Wednesday, April 15, 2015

Gemiini Program Update: Week One

We are currently using the Gemiini program in our home in an attempt to increase Jace's communication skills.  We are receiving our monthly subscription at a reduced rate in exchange for sharing about our experience with the product on the blog.  All opinions and reflections are my own and are not provided or influenced by Gemiini systems.

For the first few weeks of the program, subscribers have the option of utilizing a series of "Quick Start" videos that allow them to follow a series of videos at a viewing rate recommended by the developers of the program.
Dining at the Gemiini supper club.  One of my favorite perks about this program is its encouragement to utilize the videos in group settings.  When it comes to therapeutic interventions, if you're not requiring me to apply them in a one on one setting, your program is worth a shot in my book.

Because the video "prescriptions" change on a weekly basis, I thought this would be an appropriate time to give our initial impressions of the program and address some questions we've received thus far.

If you were expecting a video of Jace welcoming you to the blog and reciting his name and address, you're going to be disappointed.

Week one consisted of forty (give or take) viewings of a video in which he was repeatedly exposed to the vocabulary: fish, lizard, crab, bear and elephant.  He viewed picture representations, repeatedly heard the word articulated, viewed individuals saying the word and watched the ASL sign for the words being demonstrated along with verbally spoken.

After forty viewings of the video...nothing.  He's not saying anything along with the video.  He isn't gesturing along with the video or attempting signs.  He isn't mimicking animal sounds or pantomimes of the animals.

Here's a glimpse at what a typical viewing session of the videos is currently looking like:

To be fair, communication is more than verbal expression.  So, I also attempted to see if Jace's receptive language skills have been influenced by the video viewing thus far.  I made cards using the actual photos presented during the videos and asked Jace to identify individual animals.  This was the result...

While I am not here to tell you the wonders of communication have unveiled themselves following our first week of the program, I'm not going to dismiss it either.  After all, it's been a week.

Here are a few things about the program I like thus far:

Progress Monitoring:  The program expects you to monitor how it's impacting your child's communication progress and gives you the tools to do it.  It allows you to add other data as well, such as additional therapies, nutritional supplements, dietary intake, etc. and can produce graphics that show correlation between the information you provide and your child's behavior.  It isn't completely objective, nor is it completely ideal but it is an option for maintaining and organizing information.

Collaboration:  If you have a subscription for your child, then the professionals who work with your child are included in the cost of the subscription and are entitled and encouraged to use the program during their time with your child.  They're also given tools to use to assign video components for your child to view and to record their own feedback, recommendations.  The information is all accessible in your account and facilitates a nice option for communicating with the therapists and teachers working with your kid on the topic of the program.

Video Modeling:  While there are elements of the videos I think could be vastly improved, I do appreciate that they provide my son who cannot abide eye contact with the opportunity to view the words and sounds being articulated without eyes ever being part of the picture.  That isn't something that a speech therapist sitting a few inches from his face is able to do, and it's definitely a feature of the program that he has positively responded to.

 In other areas, I don't think it's fair to give an opinion just yet.  Like I said, I'm only a week into the program.  And, I'm admittedly technologically impaired.  So I need some time to determine if issues I'm having are related to the program or the parent trying to implement it.

And a little Pudge action...
We started the program focusing on Jace and, as I mentioned in an earlier post, were drawn to the program due to features we knew would be beneficial for a learner with autism.

We have also purchased a separate subscription for LC (although there is certainly overlap in the content they'll view and, initially, the majority of what they watch will be done together.)

Since we haven't started the program with LC yet, I was able to get a "pre-test" of LC saying some of the vocabulary I know she'll be practicing in the next two weeks.

I'll also stop to note that LC has made incredible progress in her willingness to use her voice outside of the house and with people other than her family members.  The talking you'll see in her videos is more than she would typically generate for anyone that isn't her mom (or her own reflection in the iPad).  I could still go days without hearing her voice if I don't demand verbalization of her, but she is far beyond where Jace is as far as attempting speech and understanding the role of verbal speech in communication and social interactions in general.

On with the show...

P.S.  If you require nipple coverage in your language demonstration videos, this ain't the blog for you.  Once LC walks in the door from school the shirt and the shoes come off.  We only ask that she keep it Christian from the waist down.  So make a note that a fair degree of brown skin and cardiac scarring will be featured in any Gemiini updates from Pudge...much to their delight, I'm sure.

Some questions we've been asked...

