Friday, September 27, 2013

Can you see the Baby Steps? Teaching Autistic Children

In my 15 year old autistic son's IEP (an educational plan put together by his teachers), one of his goals is to spontaneously engage in conversations with his peers.

I'm not gonna lie...I HATED this goal the minute his teacher suggested it.
Here's why:
1)  First of all he has autism.  His disability specifically inhibits him to do this spontaneously.  That is like saying a child in a wheel-chair has the goal to walk unassisted.  You can't make that big of a starts with baby steps....maybe literally depending on the case.....but the fact is, in either situation, the child NEEDS TO BE TAUGHT HOW.

2) Whenever faced with the task of making a goal for a student, one should ALWAYS this a reasonable request?  Is this something they will need in their life?  Do I really for see them accomplishing this goal, or am I setting them up for failure?  No parent likes to see the same goal on an IEP year after makes it look like there is no progress being made.

3)Do you already have a feasible plan of how to accomplish the goal?  Can you see crossing the finish line?

Now, Tristen is very good at following rules.  Almost to a fault at times, because in life there are many gray areas despite being taught "black" and "white" "always" and "nevers".  It's confusing.
So, if a teacher gave him a direction, such as needing to ask a student for help before asking the teacher, he will, but it causes a lot of anxiety, because in his mind, it isn't so much of the social interaction he is shying away from, it is more the worry that the student won't know the answer either or will give him the wrong answer.  He wants to go to the teacher, because they always have the right answer.

It also is not in his wiring at this point to WANT friendships.  That is the kind of autism that is specific to Tristen.  He has NEVER asked to have anyone over for his birthday.  He has NEVER asked for a play date or to have a friend "hang out".   He prefers to sit alone.  And from years of observation and knowing this child from birth, it has less to do than fear of social interaction and more to do with not liking what the person is doing or eating.....especially eating!

I see him now, as a teenager, being a bit more shy around girls, and less likely to give eye contact.  I think that is age appropriate, although it manifests itself in a more autistic way.

When he finds out someone has the same interest as he does, he will talk to them, and be excited to do so, about that topic.

For example, his uncle liked Pokemon as a kid.  Once, he saw Tristen playing with Pokemon cards and he talked to him about it.  He later brought in his old cards and videos to show him.  From then on, whenever his uncle came over, Tristen would be excited to talk to him about Pokemon.

It makes sense to me, then, if I were to teach a child like Tristen about making friends, I would start by teaching him how to ask someone what there interests are to see if he can make a connection, before simply expecting him to make a friend who he wants to sit by at lunch everyday.

Baby steps. 

To have a job and be out in the community, social skills are essential.  I focus more on manners than friendships.  People can get along without having lots of friends. 

In our home school "Skills" class we talk about social interaction.  Tristen had the initial concept down.....if someone says "hi" to me, I say "hi" in return.

What it looked like: 
"Hi Tristen!"  (big, warm, animated smile)
"hi" as he averted his eyes from the person and quickly walked past them as quickly as he could to avoid any more interaction.)
Most of the time, as he is quickly rushing past, the person talking is trying to follow up and continue the conversation with a "How are you doing today?" which Tristen has completely ignored in his attempt to escape the situation.

So, we talked about how we have to wait for social/facial cues that someone is done talking to us before we walk away.  And the only way we will know, is if we LOOK at the person's face.

The Baby Steps Look Like This:
1)You see a person.  Know they will probably say "hi" to you.
2)Say "hi" in return.
3)Look the person in the face to see if they are done talking to you before you walk away.  Expect a second question.
4)Answer the second question.
5)When there has been a pause in talking, you know the conversation is done.
6)End with a smile

I am happy to report that Tristen has made it all the way to step six within the first four weeks of school.  We had interactions six days a week.  Each day, we discussed the interactions and he was able to pick out stickers when he remembered the steps and responded appropriately. 
That was enough.  That's all he needed.

1)break down exactly what you want from the student
2)pick a reasonable reward for that child (stickers won't work for everyone)

Wednesday, September 25, 2013

Fill in the Blank

Finish this sentence:

If God can do anything, he can help me________.

Tristen did as he was asked.  I read his paper.  If God can do anything, he can help me THINK BETTER.

