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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"Oh, Be Careful Little Eyes What You See!"

"Buenos Dias!"

Can we talk for a minute?  And when I say "talk", I mean in English.  Now, before any hearts start racing and you put your finger on the bright red "Politically Correct" button, hear me out for a second!  One of the major issues in children with autism is the language delay.  Some children with autism are non-verbal and never acquire functional language and some become world-reknowned orators (quick shout out to Temple Grandin!)  But in between those two poles is, of course, the colorful spectrum shaded with every possible combination of means of communication.  Now that we have established this, let me get to my beef!

In our household, our spoken language is English.  Sure, I took Spanish AND German in high school.  I took German refresher and French in college. I majored in Classical Vocal Performance ad was required to correctly interpret and execute Italian, Latin and even Czech in addition to the afore mentioned languages!  So, I fully appreciate the cultural value of learning second languages. But due to lack of constant practice or immersion, my functional use of those languages is very limited.  However, we live in an English speaking country and speak English fluently in our home.  That is our language.  Now, when Josiah started therapy he had no functional language.  Thankfully, he was verbal and with structured efforts we tapped into his ability to communicate through verbal language.  As his functional language increased so did some words that had no function!  Seemingly at random, Jo would break into words in Spanish and Chinese!!  Some would think, "That's great!! He has autism and still can learn different languages?  That's AMAZING!!"  No its not.  That's ANNOYING.  Because: WE DON'T SPEAK SPANISH OR CHINESE!!  Neither does anyone in Jo's social circles.  So the random words that he has picked up (that he uses out of context, by the way) have no function and therefore turn into meaningless phrases he repeats over and over because he finds it self-stimulating.   That's right.  They push him further back into his own world.  The complete OPPOSITE of what functional language is supposed to do.  So now what?

Well, firstly: where is he getting this stuff from?  If you are a parent of a preschooler I think you know the 3 leaders of the Second Language Syndicate: Dora, Diego and Kai-Lan!  These 3 jokers are ALL OVER THE PLACE, and like mindless drones we sit our children in front of them for hours on end to pacify them while we catch up with facebook or our blog......wait a minute........

(pause for dramatic effect)

Anyway, don't hit the PC button yet...I really do have a valid point.  I am not saying that anything is wrong with these shows or any others that promote second languages.  But you must make sure that the language being learned is functional.  So, unless the whole family is planning to communicate using these newly acquired words and phrases, then you may be setting yourself and your child up for failure....that is if the goal is to get them to use functional language.  Experts tell us all the time that too much TV is bad for the kids anyway.  So how about too much TV in languages that they don't use?  Ummm......yeah........you get the point.  So, ESPECIALLY for children who are delayed, we should be sure that the few minutes a day that they do spend in front of the tube are functionally appropriate and that we watch the show WITH them.  Preferrably making conversation with them about what is happening in the show.  Of course, if your child has no language challenges and you want to enhance their skills in conversational alternative languages, then by all means watch shows that will help that goal with them and use the vocabulary frequently so that they will learn it in context.  I know that defeats the whole purpose of sending them in the room to watch DVD's, but it a much better way to make sure that their best conversations are not being held with imaginary, spanish speaking monkeys or chinese speaking koalas!

"Zai jian!"

"A Word to the Wise is Sufficient."

Jojo's trip to the dentist was enlightening.  Up until this point we have been living in the bubble I like to call "Preschool Autism".  Basically this consists of our therapy sessions, family time and very controlled social situations.  There are not many variables and the few that are there are relatively easy to buffer.  But as Lil' Galileo quickly approaches his 5th birthday it is time to really put his skills (and ours) to the test!  Somedays this can be immensely rewarding...and others it can break you to tears with overwhelming fears of failure.  But that doesn't change the fact that it must be done!  How else would you know what works, what doesn't and what its time to move on to?   So, it was interesting to see Jo's reactions in a very invasive and unpredictable social setting.  It was a  relief to know that he, to the best degree we could expect, was able to handle the visit.  Now, several factors played into that, so Jo asked me to have y'all jot them down.....just FYI!