What research is available to support the effectiveness of the Gemiini program?
Admittedly, I haven't read any.

However, I also didn't read any research before using Signing Time videos with my kids and those were incredibly beneficial for LC's language development, in particular.  But the short answer is, if the research exists I certainly can't point you to it.

Would you be comfortable using Gemiini in place of professional speech therapy?

Hmmmm...a good question.  But I think it assumes we can afford both.  Or either, for that matter.  Our insurance doesn't cover speech therapy related to the diagnosis of Down syndrome.  When we did pursue it, I sent my daughter in for a 30 minute session I wasn't invited to participate in.  It occurred once a week, we saw no progress at home and it ended with a formal report that referred to my daughter by both the wrong first name and then, multiple times, "Down syndrome child".

Granted, that was one therapist and there are multitudes of others who take more effective approaches in providing therapy to children with Down syndrome and speech delays.  But our costs for private therapy far exceeded the cost of the monthly subscription for this program and we didn't have any tools to use at home in between appointments.  With the Gemiini program I do have tools to use repeatedly to support speech development during the week.  I'm also able to do it in a way that allows me to know exactly what skills to look for as far as generalization beyond the videos goes.

What's the deal with the secret Facebook group?

That's a good question.  I thought it was weird, too.  I'm assuming, after joining the group, that it was probably a poorly chosen title and "private" would have been a better option.

The purpose of the Facebook page, as I understand it, is to share videos, pictures, questions, etc. that are specific to your individual child.  And, if I learned ANYTHING from thousands of people delighting in making fun of a picture of LC eating a french fry, it's that you don't want to be sharing pictures or videos of your kid if you can't be sure who is in the receiving audience.

That said, anyone who is approved to be in the group can invite anyone they like to join the group without consulting an administrator, so it's far from being exclusive.

Would I recommend it for other children with Down syndrome?  

Well, I'm not sure I'm recommending it for MY children with Down syndrome just yet.  Right now, I do feel like it's a tool for reinforcing vocabulary development and improved articulation.  Is it a tool that's worth the monthly subscription fee?  I haven't personally experienced evidence of that, so I'm not in a position to confirm that it is.  But, again, there are features of the program I haven't attempted to utilize yet and we're still very new to the process.

So, we'll carry on for another week and welcome your questions or suggestions as we do!

Wednesday, April 8, 2015

LWA: The Communication Quest

Both LC and Jace struggle with weaknesses in the area of communication.

For LC, verbal communication is most difficult.  She can easily exchange pictures for the words she's unable to clearly articulate and is also quick to learn and use ASL signs.  Using her voice is a constant hurdle.  She doesn't want to attempt speech when she knows she won't be understood and she has extremely poor motor planning abilities related to breath production and support.  She's made tremendous progress this year in initiating verbal communication but she regularly has to rely on other communication options to get her point across when her spoken attempts can't be understood.

Jace's communication issues are more complicated.  He has no signs.  He uses no words.  He will guide our hands to provide whatever item he is interested in receiving, but there aren't any attempts made to initiate communication with actual people.  Cognitively, he struggles to understand the relationship between an actual object and its photograph, so a picture exchange system hasn't proven to be a successful communication alternative.

His current methods of communication are as follows:

1.  Quiet:  I'm content with what's happening.

2.  Moaning:  I'm probably content but feel like being loud as well.

3.  Touching and staring at Mom or Dad's hand:  Hand, I have a job for you.  Come along and I'll show you what to get for me.

4.  Fall to the floor:  I don't want to do what you're suggesting.

5.  Scream/Cry/Madly Slap Self in Face and On Head:  Something's not right.

The most significant problem with communication method number five is that it is used whenever something is not right...regardless of the degree of wrongness.  So...if an episode of Mickey Mouse Clubhouse ends and he wants to watch another, he will slap himself until someone figures out the issue.

If too many orange Froot Loops come out of the box and it's Wednesday and orange Froot Loops can't be tolerated on a Wednesday, he will assault himself to the point of near concussion until you figure out what is wrong.

If his socks are uncomfortably loose...or his brother is crying...or there was a lump in his food he wasn't anticipating...or the block tower he was building suddenly topples...

you get the idea.

In short, we desperately need to find a way for Jace to communicate that doesn't involve physically assaulting himself.

And we aren't having a great deal of luck.

So, we are getting ready to begin using the Gemiini system in an attempt to equip Biggs with some communication abilities he's currently lacking.

