sour cream, from a bowl, with a  spoon.

Sometimes it is important to change up your eating utensils and serving dishes.  In fact, dumping your food into the dog's water bowl and using a spoon to eat slurp your food is both posh and the picture of etiquette.  Oh and I forgot mention, be sure to do this half dressed because you don't to sully your dress.




The point goes to . . . Ellie Bellie Bear!


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Scores:

Ellie 1
Sophie 1



It looks like we need a tie breaker!



Up next, the Challenger---Amelie Kitty Cat of the Kitty Kat Kitties.  She has 4 teeth and the propensity to torment small feathered creatures.  She roams suburbia like the Queen of Sheba and enjoys stealing turkey off people's plate.  She is, Amelie.


Doesn't she look vicious?





*I have updated my post on Wayne Brady & Jim Roddey, Shame On You as the comedian has since issued an apology. *

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Tuesday, August 14, 2012

Wayne Brady and Jim Roddey, Shame on you!

Update August 17, 2012: Wayne Brady has issued what I believe to be a sincere apology for his joke on the Roast.  Letter can be found at the bottom of this post.  I do hope that a lesson has been learned and that others in the media will take note and know that making fun of those with disabilities is no acceptable.

Making fun of children.  Using those with disabilities as the butt of your jokes.  Both are unacceptable and are in poor taste.  Yet, comedian Wayne Brady and GOP Chair Jim Roddey both thought it was appropriate and even funny to poke fun of those with disabilities to further their careers.





Back in July, GOP Chair Jim Roddey addressed a large election party in Pittsburgh where he stated:

"There was a disappointment tonight. I was very embarrassed. I was in this parking lot and there was a man looking for a space to park, and I found a space for him. And I felt badly -- he looked like he was sort of in distress. And I said, 'Sir, here's a place.' And he said, 'That's a handicapped space.' I said, 'Oh I'm so sorry, I saw that Obama sticker and I thought you were mentally retarded."


Political views aside, whether you support Obama or loathe Obama, why is it appropriate and even at times encouraged to use those with disabilities, in this case those with intellectual delays, to serve as a punchline?  The crowd was just as ignorant as Roddey in that they roared with laughter!  Is this what my daughter and many others who cannot stand up for themselves have to look forward to?  Being the butt of jokes?  Why are those with disabilities fair game in the arena of comedy?  Shame on your Roddey.

Update: since I started writing this post, Jim Roddey has apologized and has referred to his actions as "regrettable" and "inappropriate".






Sadly, Roddey is not the only one!  This month, comedian Wayne Brady  decided to use Sarah Palin's son Trigg as the punchline of one of his jokes at the Roxanne Roast.  He jokes:

"Now the thing is Jeff [Ross] ... these are all jokes, and I really like you. I really, really like you. But a lot of people hate you, especially Sarah Palin because you remind her of what Trig is going to look like when he’s 40."

Again, I do not care if you are a Republican or Democrat or Independent.  I do not care if you love Sarah Palin or strongly dislike Palin.  This is not about politics.  This is about a child. Not only a little boy, but a child who happens to possess little something extra.  A child with Down syndrome.  That's hilarious, Wayne Brady.  You are a 40 year-old man who should be wearing his big boy pants.  Is your career so far down the tubes that you have to resort to picking on an innocent little boy with developmental disabilities that are not his fault?

I really love how when you were booed you continued your arrogant and ignorant ways and said "Oh, now you boo me? F*ck y’all. I don’t want to hear that. These people say all of this sh*t about me, and you boo me because of Trig?”  Wayne Brady, my daughter Ellie is stunning beyond words and she will be gorgeous even at the age of 40.  Oh and she has Down syndrome.  Clearly you did not learn from the mistakes of your compatriot Margaret Cho, who by the way recognized the error of her ways and apologized. Please take a moment to man up and apologize.  Better yet, take a moment to educated yourself.  Wayne, you can find excellent information on Down syndrome on the NDSS.org, National Down Syndrome Congress, or even on this very blog.



