Phoebe: Forever Family Found & Give Away

Sweet Phoebe has never been far from my mind.

You might remember me writing about her here.

It is no lie when I tell you that my heart nearly stopped when I stumbled across her sweet face on the Reece's Rainbow page.  It was a complete accident and yet here I was staring at this beautiful blond-haired angel with a smile just like my Ellie's.  I thought that surely the Lord was talking to me, after all, I signed on RR to see how Daniel was doing and some how I ended up in the "0-6yo Girls with Down syndrome" rather than the boys' section.  Surely it was a sign!

Perhaps it was not the sign I thought I was getting, yet my heart soared when I saw her profile relocated to the "My Family Found Me" page.

Announcing the Smith Family!  I actually do not know the Smith family unlike so many of the other families that I blog about.  However, I am following their journey and I truly believe that our Phoebe will thrive with the Smith's.   That she will be loved beyond measure.

Currently, the Smiths are running a Give Away to help bring this little ray of sunshine home to Zanesville, Ohio.  Details on the Give Away are listed on their blog
Saving An Angel.

Happy Memorial Day

Ellie would just like to say:

Happy Memorial Day!!!!

Memorial Day weekend always falls just around Andrew's birthday.

Rather than doing our usual huge, ridiculously crowded BBQ this year, we opted to go low-key and just have Andrew's friend from high school (and his wife who is also my friend from elementary school) as well as Andrew's parents.  Mama Dunja and Papa C drove down from Plano to enjoy. . . 

You guessed it--Ribs!!!!  After all, what is a birthday without ribs?

Or cupcakes with homemade butter cream vanilla icing?  

Let me just lift my dress up here.

Of course we fed the Bear cupcakes and ribs.  She ate them in true Texas style.  Photos coming soon. . .

It was a nice weekend to just "kick our feet up" and enjoy good company.

Happy Birthday dear Andrew!  Happy Memorial Day everyone!

Part 2: What is Sensory Processing Disorder?

Part 1: Punch In The Gut: Sensory Processing Disorder

Good old Mama Bear completely kept it together in Dr. F's office until, well, the elevator door "binged" to let me out into the world.  It started off as a lip quiver and a few tears escaping.  By the time I had Ellie buckled into her car seat, I had moved into full-blown sobbing.

I cried because:
1. Didn't Ellie already have enough on her plate?  (insert the usual "Why?" questions here).
2. Facing the unknown is scary and I didn't and still do not know much about SPD.  Will I ever have all the answers?

That brings me to:  So What Exactly Is Sensory Processing Disorder [SPD]?

What?  We are going to talk about this again?
You are witnessing a temper tantrum.   Yep, not always happy.

If you happen to be like me, Sensory Processing Disorder [SPD] is a new experience and a bit confusing.  Okay, it is really confusing.  As you start to read all of the checklists and behaviors that might be associated with said disorder, you start to think “hey, I have that.” or “OMG, my child has that for sure!”.  The fact of the matter is that everyone has some of the behaviors on the checklists and that is absolutely typical.  It is true.  What makes it a disorder is that it affects one’s ability to complete tasks, learn, and / or communicate.  The sensory issues are so severe that they impact daily activities of living [ADL].

Sensory Seeker: But look!  I am sitting so calm and pretty.

So yes, while the tag in your shirt is driving you nuts and as you are typing you are jiggling your legs, this does not mean you have SPD.  Unless of course you are failing out of of school/unable to work because you cannot think of anything else but the tag in your shirt.  It feels like fiberglass etching into your skin. . .

Anyway, I digress. Let’s go back to the beginning. 

The beginning sounds good to me!

History:

While SPD may seem like a relatively new phenomenon, it was studied by Dr. Anna Jean Ayred, PhD, OTR since the 1960s where she coined the term “sensory integration dysfunction”.

Ever hear of the book “The Out-Of-Sync Child” by Carol Stock Kranowitz from 1995?  This author touches on SPD and that was in the mid-1990’s.

