Tuesday, April 22, 2014

The Adorable Dress, Play for All Abilities, and some Plastic Eggs

This really was meant to be an Easter post, but it really is about a dress.

Growing up Catholic, Easter was the holiday.  The pentacle of our religion.  The celebration of Jesus Christ rising from the dead. The whole family would gather for a huge brunch--grandparents, aunts, uncles, cousins.  Usually there was an egg hunt for the little kiddos filled with candy and then the extra large egg that held a quarter. Yes, we wore our Sunday best along with new dress shoes.   The Easter Vigil was always beautiful and moving.  We would enter the church holding little white candles as our only means of illumination.  After 40 days of no singing, the glorious sound of the choir bursting into the Gloria was mesmerizing.   To my not-so-very-religious husband, Easter is about the dress.  He has learned through Facebook, friends, and family members who have little girls that the dress is important. . . I sort of feel like we are talking about a wedding dress and not a little girl's Easter dress!

Location: Play for All Abilities Park


Nonetheless, Ellie's Easter dress was quite adorable.  The dress was a gift from her "aunties" Meeta, Preeti, and Jen.  Here is the link for the dress since so many of you have asked about it.  Chick-A-Boom LOVES this dress.  It is frilly.  It has a pink bow.  It is girly.  She can wear cupcake leg warmers trimmed in pink tulle with this dress.



The first time she wore the dress was at the Play For All Abilities Egg Hunt.  I wrote a bit about this event last year.  This is a great opportunity for children who have different needs.  It is sensory friendly and accessible.  Eggs are "hidden" on the ground, on ledges of the playscape, and hanging from fishing wire--the perfect height for toddlers, those in strollers, and those in wheelchairs.  Ellie is just now getting the knack of egg hunting.  She gets that you are supposed to take an egg, but she gets distracted.  She shakes the egg.  Opens it.  Eats the candy.  Closes it.  Then Opens it again.  Tries to close it.  Repeat and repeat.  She finally puts it into her basket.  In most egg hunts, that would have been her only egg because she spent all that time manipulating that one and only egg.  At the All Abilities Egg Hunt, the eggs are in obvious places and each child is allowed 12.  No more.  Plus, the parents are allowed and encouraged to help out their children.  The egg hunt is overwhelming?  No worries, there are swings and a merry-go-round low to the ground!  Having trouble waiting your turn to join the egg hunt?  No worries, there is plenty of room in the sandpit!  Petrified of the Easter Bunny?  Again, no worries as half the kiddos there are scared too. Can you tell that I love Play for All Abilities?

Note the cupcake leg warmers on the left.
I have no idea why she is studying that egg so intently.  I think I put Little People in there or a princess sticker.
Don't ask about the cups.  She is obsessed with them and had to accompany her on her egg hunt.

Easter was a laid back event at the Theurer household.  We have plans to visit my in-laws in Plano next weekend and my parents stayed in St. Louis.  To celebrate, we invited over a few friends of ours for Easter lunch. . . Texas style.  Translation: smoked brisket, potato salad, beans, and berry cobbler.  I assembled little Peep Bunnies driving a Twinkie car for the kiddos. Just before the guests arrived, I heard smack smack smack.  Someone, who goes by the name of Bear, retrieved these sugary concoctions from the middle of the kitchen island.  Both Twinkie cars were missing their pretzel wheel and one little Peep was missing half his car.  Yep, that's my girl.  Climbing and devouring pure sugar.



Well I am not really sure where I am headed with this post other than Ellie wore a dress that she refused to take off.  The Play for All Abilities Park had a great inclusive egg hunt and my husband smokes a good brisket.  Finally, next year I will only give Ellie empty eggs in her basket seeing as that there is nothing she likes better than opening, closing, and stacking those colorful pieces of plastic!


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Wednesday, April 16, 2014

An Update on the Preschool Situation: letters

A few weeks ago I wrote about a horrifying experience we had with a potential preschool (that I will call X).  I had/have the firm belief that the American Disabilities Act [ADA] was violated and that my daughter was faced with inappropriate discrimination based off of preconceived notions of Down syndrome. I am usually the first to tell you that my daughter is not an angel.  I have never admitted to that. You all know that she is a sassy little diva full of attitude.  I will, however, tell you that she was an absolutely rock star and dare I say 'angel' on the day of her observation.  Anyway, you can read more here: tired of fighting.



