A Perfect Photograph

...does not look like this.

Please ignore the double chin.  In fact, pretend you don't see it.

There is a reason that I rarely post any photos of me and Ellie together.  It is because they look an awful lot like this.  She will cooperate with Andrew and even with my mom, but with me, she refuses to "perform".  Also, I am usually the one behind the camera.

Escapee! 

Many of my photos are the direct result of rapidly pushing down the shutter button of the SLR camera while rolling around on the ground at Ellie's level.  Remember those shots of Ellie and Jack during music therapy?  There were some back bends in there to capture those pics.  I confess that I often use the "auto" mode and if I am feeling extra feisty, I adjust the aperture.

What are we looking at?  Seriously, what are we looking at?  

While live action, candid shots are lovely, sometimes I just want that outdoor "studio-like" portrait of Mother-And-Daughter to place in an Ellie-proof frame by my desk. This requires someone else operating the camera and I certainly do not expect them to roll in the grass in acrobatic form.  There are mosquitoes.  And ants.  Fire Ants.

Close enough.  I will take it!

So I try to wrangle my little girl as best as possible and tell my mother or Andrew to just keep pressing the button.  We all know that shooting approximately 1,000 photos of a toddler yields about 5 usable pictures.  Thank you mom for being brave enough to battle those blood-thirsty mosquitoes and using my extremely slow and dinky point-and-shoot camera!



*Andrew has kidnapped my SLR camera and fully drained the battery. . . oh and left the charger in an unknown location. Therefore, the camera phone and point-and-shoot will be my new friends until the new charger arrives.*

Pretend Play

Ellie Bear is demonstrating a lot more pretend play recently.  For a long while, she had been keen on borrowing Andrew's tennis shoes and my teal sport bra (clean!) while tromping about the house.  Her dressing up adventures have evolved into shoe thievery at both the gym's day care and at indoor playscapes.  Ellie sometimes forgoes all of the climbing and sliding to "try on" the various shoes left behind by the other children.  Apparently, those shoe cubbies that house other children's shoes serve as Ellie's own personal shoe closet.  Sparkle shoes are her favorite. As are crocs.  In fact, her buddy Jack graciously allowed her to borrow his old blue crocs which are still a few sizes too big.  These crocs have been slept in and have received a bath.  As you can see, wearing these ridiculous blue rubber things go very nicely with footy pajamas.  

Perhaps the most exciting show of pretend play came last week after Ellie said "EEEEE" while signing "eat".  As I gathered items for her snack, I turned and discovered that her large stuffed bear, her one-eared sock monkey (mama bear didn't do so good of a job sewing Mr. Sock Monkey), and the two blankies were sitting at the table with her.  It lasted all of 30 seconds.  Just long enough for me to quickly snap a photo. A little Bearity-Bear tea party.  Er, I should say a water party because she drowned the stuffed bear with water from her sippy cup.  I never placed the animals at the mini IKEA table before.  Ellie did this all on her own and it was amazing.  Unlike so many other developmental aspects, this just came naturally for her.  I am a proud mama bear.

Glimpses Into the Future

Sometimes it is so difficult for me to see past the toddler years.  Will Ellie ever talk?  Will this climbing ever cease?  Will she always be so stinkin' adorable while she sleeps?  Will she always possess such sass?  Will she ever be able to eat without getting food all over her face, her hair, her clothing, and the wall (we seriously need to repaint the walls).

Glimpses into the future have been both scary and reassuring.

Many of you have heard me talk about my Aunt Peg on numerous occasions.  Sadly, I only see her 1-2 times a year because I live a good 15 hours away and even growing up, I only saw her on holidays.  In spite of the distance, I do receive frequent updates of my beloved aunt.  Oh the wonders of the telephone and email!

Christmas 2010

While people with Down syndrome are living longer lives, they often do not grace this Earth as long as the general population (many live into their 50s and 60s).  That means in the world of Down syndrome, my Aunt Peggy, at the age of 53 years-old, is considered elderly.  She is declining in her health and in her mental capacity.  She is showing signs of Alzheimer's and is being treated with various medications.  Unfortunately, finding the right combination of medications is rather complicated.  Some make her worse and some make her better.  As is common in the elderly population, a simple urinary tract infection can lead to changes in her mental status.  Then we are left with "is it the UTI?" vs. "is this the Alzheimer's progressing?".