We chose the program based on its reported benefits for learners with autism.  We also chose the program because Biggs consistently responds well to instruction provided via video modeling and videos are integral to the Gemiini approach.

In return for regularly posting about Bigg's progress with the program, we are receiving our monthly subscription at a reduced rate.

I don't suppose that's going to influence the honesty of my posting, however.

If the program doesn't work, we'll let you know and stop paying our monthly subscription fee to access the program.  If we see progress, we'll let you know that as well.

In order to be as objective as possible in considering the impact of the program on our ability to communicate with Jace, I thought I'd share a few video examples of his current performance levels.

Note to those familiar with ABA...this is NOT an instructional video on how to use ABA strategies successfully with an autistic five-year-old.  If anything, it's an illustration of how NOT to attempt ABA interventions.  But I was trying to illustrate how Biggs typically responds to performance requests using as few prompts as possible.

You should also know that Chee-tos are the holy grail of reinforcers around here.  So I pulled out some big guns to get the magic to happen, people.

Here is a video example of Biggs' performance in matching photos in an array of 3.  He's performing without a reinforcer other than social praise:

Note:  I give Jace a second chance at matching the bell photo because I'm fairly certain his first attempt is compromised by not understanding entirely what he's been asked to do, despite my demonstration.  

Here is a video example of Biggs' performance in matching photos to actual objects in an array of 3.  Note that this video was made directly following the photo to photo matching activity.  It illustrates the difficulty Jace has in recognizing a relationship between an object and its photographic representation.  Again, he's working without any reinforcer other than my applause and verbal praise.

Here is a video modeling Biggie's ability to imitate gross motor actions when asked.  It's a little longer than necessary, but it shows some of his typical behaviors and ways of communicating things like, "I really love Chee-tos but I can't possibly eat one that you have touched."

Sorry for the video quality...I'm literally working with an iPhone duct-taped to a cereal box.  You get what you get.

Finally, here's a video demonstrating Biggs' abilities in verbal imitation.  I ask him to verbally imitate actual words, and also imitate sounds I know are in his verbal repertoire based on the sounds he most consistently makes when moaning or babbling to himself.

So, there you have it.  A quick attempt at providing a feel for our cognitive and communicative baseline before actually beginning the Gemiini program.

Here was Biggs approximately three minutes after the end of the vocal imitation video...

Because Mom is crazy.  And who knows WHAT she wants half the time.

But, when Chee-tos are on the line, you squeeze your brain to the point of exhaustion to try and give that lady what she wants.

Check back for postings entitled "LWA:  Gemiini Update" to see how things are coming along...

Monday, March 30, 2015

Monday Morning Update

You can find an open letter composed by Ken Thiessen here.  I wanted to be sure to provide an opportunity for Mr. Thiessen's viewpoint to be shared as well.

Quote by Ken Thiessen in Friday's news broadcast in response to the question, "Would you consider giving a Varsity letter to special needs kids?":

We have considered it and our decision was "No.  That is not appropriate."

The post I wrote on Friday was in direct response to the quote Ken Thiessen personally provided in the KSN interview.  The post doesn't speak to the accuracy of the events that preceded the interview or the proximity of the events to the aired statements by Mr. Thiessen.

I'm delighted his high school has a culture that supports "special needs students" and wish that culture and philosophy were so pervasive that they would have influenced the interview he provided in his office at East High.

While his letter may be lacking in apology or personal accountability, I'm grateful for the awareness Mr. Thiessen's public relations blunder has brought to the issue.  I'm encouraged by the opportunity it has provided for other schools in the nation to consider how they recognize outstanding effort.  I will continue to applaud those districts who have built strong educational communities with places for learners and participants of all abilities.  High praise is due to those districts who embrace their learners and athletes through daily visible displays of equality rather than belated open letters on the internet.

Friday, March 27, 2015

Into Your Capable Hands...

I'm not sure I'm able to formulate an objective opinion on a news story I viewed this evening.

If you'd like to catch up on the story yourself, you can find versions of it here...

...and here...

...and here...

As a mom of an adopted son who has a co-diagnosis of Down syndrome and autism you can probably understand that this one hit me where it hurts.

Down syndrome doesn't break my heart.

Society's response to individuals with Down syndrome blind sides me all too often.

When the individuals that knock the wind out of me are also administrators at a huge high school...daily entrusted with the task of actively teaching young people how to approach the building of our future communities, governments and world...I get a little barfed out.