After my blog post, my dear friend Gary in the Ds Community graciously offered her time and expertise in drafting a letter that would be both be read and taken seriously by the Chief Operating Officer of said preschool.  Honey vs. vinegar!  Appeal to their mission statement!  You can read the letter at the very bottom of this post.

I emailed and snail mailed my complaint to B, the COO.  Within a few days, I received the following email:

Mrs. Theurer,

I want you to know that I received your letter late yesterday.  I am moving today and tomorrow and need some time to cover your concerns with my supervisor.  I will respond to you on Monday at the latest.  Please know that your concerns are important and I want to have uninterrupted time to review all the information. 


Upon further discussion with Gary, we determined that B's "supervisor" was most likely a lawyer seeing as the COO probably doesn't have a supervisor.  Her excuse for "moving" = buying time.



I also received an email from the director/manager J of the location we wanted to send to Ellie to.  I chuckled because they were trying to cover their patooties.  J's email looked like this:

Anna,

How are things going?  I hope that you're having a great week, and enjoying this beautiful spring weather!  B let me know that you contacted her with a request to reconsider Ellie's enrollment with us.  I want to be sure that I pass on all of the pertinent information to her.  I was hoping to get another copy of Ellie's IEP, as the one that you brought me did not have any notes or evaluations - it only contained her goals.  I'm wondering if perhaps you have a completed one as well? 

Thank you so much,
J

I had a few choice words, but held back.   I decided to sleep on it and consult Gary for advice on how to proceed.  You see, I do NOT want my daughter at this preschool. Honestly, who would want to send their kid to a place that is so narrow-minded?  Not me!  I drafted a letter this past Monday, but before I could send it, I got a phone call from J requesting Ellie's IEP again.  I essentially read J the email that I had planned on sending her.



Letter/ Phone Conversation with J with regards to reviewing her case for enrollment and IEP:

J,

I fully appreciate the willingness of you and B to re-evaluate Ellie's application to X, however that was not the intention behind my letter.  The letter I wrote to B was more of a complaint about the evaluation process, her observation, and ultimately the decision to require an 1:1 aide when other children with Ds at your L location do not have aides.  

It was also to bring attention about the violation for the ADA and possibly discrimination towards my daughter on the basis of her disability.  As such, my husband and I no longer feel that X is a good fit for my daughter.  While I think that X has lots of potential to be a an excellent daycare, it is my hope that my letter will bring about further education and change and thus prevent future families from going through what my daughter went through.

Therefore, I will not be submitting a copy of Ellie's IEP.  For future reference, Ellie's IEP is a private document is does not need to be disclosed to a daycare.  Furthermore, it is a 60 page document with a lot of legalese and private medication information.  Her goals are the most relevant as they demonstrate where she needs the most help.  There are no notations nor an evaluation.  In the RRISD, evaluations are performed every 3 years.  This means that Ellie's evaluation is 2.5 years old and clearly irrelevant at this point in time.  Her IEP is also a 7.5 months old and somewhat irrelevant as she has accomplished a great deal in the past school year. I tell you this because it may be helpful for future families.

Sincerely, 

Anna Theurer




Now Wednesday evening I have not heard back from B.  I have full intention to send documentation of my phone conversation with the AM location director J since it is clear further education is needed.

Did my letter to the COO change anything?  I do not know.  Honestly, I hope it changes how they evaluate children with special needs.  I hope that they further educate all staff--directors and teachers on the ADA.  Perhaps, my letter serves as a wake-up call and perhaps future families will be spared what I went through.

You will notice, however, that not once did they offer to overturn their decision.  They just offered to review her case. . . as though submitting tons of documents, clearance from a doctor, IEP goals, and an hour-long observation were not enough!



More than anything, though, I am grateful that Ellie is too young to realize that she was being "tested" and that she "failed" their test.  Summer is quickly approaching and while I know that there must be other places out there that I could look into, I am shelving the summer preschool battle for a later time.  I am a fighter.  I will never stop fighting for my daughter.  Yet, I have bigger battles to face right now.

To really understand the decision on fighting and how hard to fight and how we fight, please read Tiffany's blog post Easier than Discrimination--exactly what I have been feeling and thinking.

