Sunday, December 18, 2011

Merry Christmas Everyone


Jared gave his first talk in church today.  He was so excited to be asked......that even a kid as young as him could "preach from the pulpit".

He did great.  We scripted it for him but it was his words.  We practiced talking at a slow pace and breathing between sentences.  He told his own stories.  He even sat in front of the congregation for the full hour without too much trouble, though I was entertained by some of the positions he sat in - knees on the chair, arms stretched across the other chairs, leaning sideways.  Hey, whatever works.

He received lots of praise and he was loving the attention.

I came across this poem tonight.  Christmas is not and has never been a huge challenge for us.  It is for many though.  It's a good reminder of the life many with ASD and their families experience, and I know that our family is not immune to this.

Autism Night Before Christmas
by Cindy Waeltermann
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…
But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….
Merry Christmas Eve, Everyone! I hope that each of you will be blessed with joy during this holiday season.

Thursday, October 20, 2011

I Wish I Was.......

........a fly on the wall in Jared's classroom.

His teachers tell me he's doing so well.  The areas he needs to improve in are the expected areas - organization and working with others.  He's working at grade level with minimal modifications.  No meltdowns.  Helpful classmates.  His assistant rarely needs to help him with the academics, rather the focus and organization.

I wish I could watch him without him knowing.

Tuesday, September 27, 2011

Putting Yourself Out There

Sean and I left the kids with the grandparents for a night.  It just happened to be a busy night for the boys.

 Long story short......Mostly I was a nervous wreck......Jared survived a big youth activity of Minute to Win It games.  He was nervous about going and asked if he could back out, to which I said no.  It all worked out.

This week Jared auditioned for a musical production at his middle school.  He made it and got a speaking/singing part.  He is over the moon.  I am over the moon.

So much to do.  So much to prepare.  So excited.

Way to go, Jared!!!!

Wednesday, August 31, 2011

First Day of School

By 6:10am Jared was dressed, breakfast eaten, lunch made, and ready for school.  I had barely woken up.

I think someone is excited for school.

Monday, August 1, 2011

Labels

The other day I was on one of the Autism groups I belong to and someone posted a link for Autism paraphernalia (t-shirts, mugs, mouse pads, etc.) which I went to to look around.  The tag line on the merchandise.....Autism Mom.

I struggle with this.  I have mixed and conflicting feelings about the whole thing.

First, for me as a mother:  I have a son with an Autism Spectrum Disorder.  I love him.  I champion his every need.  I kindly educate the ignorant grown ups and I make them educate the immature children and teach Jared  how he can do that too. I collaborate with the adults who get it.  I make sure I am available to them as often as I can be.  I am a soldier.  I try to be his hero.

However

I am also a mother to three typically developing boys.  I love them.  I champion their every need.  I kindly educate the ignorant grown ups.  I teach my boys  how to effectively deal with the immature children.  I collaborate with the adults who get it.  I make sure I am available to them as often as I can be.  I am a soldier.  I try to be their hero.  

If I label myself an Autism Mom then where does that put my other children?  Where does that put me?  Does that indicate how I perceive myself?  Is that how I identify myself?  Because I am more than a mother to an Autistic child.  I am a mother to four sons.  I am a wife.  I am a woman with personal goals and aspirations.  I make time for myself even when it feels impossible to do so.  I find a way.  I need to.

Second, for Jared:  From an educational funding perspective, Jared needs the label.  Autistic.  Disorders.  Disabled.  This is a game.  It's a business.  We need the money.  We use the label.  For Jared personally:  Jared is more than his Autism.  He is more than his ADHD.  He is more than his anxiety.  He is more than his disabilities.  Jared is talented.  Jared is intelligent.  Jared desires to integrate successfully even when he does not know how to make it happen.  

Jared's icebreaker opening line at the moment is,  "I'm Jared.  I have Autism and ADHD."  I can assure you that conversation doesn't go very far.   

I understand that letting people know what's going on can help them have more empathy and patience, but should it be the ultimate definition of who we are.  Autistic.  Autism Mom.  