It is painful to watch Aunt Peggy go through this, even from afar.  I do not relish watching my Dad and his brother and sisters navigate the complex world of medical care, assisted living, nursing homes, and hospice.  I do not like seeing this future.  I do not like that I may see this happening to my Ellie.  Do I really have to watch my baby steadily decline both physically and mentally at the age of 50?  As I watch my father and his siblings work closely with the group home in deciding what is best of Aunt Peggy, I become scared.  What if I go before Ellie?  Who will take care of her?  She has no siblings? Do I really want the State in charge of her care?  This is one of the instances in which I believe parents do hope to outlive their children.  Yes, there it is, I want to live longer than Ellie. . . even if it means I have to watch her decline.  As a mother, I want to protect her and I seriously doubt that will change as I approach the age of 80.

Of course, Alzheimer's disease and failing health can happen to anyone, even those without Ds.  Let us not kid ourselves.  I may one day be wandering hallways and unable to recognize my darling Andrew and my dear Ellie.  In fact, what if my Ellie has to watch me become ill?  No, Ellie's future is not definite.  Ellie's fate may not be the same as my Aunt Peggy's and yet, I cannot help, but see this as a very possible future for my little girl.

Feeling reassured and seeing the unlimited possibilities.

Just moments after I received the news of Aunt Peggy's current bought of illness, I saw a delightful glimpse into the future.  A future full of promise and the sky "being the limit".  I am the proud parent of a nearly 3 year-old active climber who enjoys causing white hairs as she attempts and often succeeds at death defying acts.  Because of the Bear's love of climbing and because Texas is a sauna, I often venture out to the indoor playscapes at fast food restaurants.  Today we ventured out to a McDonald's that we rarely go to.  While at this playscape, Ellie starts to shout "GUY" (hi) to this nice lady.  This woman gushes about Ellie's beauty and then tells me that she wants me to meet someone that she works with.  Beth* enters the playscape.  She is stunning with long blond hair, green eyes, and a confident stance.  Beth, has Down syndrome.  Beth starts to tell me all about her work.  She tells me all out the ins and outs of nonprofit organizations.  Things that I didn't even know.  She is passionate.  She loves her job which is currently with Meals-on-Wheels.  She also tells me that she does live with her parents, but she "just has to get out of the house."  Her escape?  Shopping.  She does all of her own shopping at the grocery store and at the mall. She does not need any assistance in picking out items, in calculating the cost, or in producing the correct amount of money.  This was emphatically confirmed by the lady who introduced me to Beth.  Apparently, this woman is an aide, but for Beth she is simply the driver and a friend because Beth is so independent.

These two interactions have provided me with brief, possible glimpses into Ellie's future, but they are just that, possibilities. While all children are unique individuals, I do believe that there are some similarities among those with Down syndrome.  After all, each person with Ds has an extra copy of the 21st chromosome in each and every cell.  That is why people with Ds tend to have low muscle tone and intellectual disabilities.  It is also why there are distinct facial features such as the characteristic almond-shaped eyes.  It is also why there is a higher risk factor for Alzheimer's disease.  While I am worried about my Aunt Peggy and what the upcoming years may hold for Ellie, I am extremely hopeful about my daughter's potential and about all of the various opportunities that will be available to her.  I do not know the future, none of us do, but I do know that I am going to value these toddler years and each year after that.

Splish Splash

A quick little weekend post. . .

We got a pool.  Nothing extremely large or exciting, but large enough for me and Andrew to climb into the water.  We figured the Bear was such a little mermaid that she would love this new addition to our house.  We were wrong.  She is, in fact, terrified of the pool.  The pool has been taken down and our backyard looks a little less like King of the Hill.

