IEP Meeting, Behavior, Vision

When I last left off, I talked about Ellie's regression and the need to move her into a different classroom setting.  I know that it needs to be down.  That it is best for Ellie at this time, but I am just not happy about it if that makes sense.

Last week we had Ellie's IEP meeting, which was completely anticlimactic seeing as I met with Ellie's Functional Academic Class [FAC] teacher twice and her new Functional Communication Class [FCC] teacher.  It was more of a formality - sign the paperwork.  I am really glad that I met with the FCC teacher in advance.  I felt so much better afterwards.  We discussed goals and she showed me in detail how she will teach Ellie and help her to accomplish her goals.  I think that this move will be good for her.

I was, however, not happy the decrease in inclusion time.  In FAC, she would spend 30 minutes with the 1st grade and then specials (art, music, and PE).  In FCC, she loses most of that. She does get reverse inclusions where they bring a typical kid in from the 1st grade to be with her for about 30 minutes. I don't really think that counts, in my opinion. The reason they are taking away inclusion time is because "with her behaviors, she requires too much redirection and is not getting much out of it".  My concern is, how can she learn appropriate social behaviors if she cannot be around and model herself after typical kids?  We did negotiate and decided that she can float into FAC for announcements, lunch, and recess.  With recess, she will remain with the 1st and 2nd grade class, which is good because there are 4 girls that love to play with Ellie.

Rather than wait until the next school to move Ellie to her new classroom, we decided to transfer immediately to the FCC room.  So on Monday she started FCC and I am told that she is doing well.  Minimal behavioral issues.  I think that I just jinxed her!

Two weeks ago we started weekly Applied Behavior Analysis [ABA] therapy in hopes of building up Ellie's social skills and working on her problem behaviors.  She has some 1:1 time with the behavioral therapist and some time to be with other kids.  I have been informed that she does really well at following directions.  Humph!  I wish she did that at home!

At the recommendation of the ABA therapist, we took Ellie for an autism evaluation yesterday at neurology.  We learned that Ellie has bad ADHD.  No kidding!  The doctor said that while she has some autistic-like behaviors, which is common in kids with Down syndrome and developmental delays, she does not have autism.

I recently ordered the book Supporting Positive Behaviors in Children and Teens with Down Syndrome.  I am hoping that maybe I can learns some tips to deal with Ellie's behavior and maybe gain some understanding.  I shall report back after I read the book.

We went for our annual ophthalmology appointment on Monday and learned that Ellie has great difficulty seeing out of her right eye.  It crosses a lot.  So we have the great pleasure of trying to convince Ellie to wear glasses.  I am wondering how much her poor vision has affected her school work?  Is she acting out more, trying to escape work, because she cannot see the learning materials?



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My daughter is the mean kid

Exasperated is what I am feeling right about now.  I had been so worried about kids being mean to her because she is different that I never thought about Ellie being the kid hitting and shirt pulling.  I was so worried that kids wouldn't want to be friends with her because of her Down syndrome that I never thought she'd have her aggressive, grabby behaviors would prevent her from forming friendships with kids in her class.

My daughter, while her intentions are innocent and are not maleficent, is not very kind to her fellow classmates, therapists, or her own mother.  When she doesn't want to do something, she lashes out with her hands.  Slapping at us.  She doesn't want to wear shoes, I get hit.  She doesn't want to work on that book with her therapist, the book gets hit and shoved violently away.

She has something the school and I call the "arm sweep".  It isn't exactly shoving, but rather a sweep of an arm to move a child away from her.  Some of these kids are up in her personal space (although Ellie has no concept of other people's space--sure, let me climb all over you and sit in your lap) and she performs the arm sweep to move them away.  A child may be on top of the slide waiting to go down, but my impulsive little angel performs the arm sweep and goes barreling down the slide.

Then there is the shirt pulling.  It used to be she grabbed a kid's shirt or hoodie if it was brightly colored.  Or sparkly.  Especially if it was sparkly. Now she does it to physically pull the "friend" to her. It is her not-so-very good way of saying "play with me".  What child wants to be strangled with their shirt by a grabby little 4 year-old?

If you are an adult, hold onto your glasses.  Many times Ellie steals glasses to perform a "trade".  An, I give you my necklace, hat, or sunglasses for your glasses or hat.  She likes to use my glasses for a trade.  She also likes to remove my glasses in a huff because she is angry at me.  She knows it irks me so I am trying to be much calmer and use a nice soft voice.  It may or may not be working.  I cannot tell.

Yes, she has communication difficulties.  Yes, she has social deficits.  Yes, she has a naughty temper.

I have the mean kid at school.  The kid that "arm sweeps".  The kid that is "grabby" and "can't keep her hands to herself".  The kids that pulls shirts and slaps at adults.  I have the child that will have trouble making friends because who wants to hang out with the kid that might hit them.