Since then, starting around 2007, Sensory Processing Disorder and Sensory Integration Disorder have become more widely studied.   HOWEVER, there is no actual ICD-9 medical code for SPD. . . YET.  An ICD-9 is a diagnostic code used by medical providers, OTs, etc.  For example, Down Syndrome has a ICD-9 code of 758.0  Without an ICD-9 code, billing to insurance and obtaining therapies is rather difficult.  


How is it that a disorder that has been around for over 50 years does not even have its own diagnostic code?  How is it that there is no definitive diagnostic tool for SPD?

What?  Really?  Insurance issues?  Never ever heard of that.

The Senses and the Process:

Many of us know the most common senses of taste, smell, touch, auditory (hearing), and visual, but there are also other senses such as body position in space, movement/vestibular.  These senses are all translated by receptors in the body (ie skin, muscles, tongue, tendons,) that send signals to the brain.  Yep, the nervous system.   The thing with SPD, is that these sensory pathways are not functioning properly.  The sensory impulses are not relayed to the brain as they should be.  

Hypo Vs. Hyper Sensitivity:

Now, not all of the senses are affected.  For some people, tactile is the main sense affected for others it is visual and auditory.  Some people are hypo-sensitive (ie indifferent to pain, temperature, touch, sounds) and some may be hyper-sensitive (pulling back from touch or covering ears due to loud noises or covering the eyes from bright lights).  In fact, those with SPD can have BOTH hypo- and hyper-sensitivity.  

Yes, I can get bows and clips in Ellie's hair.  It is difficult and she is always trying to run away.  Washing and combing her hair is another matter entirely.  After 17 months of trying out different things (some recommended by our ECI therapist and some just me "experimenting") we can now actually get Ellie to stay in a bathtub.  Miracle!

For instance, Ellie is hyper-sensitive with her face and head.  She throws a huge conniption fit if her face is being washed or if her head gets wet.  Bath-time was hell on Earth.  We probably had the filthiest baby ever because bath time = Bear Torture Time.  


The rest of her body and her mouth are predominantly hypo-sensitive as in she is always in sensory craving state with her mouth.  Something such as a toy, clothing, lovie, teether, paper, toothbrush, you-name-it is always in her mouth.  


She also craves motion--the rocking, the swinging, the bouncing as well as the movement of HEAVY objects.  That all involves the touch /  tactile sense.  She also has some vestibular issues--she is clumsy.  She falls a lot and at times, it looks as though she is trying to walk straight, but ends up going to the left (or right).  Her muscles, joints, tendons, and ligaments are not working in sink with her brain. 

What do you mean "oral sensory craving"?  

Here is a YouTube video of Ellie walking.  Sorry it is sideways. . .not sure how to fix that.  Anyway, she is more clumsy than usual here, but you get the idea.  Sorry about the lack of clothing too.

So how is it a disorder? 

Some of these things every kid does so how is Ellie different?  

She is developmentally delayed so doesn’t some of this make sense?

Don’t most toddlers have bouts of clumsiness and falling?

Don’t many kids like to mouth things?

What child does not love to swing or be bounced?

The top two pictures show "functional" play as she is "feeding" the baby.
The bottom two show how Ellie is literally feeding Andrew.
This is in preparation for when Andrew and I are both old and need assistance.  Ellie can officially help us :-)
The point is, she just picked this up a few weeks ago! Super Ellie!!! Prior to that, the cups were thrown as was baby.

I know.  I know.  This is why I was so shocked and why I am getting 2nd and 3rd opinions.  Come on!  Most of this sounds typical to me.  Well, not the crazy bath stuff (it was getting dangerous with her trying to escape.   Oh and the screaming!).  Not to mention her oral fixation.  Still, much of this seems typical to me.  

The fact of the matter is this: it IS typical UNLESS it impairs social interaction, learning, communication, and/or play (work).  At least, that is what I am able to understand. (Remember, this is not my area so I am compiling all of this data from research.  I will include resources in Part 3).