Ellie is rather quirky about her water adventures.  She loves water tables and she firmly believes that she must sit in them for a maximum playing experience.  She believes Sophie's water bowl is her own personal, indoor splash table.  Ellie also loves sitting in the sink and washing her hands.  In fact, after anyone uses the bathroom, she believes that she must wash her hands.  She brings her little step-stool over just so she can dip her hands in to the cool water and splash around.  The bath is finally something she enjoys, except for the whole getting her head wet part.

While the pool was not a big hit, the local splash pad is.  I am thrilled that Ellie has finally learned to embrace the awesomeness of the splash pad.  Last year, she was petrified (last year she loved our friend's pool.  She isn't fickle or anything).  Give the girl a yellow bucket and she is in a state of pure bliss.  

Maybe one day we will be back to this:

CHUNKY!!!!!!!

Blog Hop: Down Syndrome Stereotypes and Myths

Ellie came into the world relatively fast.  I only had to push a whopping 6 times and she was out, screaming like the little banshee as though she was saying "how dare you disrupt my peaceful slumber?!"

As a first time parent, I was completely new to caring for a newborn.  I had experience babysitting and I had experience in working with very fragile preemies as a registered nurse.  I knew how to hold a baby and how to change a diaper.  I did not know how to read the different cries, wake up frequently in the middle of the night and then function all day, or how to handle the amazing surge of both anxiety and love that flooded through my mama bear veins.  I also felt that I didn't know how to take care of a child with special needs.

Upon telling my parents that Ellie was diagnosed with Down syndrome, my Dad reacted rather interestingly.  Or so I thought.  I mean, my Dad is my dad and all daughters think their daddies are a little goofy.  Yet here on the phone, my father said something what struck me as really odd at the time "Well, you will just take her everywhere with you.  You will take her on your vacations.  She will do all things as a family with you."  I thought "well of course she will do everything with us!"

My father's youngest sister was born in 1958 with Down syndrome.  This was a time where most children with disabilities were sent away to institutions.  They were not typically seen outside the home.  Yet, my grandparents shunned this idea and they did exactly what my father told me to do with Ellie. They fully included Peggy in every single aspect of their lives and in their other children's lives.  Peggy went out  *gasp* in public with the family.  She went on vacations with them.  She went out to eat with them.  She did do everything with the family.  My grandparents' incorporating aunt Peggy into every aspect of their lives was all very taboo up until 30 or so years ago.  Sadly, many people, especially those in Eastern Europe and many even in the U.S, believe that institutionalizing those with Down syndrome is still a common practice.  Now, I understand what my father was telling me.

My experience with Down syndrome started in my early years and I never even thought to hide away my little girl, but I did have other preconceived notions.   Growing up around Aunt Peggy did not ensure that I didn't buy into all the myths and stereotypes surrounding designer genes. I had relatively limited experience with children with Down syndrome.  There were no children with Ds in my schools and therefore, the only children with Ds I ever came into contact with were little babies in the PICU after their cardiac surgeries.

As I address incorrect, preconceived notions that I bought into surrounding Down syndrome, I will reference my Aunt Peggy frequently.  This does not mean all people with Down syndrome are this way.  Just like everyone else in the general population, people with Down syndrome are individuals with characteristics and strengths that are unique to them.  I discuss Peggy because she was my first and is now my oldest tie to the Down syndrome community.

• People with Down syndrome are always happy.
• Yes, yes, I did indeed fall prey to the "but they're so happy all the time".
• This myth was dispelled rather quickly.  My daughter can throw an epic temper tantrum that have grown men running for cover.  She cries when she is hurt or tired.  She will throw food and toys when she is angry.  She is perhaps the sassiest toddler I have ever encountered.  I would love for her to be always happy, but that is asking for the impossible.

