The Right Time

"So, I've been meaning to ask you about the sign you have on your car....uh...the bumper sticker?  It says kids with Autism can recover?  I've never heard that before...can you explain a little more?"

 

I was pretty shocked by this question.  I had that magnet on my truck for about a year and no one had ever asked me about it.  It wasn't just the question that took me off guard, but it was the genuine interest that set me back.  I was used to the eye rolling and the defensive objections, but not someone who really wanted to understand the statement.

 

Ok, Meadow, don't choke on your food!  Don't act surprised.  This is the moment you've been waiting for.  You "train" everyday for this!  You know what eloquent people sound like...you read their blogs and posts on Facebook!  Be smart.  Be confident.  Don't make things too controversial or too technical.  Just explain...but don't take an hour to do so.  Breathe and let the conversation flow.

 

So, I did.  I told her about children with autism having comorbid conditions that most doctors refused to recognize or treat. She was appalled to think a doctor would not see the child first.

 

I told her it was a book I read, not the internet or some sort of cult, that led me to a doctor who would treat Tristen for his underlying illnesses.  I told her it was extremely expensive, and I started working outside the home to cover the costs; and that I could only do so because the treatment was working- I did not have a sick child home from school regularly to take care of.

 

I told her how the doctor used lab tests to find a strep infection in his gut that was most likely the main cause of his life long fevers and rashes.  I explained how when a person with autism was treated for their illnesses, the severity of their autism would start to fade....sometimes more dramatically..... and that over time, in some cases, the child no longer fits the criteria for autism.

 

The young mother took it all in. She never shared if she knew anyone with autism or her feelings about what I had just told her.  She seemed to be mulling it over in her head.

 

I said, "Every person is an individual and what works for some doesn't work for others.  For us, I followed my gut....I followed the promptings of the Holy Ghost to go after this method of treatment for my son...I had no doubt that I was doing the right thing!  It all made so much sense and had all the answers I had been looking for!  There may be somethings I can't change....like the damage done for having high fevers for nine years....but that's ok with me too, because there IS a lot I CAN change!

 

 I believe it is my job as a mother, to do whatever I possibly can for my child to be his best.  I will spend my last dollar and lose my last friend for my child. I will feel completely alone in this world.  But it will all be worth it."

 

She didn't ask me about vaccines...and with a baby in tow....I imagine she didn't want to know the answer.  That was o.k. too...I think sometimes if we hit 'em to hard with something that controversial, they tend to put up that wall....that scared place where they don't want to listen to anything that shatters their idea of a perfect world where no one is evil or greedy.  This way, if she believes the part about treatment, she will be more open to believing the rest when the time is right :)

An Open Letter to the Autism Moms Who Think I'm Wierd....(and everybody else)

I don't socialize well.

I have anxiety when too many people are looking at me...........I can't possibly read all their faces and guess what they are thinking about me at the same time! 
I get tongue-tied and end up giggling and rambling uncomfortably.  On the way home, I beat myself up, thinking...why can't I just be normal?  Why can't I relate to people.  I feel down and completely inadequate.  I get physically drained when I have to be around lots of people and need hours of "alone-time" to recuperate. 

Today was one of those days.

Instead of getting into an explanation of all the ways I don't relate well to others, I will save that for thegreenbeangirl and keep this post focused on autism, since that's what this blog is about.

There are also many reasons I feel like I don't fit in due to the fact last decade and a half has revolved around autism.  But today, the difference between me and the rest of the world burst in front of my face like a red flag in the form of two faces with  frozen smiles and wide un-blinking eyes.

Brain:  Ok, Meadow...this is a social cue.  What is it?  Think hard what did you just say?  Was it true?  Were you clear in your execution of your sentence?  Why isn't anyone responding to you? Think...you just said 'you would love to be an aide for a teenager with autism for a week-long church camping trip'....

"I just love kids on the spectrum!", I sputtered, "You know I used to work as an educational assistant?  I just miss those kids so much!"

Blank stares...still unmoving. 

Brain: Ok, I'm coming across like a weirdo!  They think I'm insane!  How do I fix this??

"Uh...you know...(laughing uncomfortably)...they have such sweet spirits...I just love to be near them!"

They remained stone-faced as they slowly looked at each other out of the corners of their eyes.

Brain: Epic. Fail.  End this conversation and leave in shame....if you can get your foot out of your mouth

Defeated and confused, I left the building completely mortified.  On the drive home, the emotions were still too raw to replay the conversation in my head to figure it all out.  I was hoping for a friend.  I was hoping to make a connection with a person.  Music blaring, I sang along to drown out my thoughts of misconceptions and self-doubt.

Not until hours later, when I let myself relive that moment, did it occur to me what these two ladies must have been thinking.

One, was the mother of the girl with autism I wanted to volunteer aide time for.  The other, was a close friend, who knew the family well.

The Mother's Brain:  Seriously?  You REALLY WANT to live my life for five days on a camping trip?  Where no electronics are allowed? You want to help with showers and changing maxi pads?  You want to be up all hours of the night so you are completely exhausted?  You want to worry about when the next meltdown will be or who she might hurt?  If you lived my life, you wouldn't want it.  If you knew what I know, you wouldn't be so happy and willing.  It sucks.  Autism sucks.  You have no idea how hard life is and how exhausted I am.  First, why don't you trade places with me for ONE day....24 hours and see how you like it...then we'll talk.

The Friend's Brain:  Oh this poor girl has no idea what my friend has been through!  She doesn't know how hard it would be to care for a girl with autism at that level for five days.  My friend is at her wit's end, and you make it sound like a fun vacation!

