Thursday, December 26, 2013

The Unexpected Christmas Gift

I wish I had been video recording. 
I should have recording last year's opening presents....and the year before...and the year before.

But, I didn't.

I guess I never thought to, since it wouldn't really be anything exciting to watch later.  No matter how loved the gift was...hidden under the wrapping paper and was always the same reaction.

Tristen would look at the box intently and not say a word.  You could tell in his eyes he was enthralled.  We always bought him something from his list that we knew he wanted, so we never thought we would see a "bad" reaction.   I think if he didn't particularly care for a gift he would put it aside more quickly than the others without uttering a word.

We are quiet and watch him intently.

We longed for a shout or a gasp or a squeal of excitement.  But that just wasn't Tristen's way. 

"What do you think?" we would ask cautiously. 
"Do you like it?"

"Yes." sometimes accompanied by his infamous half-grin.

He would take his toys and play quietly in his room for hours.  We knew he liked his gifts.  We knew he was happy and we had made his Christmas wishes come true.

After 16 years of this tradition we were content in it.  You can imagine our surprise when this year, everything unexpectedly changed.

He waited his turn.
He started to rip off the paper.
His eyes went wide and his mouth made a large "0" shape as he sucked in the air around him in excitement....."I LOVE THIS!"  He exclaimed....hardly able to contain the emotion.

What is happening?  Is this my child?  Is this some sort of once-in-lifetime thing?

Tristen started to squeal with glee as he started reading the package.

Josh and I looked at each other in shock.

Next gift.

We watched intently again.  Maybe we imagined it....

"Minecraft!" His eyes danced and he posed holding up the shirt with a REAL smile on his face...none of the fake gumby smiles of the past.

It continued after gift.

There was no Wii U....the number one item on his list we just couldn't afford.  There was no Super Smash Bros. game....second on his list.   Only one thing in his top five most wanted gifts.  And yet, he was over joyed and he felt it...he showed it and he shared it with us all. 

Seeing him with true excitement that we had missed out on for the past 16 christmas'.....worth the wait.

I think of how I may have taken something that simple for granted; if it had always been there, I would have missed out on this feeling of witnessing a Christmas miracle.

Sunday, December 15, 2013

Truther Talk

Here is a link to my interview with the ladies from Truther talk.
Look in the archives to find my comments after recording :)

Sunday, December 8, 2013

I know better....

I must sound pretty presumptuous.
How do I know more than a special education teacher?  Or an OT with a masters degree?
I don't have a degree.
I've only spent my entire adult life making it my personal mission to understand how to teach my autistic son.  It has been my number one see the world through his eyes so I can better help him to understand it, cope with it, and be productive in it.

When I started working with autistic children, they were not all like my son.  In fact, they were all different....all had different challenges with their autism that was specific to them. 
So how come I think I know how to teach them?

I spend a lot of time observing them.  I like to see their reactions and read their body language and facial expressions.  Sometimes, I engage them in an activity or a topic by instinct.  Sometimes it's trial and error.

I get a sort of sense of them.  Of who they are, what they like....what motivates them.  I LOVE to discover what their favorite things are and see their faces light up!

Not every idea I have had has worked.  I will try something, and if I see it is not "clicking" and I can't see a way around it.... a way to tweek it to get the understanding needed....we try something else.  There are some things you can get through to them, and some things you can't.

A lot has to do with whether the child cares about it or not. 

I once was asked to work with a child on buttoning their pants.  This was an IEP goal.  This particular child did not care if his pants were buttoned.  He was not embarrassed to be seen in his underwear, and would even shuffle out of the bathroom with his pants around his ankles rather than try to button his pants.  We tried lots of hand over hand and prompting.  But what it came down to was that he simply didn't care.  It didn't bother him, so what was the incentive to do it?

These kids aren't robots.  Sometimes I think educators think if we "train" them over and over and over again, they will just do it out of habit or something.  I have never seen that happen without some sort of reward outcome.

Once I see the path in my mind with all the steps to teach a child a task, I will work on it every day...patiently and tirelessly.  There is so much out there an autistic child can learn if we but give them the opportunity.

It's like nails on a chalkboard to me when I see a caregiver do things for a child they can do on their own simply because they don't do it fast enough.  They are in too much of a hurry to let them do what they can. 