I doubt that I am expressing all of this the way I really want.  I certainly don't mean to offend.  It's just a t-shirt or a mug.  Right?  Or is it deeper than that?

Sometimes I think we define ourselves right into a little box and we start to see ourselves and teach others to see us in a one dimensional way.  And that limits us, whether in the eyes of others or our own eyes.  

I am not comfortable with that.  For me or Jared.  I know he has limits.  I just don't see where the line is drawn.  Because of that I continue to believe he will go farther that anyone will expect.  He already has.

Saturday, July 23, 2011

Birthday Fun

Actually it did not start out as fun.  I struggle with finding the balance between teaching him what age appropriate behavior is and allowing him the freedom to be the 6 year old he probably is.  It's a big problem I have.

The things his brothers liked at 12 were not the things that Jared wanted and when he didn't get his LEGO Ninjago toys, he couldn't hide his complete and total disappointment in his mother.  I am not one to cave in on a good day, but we went to Walmart and got the Ninjago and the birthday boy was smiling again.

This morning we went to the pool and Jared spent his time on the water slides and wave pool.  It was all good.  The birthday lasted longer than the appointed day, but was okay.  Jared got to do what he had been asking for all week......and he had his Ninjago.



Monday, July 18, 2011

The Print You Leave Behind


Often we never know what kind of impact we have on others.  Those moments usually fade away with little thought on our part.  Sometimes those same moments make an impression on someone we may or may not know.

A young boy stood before a gathering of boys and men and shared a small part of himself, just because he felt like he should.  A young man in the crowd heard, felt, and was touched.  He happened to share that experience in a ward Sunday meeting.  It was that moment that had the most impact on him through a week of activities.  Someone in that meeting was a friend of my parents.

We seldom realize the extent of our reach.  We think what we say and do is of no consequence to others.  Well, it is of great consequence.

We just never know.........

Saturday, July 16, 2011

Public Speaking


I posted this on my other blog a few days ago.  I thought I should add it here.  Camp was awesome for Jared and thanks to Sean going with him, it was a great success.  I am always amazed by what challenges Jared and what comes easy to him.  Apparently, 3200 boys and men in an audience is not a deterrence.  Go figure.


One of the great things about the camp were the guest speakers in the evening.  There were Young Men's Presidents and former NFL players.  Not your boring ward level stuff.  No.  Bigger.

On the last evening of the camp President Beck, the Young Men's President over the whole entire church came and froze with the rest of the gang.  Now from here I am relaying the account from what Sean and the boys have told me.  They are certainly free to correct me, but here is as close as I can get........

My understanding is that Pres. Beck spoke about being missionaries or becoming missionaries.  Some time during his talk, Jared decided that he needed to go to the bathroom, which Sean let him do.  As Jared made his way to the aisle, he let EVERYONE know where he was going.  During this time it seems Pres. Beck asked for a handful of boys to come up and share what they felt they could do to be or become good missionaries.  I don't think Jared heard any of this.

The port-a-potties were located behind the stage and big TV's so he was walking towards the front.  Suddenly, Sean realized that Jared never made it to the potties......he was in line to get on stage!!!  As Jordan and James realized this too, I think there was a sense of panic.  Should one of them get him?  Did Jared know he was NOT in the potty line up?  Did he know why there were boys lined up to go on stage?  What was he going to say?  There are approximately 3200 men and boys in the audience.  What if he froze?  Yes.  Mild panic.

After the first couple of boys went up and spoke, Sean decided the Jared couldn't do worse so he sat back to watch the outcome.

Jared stood there in front of those 3200 men and boys and said that challenges are hard.  He had two - autism and ADHD.  Sometimes people were annoyed by him and that was okay.  Having his challenges made things hard for him, but Jared said he knows that he should never quit or give up and that he needs listen to the spirit.  Then he kept trying to talk and Pres. Beck did a good job trying to end the speech and move on.

Jared can repel, climb walls, hike long distances, and speak in front of 3200.  The best part for Jared was the fist bumping from other boys all the way back to his seat.  I don`t know if he ever made it to the bathroom.

