"I don't want her to be a grocery bagger"

I was and perhaps still am a stuck-up snob.  While I hate to think that I am all high and mighty, the fact of the matter is that I used to walk around with my big nose in the air.  I was not truly aware of this character flaw until I had Ellie.  Shortly after her diagnosis of Down syndrome, I found myself shamefully thinking I don't want Ellie to be bagging groceries for the rest of her life.  Just because you have a child with Ds doesn't mean the stereotypes fly out the window.  Yes, I was guilty of believing in a stereotype and yes, I was a narrow-minded snob.

There are two issues at hand:

1. There is absolutely nothing wrong with bagging groceries.  
2. Not all people with Down syndrome are automatically relegated to bagging groceries as their only source of employment.

While I was looking inside myself at my ignorance, I met Danny. Danny is a middle-aged gentleman who is a bagger (and corals the carts) at my local grocery store.  He is good natured, hard working, and enjoys his job.  Oh and he also has an intellectual disability.  

Have I even mentioned that I loathe grocery shopping?  I feel like I am in the middle of a chaotic traffic jam of carts with no road/aisle rules.  Nearly ever trip to the store results in me almost getting mowed down by an aggressive shopper in the peanut butter aisle.  Ellie enjoys letting all of the shoppers know just how much she does not want to be a part of the shopping experience.  She wails and screams and carries on while I bribe her with crackers and chewy tubes.  Keeping her in the cart has turned into a circus performance.  However, when we arrive at the checkout line and Danny is starting to bag our groceries, the whole atmosphere changes.  Ellie becomes happy, which makes this mama bear relax a bit.  Danny has a ready smile and engages my daughter in a game of peek-a-boo.  Plus, he is an expert bagger in that he is efficient, the cold items are bagged together, the bread is carefully placed on top, and the eggs are safely protected.  He never places too many items into one bag so that my arm would snap off due to the weight.  I say all this because there are so many other people who think nothing of mashed bread and placing the bleach in with the produce. 

Danny is good at his job and he enjoys his job.

Since meeting Danny, I have fallen off my high horse and recognized that I need to get my prissy nose out of the air.  Bagging groceries is meaningful employment that requires good interpersonal skills, fine motor coordination, and the ability to bag foods in such a way that they do not become damaged or so that the cleaning supplies do not taint the food.  It is a job that requires punctuality, working under a boss, working well with coworkers, dealing tactfully with irate customers, and punching the clock on the weekends, evenings, and holidays.  It is an honest way to earn a living. 

This brings me to issue #2, there are also other options.  

Sometimes I wonder why I was so narrow-minded in assuming that Ellie would automatically be bagging groceries.  I have read about many people with Down syndrome or other intellectual disabilities who work in preschools, who manage restuarants, who work in the entertainment industry, and who go to college. For instance:

• Katie Apostolides graduated a few years ago with an associates degree in Science from one the 100 US colleges that offers post-secondary education for those with intellectual disabilities.
• Will McMillian worked at a children's hospital before starting college to study presidential politics.
• Tim Harris is a 25 year-old young man who runs Tim's Place, a diner in Albuquerque.
• Bryann Burgess of South Carolina is a teacher's assistant hoping to become a full-time teacher.
• Ryan, the 6 year-old handsome boy who models.
• We all know about Lauren Potter from Glee and Christopher Burke who acted on Life Goes On.

No one knows what the future may hold.  Ellie is not even 3 years-old yet and while she has definite likes and dislikes, who knows what her interests will be once she reaches adulthood?  Who knows where her strengths and abilities lie?  While I would like to think that my little girl will head off to college, that may not be the case.  What I want most is for Ellie to be successful and happy.  Working in the local grocery store as a bagger is a career option for her, one of perhaps many for my daughter and for those with intellectual disabilities.  If Ellie finds herself happiest in this form of employment, I am okay with that.  If she prefers sheltered workshop, preschool assistant, or any other form of employment, I will support her as long as she is happy.  After all, isn't that what we all want for our children-happiness?

*Danny's name has been changed to protect his identity.
**I apologize for the inconsistent font.  I have not been able to fix this issue.