• People with Down syndrome are difficult to understand
• People with Ds do have difficulty speaking due to the low muscle tone (hypotonia) of the tongue, cheeks, and lips.  Their mid-faces tends to be smaller.  All of these physical characteristics can lead to difficulty in producing speech and some people may sound as though they have a lisp.  This does not mean people with Ds cannot talk nor does it mean they are difficult to understand.  
• My aunt, however, is very difficult to understand if you are not around her all the time.  However, I know of others with Ds that can speak clearly with excellent pronunciation and enunciation.  I believe as with all people, speech varies from person to person.
• My little Ellie has trouble saying actual words, but trust me when I say anyone can understand her.  Her SCREAM speaks volumes and people from here to Europe to Asia all understand that she is angry.  Her infectious smile communicates that she is happy.  Her emphatic waving followed by blowing kisses lets everyone know within a 5 mile proximity that she is saying "hi".

• People with Down syndrome cannot get married
• There are many individuals with Ds who have tied the knot in recent years.  Monica and David are a fine example.
• Even if there is no matrimonial bliss, there is definite dating happening in the Ds community. Aunt Peg had the same boyfriend for many years. 

• People with Down syndrome live with their parents or in group homes.
• Again, not entirely true.  There a adults with Down syndrome who do live with their parents, but I also have some personal friends from college who are still living with their parents.  What is the big difference?  None!  There are those with Ds who live in apartments, who have roommates, or who do live in group homes. My aunt is thriving in a group home that is set up like a college campus.  She has her own room in the female building.  Across the way is the male building.  She LOVES where she lives.  She has also lived with my grandmother at times and she even lived in an apartment with a roommate. 
• There are so many options and it really depends on each person's abilities and preferences. Living independently, living with supervision, living in a  group home, and living with parents are all options.

• People with Down syndrome tend to bag groceries 
• I recommend this post: I don't want her to be a grocery bagger
• Do not ask me why I assumed this.  

I am certain that there are still many myths that I hold onto about Down syndrome and disabilities in general, but my daughter is showing me that she is a unique individual with definite likes and dislikes, strengths and weaknesses, feelings and personality.  I am continually learning from Aunt Peggy and from Ellie and perhaps, hopefully, other people are learning from them as well.

Today's post is a part of a Disability Blog Hop hosted by With A Little Moxie with a topic of "The Influence of Disability"

Preparing for "big kid" school

Once children with various disabilities and delays turn 3 years-old, they are kicked out of graduate from the governmental Early Childhood Intervention [ECI] program and enter the public school system.    Once in the public school system, Ellie will attend the preschool-preparedness for children with disabilities [PPCD] program.  As Ellie's third birthday rapidly approaches, we are starting our transition and this mama bear is having panic attacks and new white hairs sprouting up daily.  A few years ago, I never even knew there were all of these acronyms let alone what they stood for.  Truly, it is like learning a new language so please bear with me if I happen to get them slightly wrong.

Yesterday, Ellie and I met with the school system for a "screening". This screening was more of a formality as it is used to determine if Ellie has delays in communication, gross motor, fine motor, and/or cognition, etc to warrant a further assessment.  Having a diagnosis of Down syndrome, it is generally assumed that she will have some delays in the above categories and it is assumed that she will indeed enter PPCD.  However, screenings are required on everyone and thus, we headed off to the elementary school where I felt a pang.  A pang that my little baby is actually a little girl on the brink of entering school.  SCHOOL!  Her more comprehensive assessment will occur the last week of August to determine exactly what Ellie's needs are and to help formulate an Individualized Education Plan [IEP].

As with anything that involves Ellie Bellie Bear, the screening was rather interesting.  First off, she behaved better than usual (maybe she will behave beautifully in school???).  That does not mean she was well behaved by any stretch of the imagination. No, this little Bearity Bear did not spontaneous sprout angels wings and don a glowing halo, yet she seemed to follow more directions than usual and she sat for longer periods of time.  Perhaps it was the novelty of being in a large room overfilled with new toys?  I do not know if her showing off was a good thing or a bad thing.  You see, I want her IEP to really focus on areas that Ellie needs help with.  Attending to activities, actually sitting for more than 5 seconds, and not continuously running around and climbing like a possessed monkey are just a few areas that I would like to be addressed in her IEP.