I had to choke back the tears that were welling up, threatening to blur my vision and give me away to the rest of the class.  This is the first time my 15 year old with autism has ever talked about or shared the fact that he may be aware of his disability.

How, you may ask, could we have gotten along this far on our journey without telling him he had a disability?

Well, that is exactly what shocked his teachers last year when I asked that he not be a part of the unit "Learning about Our disabilities" in the CD classroom.

"You don't want Tristen to KNOW he has Autism?" his teacher asked, not careful to hide her judgemental tone.  (I think they wanted him to wear a bracelet or T-shirt or something with his disability on it.)

Now, maybe that sort of idea worked for the students at McKinley High....they wore what made them different written on T-shirts and were proud that they were not perfect.  They embraced the qualities and made being different ok.

The big difference there, isn't the fact the students from "Glee" who preformed "Born This Way", ,  fought most of their lives with the adjective, it was their level of understanding of life and people and relationships....all things a person with autism struggles to understand.

As parents, we have been very careful over the years how we talk about Tristen, especially in front of him.  We NEVER introduce him..."this is our oldest Tristen, he has autism".  Later in casual conversation we might tell the individual about him, but we don't want him to feel like he has a negative label attached to him at every introduction.

He doesn't really realize he is in special education classes.  He never refers to himself as "special".  (That's how he describes food that is ok for him to eat.)

As his younger brother was growing up, sometimes he would get upset and wonder why Tristen didn't have to read as long as him or have as much homework.  We just told him it was harder for Tristen to learn, so we had to be understanding that things weren't always going to be the same.  Tristen was ok with that.  He knew school was hard for him.

In the past few years, we've talked to Tanner about how he is able to have a life his brother probably won't have.  He is very understanding and very good to his brother....but we don't talk about negatives in front of his brother.

If a small child...four or five... came up to you with the dream of one day going to the you tell them how the odds aren't in his favor?  Do you quickly squash his dreams and get him back to reality?  "There is no way you will be smart enough to be an astronaut."

So, why don't I want my son to wear his disability proudly?

I think of the first time someone pointed out a physical flaw that I had never noticed, even though I was well into adulthood.  After seeing what they saw, my self-esteem, which was not that great to begin with, took a nose dive.  It's all I saw in the mirror and it made me shy away from people even more.

And then I think of my sweet boy, with no gile in his heart....pure and inocent...and someone points out he has a disability. 

"You have autism.  Do you know what that means?  You can't relate to people.  People can't understand you.  You don't understand directions.  You can' Can' CAN'T".  All to a boy who always thought he could.

I am o.k. with telling Tristen's classmates...."Tristen doesn't like loud noises, like screaming in the lunchroom or the fire alarm."  Tristen knows he doesn't like these things.  It's specific to him, not necessarily autism.

So, maybe I am out of sync with the media's portrayal of High School students, and maybe I simply don't understand what the teacher's are trying to teach my son.  Either way, he is MY son.  I know him best.  I want him built up and not torn down.  I want him to believe in love himself.   To know that being who he ok.

There are kids who can understand their challenges.  There are kids who don't.  There is no excuse for educated individuals lumping them all together, instead of seeing them for the promising, unique, important individuals they are.

When that day comes, and Tristen asks me why he is different, I'll be ready.  I will be gentle and explain things in a way where he will not be confused or put-down.  My time-table is not someone else's time-table....and when he's ready, I'll be there....not because it fit into the lesson plans...but because it was the right time for him.

Tuesday, September 17, 2013

If You've Met One Person Hit By a Bus....