The Many Faces of Ellie

Ellie is channeling Dr. Evil

Photography experts: every time I shoot in this room, the blue walls give a greenish cast to the skin and the photos are rather grainy.  Do you have any tips?

Sensory Ideas for in the Home

It has become rather apparent that I need to significantly rework Ellie's sensory diet.  By that, I mean that I need increase the amount of motor & vestibular sensory input her muscles and joints are receiving so that she can settle her little self down without becoming injured.  This type of sensory stimuli is created by bouncing, climbing, crashing, swinging, rocking, and pushing/pulling heavy objects.

If you are interested in oral sensory ideas, please click here.

Let's not have anymore of this, Miss Ellie.

As I am certain you have noticed, many of my recent posts have illustrated Ellie's uncanny ability to climb--the dog bowl incident, the above dresser incident, the vaseline incident.  The list goes on and on.  Much of this is typical toddler behavior and some of it is Ellie trying to fulfill her sensory needs.  Sadly, I have not been very good about creating a safe, in-home environment.  I cannot always take her out back in the blistering heat as our mini-playscape is scalding hot in this 100+ degree weather.  We do not always have the luxury of jaunting off to Chick-Fil-A's indoor playscape either.

This is an ever evolving work in progress, yet here are a few SAFE, high-sensory input activities we have installed in our home.  Hopefully, using some of the "toys" will help curb Ellie's dangerous climbing and hanging off of the kitchen island/open dishwasher/oven handle habits.  There is so much more I would like to do, but I am trying to keep it low-cost.


1. Ball Pit
You can buy fancy ball pits, but if your child is pint-sized like my Ellie Bear, you can get a way with a kiddie pool and plastic balls.  I found the bag of 150 balls at Target for around $14 and I picked up a cheap kiddie pool.  The Chunky Chicken insisted on the pink pool.  Gag.  Anyway, I barely got the plastic pool in the house when Ellie tromps on into the pool with her baby doll and stuffed puppy.  She was having a blast rolling around.  Apparently, the plastic balls are superfluous.  Or not.  When I added the plastic balls, Ellie Bear yelled "ball ball BALL!" and giggled the whole time.  I do hope to purchase a little slide so that Ellie can satisfy her climbing cravings and slide right into the ball pit.  Be forewarned, plastic balls may end up everywhere.

2. Bouncy "House"
We will probably come to regret this, but we have turned Ellie's sleeping area into a makeshift bouncy house.  Ellie Bear enjoys bouncing and climbing and by using a large stuffed bear, multiple pillows, and the old crib mattress, we have made getting to her bed quite the obstacle course.  We also have a collapsible IKEA tunnel that we occasionally add into the mix.  It becomes a real party when our hyperactive border collie believes she needs to race through the tunnel and onto the bed.  Hmm, maybe we should have stuck with pulling the cushions off of the couch and letter Ellie bounce on those.

Anyway, the bouncing, climbing, and crashing are good exercises before bed if your child has SPD because it helps self-regulate--the heavy input into the muscles and joints helps calm.

3. Bean Bag Crash

This is very similar to the Bouncy House and can be implemented together.  Crashing into objects and/or people is seen commonly witnessed in children with sensory processing disorder.  Encouraging Ellie to crash into a bean bag gives her tons of sensory input.  She gets to crash all while feeling those little pellets in the bean bag close around her.  Right now, Ellie has taken to dragging the bean bag about the house, which I am okay with because it counts as heavy work.

Not exactly crashing, but rather lounging.

4. The Hopper or Therapy Ball
I bought a $10 hopper off of Amazon.  The common complaint on Amazon is that it is small, which is one of these reason I bought it for Little Miss Shorty.  It will probably break at some point although it seems relatively sturdy.  I am hoping that Ellie will get the hang of this bad boy sometime soon because right now she carries it around like a purse.  Until then, I help her balance on the hopper.  The hopper helps fulfill those motor cravings all while working on her core muscles as she tries to stay upright.  I love it because it wears her out!

Other items that might be fun, but have not tried:




5. Climbing Wall
Our ABA therapist found this on-line.  It looks like a lot of fun, but right now we do not have the wall space for it.  Placing the old crib mattress under this contraption would probably be a smart idea.  A brief internet search brought me to a Scandinavian website.  Further research would reveal if you are able to find it in the US.