__________________

Original Letter and 1st Official Communication with COO of X preschool/daycare:


April 2, 2014
Ms.B

Dear Ms.B,
I’d like to take this opportunity to thank you for all you and X are doing to ensure all our young children have the tools they need to create caring relationships as well as educational opportunities to develop the social, emotional, physical and cognitive skills that will positively shape the adults they will become. As the mother of a four year-old just entering the preschool phase of her life these values are so important to her success as well as her peers’.
I am particularly impressed with your educational philosophy of social responsibility and found the following on your website:
“X intentionally guides children in building social responsibility. Children learn strategies to appropriately express their feelings, develop self-control, show empathy to others and interact successfully with peers and adults. Our children will become critical thinkers, conservators of the environment and successful, confident learners.”
I am not sure if you saw the latest information about the prevalence of autism in our children, but the most recent data shows an increase of 30% or one in 68 children is currently diagnosed with autism. More over almost one in ten children in our educational system in Texas are currently receiving special education services. This so clearly speaks to me of the role of social responsibility and how even our youngest children can learn from each other if true diversity is practiced in the classroom. Your mission to recognize the importance of giving every child the opportunity to discover their world, by partnering with families to create a caring educational community that enriches the childhood journey speaks to this acceptance of recognizing our children and families for who they are, not what they have.
My four year-old daughter Ellie is funny, bright, active and loving. And yes just like many other children her age she sometimes needs to be redirected, but when she understands her schedule she is right on top of it. Ellie teaches us all about awareness and acceptance, and would be an asset to any school she attends. We were quite excited to apply to X for your summer program.
You can imagine, based on what I had read and heard from friends from your L location, that I was quite surprised to learn Ellie was turned down at the AM location (unless we paid for 1:1 support) due to some poor documentation as well as incorrect information. I certainly hope it was not due to the fact that she has Down syndrome. You will note I have enclosed a recap of the series of events that lead to being told Ellie was not welcome and would not be included at X this summer unless she has the 1:1 aide. 
I request you revisit this decision, for a number of reasons, but primarily an awareness that inclusive education is here and will continue to be the philosophy of our educational institutions forever. The sooner all students learn to work, study and play together, the sooner we can create classrooms of social responsibility, diversity and true learning. Why should the students in AM location not have this opportunity?
I appreciate your commitment to all children and our family looks forward to becoming part of the X family.
Best Regards,
Anna Theurer
Enclosed: Series of Events Attachment
Series of events – March 19, 2014 to March 27, 2014 – AM location of X
For summer program: M,Th,F 8am-12noon
March 19, 2014 – Ellie visits under the observation of me and J, the director of your AM location, which I felt went very well.  
March 27, 2014 - I contacted J as I had not heard back if Ellie was “cleared” to attend your center. I was shocked to learn Ellie could only attend your center if my husband and I provided her with a 1:1 aide at my expense.  I understand that this decision was made by corporate using the observation notes made by J as well as my parent intake form and doctor’s notes.  Ellie’s doctor made no notations for special accommodations and I made a notation under toileting and feeding. 
I do not know what was written on Ellie’s observation form by director J, but I do know what I wrote on the form and what I observed.
The three reasons, as per your regional director for the Austin area, are as follows:
  • Pull-ups. On the parent intake form, I disclosed that the areas where she needs help is with opening yogurt containers (a moot point since you do not allow outside food) and that she requires a pull-up, but rarely pees in the morning.  I was told that this was a HUGE deal as you do not have the support staff for this.  While I do understand that the teacher cannot leave the children unattended, it is illegal as per the ADA to refuse a child on the basis of not being toilet trained if the facility has diaper changing areas anywhere within the building.  Additionally, J and I had a conversation about how Ellie wears underwear to her PPCD class at the elementary school and that she typically does not urinate in the mornings which is when she would have been attending X.  
  • Trouble with transitions. Transitions can be difficult for my daughter and by that, I mean to she may need reminders to do things.  She does not have full out tantrums or anything to that extreme, but sometimes she needs told twice—sometimes down on her level, face-to-face. This is something that is common with all children.  Especially young children.  During Ellie’s observation, she entered the classroom during circle time.  She entered a large room full of new toys and was expected to attend to circle time without knowing the routine.  She went to the back of the room and pulled out a bin of plastic dinosaurs.  I approached her and told her to clean up and sit in circle time.  She then cleaned up and sat in circle time.  After circle time was center play.  Ellie sat at a table with two little girls and played with the kitchen food.  At clean up time, Ellie tried to comply but needed a little help knowing where things go—please understand that she has never been to this classroom before.  She needed ONE reminder to clean up and another direction to tell her where the play mop belonged.  It was her observation day in the class—an unfamiliar classroom willed with new toys, strange children, and an unfamiliar teacher.  She had no knowledge of the rules or routine.
  • Opening the gate. This one actually makes logical sense to me.  When we first arrived, the class was outside.  What we didn’t know is that they were lining up to return to the classroom.  J allowed Ellie time to play on the equipment while we discussed the parent intake form.  This also allowed J to see that my daughter has no gross motor delays and would not require assistance to navigate the playground equipment.  There are two playgrounds connected by a chain link gate.  This gate was not locked and the handle is at the perfect height for a child.  My daughter opened the gate.  I understand that this is a safety concern.  That being said, she has never been there before.  She was not aware that she was not allowed to go through the gate.  
When I spoke with J on March 27th, she was very polite and did put me in touch with A, your regional director, so that I could learn how this decision for an aide was reached.  She was very polite and asked me to describe Ellie’s observation and provide clarification on various notations that she saw on Ellie’s forms.  She requested Ellie’s IEP which at this point is 7 months old and promised to resubmit our packet for review.  