This is a photo from my friend Karri.  Thank you so much for the visual of such a great experience.  I wish I had been there to witness it myself.



Wednesday, July 13, 2011

A Nice Story to Share


My aunt sent this to me.  I thought it was a nice story.  This is for the parents of anyone who struggles with disabilities or who, for what ever reason, are often on the outside looking in.  


Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked.
"Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace Of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

Thursday, June 30, 2011

And the Summer Begins!

Jared came along with me for my last day of working at a school.  He had a medical appointment in the middle of the morning and I thought it best to take him along with me so I wouldn't miss more work than I had to.....(though if I decided not to show up, what would they do?  Fire me?)

He was so helpful and polite to everyone.  At times he would talk too much, but for the most part he did very well.  It wasn't until we got home that I realized that he did not take his meds in the morning.

I really had to praise him for his self control and taking his time to assess his environment and then make appropriate decisions and actions.  I was amazed.

Big camp coming up for him next week.  Sean (Dad) is going with him to help him out, as are his two older brothers.  A scout camp of 2000 boys plus leaders for 6 days in the "wilderness" will be a new experience for him, but I am so excited for his adventure.

Pics and stories coming soon.

Thursday, June 23, 2011

Transition Meeting

Is it okay to be totally happy that even though Jared did better than anyone thought he would and progressed so much, his observation data sheets from the psychologist indicated that some of his behaviors had escalated compared to 5th grade?

Because that data ensures that he gets the same level of assistance for next year, which is what I wanted.  If it had been the same, then he probably would have lost the very thing that has made  him successful this year.

Saturday, June 18, 2011

End of Year Tests

Standardized assessment tests are something I am not a fan of.  I don't like how the scores are used to rank schools.  I don't like the time it takes to prepare for them and the loss of opportunity to be learning other things, all in the name of, "we need to get the kids ready for this assessment test".

I seriously considered asking for an exemption for Jared and pulling him from the testing all together.  He'd never had the experience of writing one before and I worried it would be too much.  Four tests in a week.  It was stressful for certain "typically developing" kids I knew.

He took them.

I received a great email from his math/science teacher this morning.  It started with the word WOW.  Jared pulled out a 66% in a tough math test and an 82% in science.

WOW is right.  I think he knocked our socks off and he was thrilled.  I love it when it all comes together.

Wednesday, June 15, 2011

Typical June

I'm too busy to blog.  Jared is running around the school like a ninja.  He's writing notes to a girl and signing his name (to the horror of his brothers).  The patience of classmates is wearing thin and they tell him he belongs in the special ed room.

Just your typical end of the year stuff.

Transition meeting next week.

Fun.  Fun.  Fun.

Sunday, May 8, 2011

Getting Taller

Jared came to me quite concerned a few days ago.

"Mom," he said, "I think you are shrinking."

"Shrinking?"

"Yeah. We are almost the same height now."

A big smile came over my face as I realized and was amazed at his perspective on the issue at hand.

"Honey, I'm not shrinking.  You are growing!!"

Big smile on his face, "I am?  That's awesome!!"

Mother's Day

I am happy to celebrate Mother's Day on any other day than the assigned day.  Valentines too.  It seems, however that I am the ONLY one on the planet that feels this way and so I am resigned, for the sake of my children and my own mother, to "suck it up" and celebrate Mother's Day.

It's always worth the payoff.

This is from Jared.  He gave it to me after church today.  A few days ago he asked for a duo tang and some paper and I didn't think about it again.

Until today.  
This is what he wrote:

How I love my moTHer
By: Jared 
Mom, I love you for all the things you do, I love it how you make dinner and how you fold the clothes but most importantly I love you because your my mother.  We spend time together to talk about me or to talk about my autism.  I feel love around even when dad is there. 
You care for me and my brothers.  You always know what's right and thats something I like.
I love you with all my heart and I know you love me too.  I hope that even though your upset when me or the brothers do something wrong, you'll still love us.

the END

When Jared was diagnosed and I was in a state of fear and sadness and all that goes with officially knowing that your baby has a life long challenge with no fix and only hard lessons and training needed to co-exist with the "normal folk", I wondered if he would ever know how to express his love.  I wondered if his expressions up to that time were "learned behaviors" or if true emotion was behind it.