Kid's Climbing Tree Wall

6. Swing

What I really want is one of these therapy swings.  Ellie uses this in therapy and she LOVES it.  Sadly, I cannot justify spending nearly $250 for a swing.

Airwalker Therapy Swing

7. Mini Trampoline
You can buy a mini indoor trampoline with a little bar to hold onto for about $55-100.  I have no recommendations for a specific brand.  Ellie cannot jump yet so I have held off on buying one.




8. Hang Bar
Ellie loves to hang.  I will hold her hands and she will lift her tiny feet off the ground and just hang.  Sometimes, she will hang off of our dishwasher (we have a stacked washer--she hangs off of the upper) which is quite dangerous for both herself and for the dishwasher.  Most of the hanging bars I have found are over-the-door ones for people who like to do pull-ups or hanging sit-ups.  Over-the-door would not be ideal for my little 33-inch pixy.  I would love to get a bar for her to hang off of, but I am at a loss for ideas.  What do you recommended?  What are your ideas?

Also, any recommendations for a little slide that I could use indoors?

Not Exactly How I Envisioned It

The Bear has been craving some serious sensory stimuli lately and I had this idea.  Actually, it wasn't my idea.  It was a brilliant idea that I conveniently stole from Elissa.  I bought a little kiddie pool and filled it with those plastic balls.  My thought was that it would:

1. Help Ellie with sensory integration
2. Be a lot of fun
3. Occupy Ellie so that my house does not turn into a disaster zone, again.

It started off perfectly.

I actually have no idea what is going on in this next picture.  Embarrassed to be caught on camera in this pink ugly thing?  Suffication by plastic balls?  Getting high off of the plastic toxins?  Or, wait, an actual nap?!

As with most ideas when toddlers are involved, this one didn't exactly go as planned.  First off, I am now the proud owner of this ugly, pink monstrosity.  Seriously, Bear, we had to get the pink princess pool?

I am also the owner of 150 plastic balls.  WHAT was I thinking?!?!?!  One-hundred and fifty.  Balls.  In my house.  There are balls bouncing and rolling across the floor and under furniture.  My cats are having a field day.   Remind me again why I thought this was a good idea?

Eh, at least she is playing rather than running around like a wild banshee.  I suppose it could have been worse.  I could have bought the 400 ball package.

Disability Blog Hop: say cheese!

This post is a part of the Disability Blog Hop hosted by Meriah at With A Little Moxie.  Today's theme is "say cheese" and therefore I am sharing with you pictures of the Chunky Chicken aka Ellie tearing apart our backyard.  It should be noted that all of these were taken before her little impromptu mud bath.  I really should have snapped some photos of Ellie mucking around in her Ellie-made spa mud treatment.  Her skin looks fabulous.

I have been informed that our dear Ellie Bear is not exactly chunky.  I blame all of her climbing on the slimming down because this little Bearity-Bear was a CHUNK!  Rolls!  Do you see those munch-on-me baby rolls?  Nom Nom Nom.

Seriously, where does she get it?

I am positive that I was never this naughty as a child.  In fact, I am relatively certain that a halo hung above my head and the angels sang a beautiful chorus all through my toddler, school age, and teenage years.

So, where does my little Bearity Bear get these ideas?  Sophie's water bowl is her new splash table.

Well, at least she cleans up after herself.

Or not.

So true.  

I am blaming Andrew for all of Ellie's escapades because she certainly didn't get any of this from me :-)

Happy Father's Day

The bond between a father and a daughter is completely indescribable.  My relationship with my father is so special that I am thrilled to see a similar relationship develop between Andrew and Ellie.

While I did not write this poem, I am dedicating it to the two most important men in my life, the two best dads.

Father & Daughter

by Heather Twining

The bond between father and daughter happens instantly, starting right at birth,

When a father first lays eyes on his little girl he loves her more than anything on this earth,

When a daughter grows older her father is the first man she will love,

And the last one her father will have trouble letting go of,

To her, father means the world, she means everything. 

