School's in Session...

So enters the New Day...but not totally new.  Josiah began his journey at almost 3 years old, unable to communicate and with no self-help skills at all.  Here we are now as he enters 2nd grade and presses his way to more progress.  This is not to say that the process has been easy, nor has it been without setbacks.  Somedays, you would never know that Autism is in the picture.  Somedays, it seemed as if he never had a day of intervention at all.  But all in all, it is a journey I would not trade for the world.

Josiah is supported by a web of people who make sure to safeguard his progress as if it were their own.  His Clinical Assistant, and right hand woman, Emily Strong, took over being Jo's personal mentor in the Summer of 2014.  It has been full steam ahead ever since.  She has personally overseen the process of taking immaculate data on Josiah's skills and behaviors and making sure they are reported consistently and accurately to his BCBA, Tameika Meadows.  His programming has taken a giant step forward and the generalization of the skills he gathers in those programs has followed suit. Indeed, it is a dynamic duo!

Jo's days at Precious Treasures International School are highlighted not only with his growing ability to perform with his peers, but his growing ability to interact with his peers!  Genuine relationships are growing from their understanding of their exceptional friend and his decision to let them into his world.  Altogether it creates an atmosphere of mutual learning and respect.  Hopefully this will lead to a lifetime of tolerance and an inner sense of justice for exceptional learners.  If anything, they will take with them a memory of a special boy in their class who taught them to laugh unashamedly, live unselfishly and love unconditionally.  It seems that school is in full session!

And the real teacher is exhausted!

Suspicious Minds

You ever had that feeling that something was in the air?  That something wicked this way comes?  Maybe it's just a creepy suspicion that there are things brewing that you have no control over...a disturbance in the force, if you will! A constant shadow that casts over your free spirit...a haunting.

Well, amongst Josiah's many talents...like quantum banana ingestion...he seems to be able to pick up on random disturbances.  He is constantly on alert that something...or someone...is looking to interrupt his relentless rule of the universe.  But, believe me Buddy, he wasn't ready for this one...

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For 2 years I was given the dubious honor of being this kid's teacher and shadow.  As you can imagine, it has been a challenge very similar to American Ninja Warriors on a daily basis....It was the best of times, it was the worst of times!  But salvation was at hand...for behold, from the North came a burst of fresh air!  A breeze that would breathe new life into the bones of Dawn's oldest student.  Indeed, his programs would be resurrected from mundane to magnificent!! The grace of execution, so longed for by his BCBA, Tameika Meadows, would be placed on display by one intrepid soul.  An artist in her craft, a pioneer amongst the timid...a mighty force for justice and truth would rise to the challenge and take this child from my trembling and finger-paint covered hands and lead him kicking and screaming down the path of progress!! The reign of the Tyrant King is over!!!  The New Era of Enlightenment has DAWNED for Josiah!!! Rise up, ye followers of ABA protocols!  

For BEHOLD!  

I Give You:

Emily Strong: 

Dawn Program Clinical Assistant,  Jedi Knight,  Ray of Sunshine, Generally Awesome Chick

Oh, yeah.  It's goin' down, Baby!  Reloaded and ready to blaze....

(stay tuned, good people)

"The Revolution Will Be Televised..."

(I tentatively clear my throat.)"Umm....excuse me, Mr. Cox." 

(He sighs.)

 

"Sorry, Sir.  I know how much you hate to be interrupted when you are hard at work.  I feel awkward about it, but I have to hand you some importat information...Apparently, Tameika Meadows, the world's finest behavioral analyst and ABA programmer extrodinaire has informed me that though your work is displaying signs of brilliance (if not prodigy) she is not satisfied with the level at which you are performing. 