Sadly, this video of Wayne Brady at the Roxanne Roast was recorded well before it aired on Comedy Central. In my eyes, this TV channel is not much better than the comedian.  Why did they leave the clip in the show?  Could they not have edited it out?  Did the editors think the joke was funny or were they looking to torture those with developmental disabilities and the families who care for them?

For those of you who feel as enraged as I do, you may leave comments on:



Wayne Brady's  Facebook Page 

@waynebrady on twitter

Comedy Central Program Feedback




It is my hope that the more people speak out against those in the limelight, then maybe, just maybe, other people will learn that it is not okay to use slurs against those with disabilities.  After all, we saw it with comedian Margaret Cho and with most recently with GOP Chair Jim Roddey.

Wayne Brady's letter of apology on FB page:

This letter has taken me a few days to compose because of the conflicting emotions that I've experienced since the day of the Roast and it's subsequent airing. The environment of the Roast is a comedic (hopefully), tasteless (mostly always), affair that encourages everyone to out-filth each other. Not normally what I'm known for, right? But, when I was invited, I jumped at the chance to play outsi
de of my perceived "norm" and have fun. The Jeff joke was written for me and at the end of the day I take full responsibility for saying it. It wasn't meant as a slam to Trig and at the time I didn't see it that way.

I could defend it as a performer, but I would rather apologize from the bottom of my heart as a father. I understand how a parent, who loves their child, who tries to nurture and shield them when they cannot defend themselves, would take offense.. I have many times experienced this feeling. I've had awful things said about my daughter.. Violent and most times racial stabs. Being in the spotlight I have built a thick skin to these sorts of things. My daughter ( who's now old enough to understand ) is another story. That being said I write this letter with sensitivity and a strong stance of responsibility for my actions.

I thank everyone who's expressed their opinion for reminding me that my voice is heard... It's easy to forget sometimes in front of cameras and lights.

To the Palins, please know that no malice or harm was meant. To the other families who were touched negatively, I hope you'll be able to accept this apology as well.

I've always said that people in the public eye should be held responsible for what you say and I'm no hypocrite. Thanks for reading and letting me express my side.

Take care all,
Wayne

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Sunday, August 12, 2012

The Creepy Baby

I thought that perhaps we would have more time and yet, I am grateful that Ellie is still too young to understand.  To know that she was being teased.  All because she is different.




We were at one of our indoor playscapes burning off some excess toddler energy when two 5 year-old boys called my little girl "a creepy baby".  She was creepy because she was humming & waving her hands when she was happy and screaming & kicking her feet when she wasn't.  She was creepy because she was doing "weird things with her hands".  Those "weird things" were signs.  She was signing "my turn, help, please, sorry, and thank you" to the kids.  Obviously, I do not expect other kids to understand what Ellie was saying to them in her signing, but it still made my mama heart hurt a bit.


When she is excited, Ellie looks like she is conducting an orchestra!


One of the boys' older sister, told them that Ellie "isn't a creepy baby.  She is a cute baby".  Smart girl!  Of course the brother doing what all brothers love to do started goading her sister and saying that my Ellie is "creepy".  The boys would run because "oh no!  The creepy baby is headed over near the slide!".

I am grateful to the little girl who stuck up for Ellie and recognized her "cuteness".
I might be biased, but I think Ellie Bear is pretty darn cute too.


I graciously thanked the sister who defended my little darling and then I firmly told the two boys that Ellie isn't creepy, but rather she has trouble talking and hence the "weird hand movements".  I explained that it is really hard for her to talk so she uses her hands to speak.  The one boy seemed to understand, but it was still apparently really funny to called my little girl "creepy".  I do not think they were doing this to be cruel. It was more of pointing out that she was different in doing "weird things with her hands" and then it developed a game once the sister corrected them.




Ellie didn't understand.  She doesn't know what "creepy" means and she didn't recognize the they were talking about her.   She just wanted to run around and do what they were doing on the playscape.  However, that will not always be the case.  One day, she will understand and she will know that she is the point of ridicule.


Hmmm.  Me thinks The Bear is hitch hiking.