When a daughter grows up to an adult and mature,

My Daddy with Ellie

Her father will always be there anytime she still needs a dad to help her,

To give her advice of just-for anything she will ever need,

The bond between father and daughter is the most important bond indeed,

It cannot be broken when she finds a man, and becomes his wife,

It cannot be broken even in the ending of either one's life,

A daughter will always have the memories of her father, her best friend

This bond has a beginning, but there is a never an end.

The bond between a father and a daughter is so profound

The love shared is well renowned,

From the beginning of his daughter's life, he is a changed man,

At that moment their eyes meet,

two souls instantly become complete.

Happy Fathers' Day to Daddy, Andrew, and all of the other dads out there!

Overwhelming Fear Over a Little Girl in a Pink Dress

My daughter is so beautiful that it hurts.  She is so amazing, so precious, and just down right sassy that my heart is over flowing with love for her.  How is it possible that she is my daughter?  She is a gift.  A priceless gift.  And I fear that I will lose her.  That she will be taken from me all to soon.

Is this something that all mothers feel?  Is this why mama bears are so ferociously protective of their cubs that they will kill a human or another animal that trespasses too close to their family den?

When Ellie was a little over 6 months old, when she went into anaphylaxis due to eating a small amount of infant oat cereal.  A surprisingly rare allergy.  I drove so fast to the nearest hospital and by the time I arrived, her little lip was swollen and she was gasping.  A high pitched squeak was released with each breathe.  I fear for her life.  I later on felt a chest crushing fear every time a little child walked by with a Cheerio.  A cheerio could kill her.  Those infant puffs could kill her.  Thankfully, she has outgrown this allergy.

When I watch my precocious little adventurer climb that 2-story playscape, I have moments of mommy panic.  What if she falls and breaks her neck?  Yet, I know I need to let Ellie develop her independence, test her boundaries, and practice her gross motor skills.

Every time I am in the car and I look back to see an empty car seat, I have a brief moment of fear. Oh right, the car seat is empty because I have a babysitter or she is home with Andrew.

Then there are those scarier times when Ellie has her routine blood draw.  Her complete blood count [CBC] is routinely measured to look for signs of leukemia.  A cancer that could ravish her body and could take her from this world, from me and Andrew.  A cancer, that while rare, is more common in children with Down syndrome.  Oh how my stomach drops and my heart freezes as I hear the nurse on the other line calling with the results.  Oh how my huge sigh of relief could be heard across Texas when I hear that "everything is normal".

Then last week, when I rushed Ellie to the ER at the recommendation of her pediatrician to rule out meningitis.  Again, adrenaline seized me and fortunately it all turned out okay.

Facebook and the internet are dangerous places.  Facebook and internet forums can be excellent avenues for support and yet, they are also where I learned about another little girl Ellie's age diagnosed with leukemia.  They are where I learned that a little cousin was in a horrendous car accident required multiple surgeries to realign her shattered bones.

I have seen too much.  It is my own fault for opting to work early on in my career as a pediatric intensive care unit nurse.  Many of the accidents and illnesses that I have encountered during my years as a nurse were rare incidents. They were unlikely and yet, they serve to remind me just how fragile life is.

I never knew it was possible to love someone so much, with every ounce of my being until I became pregnant. In those first few moments when I saw Ellie before the nurses whisked her away, I knew that life would never be the same.  Yes, I have a fear of losing my little girl and yet, it has made me forever grateful for each moment that I spend with her.  Tell me, am I the only one who has this fear?  Hold you little ones close and whisper those sweet words of I love you.

***

This post was written just after Ellie's meningitis scare, but BEFORE my cyber friend's little boy became severely ill with Stevens-Johnson Syndrome.  Sadly, the doctors are now stating that little K has Toxic Epidermal Necrolysis [TEN].  All of this from taking an antibiotic.  My heart is so heavy for my friend and her little boy.  He is a fighter.  He is strong.  His medical team is competent.  The care he has been receiving is excellent and so far appears to follow the treatment protocols for this type of illness.  Yet, I am scared for him.  Please, continue your prayers for K and for his family.  Updates can be found on his CaringBridge site---please email me if you would like the address.  Never take for granted your children, your spouse, your parents, your friends for it can all change so quickly.  Sweet boy, we love you so much!