They Said He was Unteachable

I relive that day in our IEP meeting with my son's "team", as a 1st grader I was told by several, he was unteachable, unengaged, and unwilling to cooperate, and I should consider taking him out of school.  He was 6/7 years old then, and I was riddled with anger and heartbreak.  These were EDUCATORS, and they were giving up on a little boy with autism, because he couldn't talk.  Because he didn't fit in the box of the neurotypical child that they determined worthy, nor did he fit in the much smaller box of autism that they deem acceptable to teach in their ONE way that they offer.

You suffer these blows from educators, medical professionals, and many in the community often as a parent to children with special needs, especially parent of children that have no physical voice or functional communication.  They expect you to accept their mediocrity, and one way style of teaching.  They expect you to take their lies and laziness as "we're doing everything we can".   They also expect you to accept them not treating your child with dignity and respect because they have no voice, to tell you that the professionals, teacher and therapists are killing their souls and not presuming competence.

I am going to say this that there are A LOT of AMAZING SPECIAL EDUCATION PROFESSIONALS, and we have been honored to have them.  I am not ignorant to that fact at all.  We have been blessed with some teachers that have brought my son back from the darkest place, after years of being warehoused, marginalized, neglected to the point of being put in the ICU.  

I have been tired of the overplayed excuses from teachers and therapists with all the things he CAN'T do.  They never gave him a chance, offering him a whole 15 minutes of speech, including walking time.  But I digress.

As a mom, you have the PhD on your kid.  You do.  I do, I barely made it out of high school, but NO ONE knows my kids better than me, no one knows when he crinkles his nose what is about to come, when he cocks his head to the left he's happy.  He hates the back of his head being touched, but he loves his forehead being rubbed.  You just know your kid, because they are a part of you.  It did take me awhile to get my Autism Mom Wings and fly with them, but once I did, the world became so much more open and available to him.  

I have followed moms who have walked this treacherous, exhausting, exhilarating, and overwhelming path before me, and if I see something working for their child, I bother them, I ask them, "what did you do?", "can you help me?", "where can I find that?"  "What is my next step?"  The kids, the kids have always been my evidence, and all I need really to be willing to try new supplements, diets, methods, treatments.  If it's working on kids in my circle and I can do some research and see it's working for others, we have nothing to lose to try something.

We have embarked on this new journey for about a year, and I finally feel like I have my wings and I can sort of fly solo with it.  We are doing a program called Rapid Prompting Method which is used to teach academics, and communication is also taught in the process. Despite behaviors, the academic focus of every RPM lesson is designed to activate the reasoning part of the brain so that the student becomes distracted by and engaged in learning.

RPM is distinct from other methods as it is based upon how the brain works. The aim is to bring the student to maximum learning through the open learning channel and to elicit the best (not simply to test) out of the child to enable maximum output in that given time. As a student's cognitive and motor proficiency increases, the sophistication of a student's response also improves.

RPM uses prompting to initiate a student's independent response, without physical support. In addition to teaching letter-chart pointing, RPM also utilizes stencils and other drawing exercises to lead to independent handwriting.

In a nutshell, I just have to say to all of those at those IEP meetings who said, he was not teachable -  YOU WASTED A CRAP TON OF MONEY ON YOUR DEGREES.  YOU ARE WRONG, and YOU OWE HIM AN APOLOGY!   This kid has chops, he knows stuff, he has absorbed more than you can even fathom.  

For example for fun tonight we did a few lessons - here are some of the questions, and his answers.

What part of the body does a rattle snake shake to make noise?  -  a T-A-I-L (so he knows the answer and how to spell it)

If you are watching a sunset, are you facing East, West, North or South?  W-E-S-T  

Name the Tallest Mountain on Earth - Everest or Whitney?  E-V-E-R-E-S-T 

How Many Quarters make $.75 -   3

He knows stuff, a lot of stuff, different stuff, how to spell, he has opinions, I was told his functional communication would be just communicating his needs for food and toys.  Boy did they underestimate him.

UNTEACHABLE - that's what they said.   Well this journey we are on is now about to soar like a rocket ship.  I hope you follow along in our journey.  This is the part where I get to say It's Not Game Over because of Autism, It's GAME ON!!!  

My boys and their HUGE year.

We have one more holiday to go and we can kiss 2014 goodbye, and to tell you the truth since our autism diagnosis 6 years ago, this has by far been the best year and the biggest learning experience and the most growth for the whole family.

The year started out extremely rocky we had horrible tantrums and episodes at school with Franklin and it was so hard because we had him coming off medication and moving toward a more biomedical approach to treat his autism, and it was awful and hard and I wanted to give up almost everyday.  However, we plowed through together and he made amazing strides, and it was a victory.