Now, before you take this personally and throw me under the bus, she also made it clear that she knows it is because I can step up MY game. In efforts to improve my execution as your personal girl Friday and sherpa into the heights of academic and intellectual aptitude, she has equipped me with an entirely new arsenal of programming.  All of which is designed to unleash the genius within you and to allow you the creative freedom that a savant like yourself needs in order to invent new art genres, compose original symphonic works, win Pulitzer Prizes and bridge the time space continuum.  Apparently, you have a list of diseases for which cures are waiting, several pastors awaiting counsel and a boy scout troop to lead.  Also, President Obama called to schedule your luncheon and the Cubans just said, "Ask him to check his voicemail."....weird.....Ah, yes, Prince William and Kate requested your suggestions for names as well as asking if they could be placed on your list of royalty desiring you to stand as Godfather.  And Sir, I promise you, as SOON as I put your new programs into play, you will have all the tools you need to attend to all these demands!  Thank you so much for allowing me this time in your schedule! So.....whaddya think about this?!"

(awkward silence)

 

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"Yeah....I thought that's what you'd say..."

#Teamruletheworld.........stay tuned.

"To Dream the Impossible Dream..."

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First let me say...I hate that song!  But the theme is relevant, I promise....let's go!

There are several fears to conquer when you first discover your child has Autism.  Fear of the future for your child...Fear of judgement from others...Fear of failure in finding approaches that help...Fear of solitude in the fight.  The list could go on and on.  Of all these fears and the many I could mention, surprisingly I suffered from very few and only for a short period of time.  I was blessed.  I think God somehow placed my mind on the fast track as far as recognizing that something wasn't working for Jo and accepting that "something" was called Autism.  For me it was a matter of getting to work as quickly as possible.  I didn't go out and buy books by parents of kids with Autism...I only bought books about treatment techniques.  Ironically, I never read blogs by parents of kids with Autism...I only read publications by doctors on relevant research data.  I think I wiggled out of more conversations than I can think of as friends, family or total strangers began to relay stories that usually began with, "You know, I have a _______ who has a ________ with Autism and they said...."
Now, at first I chalked this up to my general aversion to anyone pluckier or more chipper than myself!  I mean, seriously.  How much June Cleaver can co-exist in one room before imploding into a black hole of rainbows and body glitter?  But with Jo's recent venture into the land of the typical, and the demands that must be met in order to equip him for his quest, I have discovered that there was a much deeper reason behind my irrational behavior.  Fear of Hope.

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The technical term for a person with Autism who blends in almost seamlessly with the general public is called "Recovery".  It has taken me 2 and 1/2 years to actually allow that word to come out of my mouth in reference to my son.  Sure for other kids it is a goal.  But for me?  Yeah...I would prefer to leave room for disappointment.  After all, anything can happen, right?  Why set your sights on a goal that may not be meant for you? Right?....right?

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Resolved:  I hold these truths to be self-evident- Spectrum of Hope is not an accidental title to this blog.  It isn't a clever play on the words that comprise conversations about Autism.  It is the fine line I walk everyday when looking at my son and praying for the stamina to give him the best.  Praying that his mind is truly a diamond trapped inside a large chunk of coal.  Just as Autism is on a spectrum, so is Hope.  You can have a little or a lot in a few or many places at any given time.  And sometimes it takes a bit longer to truly develop it.  One must be fearless in order to have Hope.  One must be audacious....I would go as far as to say that Mr. Obama doesn't know ANYTHING about the Audacity of Hope until he has seen a bell curve graph charting his child as a few points away from mentally retarded and listened to a physician describe how to build a lockable screen door to hold your child in a room.  Yeah....Hope on that!  My point is that you haven't truly conquered Autism until you can Hope.  Hope for the amazing and the improbable....even the impossible.  When you can actually tell people that you are Hoping for full recovery AND actively work toward that goal, then you are moving further up the Spectrum of Hope.  When you move up that spectrum, life becomes worth living!  The world is full of purpose and fulfilment.  There is joy in the midst of the struggle.  Not just with your child, but in everything you do.  Wait...maybe the goal isn't recovery.....maybe the goal is Hope.

 ~

School Daze!

Sigh....you'd better have a seat...

(Cue the Superman theme song...)

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May 23rd (which is also pronounced 'Mayee Twentee-fird' if you are one J.K. Cox) marked Jojo's 5th birthday.  It is hard to believe that we have been chipping away at the mountain of progress for 2 and 1/2 years now.  There are a few people that deserve a shout out right now:  Alicia New, Anna Loi, Alyssa Lehr, Gemma Braithwaite, Milah Behlmaier and Tameika Meadows.  All of these young women have played a role in providing Josiah (and his often CLUELESS parents!) the tools that he is about to put in full throttle....AT SCHOOL!!!