Firstly, when I booked the appointment I told the receptionist that Jo has autism...point blank, no beating around the bush.  PLEASE don't sabotage well meaning professionals who are trying to give your child the best service possible with the old, "My child is a little sensitive." or "He can be a bit high strung.", song and dance.  You are setting everyone up for failure.  Please do not expect people in public to simply "pick up" on your child's autism or developmental delay.  That is so unfair.  If you can't be brave enough to risk them "judging" your parenting or your child's abilities because you have to shoot this label their way, then you may not truly be owning the autism in the first place.  You can't take power over what you won't own up to.  So, before booking the time I explained Jo's sensitivities and asked if they were experienced in such cases.  After giving me the green light, we locked him in!

Secondly, Devon and I went together.  If you are a single parent, I suggest bringing another person with whom your child is comfortable.  If married, both parents should be there so that they can co-manage a meltdown if it occurs.  If the visit goes without incident, then both parents can reinforce the good behavior.  Also, both parents can learn at the same time what to do (or not do) in these scenarios.  These are the moments when you learn who your child really is!  You don't want to miss that!

Thirdly, it helps to work with a professional who understands your child's challenges and actually wants to be involved in helping with his transitions!  Our dentist actually volunteered to have us bring Jo in every 3 months so he could ride in the chair, have the light shone on him, listen to and touch the various instruments and go through a mock procedure (if none were needed)!  SAY WHAT?!  Then he allowed me to take pictures of himself next to the patient chair and pictures of the instruments so that we could post them on a visual calandar for Jo.  This way, he would not forget the dentist and could mark the days until his next visit!  SAY WHAT??!!  That's right, y'all!  There are professionals out there who are willing to work with you to provide manageble, if not progressive, environments for your child to transition in to mainstream situations!  That is.....IF they know that your child has autism and how that affects him or her.  I know you don't want anyone to label your child.  I know their autism doesn't define them.  But if a label will help persons navigate a disorder that scientists, doctors and psychologists still don't fully understand, then let me (the parent) be the one to give them permission to use the "A" word!  After all, its about prepping the world to deal with Jo as much as prepping him to deal with the world.  That is a parent's function.

So....what's my point here?  Well, I guess what I learned from Jo's Date with Destiny is the same lesson that we keep learning with every new or relived experience:  Nothing is ever certain...but do your best to prepare like it is.  No child can ask for more.

"Some Guys Get All the Luck!"

Josiah was different from day one.  I know this is not gonna sit well with the anti-vaccination crew...but I am just being honest.  This is our experience. There was no 180 degree transformation for our Jojo after a shot.  Sometimes, I wish there was because at least there would be someone to point a finger toward.  Sigh...no such tragedy.  It would appear that his autism was "hard wired". The lottery had paid out and Josiah was the dreaded 1 out of 110.  Some guys get all the luck, huh?
  I remember telling our pediatrician that I literally had to wake Josiah to eat because he wouldn't do the usual "I'm a newborn so you better stick that milk in my mouth every 2 hours or there will be hell to pay" cry that our oldest daughter had down pat.  When he did eat, he ALWAYS choked.  Yes, I do mean every single time.  It seemed like it took weeks...maybe even months for him to properly coordinate that sucking action.  Pacifiers never interested him.  Not that he didn't want them...he just couldn't seem to hold them in his mouth for very long.  Floor time was not very profitable.  He didn't really try hard to creep.  He always preferred sitting up...or better yet, swinging in his swing for HOURS....he would rather sleep in the swing!  Jo never crawled...he went from an awkward one handed, one footed pull-push right into walking....but he attempted it almost 6 weeks later than his big sister had mastered it and he mastered it at least 6 weeks after that.  Jo never responded to his name.  Jo would lay in his playpen for hours with toys and never touch them.  Jo couldn't eat anything unless it was blended and put in a bottle up until he was over 2 years old.  Jo never played with his sister or called her by name.  Jo never called us Mommy or Daddy.  Jo sat in a corner spinning bottle tops for toys. Jo was trapped in his own mind and needed us to figure out how to free him.

Now Josiah is 4 and will be 5 in May.  The strides have been nothing short of phenomenal.  It took developing the drive to learn how to teach Josiah "how to learn".  And it took the ladies with the know how to make sure that we would not slack off!  That is really what Dawn is about.  Giving parents the power to effect their own change.  Opening access to knowledge and then holding us accountable for that knowledge.  Unless we get up off our Blessed Assurance and do the work, our babies have no chance.  We can hire a new therapist for every challenge our child may have, but unless we back it up by knowing and doing the same if not more with our kids....well what is the point?  THAT is the Dawn.  Waking up and realizing, "It really is up to us...and by God's help, we WILL do it!"  After that, the possibilities are endless.