I have learned that immediate consequences do not change her behavior.  Immediate scolding.  Immediate time outs.  These do nothing.  She repeats the undesired behavior. . . immediately.  We are working with Ellie's ABA therapist and have started a Social Story on the iPad.  This story has sad and happy pictures of Ellie and myself.  It has audio that goes something like this "hand are not for hitting.  hands are for eating.  hands are for drinking. hands are not for hitting.".   We are also showing her how to use "soft hands".  The school and I worked together to find a PEC that Ellie can use to say "I want to play." rather than shirt pulling.  The kids at school are told to say "Ellie, hands down".  I do not know if any of this will work, but my heart is broken.  I want my daughter to have friends and to be loved.   Plus, I am tired of getting beat on.

Speech and ABA Therapy Techniques

For years we have been trying to help Ellie shape her mouth and make sounds.  For years I have been waiting for whispers (or shouts) of words to escape her mouth.

Then, it happened:

Baby.  She used to say "Eeeeee".  Then "buh", "buh-ee", "buh-bee" and now BABY!




PROMPT.

When Ellie is touching her mouth or her neck in these videos, she is doing something called "PROMPT".  Our speech therapist and ABA therapist have chosen certain areas of the face/throat and movements of the fingers for specific sounds--i.e. tapping the throat for a /c/g/k/ sounds because those are guttural.  A finger across the upper lip for /m/ as a reminder to press the lips together.


ABA Techniques




The above video shows a typical ABA therapy game. There is a reason behind each component.

Socialization: eye contact.  Leslie does not tell Ellie yes or no until there Ellie meets her eyes

Fine Motor: pointing.  This was one of the first ways we got Ellie to point.  She must tap the bowls with her pointer finger.  Then, she need to be able to lift the laminated picture off the table in a pincer-like grasp.

Increase Attention /  Decrease Impulsivity: She has to watch, while sitting!, Leslie move the bowls around to determine where the picture is.  She has to listen to the full set of directions and then follow through on those commands.

Following Directions: see above. Ellie must sit in chair even though she really really really doesn't want to, she has to listen to directions and follow through.  This is an important task for school preparation as Ellie can not just run about the classroom and full-fill her every whim.  There are rules and expectations and this ABA sequence helps Ellie learn classroom basics--sitting, listening to the teacher.

Finger Play: the around-and-around finger play is great for both communication and imitation

Speech: Leslie uses speech communication cards similar to the Kaufman method.  You say the full word 3 times and then break each word down based off of where the child is in her speech development.  For example, with book, you start at "bu" and then build up to "book".

• book
• boo-k
• bu

Baby would look like this:

• baby
• bē-bē
• bā-bē
• bā(long a)
• bă-ē
• bĕh

Being true dog training ABA therapy, there is a reward at the end.  For Ellie, it is a fruit snack and lavish praise. Eventually, the reward becomes a stamp or a sticker with praise.  Then, just praise.

All of Ellie's ABA therapy games have multiple steps and address a series of developmental aspects.

"I want mama"

It was a bit garbled and a bit rushed.  Yet, I heard it.  I understood it.  I swear to you that I did.

"I want mama" exclaims my four year-old daughter Ellie.  Her little arms stretched up and her bright blue eyes pleading for me to lift her high into my arms.


In the past 4 years, Ellie has only uttered a handful of words.  Of those words, only seven of them can be understood by someone other than me or Andrew.

mama [clearly the greatest sound in the world!]
dada
papa
BALL!!!!
car
yeah [yes]
no

Everything else is more like a jumble of consonants and vowels--eeeee, buh, hard K.

"I want mama"

I heard it. As did Miss Leslie. Meaning that I didn't imagine it or construe Ellie's jargon into what I wanted to hear. I struggled hard not to cry so as not to alarm Ellie Bear.  Yet, I sit here now, barely able to see the screen, as I cry those tears of happiness and amazement.  I don't know when or if I will hear that sweet, beautiful sentence again, but I am so happy to have been there during her therapy session to witness it.

This mama is proud of you little Bear.

ABA Therapy and ID Bracelets for Kids

The Bear says:

Will perform awesome 

therapy stunts

for

BUBBLES!!!!!!!

*Will also work for balloons, stamps, and fruit snacks.

With regards to my last post, A Wandering Child, here are a few links for ID bands.  My daughter has a similar one in the first link.  Road ID offers bands that hook onto shoes.  For those of you who have children that actually keep their shoes on, this may be a good fit.

American Medical ID-Nylon Sport ID for kids (Ellie's is similar to this one.  Slightly different.)