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Now you may think that this deserves some cheerleader style back handsprings, complete with spirit fingers dismount!  And perhaps you are right.  But my Obsessive Parental Paranoia (A.K.A. O.P.P.) will only allow me to give a well placed toe touch and a few tentative fist pumps!  I know what you're thinking...I am a total KILLJOY!  But don't judge me...you don't know what I know...you don't know the evils that lurke behind the deceptively benign face of inclusion!!  No, I am not talking about bullying or any such social ill.  I am speaking of the TRAILER LOAD of information that your supervising therapist is going to demand you to assemble so that she may in turn construct the ultimate "Your school better cater to this child's every need" list that they casually call an Education Plan!  Are you kidding me?  The prep list is like 40 pages long!!  OK....maybe it was only one page....but there were like 40 things on it!  So, you start putting all this together and you can literally feel your therapist's evil grin through the phone as they begin to summon their all of their ABA hoo-doo powers and conjures to strike the deal of a lifetime with the school of your choice.  (And all this time you thought those dolls in their canvas bag were to teach his "Pronoun Program")It sounds like a slice of New York Cheesecake when you realize that your child on the spectrum may be school ready.  But saddle up, Cowboy! The ride of your life is about to commence.

Now, I am a bit behind as we began this process at the beginning of June.  But, I will do my best to bring you up to speed on how this all goes down.  In the meantime, enjoy this picture of Jo exploring the real reason that every boy attends institutes of higher learning....

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The LADIES!!

The Real Housewife of Providenciales, episode 1- "Where did I park?"

"What does a home program look like?"  Now, before I get into that, let me clarify the wording really quickly.  Not what SHOULD it look like.....what DOES it look like!  OK, I think you feel me on this one...here we go...

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Once you have gone through all the steps of getting your diagnosis and deciding on ABA as your intervention core you then have to choose whether to seek an outside service provider or bring the services to yourself!  Here in Provo, the only option we had was to bring the service here.  At first, this looked like a separate therapist working with Josiah outside of our home.  Once the financing for that could not work, we moved on to the therapist being ME!  Now, the way that works is that someone who has a WHOLE lot more of a clue as to what is going on (see one Tameika Meadows, MEd) writes programs (targets and the steps to get there) based on the data taken on Josiah's skills in several areas (or in fancy,"I have a degree in this." talk- domains).  After having been coached in the Errorless Teaching Procedure (basically how to teach the RIGHT responses to a child before they have time to cement the WRONG answers in their heads!), you are off and running!!

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Your Supervising Therapist (who might not be named Tameika Meadows....but SHOULD BE!:0D) will then help you construct a day schedule that is suitable for your lifestyle, goals and the child's development level.  You gather, buy or make (mostly make) materials to assist you with your program execution....and you're off!!!  Flying on wings of living song toward the horizon of healing and progress! (Can you hear the violins playing in the distance?)  Your child becomes a veritable sponge for knowledge as you ascend to heights of achievement that you yourself did not even dream possible!  Each day is a dance of bonding and hope as the chains of trust are forged stronger and stronger between mother and child!  Refreshed from your day of discovery, you will greet your spouse and other children with grand enthusiasm as you share with them in detail every nuance of the time spent tending to the blossoming flower in your family garden.  You'll laugh at the cute anecdotes over  freshly baked cookies while the siblings all take turns expanding each other's vocabulary with stimulating conversation.  Your spouse, responding to the raw energy you emit then reinforces all your days efforts with games and play with the children, whilst you, the weary soldier, relax into a warm bath, lovingly recounting the moments of your day and come up with titles for the best selling book.....no!.....MOVIE that your life will surely become (thus paying for all of the children's college educations and your autistic child's personal assistant who will accompany him on world tours for his speaking engagements before the intellectual giants of the WORLD!!)  MWAH-HA-HA-HA!!!.........this is what your home program should look like.

