Monday, June 29, 2015

Falling Down

I have a son.

He is funny and warm and loving.

I love my son.

I delight in following him as he putters around in his little world.

I watch him discover new things....make his siblings giggle...obsessively return to the activities he enjoys the most.

I love my son.

Sometimes, my son grows weary.

Stumbles on unsteady feet are more difficult to pick himself up from.

The uncoordination of tiny hands is harder to forgive.

Frustration is more sharply felt.

I watch him grow increasingly angry at each new mishap. I wish he could see how small the blunders are in the grand scope of the world he's fumbling through.

But my son has grown weary.

Eventually an item is lost or a misstep is made and it is one more than he can bear.

I listen as his feet race out of the playroom and I hear him rage as he throws himself to the ground.

I love my son.   And my son has fallen.

I seek him out in whatever dark corner he's gone to escape.

I find him in his puddle of sweat, snot and tears and...undaunted...I scoop him up.

I bring him to my chest and nuzzle him under my chin.

I love my son and my son is in need of rest.

Last week my warm, funny, loving cousin committed suicide.

And in the early hours of a dark morning the same scene played out.

A son fell down.

But the love that swept him back up far surpasses any I could offer my own little boys.

Dustin, I will miss you.

I'm so sorry my arms weren't offered when I knew your heart was growing unsteady.

But I know the arms that found you.

They're the same ones holding me.

And I know they'll bring me back to you someday.




Friday, May 1, 2015

Sharing the Sad Stuff...

When it comes to sharing about my extra-chromosomed squibs, I admit to often withholding about episodes that make my stomach hurt.

I obviously experience them.  They obviously experience them.

But I've always wanted this blog to be a celebration of who they are and what they bring to the corner of the world they were sent to terrorize.

It has recently occurred to me, however, that when I don't share about what brings me to my knees I also miss out on sharing how grace relentlessly and without fail brings me to my feet again.

So, with my apologies for its delay, here is one such story that really demands to be shared...

Two years ago, when LC was four, I decided I was tired of forcing her to participate in classes and therapies that focused on improving her weakest areas.

I wanted LC to have something on our weekly calendar that played to her strengths and was 100% intended to be fun.

I didn't have to brainstorm long.  My strong, graceful, coordinated gross motor junkie was going to be in gymnastics.

I called multiple gyms.  I asked for recommendations.  I did my homework.

I personally spoke with a gym's owner and was assured they had a class that LC would be welcome to participate in.

We signed that girl up.  We bought that girl a flashy leotard.

We talked daily about gymnastics and the fun she would have.

And then the day arrived for her first gymnastics class.

I squeezed her into that leotard.  Pictures were taken.  High fives to Dad were slapped.

And we were off.

We arrived at a gym swarming with tiny bodies in a rainbow of spandex.  I was encouraged by the high level of traffic and excitement on the faces of all the tiny gymnasts.  I knew LC was going to eat.  this.  up.

I waded through the bodies to the front desk and explained I was here with LC for her first gymnastics class.

At my introduction, the woman behind the counter's face went blank.  She asked me to wait one moment and then came back with the gym's owner.

Shoulder to shoulder in a lobby overflowing with people the owner said, "I'm sorry.  I tried calling you.  We don't have staff to handle a child like LC.  We think a special olympics program would be the best option for her to pursue gymnastics."

Wait.  What?

Never mind that a Special Olympics program for preschoolers doesn't exist in our area.

They hadn't even SEEN LC yet.

She hadn't taken off her COAT.

And in no uncertain terms, we were being asked to leave.

I took LC and her unused leotard by the hand and we headed home.

(The gymnastics super suit did end up needing laundered.  When you're kicked out of your first gymnastics class, hot fudge sundaes are required to aid your mother as she brainstorms a solution.)

I was embarrassed.  And angry.  And all the other emotions any other mom in my position who sees their kid denied an opportunity based on someone else's lack of information and excess of prejudice would feel.

I didn't write about the experience at the time because I didn't want the blog to be a place to share the sad stuff.  I couldn't guarantee that a happy ending was waiting and if it wasn't, then this wasn't a story I was willing to tell.

I considered forgetting the whole thing.

I couldn't.  I'd paid too much for that damned gymnastics costume to turn back now.

I considered looking for special needs-specific programming.

But ALL of LC's other weekly engagements were special needs-specific.  I needed this activity to not be determined by a diagnosis.

I called one more gym.  They had a class with an opening and...after yet another lengthy explanation preparing the staff for the "kind of child" I was enrolling...we leotarded up and headed to gym number two.

We were introduced to LC's teacher, Coach Tyler.

I was certain he couldn't be older than fifteen.  I knew she was going to eat him alive.  And I didn't even care.

All I wanted was for her to be allowed to sit on a carpet square in a circle of other kids and touch her toes and bounce around for thirty minutes like everyone else.

I did not care if she learned anything.

All I wanted was to not end another evening spot-treating hot fudge out of lycra fabric.

As grace would have it, I was the only one who showed up prejudiced that day.