Do you see this?!  See it?!  This is a HUGE milestone for the  Ellie Bear!
These are IKEA nesting cups and typically she just walks around the house throwing each cup as she goes.
Last week, I got her to build a tower on her own (we had been doing hand-over-hand for a while).
Yesterday, nesting the cups!  Super Bear!!!!!

It is because of these reasons that Dr. F of developmental and behavioral pediatrics has thus diagnosed Ellie with Sensory Processing Disorder.

“...She has made nice gains in her gross motor development, but continues with deficits in the area of language, fine motor, and has significant sensory processing deficits, which are interfering with her ability to learn.”




Ellie is still the same Ellie.  The same adorable, feisty little Bear-Bear that is trying to conquer the world with her amazing cuteness and sassy personality.  No label will change that.  She loves and is loved by all who meet her.  

Coming soon:

Part 3: More About Ellie and Treatment for SPD + Resources

The Fun Never Stops: Dealing with Insurance

Many Faces, GIVE AWAYS, Good News

Let's break away from the SPD stuff (part 2 is coming, I promise) and have a happy post.

I have a need for another "Many Faces of Ellie" segment.  Nothing puts a smile on my face faster than my little Bear-Bear and I hope, that her sweet little smile and zany antics do the same for you.

Uh oh.  There goes Mama with the camera again.  Oh great, now she is experimenting in Photoshop.  She says this is "Saturated Slide Effect".  Oh goodness mommy.

I am biting my nails, concerned about what mama is going to post next.

I pledge allegiance to the flag of the United States of America. . .

This is my sweet and innocent look.  Is it working?

How about now?

Now?  Don't you want to give me whatever I want?  Hmmm?

Here is my serious thinker pose.

What do you mean it isn't working?!  But but. . .cupcakes!  Please?  Please?
Maybe on Thursday when it is Daddy's birthday?  Please Please.

Other news:

Remember this story?  Remember when the judge in Russia said "no" to little Kirill's adoption?  Remember how she said Kirill is better off in a mental institution all because he has Down syndrome?

Kirill & his heart mother

Well. . . we prayed and prayed and spread awareness.  Today, the supreme court has granted the Davis Family custody of Kirill.  You can read more about this exciting moment here.   Another orphan "saved" and united with his forever family!!!!


Our work is not done (it never is, is it?).  I have 2 important and exciting Give Aways to share with you.

For those of you who are new to The Chronicles of EBB, visit the post that started it all.  The post that opened my eyes.  Or view this post that has a heart-wrenching video about life in EE institutions.

Alexander 

The Taylor Family's "BANG for your BUCK" Give Away is going strong, but is almost over.  To get a chance to win cool prizes such as a Kindle, jewelry, giftcards, and more visit their blog.  All to bring dear Alexander home.

Albina:  Are you my mama?  Are you my papa?

A Perfect Lily is sponsoring another Give Away for sweet Albina.  A very generous family has a soft spot for dear Albina. . . how can they not.   Look at her sweet face and soulful eyes.  They have offered to match dollar-to-dollar amount up to $5,000.  To help sweeten the pot, a donation enters you in a chance to win a Canon Rebel Digital SLR camera.

Thank you dear cyber friends!

Punched In The Gut: Sensory Processing Disorder Part1

I do not even know where to begin.  I really do not so the words that I am writing may not flow well or even make sense.  For that, I apologize.  So, I will try to start at the beginning.

This beautiful girl brings such joy.

Prelude:

A few months back, our pediatrician referred Ellie to the Developmental Clinic overseen by Dr. F who is a pediatric developmental neurologist.  This was no huge surprise since we were seen in both the Developmental and Down syndrome Clinic just after Ellie was born.  We were supposed to have regular follow-ups, however the clinics closed as a result of the doctor needing to leave.  

A few weeks before for the appointment (we have waited months for), I completed a 12 page-questionnaire.  Some of it asked about basic medical history and the rest was comprised of developmental and behavioral questions.  Many of the questions did not apply as Ellie is not in school.  One of the questions was “What to you hope to get from this visit?”.  I left it blank as I had no idea.  Actually, I wasn’t truly sure why we were going.  The pedi said to go just to make sure “we aren’t missing anything”.  