Today I received my answer.  Mother's Day or not, I can't find an eloquent enough way to share how it makes me feel.

Friday, April 8, 2011

An Education

Jared's teacher emailed a couple of weeks back asking if we were interested in Jared doing an oral presentation on Autism to his gr. 6 class.  World Autism Awareness Day was coming up and it seemed like a fine time to enlighten these pre-teens on challenges that some good folks have to work with.

We said yes, knowing that Jared had already done this in gr. 5 and found this was an empowering experience for most people involved.....but mostly for Jared.

One gr. 6 class evolved into three gr. 6 classes and a simple 10 minute presentation turned into that plus 35 minutes of questions from the kids and teachers.  Jared, of course, could not answer them all and so Sean and I were able to step in and answer questions when necessary.  Even Jordan, who left his class to attend, answered questions about what it was like to be the sibling and I think we really tried to answer all questions as honestly and realistically as we could.

I was surprised at how thoughtful many of the questions were.  I was surprised at how many questions there were.

One of the highlights for me was when one student asked Jared where he rated himself on the spectrum, Jared thoughtfully stared at the ceiling for a few seconds then looked at his audience and confidently said, "About a four."

Yesterday I was at a workshop and ran into Jared's aide at school.  Later during our lunch break she introduced me to a woman who had a son in Jared's class.  Apparently when she heard that Jared's mom was at the workshop, she wanted to meet me.

She told me that after school on presentation day, her son could not stop talking about Jared's presentation.  It was all he could talk about as she shuttled him from one activity to another.  He said, "I feel bad that people treat Jared badly.  He doesn't have a mean bone in his body!"

About seventy-five children were in attendance that day.  That was feedback from one of them.  I'd like to think that more of them are thinking the same thing now and that they grew and learned a little.

There's a boy who Jared always says hello to who consistently replies with something mean.  This week Jared said hello to him.  The boy just didn't say anything.  Jared saw that as an improvement.  "At least he's not being mean,"  he said.

Small improvements.

Wednesday, March 23, 2011

Initiative

Parent/Teacher interviews.  Again.  So soon.  At least that's how it feels.

Overall things that been relatively peaceful since Christmas break.  I didn't think I'd have much to discuss with Jared's teachers until about a week before interviews.  Then came the stories.

So and so called me gay.
So and so called me a pervert.
So and so called me a retard.

Of course these things don't sit well with me and to add to the mess, when I asked Jared's brother why he didn't complain when he heard these things to someone, Jordan replied, "They don't do anything about that anyway."

That's an entry for another blog, but for this interview it was very relevant.

I went in and Jared's teachers talked about how amazed they were at how far he has come since September. They talked about what he doesn't do as much of anymore and what he is able to do now.  Then they told me about a list Jared worked really hard on in class and brought to one of his teachers when he finished it.

It was a Bully List.  Jared had a list of about 10 children with numbers ranging from 1 to 4 next to their names.  He explained to his teacher that he had ranked these kids based on how strongly he felt they were bullying him.  So his teacher took the time to discuss the rankings and learn why certain numbers were given to certain children and what behaviors were actually behind those numbers.  Eventually they whittled it down to four names that Jared took down to a member of the administration.  They discussed the names and in the end, some boys were hauled down to the office for a little chat.

I was not involved.  This was Jared.  His initiative.  His thought process.

He does not do this at home.  I don't think this came easily to him by any stretch of the imagination, but it does give me some hope.

And this act is a huge leap in progress since forever.  And it doesn't mean resolutions will always come from this kind of exercise, but wouldn't it be nice if he could keep it up.

Saturday, March 5, 2011

When Winning Wins

Saturday is basketball day at our house.  Jordan, Jackson, and Jared are all participating this year.  The main component is skill development and then game play in an intramural kind of situation.