There are no victims in my house.

There are no victims in the house of Michael Kelley.

The Kelley family has a son with the heart of a champion who is proud to celebrate the school he calls home.

Nothing about that truth has changed in spite of principal Ken Thiessen's response to Michael's enthusiasm.

Like I said...I don't have anything objective or constructive to share just yet.

But you're all so much more eloquent than I am anyway.

So, I thought I'd let you contact Ken directly.
That's him...if you run into him on the street.

A varsity letter signifies that a student has put forth extra effort...even outside of school perform in a manner that makes their school proud to claim them as a student or alumni member.

Mr. Thiessen is the fellow who has publicly stated Jace and students like him are not entitled to wear clothing that implies the possibility they could earn that type of recognition.

Just to catch you up.

You can reach Mr. Thiessen at Wichita East High School.

That's at 2301 E. Douglas St. in Wichita, Kansas.  If you're in the neighborhood.

Would you rather phone him?  Please do!


I'm more a letter-writer myself.

You can fax him at 316.973.7224

I'm not able to give you his email address since I can't access it due to the fact that I don't have a student enrolled in his school.

But maybe the superintendent, John Allison, can help you out.

You'll find him at 316.973.4580.

They'll be hearing from me, of course.

But feel free to reach out as well.

I have a feeling the supporters of Michael Kelley...and those like him...would surpass the number of Wichita East fans attending a Varsity basketball game.

Don't you agree?

(I'd be wildly appreciative if you passed this along to anyone else who might like to share with Mr. Thiessen their own thoughts on Mr. Thiessen's passionate commitment to preserving the internationally revered honor of wearing the Wichita East High Varsity letter jacket.)

Wednesday, March 25, 2015

You've Got Four Weeks.

See this picture, Gebba?

That's your brother Biggs.

He's sixteen months old.

He's walking.

He's exactly four weeks older than you are right now.

Which means you have four weeks to attempt standing unsupported.

And cruising.

And putting one foot in front of the other in a forward motion.

Either you pick those buns up from the carpet or "Biggs walked before I did" will be your family legacy.

Not that there's anything wrong with that.

He is naturally gifted.

But I'm shamelessly employing sibling rivalry.

Because the human barnacle thing is getting old.

Four weeks, Gebba.

The clock starts now.

Saturday, March 21, 2015

It's World Down Syndrome Day!

Thanks to the outrageous generosity of our local Down Syndrome Guild, we were able to celebrate the day in the company of Rachel Coleman from Signing Time!

Well, actually, only the Heigele family members without testicles attended.

Loud crowds aren't Biggie's gig, so the boys hung out at home with Froot Loops and unlimited television and the girls and I attended today's event.

The DSG provided a yummy breakfast followed by super fun carnival games.

They even had an Easter Bunny at the ready for photo ops.
("Back off, Rabbit."  LC's not a fan of giant characters in costume.  We're not working to cure her of her anxiety, since it's keeping "Take the Kids to Disney World" off our parenting to-do list.)

Before we knew it, it was time for the show!

The girls had a blast singing and dancing and signing along to their favorite songs.

The time passed so quickly, we couldn't believe it when the show was over!

Thanks for making this World Down Syndrome Day a great one, DSG!  We are so fortunate to have you in our lives.

Tuesday, March 17, 2015

Thanks, Mabel.

Today is day two of spring break.

Since the odds are high we all won't make it to the end of the week, I thought I'd document our survival thus far.

And, it's Gebba's fifteen-month day.  All grand reasons to pull out the camera.

These are the things maternal rage episodes are made of.

Because...if it wasn't hard enough to just take a still photo of my four children...

...let's throw the LEAST obedient golden retriever God ever created into the mix.

You're killing me, Mabel.

So, happy month-day, Gebba.

Not that you'll celebrate it by walking.

Or, frankly, even standing unsupported in the middle of a room.

No rush, I suppose.

Kindergarten is still years away and since you still come in at under 20 pounds, you're portable.

And, let's face it.  Your refusal to become vertical is probably a testament to your high intelligence.

Nobody would blame you for staying low to the ground.

We'll choose to call it "self-preservation practice" rather than "obvious developmental delay".

Crawl on, little brother.

Special thanks to Biggs for observing St. Patrick's day with his cup selection.

That may be as far as our celebrating goes...if you don't count Mom slamming a beer at lunch.

Until next time...