The Visit:

Not even 5 minutes into the visit, Ellie bit me.  Hard.  She hasn’t done that in over a month.  Perhaps it was the stress of being with a new doctor in a facility?  She also removed my glasses and started pushing all of the toys and furniture all around the room.  None of this seem out of the ordinary to me.  Come on, tons of kiddos tug on jewelry, steal glasses, and move furniture around. 

Meanwhile, Dr. F is asking me questions all while observing Ellie.  I like Dr. F.  I think she builds a great patient rapport, is knowledgeable, and listens.  However, that does not mean I agree with everything she says, but more on that later.

Then, the standardized developmental screening comes in.  It felt like a modified version of the Denver Developmental Screening tool that I used as a NP.  Ellie shocked me in showing us her toes when asked.  I thought she didn’t know ANY body parts!  Smart girl!  

Things went down hill pretty quickly.  

Uh oh.  I am not liking this conversation.
Me neither Bear.  Me neither, but never forget that I love you.

Preliminary Observations:

Dr. F goes “you know she has sensory issues, correct?”.  Of course, I know--recall the bath issues.  Read here.  She also cannot stand to have her hair brushed or her face washed.  She throws a huge fit when on her back, especially with diaper changes.  

She also has “stim” (stimulatory) behaviors such as the head banging while in our laps or hand movement near her face (Note: Stim behaviors are very common in children with developmental delays and are typically not of concern unless it prevents them from engaging in other activities and learning).  

Ellie also mouths everything.  EVERYTHING.  All objects must be mouthed before playing with them.  You also know about her blankets.  I had mentioned her mouthing a few times to our ECI therapist who reassured me that she is in a oral stage and exploring her environment.  It never sat well with me, but knowing Ellie is cognitively delayed, it made sense.

Dr. F told me it was more involved than that.  I said, “She doesn’t have autism though because she is socializing”.  Dr. F agreed because Ellie climbed into her lap, she made eye contact, and tried to engage in reciprocal play.  So, I wondered what exactly she was getting at.

As the testing went on, it became apparent just how much she is craving oral stimulation.  So much so that we almost could not complete the test.  See, these were all new objects and the mouthing was more excessive.  So excessive that when it came time to “brush the baby’s hair”, we couldn’t get the brush out of her mouth.  I finally had to put something else in her mouth to get the brush out.  THEN, and only then would she cooperate.  And so the test went on like that.  

This cannot be right.  Look at what I can do?!  I am a climber.
I like adventure and challenges!
Yes, Ellie Bear!  You are so determined and motivated to do amazing things.  We are so proud of you!

The Gut Punch:

Then I heard the words Sensory Processing Disorder.

WHAT?!?!  What is that?  I did not learn that in school!  What does that mean?

I wanted to argue, and did argue, that she has Down syndrome and thus some delays.  These behaviors are typical in younger children so isn’t this normal? 

(Ellie has more behaviors, but are not listed here.  I never considered these abnormal and thus never mentioned them to ECI.  I am STILL not sure these behaviors are “atypical”, but again, more on that later).

Nope. It is not normal when it interfers with playing, communication, and learning.  The constant on-the-go, flitting from one activity to the next, the heavy object moving (she moves ridiculously heavy toys, furniture) prevents her from accomplishing tasks.  

The oral sensory cravings are affecting her ability to communicate: 1. talking because something is in her mouth; 2. pointing/signing because her hands are too busy holding that thing in her mouth.  She is also have trouble playing with toys because she has to mouth them.  

Denial / Arguing:

I wanted to say but, but. . . “it isn’t as bad at home”.  She has energy and she does play with her toys.  Yes, she mouths, but she will play with them.  She puts coins in the piggy bank. She stacks the rings. She presses buttons to activate toys.  She will touch the animal’s fur on touch-&-feel books.  Yes, she is clumsy and falls a lot, but does that does not necessarily mean she has vestibular problems.  Aren't all toddlers klutzy? 