Jordan and Jared are on the same team.  This is Jared's first year.  He SO wanted to play.  I SO wanted him to play and didn't want it to be a bad experience.  We did our usual.....prep him, prep the coaches, prep Jordan.  We did all we could do and now we observe.

In the 10 minutes of the game I managed to see while I was playing taxi, this is what I witnessed:  No one wanting to pass the ball to Jared.  When given the option to pass to Jared or another open player, one of his coaches always yelled to pass to the other player.  When there is an inbound pass to make Jared always wants to take it.  Why? It's one of the few times he gets to handle the ball.  This is a regular occurrence for him and he doesn't like it, but he seems to understand it comes with the territory so he does his best to play where he can.

Contrast that with Jordan who's at least 5'7" and runs the floor like a giraffe in comparison to his little teammates.  Jordan gets the ball.  He scores baskets.  Even the other parents and grandparents watch him with a little more eagerness than the other players who are not their offspring.

Now, contrast that with what I witnessed in Jackson's game.  The opposing team had a player with Downs Syndrome and a helper running along side him.  He played almost the whole game.  The kids quickly learned that they needed to go easier with him.  They let him bounce the ball.  When he made it to the opposite end of the court, his coach raised him into the air and Jackson's coach kept giving this little guy the ball to shoot until he made a basket.  Every time he missed, if one of the kids got the rebound, they gave the ball to the coach.  All the parents cheered loudly.  It brought tears to my eyes.

So here are my questions:  When does that attitude change?  When does winning, able bodied, and able minded come to mean more than making someone feel valued and everyone else to be a part of something bigger than a game?  When does a chemical imbalance, a genetic or chromosome flaw, an improperly developed brain, a physical or mental challenge, become seen as liabilities we don't want to deal with? We talk about inclusion, but does that mean inclusion until it's something really important to us like winning?  If Jared's disabilities were visibly dominant like Downs Syndrome, would it have made a difference?

It seems to me that society can be a lot of talk, but often times we behave decades behind the talk.  Sure inclusion is a good thing, but in reality we act like it's better and easier for "those" people to be invisible and stay out of our games be they athletic or general life.

Now I get the whole winning part.  I love it when my boys' teams do well.  I love to see Jordan score over half his teams points.  I love to see Jackson smile as he runs up and down the court.  I love to see Jared be an awesome defensive player and make some of the coolest bounce passes (like today's between the legs of an opponent).  I love it when they win.  I am a competitive individual.  But today I witnessed 11 and 12 year olds and their coaches play ball at the expense of a fellow player just like they do most weeks, and I witnessed 9 year olds and their coaches give one player the time of his life and probably more joy to his parents than you can imagine.

Where do these kids play when the regular leagues have no use for them?  I'm not just talking about the disabled ones.  How about the ones who just aren't as athletically gifted or physically equal?

No amount of athletic or intellectual ability will ever compensate for true and good character.  I guess another one of my questions is, if winning is so important then where is the line drawn in the sand?  Next year is Jackson going to play with a team that is all inclusive or inclusive but with limits?

I guess time will tell.

Friday, February 18, 2011

Tuesday, February 15, 2011

Valentines

Jared had a Valentine all ready to give away.  One Valentine.  I should have seen it coming, but he had not spoken of this girl for a while and it slipped my mind.

One of his brothers alerted me to the activity.  "Mom, it could end badly."

I know.

It was a simple and sweet gesture - a piece of white paper with a Roses are Red poem scribbled on the front cut out in the shape of a heart.  My own heart broke just a little because I KNEW what would happen if he gave it away.  The feelings were not going to be equally reciprocated.

So we had a talk.  It was a gentle and loving conversation.  It was a talk I would have had with any of my boys had they been in Jared's shoes.