For the most part, I have learned that children can be very accepting and yet, there are those who taunt others Down syndrome or not.  I have seen kids tease for wearing glasses or even because they have dark arm hair.  I am not ignorant.  I do know that my daughter will be ridiculed during her life.   I was not prepared to experience it so soon.  I also know that I will not always be with her to defend her when she is called "creepy" or what other name someone decides to call her.  I only hope that I can teach my little Ellie and equip her with the right tools to be kind to others and to stand up for herself.

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Monday, August 6, 2012

Rockin' This Extra Chromosome Shirt

I have been getting a lot of hits from people searching "Rockin' This Extra Chromosome Shirt".  This lovely shirt was seen on a very beautiful little girl with Down syndrome on the IDSC for Life Facebook page as part of their big photo campaign.

This shirt IS available for sale through the Down Syndrome Association of South Texas and orders can be made over the phone:  210-349-4372










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Ellie Antics: Donuts

Everyone once in a while I have a brilliant parenting idea such as "let's get donuts for dinner!".

Actually, it was more like Andrew walks in and I am thinking "oh thank goodness!  Reinforcements!" as I peel Ellie off of the top of the dresser and plant her feet firmly back on ground.  Then I realize that I am frazzled and that I didn't cook anything for dinner.  Wait.  Let me correct that.  I do not cook in general.  We shall just leave it at I was frazzled and my hair was standing on end and there was a real sugar, chocolate-icing-with-sprinkles emergency going on.

She never gets into trouble.  She is the perfect little well-behaved toddler all the time.

I gasp to Andrew with my head burrowed into his chest "donuts.  We. Need. Donuts."  After which my beloved husband takes in the occurring chaos involving the toddler trying to sit in the kitchen sink and the 3 fur babies hacking up hairballs and demanding belly pats.

He replies "For dinner?"

I give him the look.

Off to Krispe Kreme we go.  Nothing screams Parent-of-the-Year like shoving a rambunctious toddler full of sugar and fat just a few wee hours before bedtime.

Now, it should be noted that The Bear eats donut holes.  Just donut holes.  Yes, this fact is important to the story.

DONUTS!!!!!  Somebody said donuts!!!!!

We waltz in the Krispe Kreme where they hand us a FREE donut.  Who does that? Seriously?  FREE donuts?!  I love this place! (can you tell I never go into a Krispe Kreme?)  Ellie takes note of all of the gloriously glazed donuts in the case and has a melt down.  A full-fledged, screaming, head-banging meltdown all because she doesn't see any donut holes.  At least, I think that is why she is pitching a fit.  Fortunately, only one other person besides the worker witnessed this debacle because I guess most people don't get donuts for dinner and thankfully, this patron was chuckling.  Sadly, I was laughing too, but trying not to show it.  I had to wear my serious, sympathetic mommy face.


I don't know what Mama is talking about.
I don't DO temper tantrums.  I am a Diva and Divas do not throw tantrums.  

I show Ellie the donut holes that were sitting on top of the counter and ask if she is "all done".  Sob. Gasp.  Big Sigh. The world is not over.  We can now progress to dinner.

The Bear only eats a couple of the donut holes and not her usual dozen (yeah, I know.  A dozen.  And she is so skinny too.)  As the sugar-buzzed Ellie Bear prepares to go into flight and wreck havoc throughout the entire eatery, Andrew deftly captures her so that I may peacefully sink my teeth into an ooey, gooey glazed concoction of fried dough.  Bliss.

As I look up with crumbs and flaky glaze across my face (I am not a dainty eater), I see my scrumptious husband lifting my daughter up to see the donuts being made.  It was a beautiful father-daughter moment that lasted all too briefly (as in not enough time for me to whip out my iPhone to snap a pic quickly).



Watching those rings of dough drop into the boiling oil, Ellie signs "BATH".

Proud-Beaming-Mother-Moment as I realize that my daughter is able to generalize bath time.

That's right, Baby Bear, they were in deed taking a bath.



*I do not typically feed my daughter fried dough.  Okay, that is a lie.  I do it every single Sunday morning.  It is a tradition. *



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