Also, if the aide is more worried about participating in the class discussions herself/himself, or doing odd jobs for the teacher, or socializing, rather than focusing on how to help the child learn what he/she can out of the situation.....these are examples of how caregivers can miss opportunities to teach.

I spent some of my most productive days not talking to a single adult.  When I was able to do one-on-one work, I would smile, nod or say hello in passing to co-workers, but ultimately, my mind was focused on my student.  He needed me to stay focused on him so he felt safe.  He needed to know I was there to be his interpreter.

Is it always easy?  No.  Of course it isn't.  There are good days and bad days, just like everything else.  But we always made it through.

With the right mind-set, we can all work together to help these children reach their full potential.

I miss my boy

It is almost 11pm and I need to be bright-eyed and ready to face the world at 5a.m.  Somehow I'm doubting that is going to happen successfully.
I can't sleep.  I'm missing my boy. 
I was listening to Christmas music today and was reminded of a special song I used to sing to him.
We spent a lot of time doing sensory things together, like swinging outside and using the sensory ball.  I would sing to him.  For fun, I put his name into songs he liked.  I don't know if anyone else knows I did that.  It was kind of our special thing.
I can't say that I know what it's like to lose a child.  I'm sure my sorrow in having to move away after five years is but a fraction of that pain.
Most days, I try not to think about it.  I need to live in the present and be here for my family.  My boys need me now, and I wasn't there for them like I should have been when I was working as an aide full-time. 
The terrific thing about being an aide that I especially liked was leaving my life at the door.  I could walk into the school, and tell myself I needed to focus on my student.  I didn't think about bills, or grocery shopping, or what I needed to do after work.  It was all about him. 
I wanted to give him my full attention so I could understand his non-verbal communications.  I wanted him to know my focus was on him.
Kids with autism are smart.  They know when you are busy chatting or distracted by a task....and they see it as an opportunity to get away with something.  Maybe not all kids....but this kid did that for sure.  If he thought I was distracted his behavior would change.  He would try to get into things he knew he shouldn't.  You had to give the little munchkin credit....he was good!
The time I miss the most was our sensory room time together.
When I took over for his aide when he was in kinder garden, he had a lot of sensory room time.  He loved to lay back on a large sensory ball, and with you sitting opposite him, he would put his legs up on your lap so you could push on his chest and bounce him.  He LOVED it. 
We spent a lot of scheduled time in there alone.  The aide told me she got too tired of bouncing him, so she would shut him in the room and just peek at him through the window...sometimes for 45 minutes at a time, while he wandered around the room on his tip toes.
I wanted to use the time more productively.  I understood his need for the sensory input/output to help him cope with the tasks set before him at school.  Some days my arms would ache after bouncing him so long....but this wasn't about me. 
I'd sing him songs.  I'd listen to him make sounds.  If he made a sound repeatedly, I would sing a song that seemed to match what he was doing.
Soon, I was able to stop bouncing him and wait.  Wait in the quiet room, with no sound and no distractions....wait patiently....and he would request a song.  Oh how his face would light up with the biggest grin and giggle!  We were communicating!  We were playing together!  It was pure joy!
While it lasted....
Who knows how far we could have gone?  How many more words or phrases we could have shared?  How many others would he have transferred this knowledge to?
That's the sad part of being an aide.  You don't have the final say.
You take direction from the speech therapist, the occupational therapist, possible the physical therapist and the special ed teacher.  You do as they say.  They make the rules and plan your day (for the most part.)
Someone decided he shouldn't be spending all his time bouncing on the ball.  He needed to choose other things to do in the sensory room, like bounce on the trampoline.
It didn't make sense to me.  First of all, if it's his sensory time, how can we tell him how to use it?  I mean, what fills a sensory void for some won't work for others.  Not to mention all of our work towards verbalization was put to a screeching halt.

What I have to remember is, things have changed in special education.  Because of budget cuts, they are moving away from one-on-one aides.  There are too many kids with severe needs, and even if I was there, I would not be able to teach him the way I believe is best for him.

I am sad because I wish I could do more.  I know he is capable of more progress.  But by the time these kids get to Middle School, they are so far from their peers, they are basically "contained" for the day.  Less and less effort is put into teaching them....they are just there.  They are fed and bathroomed.  If there behavior is good, they spend a lot of time waiting while the staff takes care of the one's who are difficult.

So sad.

Not right.


I miss my boy.