(deep breath) Ok...I get it now.

It was not my intention at all to make parenting a special needs child sound like a "walk in the park".  Some fellow "autism moms" might look at my life and think I've got it easy and couldn't  possibly relate.

The mom I talked to today knows I'm a parent of a soon to be 16 year old boy with autism.  She observed me with him over a two day church conference this summer.  She was trying to juggle being leader of her church's youth group with her daughter in tow.  Difficult?  Yeah, the woman deserves a medal!

Tristen, on the other hand, tends to blend in relatively well.

 

She didn't see how hard I fought in the past and how much I worked with him to get to the point where he would attend something like that. No one knows he's had chelation and HBOT.  No one knows about the piles of medical bills. Or the mountain of supplements before school and before bed.

He was good at sitting and being quiet...that's what 10 years of public school taught him!

She also didn't see the little tantrum he had when he had to change his shirt into the conference shirt all the kids got on the first day.  She may not have noticed  I had to drive him home to sleep in his own bed because adult women can't stay in the dorms with the teenage boys, disabled or otherwise, and drove back to the conference on the next day.  Or our packed lunches I hauled all over....or when we ate far from the crowd so the smell of the other food wouldn't be overwhelming. 

She probably noticed when he would get lost in his thoughts and start to talk out loud to himself, I would gently squeeze his knee or rub his back to bring him back to reality....that IS more noticeable.

In comparison, my life with autism is easy...I know that, and I don't take that for granted for one minute.

Let me explain:

Although my struggles are tame compared to most, that does not mean my comments were insincere.  I don't think "autism" is easy.  In fact, I know it's not.  I worked as a special education assistant for five years with a variety of ages and levels of abilities.  However, I can not deny that I loved them all.  Were they challenging?  Yes.  Was it FUN every minute?  No, of course not. 

I'm not a superhero or a saint. I COULD  DO THIS BECAUSE GOING TO A JOB FOR 8 HOURS ALLOWS ME TO LEAVE MY LIFE AT HOME AND FOCUS ON THE KIDS. And then I leave and go home to my kids and worry about all my "life stuff".

As an aide, I had one focus, and that was my student. I had infinite patience and consistency. I don't do as well as a mom. When you are playing the mom role, usually you are playing the role of wife, accountant, personal shopper, maid, taxi driver....etc etc. It is exhausting, to say the least, to be patient and positive when you are worried about "making life happen". I totally get it. I understand why you might look at me like I've got a third arm sticking out of my head. Autism is hard and it's all-consuming and it's not fair and sometimes it seems like their is no end in sight. I get it.

But here is what I love about kids on the spectrum:

I love to figure them out.  I love to see how their minds work.  I love to figure out their language.  I love to see what motivates them  AND finding that great thing that gives them the biggest smile, or makes their eyes dance.  I love it when they get flappy when they are happy!  They are such pure souls deep down inside and that's what I truly see. 

So who are these little darlings I speak of?  Maybe my experience has been the subgroup that are higher functioning?  Nope...I've seen a lot.  I've been bit, spit on, used as a kleenex, sneezed on, swore at, screamed at and licked.  That's just the mouth.  I've changed maxi pads, cleaned up poop smears, poopy pants, pee pants, and endured eye watering gas.  The job is not easy...I know it...but I can not deny I love these kids in spite of it all.

There are those moments, where something you've been working on for months finally clicks...
The excitement when they are happy to see you....
The calm moment when you've followed the routine and you see their bodies relax....
That grin when you've found their favorite thing....
Those times when your eyes meet and you know what the other is thinking...

I LIVE in those places...those GOOD moments...it makes all the hardships worthwhile. 


I'm sorry I sounded like an idiot. 
I'm sorry it sounded like I was simplifying your daily challenges.
I don't know exactly what it's like to be you and walk in your shoes 24/7, but I promise that I will be there to help you in anyway I can.

I  admire you for giving your all to your child.

I get it.

Do you get me?

 

 

Back to School Again

http://www.youtube.com/watch?v=uMtkiS1SU_c

I have to say, 5 am came way too early this morning.  In fact, the dread ensued at 4 am when I gave my clock a look of disbelief and preceded to whine to myself for the next hour.  Seriously??  How can I be THIS tired!?!  I've had two full weeks off of school to catch up on my rest.  Ugh!
At 5:20, I begrudgingly dragged myself out of bed, only to feel the cold floor beneath my feet.  Ugh!  Cold, too?  I can't handle the freezing temps when I am this tired!

We made it to early morning Seminary by 6:00...Tristen having much less trouble than I was keeping awake and focused.  When we got back home, all I could think of was how extremely exhausted I felt.  I couldn't keep my eyes open and my whole body ached no matter how much I stretched.  I have to get my mind focused on school.  Stay off Facebook, I told myself.
I made breakfast and reminded the kids to do their chores....8:00 am came very quickly. 
We got together on the couch for our "morning meeting" during life skills class.  I told them about the next week and what needed to be done by the end of the semester on Friday. 

As we discussed the new sensory objects and activities, I could see their eyes sparkle and in that instant all the selfish thoughts of my own discomfort faded away.  I was reminded of how much I love teaching my kids and playing such a big part in their lives.  At ages 13 and 15, my boys like their alone-time as much as I do.  Most of our vacation was spent enjoying not having to go anywhere or be around anyone.  I really missed my kids!  I am SO glad to be back to school!

http://www.youtube.com/watch?v=dJQGkx5LpuA

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 bows....it 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 on...gift 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.

Truther Talk

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

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 priority....to 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.

Helpless.

I miss my boy.