On a different note - your daycare/preschool facility came highly recommended by several clients at your L location.  Some of the clients have children with Down syndrome.  Some of these clients indeed have potty training accidents and developmental delays.  Yet, none of them were required to have an aide.  These clients love the director at your L location and love their experience there.  It saddens me that we did not receive such an experience. Perhaps it would be beneficial to educate the staff at other locations?  That just because a child has a disability doesn’t mean they required a 1:1 aide.  


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Monday, April 14, 2014

An open letter to author John Green on his perpetual use of the r-word

The following open letter was written by a concerned parent and fellow friend to the author of several popular young-adult books, John Green.  I would like to share this letter here with you:

Dear Mr. Green, I’ve just finished reading “An Abundance of Katherines” and have previously read: “The Fault in Our Stars,” “Looking for Alaska,” and “Will Grayson, Will Grayson.” As a woman of 40+ plus I have probably read more of your books than many of my peers. My oldest daughter, who is 17, and her friends are huge fans of your work and I read the above-listed books at her suggestion. I must admit that I have enjoyed your writing style, your penchant for weaving characters together, your ability to keep the reader interested throughout and your sense of humor. Sadly, there is a part of your writing that I have not enjoyed….your repeated use of the word “retarded” and its many iterations as a slur. My youngest son, who is 2 years old, was born with Down syndrome. He was born into a world where many people think he should never have been born, where people think it’s okay to ridicule him simply because he has an extra chromosome. They judge him and the person he will become, before they’ve even laid eyes on him. Now, I’m sure you did not mean your use of the R-word as an insult or a slur towards my son, or those like him. I’m sure your intent was not to offend, but to use vernacular that is widely used by your reader base. What you may not realize, is that your use of the word reinforces the negative connotation and normalizes its use amongst teenagers. When these types of slurs are accepted they enable disenfranchisement on a very large scale. What I didn’t notice in your writing was the use of other slurs. Slurs such as the N-word, gay, homo, fag, the list could go on and on of words that were once widely used and with impunity in our society. These words were often used in order to garner a cheap laugh at the expense of others. As African American and LGBT rights have flourished, the use of these words became less and less acceptable. People began to realize that words have the ability to target and diminish and entire population of people. In today’s world, people with cognitive disabilities and their families and advocates are asking society to stop using the word “retarded” and all of its many mutations for the exact same reasons. It demoralizes and diminishes an entire population of people, sight unseen. At a minimum, I do hope that you will reconsider your use of the word in future writings. It would also be amazing if you would take a vocal stand against the use of the word and join the “Spread the Word, to end the Word” campaign. Just think of the impact you could have. http://r-word.org/ Respectfully, Stacey Calcano (mother of 4, ages 2 to 17)

Twitter: @realjohngreen

Thursday, April 10, 2014

Texas Blue Bonnets and Fire Ants

*warning: if you do not like funky skin pictures, do not scroll all the way down--happy pics first, then yucky ones*

Confession: People in Texas are obsessed with plunking their children down into a field of weeds (sometimes even in a road ditch) to take pictures.  These weeds are blue bonnets and are currently blooming in full force.  I may have bludgeoned people to death on FB with the question of "where ever did you find such a great place for blue bonnet pics????" because obviously I want to deposit my own precious little girl down into those delightfully colorful weeds and take photos.  It is tradition, you know.