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Now, will this happen?  Will this be the outline of your days toward improvement?  Most likely not.  Well....at least MINE aren't!  Don't get me wrong.  Some days are amazing to say the least.  Some days you can actually see Hope sitting in the room with you, smiling and waving at you while he whispers all the correct responses into your child's ear and guides the little hands into all the right activities!  SWEET!  Then, there are the other 26 days of the month where you must push for every level you achieve.  Push to get there, and push to maintain it.  Push yourself to stick with it!  When the other kids and the hubby gets home, you are usually too tired to care whether or not THEY care about how your day went!  And your child is probably acting like he never had an ABA session in his life!  You need to talk about it, but are too pooped to whine....You may even momentarily forget why you are doing this in the first place!  What was it that made you think for a second that you could do this?  You get a little lost....A bit panicky...It's that feeling you get after being in the mall all day and only coming out with one bag, full of stuff for someone else, your feet and head hurt and as you dig for your keys at the bottom of an over full purse, causing you to spill your cold coffee, its raining and you suddenly look up and think, "Now, where did I park again?"

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It's OK.  You have a right to feel this way.  And, it may occur more than once.  That's OK, too.  The key to getting through this is COMMUNICATION!!  Between every member of your family (kids included) and your Supervising Therapist there must be honest and constant communication about your needs, the needs of the child you are teaching and how you are managing your load.  Your Therapist can only help you find your pace if you are truthful about what is going on behind and away from the work table.  Set realistic goals for your family.  Work within the realm of what you know is doable.  Your family and therapist are all members of the team that will help your child with autism.  There must be clear roles given that are consistently executed and backup plans must be ready if certain components falter once in a while.  Your home program will look any which way on any given day. Keep striving for the goals you have set. Regroup and recoup when necessary.  The bottom line is that you have to expect to forget where you parked every now and then.  The important thing is to have a team that will help you remember and walk you back to the car! 

"The Burst."

There will be moments when your child with autism will surprise you with exceptionally appropriate behavior or conversation.  When those moments come close together in consistent clumps, you may be looking at a burst!  Read the following excerpt from the latest episode of the thrilling Cox soap opera, "The Young and the Clueless".  In this episode, entitled "The Burst", our hero, Jojo, is desperately trying to woo the object of his affection (that's me) with smooth talk and an invitation to dessert......cue wistful piano theme music.....

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Galileo: "Hi, Mommy."

Me: "Hi Jo!"

Galileo: "What's your name?"

Me (chuckling): "My name is Nicole!  What is your name?"

Galileo: "I'm Josiah Cox!"

Me (stifling peals of laughter): "How are you doing?"

Galileo (obviously pleased with himself): "I'm fine!"

~awkward silence between lovers~

Galileo: "Mommy, I want juice pop, please."

Me: "There are no more, Baby."

~his pause of disbelief~

Galileo: "Are you sure?"

~my pause of disbelief~

Me (turning red as I try to hold back the happy dance!): "Yes, I'm sure!  How about popcorn? (Desperately trying to keep this conversation going!)"

Galileo (after careful consideration): "Yes."

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What???!!!! THAT WAS NEW!!!!

Bursts are important.  Why?  Well, first of all, it is such a nice change when you can see that clearly things are connecting for this kid!  Even if they are small connections they give you hope and are causes for great celebration.  My advice is to then reinforce those moments as much as possible.  Don't get so blown away that you don't try to expand on the moment!  Generalize it to everything possible.  Try to set up the circumstances for the conversation or behavior in several different settings from then on.  The goal is to turn a moment of clarity into a concept of understanding!

Bursts are also a cue to turn up the intensity on the teaching!!  There is cognitive growth happening and you don't want to let that window close on you without shoving as much information as possible through it!!  Consult with your Supervising Therapist and develop strategies to expand on the current programs you are running or introduce new ones!  This is your time so take it.  We want to keep the plateaus of learning to a minimum and keep the upward progression, no matter how slow, at a steady pace!

The moral of the story is this: Don't Give Up!! No conversation or activity is in vain.  You never know what is processing up in that miraculous gray matter between their ears....or when it will kick in!

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