I told him how sweet he was for wanting to do this.  I said that while it was sweet, he needed to re-think giving it away.  Did she feel the same way he did?  Would she be embarrassed to receive his only Valentine?  Would he open them both up to ridicule from others that would cause her to stop talking to him?  There were a few other questions and he answered them all.  At the end I asked what he thought he should do.  Calmly he replied that he thought it would be a better idea no to give it away.

I told him how much I loved him and that I didn't want him to be hurt by other people on such a loving day.  I also explained that now he is in middle school and getting older, he should limit his Valentine expressions to official girlfriends and one day his wife.  This way it's expected and no boundaries are overstepped.

He then told me about telling another good female friend how he felt about her and she stopped talking to him and how it was sad for him.  He was able to relate this experience to the present and realized he did not want the same outcome in this case.  Maintaining a friendship was important to him.

But when could he tell her how much he liked her?  I said 16.  Actually I wanted to say 30, but I'm his mom, give me a break!!!

Jared is 11.  His heart is worn prominently on his sleeve.  So much love to give.

Roses are red.
Violets are blue.
You are so great
That you are awesome too.

That is you, Jared.  Love you so much.  

Friday, February 4, 2011

A Litmus Test for All of Us

As a human, I have not come to the point where I feel Autism Spectrum Disorders are a gift.  I accept it is a fact of life.  I love my son unconditionally.  I will do what it takes to help him become his best self, whatever that may be.  I fear he will not have all the same opportunities as his brothers.  I worry that someday he will fall in love and be rejected.  I worry that someday someone will love him back and her parents will reject him.  I wrestle with the fairness of his life.  I worry.  I fear.  But I know he will never be alone.  He will always have love and a home.

From a spiritual standpoint, I believe we all come to this life with certain predetermined challenges and abilities that we use, nurture, and overcome while we are here to learn, grow, and teach others along the way.  I feel that Jared was prepared for the life he was given.  I feel that I signed up to be his mom.  

I've often thought about what Jared's purpose is in this life.  What is he bringing to the table and others like him that gives all their struggles meaning?  I am sure there are many answers to that question.  Here's what I have  come up with so far......

In my previous line of work, a young man came in almost daily.  He had a special need; I don't know what.  Despite that, aside from some hygiene issues, he looked pretty "normal" until he interacted with you.  He was verbal.  Very verbal.  He would talk to anyone who was around him about something that meant a lot to him (usually video games or family stuff) and nothing to anyone else.  He would talk and talk and it was difficult at times to redirect him.  I witnessed many times people he was talking at be very uncomfortable and just try to turn away and ignore him.  I would see this and wish for someone just to take three minutes out of their boring day in a line up to pay attention to him and treat him like a person.  All I wanted to see was a small moment where someone decided it was okay to engage him in some way.  

A handful of times I witnessed engagement.  Someone took the time to pay attention.  Was it hard?  Probably.  I don't know if this young man ever really noticed if someone paid attention to him or not, but I sure did.  

Sometimes Jared has this same problem.....more so now that he is older.  When he was young he was really cute so you couldn't help but engage with him, but now that he is almost 12 the cute factor is dwindling and he is perceived as more weird than cute.  At times I know the perception is, "What the #%$@ is wrong with you?" because people expect that a disability should always be indicated by some sort of visible, physical sign.   

Perhaps I should stick a cheese hat on his head with the words, "I have Autism, bear with me."

I remember as a young adult, I thought I was all that and the chocolate icing on a cake.  I was well on my way to my reward in heaven and it was going to be pretty good.  Then I got married and learned I wasn't as great as I thought I was and had a lot more to learn.  Then I had children and learned that I really wasn't as great as I thought I was and had tons to learn.  Then I proceeded to raise those children and really, really learned that I wasn't as great as I thought I was and probably wouldn't learn everything I need to learn in this life.  The only thing I could do was move forward in a positive direction and learn and be consistent and learn and love and learn.

How do you feel around those special souls amongst us who have challenges beyond our scope of understanding?  Do you cringe?  Do you ignore?  Do you engage?  Do you love?  Do you support?  Do you walk away thinking "Thank goodness he's not mine"? 

Depending how you answer those questions, you may find that there's more for you to learn in this life.  

