Our Journey Through ASD

Merry Christmas Everyone

2011-12-18T21:01:00.002-07:00

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.

I Wish I Was.......

2011-10-20T20:47:00.000-06:00

........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.

Putting Yourself Out There

2011-09-27T19:02:00.002-06:00

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!!!!

First Day of School

2011-08-31T06:53:00.001-06:00

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.

Labels

2011-08-01T22:22:00.002-06:00

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.

Birthday Fun

2011-07-23T20:21:00.000-06:00

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.

The Print You Leave Behind

2011-07-18T20:36:00.002-06:00

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.........

Public Speaking

2011-07-16T22:42:00.002-06:00

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.

A Nice Story to Share

2011-07-13T18:24:00.003-06:00

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.

And the Summer Begins!

2011-06-30T09:19:00.001-06:00

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.

Transition Meeting

2011-06-23T12:35:00.000-06:00

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.

End of Year Tests

2011-06-18T01:47:00.000-06:00

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.

Typical June

2011-06-15T22:25:00.001-06:00

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.

Getting Taller

2011-05-08T19:34:00.000-06:00

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

2011-05-08T19:08:00.002-06:00

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.

An Education

2011-04-08T10:49:00.001-06:00

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.

Initiative

2011-03-23T19:22:00.000-06:00

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.

When Winning Wins

2011-03-05T19:36:00.002-07:00

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.

Singing

2011-02-18T22:09:00.000-07:00

He loves to sing. I love to hear it!!

The Prize For No Cavities

2011-02-16T19:52:00.001-07:00

Valentines

2011-02-15T05:42:00.000-07:00

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.

A Litmus Test for All of Us

2011-02-04T13:45:00.001-07:00

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.

Big Things

2011-01-30T15:24:00.000-07:00

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.

Do I Push Too Hard?

2011-01-19T19:35:00.001-07:00

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.

Just Want to Say........

2011-01-16T19:39:00.002-07:00

I love my boy.

Basketball

2011-01-08T21:17:00.000-07:00

"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.

When Taking Pictures......

2011-01-02T16:31:00.000-07:00

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.....

2011-01-02T14:21:00.000-07:00

.......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.

Family Photos

2010-10-31T08:12:00.000-06:00

Jared's the most photogenic of the bunch. He loves to have his picture taken. This is a great little family I get to be a part of.

Parent/Teacher Interviews

2010-10-24T19:41:00.002-06:00

For the most part, my life in the parent/teacher interview process has been this......"You are the parents we don't need to see."

We still go. It sends a positive message to the teachers and to our boys. We care. We are on top of things (I say that loosely). We aren't going to let our boys slip through the cracks. No slacking off, kidlets, the parents are present.

Jared's interviews are so very important. I go in and gather as much information as I can on how he is doing academically and socially at school. I can't be a fly on the wall at school and because of that I miss the majority of his social interactions with people outside of the "safety zone" of his home.

I was told he was adjusting well to middle school. Yes, there have been some issues with other kids and I am aware of some of them, but overall he's transitioned well to a new school, schedule, and educational format. He has his locker. He has five different teachers. He's making good noise on his trumpet. He's showing skill physically. He's learning the ropes and participating in class. Often he is right on subject and one teacher said when he's not he is easy to redirect. She also said what disappoints her is that his classmates don't give him enough credit and she's always so happy when he comes up with an answer that he can share and show leadership.

Aside from a full time aide, they try to modify his education as little as possible. He gets extra time for exams and they are done outside the classroom with his aide. When they see he is struggling, they modify for that particular exercise.

It's a good report, but I don't find any rest in it. I'm still vigilant that they are not pushing their agenda at his expense. I want to make sure that he doesn't lose his aide because Jared's doing so well in their eyes. Still, I am happy they challenge him. I want the bar set high. I do it at home. Tell me Jared can't do something and I say, "Lets try and see." He surprises us a lot of the time. It may not be perfect, but perfection isn't the benchmark.

Thankful For My Boy

2010-10-10T18:52:00.001-06:00

I remember when Jared was born. I was exhausted. I'd had contractions at 15 minutes apart for 4 days and there was no sleep to be had. Because of it he was taken early via C-section (it's the only way we have figured out how to get gigantic headed boys out of my body) and this little boy with a head of dark, dark, hair entered our family.

Never did I anticipate the life that was to follow. He was an energetic baby and toddler and we loved him. He never stopped entertaining us or making us tired. He was always the center of attention. Then we began to see signs that would be concerning, yet so hard to figure out and then came the years of trying to figure it out.

And diagnosis came. It didn't really change life at all except that life now had a name and acceptance had to come....acceptance in that I couldn't take this away from him. I couldn't fix it.