Panic Setting In:

Then Dr. F starts to list all of these therapies that are needed.  Visions of a lost childhood flashed through my eyes.  My daughter is social.  She loves other children.  We would miss playgroups, music class, the park because instead we would be in therapy.  I was told to increase her speech therapy.  Ellie need an occupational therapist with sensory integration experience.  She will also benefit from applied behavioral analysis [ABA] therapy.  Then I am told ABA is rarely covered by insurance and most places do not have experience with kids with Ds because these therapies are normally for kids with Autism.  

Depression / Anger:

I am devastated.  Truly devastated.  I know that SPD is not the end of the world.  I know that, but my sense of “normal” has been destroyed.  We finally got into our groove of balancing therapies, doctor’s appointments, and social life and now this.  More therapies?  A lot more therapies.  Another label to slap on my child? 

It hit me in the gut. Really, I am nauseated and anxious.   Frustrated and crying.  Angry.  So very angry.  Why?! I shout.  Why why why??? Doesn't my little girl have enough on her plate?!?!   

All of these things that I thought made Ellie spunky (the moving heavy things around, loving to swing and be thrown in the air, loving to brush her teeth with the motor toothbrush, the dancing and bouncing while in our laps) are actually symptoms of a disorder?!

When I headed to this appointment, I truly expected them to say “yes, she is delayed and make sure she is in ECI and getting therapies.  She is doing great.”

Our plan as devised by myself, Andrew, and Ellie’s ECI therapist:

Where do we go from here?  We are not sure yet for we are obtaining 2 more opinions to figure out what is truly needed and recommended.  Yep, three different opinions.  I need a tie-breaker.

1. A Sensory Eval from an Occupational Therapist that works with our current ECI therapist.  This will be done in the home setting with Ellie’s current therapist and an OT
2. A Behavioral Analyst evaluation at a center that does ABA therapy 

Don't worry Mama.  I am still the same snuggle Ellie Bellie Bear.

I know, dearest Ellie.  Mommy loves you all the same.  I love you so much and will do anything for you. Nothing will ever change that.

Up next: Part 2 So What Exactly Is Sensory Processing Disorder?

Cognitive Processing

It has documented in numerous studies, articles, and books that children with Down syndrome have cognitive delays.  I do understand that, but I believe there is WAY more to it than that.  My belief is that that 1. certain things take longer to process (hence the cognitive delay); 2. the processing may be different.

While it may not be readily apparent at times, I strongly believe that Ellie absorbs everything.  EVERYTHING.  However, she has to "connect the dots" and perhaps she connects them in a slightly different order.

For instance, we are trying to teach her sign language.  She will use signs, but not necessarily the correct ones.  She has learned that making a sign gets her something.  She will sign all the signs she knows until she gets what she wants.

Sometimes I see Ellie performing behaviors that are on par with a 12 month-old.  Ellie is 20 months.  I also see behaviors that show me she is advanced--she has her terrific, I mean terrible, twos down pat.  She is the master of terrible twos.  Save me!

In speech the other day, we were trying to get her to sign "more" to get more bubbles.  She shook her head "no".  What?!  Where did she get that?  I say "no", but I do not shake my head.  Great, she now knows "no".  Stubborn little Bearity Bear.

The big brag:
The past few days I have whipped out the broom with dustpan attached to sweep up crumbs under her chair.  Typically I just use the dust vac.  This is what Ellie did last night:

I apologize for the adorable half-naked baby picture, but there was a peanut butter incident. Note that PB does not make good hair gel.

She proceeded to push the broom to her play area.  Once there, she opened a plastic bin in the IKEA shelf and removed her own lime green toy broom/dust pan!  She made the connection!   Now rather than imitating Mama Bear, she placed her broom into the play baby stroller and walked it around the living room. . . BUT she MADE the connection!  She put it all together that we both have brooms with dust pans.  Proud Mama moment!