     In the autism world there is a saying...."If you've met a child with autism, then you've met one child with autism."  This is an attempt to describe what is called the Autism Spectrum.  Autism is a spectrum disorder because there are varying degrees of severity.  Some may not be able to talk, while others may go about public places unnoticed.
     When my son was diagnosed at two years old in 2000, the diagnostic criteria was broke into three categories.  Social, Speech and Development.  He could not talk or point to objects.  He did not babble.  He was a "picky-eater" and had trouble sleeping.  He lined up toys instead of playing with them appropriately.  He did not come when he was called, and seemed overly determined.
Rashes and Fevers and Strep and Ear Infections and Vomiting weren't even considered.
    At that time, he was thought to be too loving to his family and baby brother to fit the criteria for autism under the Social category.  No speech...check.  Development wise he didn't act like a typical toddler...didn't make eye contact....not meeting milestones....check.
   After reading the evaluation reports from the early intervention team, and passing the hearing test, the Neurologist, who met us just that time, observed for a few minutes and decided Tristen was on the Autism spectrum....he had Pervasive Developmental Delay, Not Otherwise Specified.
   I soon learned it was easier to just say "autistic" when people questioned his odd least people had seen Rainman.  PDD NOS was too hard to explain in the beginning.
   When he was eight, we moved to Michigan and he was evaluated by the school psychologist who observed him a few times in the classroom.
   "Mrs. Davidson, I think there must be some mistake, Tristen does not seem to have autism...not that I can see anyway."
     I told him how to "poke the bear". 
     "Take him out in the middle of class to test him without giving him warning.  Stop him from completing work and tell him it's time to go.  Change his schedule.  Have you had any fire drills?"  The list of ideas continued.
    Later that week, I received a phone call saying not only did they see the autistic traits, they had been able to label him autistic using the GARS assessment from the staff which ensured him special education services.
     When a person meets a child with autism, what it comes down to is severity and expectations and experiences.  Who do you know already with autism?  That first person you meet you will judge all the rest against....which was tough as Tristen grew up because most people's reference was Raymond Babbitt.  Either they were confused because he didn't act like that, or they were curious to know what special ability he had so they could be amazed and entertained....

Well, that's not how it works. 

If you've met one person hit by a bus, you've met one person hit by a bus.

Just because two individuals were injured in a terrible accident, does not mean they will come away with the same injuries.  They could be hit by the same bus at the same time and still have different injuries.  There injuries could be very similar with only a few discrepancies.
That's life.  That's chance.  That's the unpredictability of our human form and how it works.
We know about genetics.  That applies here as well.  One person could have genes where they quickly recover.  Maybe one person's background makes them flinch a little less than the other's.  One could have a simple fracture, the other could die. 
What about the bus?  How big was it?  How fast was it going?  How old were the victims at time of impact?  Were they trying to get away, or did they not see it coming.

There are thousands of scenarios that could be played out to decipher what kind of injuries a person would have after being hit by a bus.

"If you've met a child with autism, you've met ONE child with autism."

There is injury there.  Somehow, there little bodies were injured and couldn't recover completely.  Some have life-long pain and their injuries seem to be worse than others.

***I move to a new place, and introduce my son to new people. 
"He seems fine."
"Doesn't he flap or walk on his tip-toes?"
Looks of confusion at my boys...."Which one has the autism" ( this says more about Tanner than it does about Tristen)
"He will be fine, don't worry about him."

On one hand, I am truly truly blessed by my Heavenly Father to grant me such a sweet and awesome and capable child that is a better human being than I can ever hope to be.  I am so extremely blessed that we have come to this point, where he can not be picked out of a crowd....and as long as no one tries to talk to him, you would have no idea of his challenges.

You wouldn't know that on the way to church, we talk about how we have to answer a person's question if they talk to you.  You wouldn't know we discuss how to smile politely and make eye contact. 

You probably didn't see the little cues I gave him when he started to go off into his head and talk to himself....reciting his latest favorite TV show.

No one saw this morning when he had a meltdown over a new PE unit that was too difficult.  The tears and the frustration...the slams of his body as he collapses in defeat.

You weren't there when we were in the ER and we had to tell the doctor this 147lb. 15 year old broke his hand spinning down the hallway. 

No one else sees the delight in his eyes when we read a book at the fifth grade level and he knows almost all the words.

You can't here him now, plopping on the couch, stomping and reciting the funniest parts of movies with gusto over and over again.

Tristen has come so so far.  I'm not going to have anyone take that way from him.  That is what he earned for his hard "seem fine"....even though he doesn't realize he wasn't fine to begin with.

Tristen is unique just as all children with autism are....and he is on a different part of his journey.  One where we are working to find his place in the world because adulthood is coming up fast.

The "Bus" that hit my newborn baby was the Hep B vaccine, and his injuries are life-long.  And just because when the "bus" hit a thousand other children and didn't leave a mark, doesn't mean it didn't hurt him. 

Because after all...when you've met one person hit by a bus.....