American Medical ID-bracelets for kid

N-Style Medical and ID bracelets for kids

Road ID Bracelets for Kids (my totally awesome cousin has on that looks like those LiveStrong bracelets)

Road ID Shoe

Helping my daughter communicate

Ellie signs "bread".  For once, her sign looks pretty close to what Rachel Coleman demonstrates on Signing Time.  Ellie's fine motor skills are improving!

I had her a piece of toast since that is what she typically wants, well at least this week it is what she typically wants.

SCREAM! Throws bread while shaking her head "NO!"  Frantic signing of "bread".  SCREAM!

Yet, I just gave her bread.

Does she really want bread?

Yes, Ellie does want bread.  Just not toast.  Tortilla.  Croissant.  Toast.  Regular slices of bread.  Those are all breads to Ellie.

I wanted tortilla bread, mom!

This same situation occurs with cracker.  Because, you see, any large food item that she does not know the sign for is cracker.  Especially Zone Bars.  Ellie wants to communicate with me.  She is trying to communicate with me.  And I need the power of telepathy.

The breakdowns in communication are hard on both of us.  She gets frustrated and I get frustrated.  She is screaming because I don't understand her and I am feeling like the ultimate mom failure because I cannot read my 3 year-old's cues.

Ellie has learned the PEC system [picture exchange communication].  This communication system has been implemented in her school and in her ABA therapy.  I decided to do my own little Ellie-Bear version.  I used real photos as opposed the the traditional colored line drawings.  Some I took on my iPhone and others I used from the internet.  I should probably warn you that if you google "PECs" you will find some official PEC photos, but also some young men who have photographed their pectoral muscles shirtless.  Just saying!

I got a little overzealous with the laminator and velcro!  Because I laminate A LOT, my hot sexy husband got me a little laminator from Costco.  It was cheap and saved me from frequent trips to Lakeshore Learning which surely would have ended up with me spending way more money on learning tools in addition to using their laminating machine.  The photos that I use are square and I place them onto a 2.25 x 2.25 grid.

I have created a page each in a binder with these PECs--foods, activities (i.e. paints, crayons, chalk, other toys that I hide from her, iPad), places (i.e. Target, Central Market, Restaurants, Big Bounce, Parks).   Now, mind you, Ellie Bear is a big sensory seeker.  The thrill of removing items from velcro is too much for this little girl.  She will remove every single picture and then carry them to another part of the house.  Therefore, I store this binder out of reach.

When she signs and says "eat", I pull out a small strip of laminated paper with velcro on it.  I attach only a few food items (yeah, I don't want her pulling off the donut for every single meal!  Or selecting a food item that I do not have).  This gives her independence which is so important for a toddler.  She gets to choose her food.  Also, this helps prevent most, but not all, communication break downs.


When she sign's "bread", this is what it looks like:

For "cracker":

It also helps with TV shows. When she wants to watch "Potty Time" she hands me both "Signing Time" and "Potty Time".  I just laugh because, well yes, Potty Time is also by Rachel Coleman.

I have tried to upload the empty grid that I place my pictures into, but the pesky thing just will not show up in the blog post.  If you would like a copy of the grid, you may email me at thechroniclesofelliebelliebear (at) yahoo (dot) com


*Note: This does not replace Ellie's verbal communication, but is rather an adjunct to it.  She will hand you a picture while trying to say the word.   Bear is on Phase III of the system.
**The true PEC cards have the word written above the picture.  These words have helped Ellie learned to sight-read 15+ words.
*** The true PEC system is expensive.  Speak with your child's therapist about using PECs as she may provide you with the ones relevant to your child.  Or, you can create your own like me


Resources:

http://www.pecsusa.com

http://en.wikipedia.org/wiki/Picture_Exchange_Communication_System

http://www.childrenwithspecialneeds.com/index.php/downloads.html

What is Your Name?

What's your name?

A simple question that should have a simple answer.

Ellie knows that she is "Ellie" the same as she knows that I am "mama", Andrew is "dada daddy", and Leslie is "Eee".  She responds to Ellie.  She can even read her name on a card or piece of paper--she says "Eee".

Yet, if you were to ask her "What is your name?"  She just stares.

The same for other simple questions.  "What color is/are your shirt/socks/pants/shoes?"

She stares.

The thing is, she knows her colors.  She can sign or say all of them.  Even silver, gold, and gray.  If you  give her choices and say is your shirt red or black?  She can sign the correct color.

The broad question of what is your name or what color is your shirt requires a different thought process.  Her little mind must translate the questions and sift through all of the possibilities.

As more and more people would come up to Ellie and say "What is your name, little girl?" and actually expecting her to respond,  I got to thinking that surely there must be some way to help Ellie understand this common, personal question.

Miss Leslie, of course, had an idea.  She showed up at my house for one of Bear's therapy sessions with a laminated picture of Ellie with the PECs above.  See below.