Coach Tyler turned out to be one of the most naturally gifted early childhood educators I'd ever seen in action.

And I've seen a few.

He wouldn't let LC off the hook for nutty behavior.  He wouldn't let her misbehave without consequences and he wouldn't let her out of trying everything...even the hard stuff.

More importantly, Coach Tyler made this happen...

and this...

this...

and this...

LC will never remember walking out of that first gym, coat still zipped to the top.

LC will absolutely remember how strong, confident and capable Coach Tyler made her feel.

I'm sorry I didn't share LC's happy ending.

It's too good a lesson not to pass on.

Especially since the grace keeps going.

Coach Tyler is going to run in the Chicago marathon the day after LC's birthday.

And, it should come as no surprise that he's using it as an opportunity to raise awareness and funds for a non-profit organization that benefits kids just like Pudge.

We'd love for you to visit his fundraising page and let him know that LC sent you.  If you can financially support his efforts, I know he'd be grateful.  If you could share about it on your other social media sites, that'd be awesome, too.

We'd sure like to see some good come back to that guy.

You have to celebrate the world-changers whenever you get the chance.

Wednesday, April 22, 2015

Earth Day: Recycled Alphabet Stamps

LC's kindergarten class is collecting items to recycle into works of art.

So, I decided we could try something similar at home.

I wanted our recycled items to have a function, so we came up with some recycled alphabet stamps.

Follow along  if you'd like to make some of your own.

I'm forever looking for alphabet manipulatives and word-building tools for Pudge.

She is still a pretty staunch opponent of all activities related to holding a writing utensil and using said utensil in a civilized fashion.

She knows her letters...and adores demonstrating her alphabetic genius.

So, I like giving her tools to show what she knows when she can't translate her brain contents into handwritten letters on a page.

Hence...our recycled alphabet stamps.

I started by printing out a letter template so I could be sure my letters were all the same size.

Want one?  Here ya go...

(Click on that thing and it'll give you a bigger version you can print.  
But it'll really only take you 30 seconds to type one of your own.)

I decided, in the interest of space, I didn't want 26 different stamps.  So, we came up with a version that made one stamper with interchangeable letters.

Get an empty pudding cup...some rice...some heavy duty self-adhesive velcro and leftover cardboard.

Jaw-dropping cell phone picture illustrations.  No need to thank me.

Fill the cup with rice (so when little hands push the stamp down the cup won't collapse) and then hot glue cardboard on top to seal it shut.  (A cereal box would work nicely here.)


Cut around the pudding cup rim and slap your self-adhesive velcro...hook side...on top.  You don't need it to perfectly fill the top of the cup.  Just make it bigger than the letters you'll be using.
Okay.  Now to make the letters.

You'll use your alphabet print out.  And some of those flat magnets you get free from your insurance agent...or your kid's school...or your dentist.  (You can also buy those magnetic sheets and run them through your printer.  But I'm saving the world here.  With my recycling talent.)

Put a letter on top of the magnet and cut it out.
Don't worry about getting too hacked off at the empty space inside the letter.  Just get some box cutters or an exact-o knife or something sharp enough to stab through there and then go back to using your scissors.  That magnet stuff is super easy to cut through.

Then, go get your fuzzy self-adhesive velcro.  This doesn't need to be the heavy duty stuff.
Can we just stop a moment and sigh in appreciation of that velcro collection?  I do not exaggerate when I tell you that I would take a bouquet of velcro dots and laminator sheets over flowers any day of the week.  I don't profess to be sane or logical.  Self-adhesive velcro makes me weak in the knees.

Moving on.

Put fuzzy velcro over the non-magnetic side of your letter.  And, in order for the stamp to work best, you kind of need to make sure you cover the whole letter in fuzz.

But there's a nice perk to doing that...
BOOM.  Multi-sensory learning tool.  Run little fingers over that fuzzy letter shape.  Trace it with your finger while you say its name.  You can hang it on the fridge while you're doing that.  Put those letters above forehead height and give that little shoulder girdle a workout.  Oh, the depths of special education nerddom I can reach at a moment's notice...

Back to your pudding stamper...

Grab your trusty Magna-Doodle...(this one happens to be a 99 cent thrift store find.  I'm telling you.  Al Gore is going to find this post and hunt me down just to kiss me on the mouth.  That's one less Magna-Doodle in the landfills, folks!  You're welcome, Earth.)

And...wait for it....
Stamping without an unholy mess of ink or paint.

This ain't my first rodeo.

Store your letters in an old Thai take out container and you are officially a recycling wonder.  (Of course you can hang them on the fridge, too...or stick them on a cookie sheet and hang it to the wall.  You know how magnets work, people.)
There you have it.  recycled alphabet stamps.

Can't hang around.  We're off to throw some bricks in the tanks of our toilets...take tepid showers and throw our leftover Pop-Tarts on the compost pile before heading out for some good, old-fashioned tree-hugging.

Happy Earth Day, folks.  Get out there and roll around in something there's a good chance you're allergic to.


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 hours...to 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!

913.973.7200

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.)