Thursday, March 15, 2012

"Let's Get it Started!"

So, here is the big question: How does the Dawn Program work anyway?  Well, it is very simple.  If a child is ages 2-5 and has either an official diagnosis of autism from abroad or a recommendation given by our local developmental pediatrician, Dr. Helen Leonard, then that child is eligible for the early intervention portion of the program.  The diagnostic report is then sent to Ms. Tameika Meadows, Dawn's Supervising Therapist, for further review.  Email, phone or Skype chat interviews would then be arranged between the parents and Ms. Meadows.  During these conversations, a time would be set for a face to face meeting with Tameika.  She then flies in to conduct detailed environmental observation on the child.  A behavioral assessment is assembled to determine the strengths and deficits of the child.  Also, extensive interviewing of the parents (and/or others involved with the student candidate) is conducted to get details of the child's history, the family construct and to set desired goals (both short and long term) for the child in need of intervention. 

A brief, user friendly training manual on Applied Behavior Analysis using the Verbal Behavior method is given to the caregivers and thoroughly drilled with them. Once this is complete, specific programs are written by Tameika that individually address the deficits that each child may possess.  The programs are detailed and walk the executor through step by step method to accomplishing the target of the program.  This will then become an ongoing process of program execution and close monitoring of progress for the extent of the time the child is with Dawn.  Weekly correspondence between the parents and Ms. Meadows keeps both parties up to date with any additions or alterations needed to the student's program of study.  This is also an emotional support system to keep families in focus while tackling their challenges head on!  On island visits are scheduled every 3 months to ensure that the programs are being executed properly and that the family is growing in education, understanding and a positive outlook on the challenges they face. 

The Dawn Program is designed to give the most therapeutic support to families on TCI at the least possible cost.  What we are attempting to do is groundbreaking as prior to the organization of this program there were no means of obtaining ABA therapy in our country. We advocate individual accountability with each family as they are responsible for utilizing the mountains of information that will be placed at their fingertips.  It is, by no means, an easy task.  But it can be rewarding beyond belief to see what light can be shone into the darkness when you are given the tools with which you can work.

Thursday, March 08, 2012

"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? 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!"

Thursday, March 01, 2012

"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.