Anyway, Ellie demonstrated her mad climbing skills as well as her propensity to mouth every single object in the room.  She blurted out "car" and "ball" as well as screamed "wee" while pummeling down a slide.  Little show off!  She fed the baby, rocked the baby, walked the baby, and then chewed on the baby.  She demonstrated her knowledge of the shape sorter all while eating a black crayon.  Yes, a black one this time.  I think it was because I told them to remove the red crayons.  I am not sure why Ellie has this propensity to eat the red crayons, but now it looks like I need to add black to the list.  When I say eat, I mean eat.   As in takes bites of the crayon, chews, swallows, and repeats until the crayon is completely devoured or is deftly removed without me losing any digits.  Do not even attempt to remove the crayon for her mouth.  Unless you do not value your fingers, then by all means, go fishing for the crayon.  One the bright side, at least the screening team was able to witness Ellie's excellent chewing abilities.  I think of it as a feeding assessment.

Ellie did run across the evaluation room multiple times, but she did sit for a bit and stack blocks, sort objects by colors, complete a puzzle, and work on Mr. Potato Head (all while mouthing each piece).  The speech pathologist asked me if Ellie was always this quiet.  Quiet as in silent while playing.  My answer, a sad "yes".  Yes, my daughter is quiet, unlike me.  She rarely makes a noise while playing and when she does, it is this adorable happy little humming noise.  It really is rather cute. Occasionally, she can be heard making a sound approximation for an object such as a car, a baby, or a cow.  While it saddens me that my little girl doesn't engage in babbling or jargon, I am relieved that the screening team was able to witness this and document it.

As I said earlier, I want my daughter to have a very comprehensive IEP which tackles many goals that are appropriate for and tailored towards Ellie.  On the same token, I do not want her teachers spending significant amounts of time on tasks that Ellie Bear has already mastered.  I want her communication and sensory behaviors addressed and I believe that in that brief one hour screening, the diagnostic team was able to get a good glimpse into the Ellie's development.  I am hopefully that the little stinker Bear will rock her assessment come late August.

The Rainbow Team

It is happening folks. . . remember that purple hair dye I was talking about a few months back from You're Drying Your Hair WHAT Color?  No, I am not getting more white hairs.  I am now getting gray hairs courtesy of Ellie's mind boggling escapades, but that is besides the point.

Phase 1 of the 50 for 50 fundraiser has been met.  Over $3,000 has been raised for the The Second House that Love Built.  Let me give you all a very big fat "THANK YOU!" for all of your help and support!  All of the funds raised are going directly towards Orphanage 50 in Kalinovka for building the second building through the Happy Child Foundation.  The happy home will house up to 9 girls in a sprawling home-like setting, rather than having up to 30 children with one care provider.  This home will have a lounge, a kitchen, bedrooms, playrooms, and classrooms where the girls can be educated and play!

The future sight of the second house of Orphanage 50

the FIRST House that Love Built
through the Happy Child Foundation.

Jane from Flight Platform Living is drawing her first prize in honor of raising those greatly needed funds so be sure to head on over to her blog when you get a chance.  Also, the cheeky little lass has gone full-blown rainbow in celebration!

See lovely pictures of Jane in all of her rainbow glory.

I know that you are all anxiously awaiting for me to debut my fabulously died Barney-Purple hair, but you must wait.  For you see, our little Bobby still desperately needs funds (and a family!).  So before I whip out my manic panic and experiment on these bouncy locks of frizz, we need to help Bobby's fund reach $3,000.

I know that we can do this.  Even if you are unable to donate money, you can spread the word about Jane's fundraiser and show Bobby's pictures.  Because wouldn't it be wonderful if Bobby's family were to find him as well?




In celebration of The Second House that Love Built, I will be streaking my hair with some other color--I am taking votes.  Suggest your color in the comments section!

The remainder of my hair will be dyed once we reach Bobby's $3,000 mark!




For more information:

The Second House that Love Built Fundraiser.
Orphanage 50 aka The Chernigov Facility at Kalinovka
Happy Child Foundation--The Happy Child Foundation is a non-profit organisation which strives to improve the lives of impoverished, neglected and diseased children by harnessing donor funding, personal contacts, community resources and skilled expertise.