This was also the year that we were able to give him a voice via an iPad and ProLoQuo2 Go.  We are a work in progress, and everyone at school is not properly trained in it, but we have given the boy a way to communicate with us and it has eliminated a large percentage of his behavior, and it was the biggest dose of gratitude that I could have asked for.  I am moving forward with my education on the device and plan to become a "mommy expert" on the device, via other mommies and classes that I'm finding in our area.

Jackson has started Kindergarten this year and my baby is becoming a big boy and it was hard for mommy to deal with.  I love babies, and part of me has struggled to not "baby" him, and let him grow up and catch up developmentally.  Jackson has made friends, and he has some buddies, and friend that he initiates play with and engages with and I absolutely love all the kids in our lives that we work on our social skills and are building relationships with.

This year after 3 years of therapy and desensitizing them, and working and blood sweat and tears, we conquered THE BEACH.  OMG.  I can't say it enough we can go to the beach, and stay, and no one cries - except me - Happy Tears.

All our work, and all the therapy, and all the sacrifice and the boys are changing, learning, maturing and my believing in them and myself as a parent is making things happen.

My boys have grown and changed and launched so far forward this year, and they work so hard, and mommy found a louder advocate voice, and I feel like we have put them on a path where 2015 is going to KICK ASS.  Our team is fabulous, and I am so happy and anxious to move forward and let this be year the of recovery and improvement.

We were sitting at families house yesterday with all our cousins and friends and I was also forced to look at how different and challenged my kids are.  While everyone was playing on the swings and doing games and things that 5,6, and 7 year olds do.  My 6 year old was locked on some paper cut outs of letters and numbers, and was completely in his own world and wanted nothing to do with the other kiddos.  I saw the difference, I saw his cousins looking at him like he was a little different.  But yet he was HAPPY, and while it hurt me as a mom to see my kids isolating themselves, no matter what I did to try to get them to engage, they were not having it.  Those are my struggles, and my hurts and lack of acceptance of autism.  But even while it hurt me a little, my kids rocked this holiday season and  I couldn't be more grateful.

I got to also see a lot of our autism families kids rocking it,  we saw some amazing things this year in our little OC community, and I'm thankful, and happy and hopeful, and taking all that into 2015 and looking forward to giving autism a run for it's money.

Merry Christmas and Happy New Year

Rebecca

Unspeakable Grit

Being the mom of a non-verbal child is a test of true grit.  I know several of us and our life takes on so many additional roles, including clairvoyant for our child, because most of the time we are trying to just figure out what they are communicating.

My oldest son has severe autism, is non verbal, and has been working with a communication device to help him get his voice and it has been a slow road but his frustration has been cut down a lot.

However, when I'm not with him, he is still in the big bad world alone with very minimal communication skills.  So I trust everyday that what I do and who he is with is aware of that huge safety factor.  Sometimes I feel confident in the people around him at school, and sometimes I'm stunned because it doesn't seem like they have ever heard of autism before.

Behavior is Language

Over the last several months his eloping (running away) has kicked up a notch and 2 times in the last week, one I witnessed myself, and one was told to me by a school aide, that he got away from his group and out of the building.  Thankfully, he was not able to get very far and was caught by adults both times.  We also have a documented case of him eloping out of his classroom and out of the building of school with 3 adults running and chasing him.  The part about all of this is none of the adults chasing him can ask him "why" did you run, "what" do you need, "what" can we help you with.  He can not communicate that, and that is where the grit comes in.  I have to buckle down now and make sure that my dude is under impeccable care.  Because I can't think of what would happen if he got away, it is unspeakable and unthinkable, and brings a flow of tears to my face that I can barely control.

So I have to go now, and ask, and beg, for my childs safety that he get a personal 1 on 1 aide to be with him all the time.  What can happen is unspeakable.  His school was built in the era, of love, peace, and Bobby Sherman and there is no fence and the campus is completely open, which was probably a very poor choice of locations when the district was choosing the location for the Special Education Children.  So I have to prepare myself for what I expect to be a battle, because really it is always about money, and someone is going to pull the I don't have enough money to provide him a full time aide.  Well those EXCUSES are no longer acceptable for me. The school districts have plenty of money, they just have to choose not to waste and abuse the funds they have, because that is the problem (and a whole completely different blog post). 

So begging for my child's safety is what is going to happen this week, and if we don't get what is going to keep him safe and a productive non disruptive student to his classmates, I will have to find a special education advocate, and fight the school and the district and ultimately win.  Because the unspeakable game here is that the districts want to give you as little as possible, hoping that you won't fight, and putting so many hoops in front of you that they hope you give up.  I do believe I have a slam dunk case, and will take it as far as it needs to go.  He's my kid there is no limit to the lengths that I will go to help him, I will turn over every rock and move mountains to make sure we get him where and what he needs to be a successful student.