Surprisingly, Bear sat in her chair for a while (well, a long while for her!) and gazed lovingly at the picture of her self.   Yes, it was a picture of Ellie as a fairy princess.  Yes, my daughter is vain.  Come on, if you were as gorgeous as Ellie Bear, you would stare at yourself too!

What is your name?, Leslie would sign and ask.  Leslie would then tap Ellie and say "Ellie" while signing the letter "E" near her chin.

Bear would blink.

She would then try to sign "girl" because that is similar to "E".  That's right Bear, you are a girl.

Repeat. Repeat. Repeat.

Repeat.  Repeat. Repeat.

Then repeat some more at the next therapy session.  [and in between sessions with mama trying to maintain her all-too-short attention span.  Apparently, mommy is boring compare to Miss L]


Then it happened.  I was getting Ellie ready for bed and I asked her "What is your name?" and I didn't have my laminated sheet.

"EEEEEEEEEeeeeee" with her little hand in a fist circling around her chin.


That's right, Bear.  Your name is Ellie.

PROUD MAMA!  SUPER ELLIE BEAR!

Super Target: a successful shopping trip with a toddler

I make a right into the Target parking lot and Toddler Bear lets out a wail, or rather a screeching objection.  She then proceeds to whip out her new, signature "fake cry".  Her "wah han han han wah".

It was not going to be easy, but I was desperate.  I was armed with her toy shopping cart, the stuffed puppy, a picture of an apple, and a double chocolate Quizno's cookie.

I was starting: Operation Get Ellie To Tolerate Shopping at Target.

Or maybe I should re-title it as: Operation Let's Get In and Out of Target without an Epic Meltdown and Ear-Drum-Shattering Screaming

A few posts ago, I hypothesized that Ellie loathed Target because she is offended by red shirts or the pesky buzzing of their fluorescent lights.  Now, after a careful comparison between HEB (which she somewhat tolerates) vs. Target, I believe it is expectations.  At HEB, we walk in on one side, start at the produce section and then end at the dairy section.  We then check out.  At Target, we sometimes purchase groceries, or clothing, or pet food, or greeting cards, or even toys.  There is no routine.  She doesn't know when the trip will end.  It is not predictable.  Now, I cannot prove this, but just a thought.

This Mama Bear counted this exercise as her cardiac workout.

At the fabulous and priceless advice of Miss L, Ellie's ABA therapist, I strove to create the settings for a successful shopping trip.  A brief, short trip with a reward at the end.  The hope is that the next time we go to Target, she will not perceive it as an abhorrent activity.

Sequence 1: showing Ellie what we are buying.
We shop for 1 item and 1 item only.

Sequence 2: retrieving the actual food item

Sequence 3: Go immediately to check out.
We want a quick, SUCCESSFUL trip to the store

Was it a success?  Yes. . . er. . . mostly yes.  She was a rock star for the most part.  She required frequent redirecting because she wanted to run up and down the aisles of the store rather than select the actual apple.  Then she wanted ALL of the apples which she was trying to take huge bites out of. After convincing her to select one apple and to place it into the car, the Spider Monkey decided to go down an empty, unmanned check-out line and head towards the door.  That's right, we almost stole an apple.  With more redirection, she propelled her little cart to an operating line and gleefully used the Amex to purchase the apple (that's correct, I only had $0.40 in cash and our beautiful, red, crunchy apple cost $1.15).  For some reason, The Bear was a pro at the whole swiping the credit card.  Should I be worried?

Sequence 4: Reward.

She tried to put her cart "away" in the return cart holder and then things went south.  Way south.  She did not want to hold my hand in the parking lot.  She pulled the boneless toddler where she lets her body go entirely slack so that she is laying on the asphalt screaming.  Turning red and purple.  I scoop her up and the shopping cart.  I am being pinched and slapped so I turn her sideways so that she being carried to the car like a loaf of bread.  Stares.  Oh yes, stares.  BUT this time it was in the parking lot and not in the Target store.

Sequence 5: Going to the car.
Things started to go awry at this point.

What is the next step?  Not sure.  Let me consult with Miss L!

*Miss L could explain this in greater depth and with much more accuracy, but I compiled these photos in an ABA activity sequence format.  Each photograph captures a specific step of the shopping trip (except the whole using the credit card part).  I can later show Ellie these photos so that she knows "what to expect".  These sequences demonstrate to the child how to perform an activities step-by-step such as with hand washing: i.e. turn on water, push soap dispenser, rub hands together, rinse hands, turn off faucet, grab paper towel, dry hands with paper towel, place paper towel in trash.  We have discovered that Ellie learns best by seeing videos or herself or pictures and I imagine many other children learn similarly too!

**I am not a ABA therapist or child behavior therapist.  I am just a mother who wants to show off the awesomeness of my daughter and I must say I am pretty proud of our recent Target shopping trip.