Ellie is clever.  She truly is.  She problem solves.  The Bear-Bear decided that she needed to climb on top of a huge rubbermaid container in Andrew's office.  She couldn't quite reach it so she walked into the bedroom, grabbed Andrew's laptop case, and brought it back to the office.  She laid the laptop case in front of the rubbermaid container.  Chicka-Boom stood on-top of the laptop case and managed to climb onto the container.  See!  Problem solving!  She is smart!  And giving her mama heart attacks.  "Ellie, I proud of you, but no more climbing!"

The most important thing to take away from this is children with Down syndrome do learn.  They absorb everything and they are taking in their surroundings.  They learn.  Constantly.  It just may not be readily apparent to us.  Those gears in the brain are working.  The synapses are crackling.  Have high expectations.

Also, do not forget the "Big BANG for your BUCK" Give Away is still going strong over on the Taylor's blog.  Help bring Alexander home to his forever family.  Plus, new prizes have been added!
http://taylorvillethree21.blogspot.com/

The Story of Christi and Austin

East Dallas Couple With Down syndrome Discovers Joy, Challenges of Marriage

http://tinyurl.com/3zcgnhd

I just LOVE inspirational stories and this one is no different.  Nothing like starting off the day with a dose of goodness and, of course love.

Christi and Austin

The above article is absolutely beautiful and insightful.  A story about long distance love.  A story about a parent's undying love.  A story about friendship.  A story about never limiting your expectations of your child.  Encourage your children to reach high. . . oh and did I mention the couple in this story rock an extra chromosome?

As with any article, I love to highlight quotes that are particularly profound or inspiring, but I also like to discuss the areas I disagree with.  In this case, I think it is just the phrasing the article's author uses.   

“The average baby needs only marginal parental guidance to learn those basic tasks. But children with Down syndrome — with about half the IQ of the typical child — must be dragged through their early development. It is tedious, pain-staking work.”

I find a partial truth to this.  It is a great point to all of my friends who "just don't get it" with the therapies.  After meeting many people in my life, I am relatively certain that my 20 month-old Ellie has a higher IQ than many people I encounter on a daily basis.  When you read the research, it is suggested that many people with Ds have mild-to-moderate mental retardation so yes, I suppose that places them below average on the who IQ scale.  However, I prefer not to look at the IQ.  There are those with high IQs, but no common sense so what does that mean in terms of smartness?  Nonetheless, Ellie Bear is going to University of Texas [UT]. Go Longhorns! (UPenn is just too far away from Mama Bear).  So I am not overly concerned (hey, she already knows red & yellow and most of her shapes!).

Also, I would not say "dragged".  Yes, Ellie needs much much more than minimal parental guidance to reach those oh-so-precious developmental milestones, but well okay, sometimes it is drrraaaagggggiiing, especially when trying to get her to stick to a task or when signing for food.  Mostly, however, I turn therapy into a game, thus making it fun.  Therefore, Ellie is "playing" while I am guiding her and encouraging her.  The author is correct, in my opinion, that it is pain-staking  and at times I want to bang my head against a brick wall. Then, suddenly, it is as though Ellie has "connected the dots", as my father used to say.  Triumphs!  The Amazing Ellie!!!!  Proud mommy moment :-)

With this beautiful article, there are those quotes, those "ah-ha" moments that just hit home.

“That he [Austin] would, like her other two children, have his own life, long after she was gone.”

The entire article proves this quote.  True, Ellie (and Austin & Christie) may need a bit more guidance, such as someone helping them with the grocery shopping or when issues in the apartment arise, BUT our children WILL have lives of their own.  All any parent ever wants is for their child to be happy.  To be full-filled.  Austin and Christie found their happiness and their full-fillment!

Nothing like true love to make a great story.

Christie: 

“Then I guess I made the first move. I kissed him. I kissed him that night … the first night we met.

“And I’ve loved him ever since.”

Don't forget to enter the Bang for your Buck Give Away for sweet Alexander:

http://taylorvillethree21.blogspot.com/2011/05/more-bang-for-you-buck-fundraiser-and.html