I know part of Jared's purpose here is to teach others about him and themselves.  I know this world is filled with others who have that same purpose.  To a degree we all serve that purpose at one time or another - some just do it more on a full time basis.  

Our family still has a lot to learn, but we are working on it.  I hope you are too.

Sunday, January 30, 2011

Big Things

I registered Jared for a big scout camp coming up this summer.  His older brothers are attending and I'm hoping Sean will be able to volunteer and have Jared's back.

I am feeling really excited about it right now.  It's big.  It's super big for Jared.  Any fear that I have that it may be too much for him is being drowned out by the notion that he really could have a successful experience.

You never know until you try.

Wednesday, January 19, 2011

Do I Push Too Hard?

I nearly pulled my hair out tonight. Jared has an exam tomorrow. He's known about it for a few days now. He waited for the study guide. It's exam eve. No guide.

"Jared, we need to study for that exam."

"What exam?"

"Your exam tomorrow."

"Oh. I don't have a study guide."

"What is it on?"

Shrug. "I don't know."

The conversation went on with me asking probing questions to determine what we were going to study with no results but me freaking out and gouging my own eyes. Not literally. The eye gouging part.

I have high expectations of Jared. They are not unattainable, but I am a firm believer in stretching one's self and moving in a forward trajectory in life. Autism or not, Jared can move forward but if no one is helping and coaching him, it won't happen.

He's amazing. He's already accomplished so much and beyond what people expected of him. Why? Because people who cared about him gave him opportunities to grow. We started small and we worked with him every step of the way until he could do all or most of it on his own.

I want him to learn that it's important to take school seriously, even if half of his peers don't. I want him to understand that an education is more important than the latest Xbox game. I want him to learn that he needs to be responsible for himself.

Yes, I know most 11 year old typically developing boys don't get that.

It's just that it took me 6 years to get Jared to hold a pencil properly. These life lessons are so much bigger. 6 years? 10 years? 15 years? It's just a little scary sometimes.

Saturday, January 8, 2011

Basketball

"Don't play team sports," they say.  Yah, I get that.  Yah, I've seen the wisdom of that advice from time to time.  

But Jared did pretty well in basketball tryouts today.  He'll make a team.  The coaches just need to evaluate all the players in order to put together evenly matched teams.  

He's not awesome but he tries hard.  When they get to game playing, I think things will get tougher.  Still, it's a good experience for him.  

I often want to protect him from everything, but I know I need to expose him to difficult situations to help him learn and grow.  It's hard to watch him struggle.  It's hard when he doesn't want to hear advice.  It's hard to see others get frustrated with him.  

So here starts basketball season.  Seat belts on.

Sunday, January 2, 2011

When Taking Pictures......

 This is the face that Jared wants to make in all photos.  Every. Single. One.
If I don't let him, this is the face I get. 

One day I hope to find a happy medium.  Good thing I think both faces are beautiful.

A Year Ago on New Years Eve.....

.......Jared and I were dancing in the den.  Why?  Because he was 10 and that meant in 4 years he would be going to a youth dance and he needed to learn how to dance appropriately.  His idea.  We had so much fun dancing.  He listened and did what I told him EVEN though everything in him wanted to go "Napoleon Dynamite to the jillienth degree".

I've tried a few times over the past year to fit in a little dance lesson here and there.  Sometimes it works, but most of the time he doesn't understand what my problem is and why I want to change the way he dances.

He needs an ultra wide perimeter and enter it at your own risk.  His arms or legs may take you out.  No joke.

This Christmas our ward party ended with a family dance.  I find they are so much fun to observe.  On this night I observed Jared dancing with a girl from his Primary class.  He was in control and doing pretty well.  My anxiety melted as I watched him interact......with a girl.

After that dance he carried on by himself, dancing in the middle of the gym.  The anxiety grew again.  Wide perimeter.  3 and 4 year old kids dancing around and getting into the perimeter.  Amazingly, no injuries.

Oh well, I know he can do it.  That's the important thing.