I had a great plan.  Truly.  I picked a patch in a park near not far from out house.  This patch was near a trail.  I fully expected Hyperactive Bear to run along the trail and I would take pictures of her gleefully running away from me and the bluebonnets would be in the background.  I stomped around for snakes and found none.  This was going to be great!!!!

Yeah, as with most plans that involve Ellie, things did not go as expected.  She decided to sit.  SIT!   in a fire ant pile.  Fire ants [the species I am referring to in this post are the red imported fire ant] are native to South America but have migrated to the Southern regions of the US back in the 1930s, most likely accidentally imported via shipping crates.  They refuse to leave even though they are highly unwelcome visitors.  Well, actually they do serve a purpose in that they control the ground-nesting bee and earwig population, but I. do. not. like. them.  They swarm.  They attack.  They bite. . . multiple times.  It is estimated that anywhere from 3-16% of the population have an anaphylactic allergy to fire ant bites.  I once got a whopping case of staph due to one bite.  Yay!

Ellie, got over 30 bites. I stopped counting after a while.  She stood up from the flowers grabbing at her dress.  I thought she had to pee. . . until she started screaming.  Chick-a-Boom was under attack.  I threw her ant-covered shoes down the trail.  This caused Ellie to scream louder "Oooooh [shoes]".  They were up her dress.  I couldn't get them off fast enough.  One managed to viciously attack behind her right ear.  Her feet swelled up immediately.  Bright red and hot to the touch. I was profusely apologizing to Ellie while crying.  Ellie's pull-up protected her nether regions.  Those elastic bands that help hold urine in--also prevent fire ants from entering.  My darling.  My Bear.  Swollen and red.  All of this for a dumb picture in some weeds.

Crying hysterically on the phone to my husband and then my mother we developed our treatment plan. . . a la Dr. Google and eHow.

Ellie got a nice soapy bath.  I then applied a paste of baking soda.  Ellie got a whopping dose of benadryl.  Every 6 hours.  The swelling started to go down and we gave her another bath in Domeboro Astringent Solution.  More baking soda paste.  More benadryl.  Ellie didn't scratch at them, but I know they hurt her.  She couldn't wears shoes.  Changing her pull-up was painful.

The next day, the swelling was down and I could see the individual bites.  They came to a pustule head.  They were all red and hot.  I took her to the pedi who gave us a strong prescription steroid cream.  I also got bactroban antibiotic cream because I was told the chances of infection are high. Goody.  After 72 hours, the bites look much better.  I am never taking Ellie outside again.  I am wrapping her in bubble wrap and that is that.

First things first, Blue Bonnet Pictures:







Fire Ants: immediately after attack
There are no pics of her feet.  She would not let me near them.

Large red, swollen areas.  Unable to different individual bites.
Painful to touch and intensely itchy

Fire Ants: 12 hours later after antihistamine administration
swollen red masses with tiny pustule-like heads


Fire Ants: 24 hours later after steroid creams and continued antihistamine administration
You can see how the swelling is gone but the heads of the bites for tiny pustules. It is also hard to see, but they are bright red and more angry than before.
This pic does not do it justice.  Large patches of angry red-hot skin.  Mild swelling.  The bites have white-heads.
Sorry, no feet pictures--still very swollen.  Could not wear shoes.  Would not let me near them.


Fire Ants: 4 days
You can see the now they are just pimple-like marks.  The pustules are mostly dried out and scabbed over. It should be noted that Ellie did not scratch these.  We kept her pretty covered.
Sorry for the poor photo  quality.  They pustular heads are opening and forming craters.  Very itchy.  Some of the heads have turned into scabs.  Swelling is gone.  Heat is gone.


Fire Ants: 1 week
These are the only shots I could get.  Now look like the end stages of chickenpox.  Round bites with scabbed centers. Believe it or not, yesterday was the first time she actually tried to scratch them.



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