I've always felt that Jared was going to be a teacher to people. Today I told someone that Jared had an ASD and ADHD. She was surprised. She must have thought he was a weird kid. It's not like he behaves like other children. But Jared has all his limbs; he walks on his own; he can see and hear; he has no physically distinguishable features that may tell someone he has a disability. He teaches people that just because you may look "normal", it may not be the "normal" you identify with.

It's hard to be his mom. There. I said it. It's hard. That doesn't mean that I don't enjoy it. Nor does it mean I would ever choose not to be his mother. I love being "Mom" to Jared and I choose to think that only I could ever do the job.

I am so thankful for Jared and for the love that I feel for him and for the lessons of life that have come through him. Do I have days when I wish I could take this all away from him? Yes. I do. But the reality is that is something that cannot be taken away.

I am grateful that he has a Dad and three other brothers to also help him along the way. I am grateful that we are on this journey together as a family.

Happy Thanksgiving.

The Fist Pump

2010-10-07T22:50:00.000-06:00

Jared is a fist pumper. He's about as exuberant about it as an athlete.....just in a different arena.

"Yes, Jared, we can go get Slurpees."
"Yes!!!!" Fist pump.

"Yes, Jared, you can have the band hoodie"
Yes!!!!! Fist pump.

"Jared, we are going to a movie"
"Yessss!!!!" Fist pump.

"Mom, can I have a cream cheese sandwich?"
"Sure."
"Yesss!!!!!" Double fist pump.

Make sure you are NEVER standing behind him when he's fist pumping. He may take you out.

Back From a Break

2010-10-03T00:21:00.000-06:00

I took a rather lengthy blogging break and now we are back.

Over the last few months we chilled and let summer take its course. Jared practiced middle school kinds of things like mastering combinations for his locker at school. He and I talked a lot about what to expect at a new school and figuring out which school supplies would work best for him and how many school supplies were too many.

We hiked less than I wanted to over the summer, but still squeezed it in. We had family come and visit. Bigger plans were scrapped because it rained every time we set a date.

He went through some anxiety ridden days. He survived basketball camp. He experienced negative treatment by a thoughtless few and it was witnessed by older brothers who didn't realize what Jared has to deal with from time to time. He had older brothers who stood up for him and worried about his first few days of school.

And school began.......no breakdowns. No tantrums. Some problems with other children, but we are educating him and them. He has an assistant who helps him in each class. He sees a school counsellor regularly. He asks to see her when he needs to talk. He eats lunch most days with his brother Jordan, who is doing his best to look out for him. Friendships are still difficult and that's not a quick fix, but Jared's managing best he can.

I would love for things to be even better, but I am happy with what we have. I wish I didn't have to deal with the sporadic bullying. It makes me angry, but the kids that are doing it have issues and struggles of their own. The "regular" kids are not the problem. I just stay vigilant and I speak out when necessary. Jared's safety and well being are my top priorities.

And so we move into the second month of school.........to be continued........

June Always Feels Like a Gong Show

2010-06-14T10:22:00.003-06:00

Kids go nuts in June. Everyone is tired of school and that goes for students, teachers, and parents. Kids act out more. I don't want to make any more lunches.

Jared is acting up. He's lippy, defiant, losing his temper.....but only at home. He is hating home big time right now. He loves school. He doesn't want it to end. I checked in on how things were going there and there have been no problems. I'm glad about that, but it makes me wonder if he's just acting out where it's safe or are we doing things differently and causing this behavior.

All the boys are done. Done. Done. DONE. There is stress about exams for James and Jordan, and I do give them some of that stress. I expect good marks from smart students and they are smart. It seems that every one is on some one's case. Now that I write it down, I see that we are a fertile breeding ground for Jared to go off the edge.

I just don't see how it can really be avoided. This is life.....at least our life. We try to keep life as simple and straight forward as possible, but stuff happens. While I would love life to stay safe and secure for Jared at all times, I can't shelter him from everything, right?

Back to Back Years Don't Produce the Same Results

2010-05-27T08:31:00.003-06:00

Last year Jared joined running club.

http://deborahz.blogspot.com/2009/03/run-for-fun.html

http://deborahz.blogspot.com/2009/03/ups-and-downs-of-running.html

http://deborahz.blogspot.com/2009/05/in-zone.html

http://deborahz.blogspot.com/2009/05/crowning-moment.html

This year he did again. He did so well last year with all the work and preparation we did. I felt like he was just going to take off this year. Something unexpected happened this past year that affected my plans and while I was happy for that which was unexpected, it threw some things off.

When Jared ran last year, he was about 68 pounds. We could count his ribs. He was skinny. We attributed this to his ADHD medications. It affects his appetite and he ate much less than his brothers, who are much more solid physically anyway. Jackson was only about 10 pounds less than him and 2 1/2 years younger. The doctors monitored his weight and we always kept in mind that his meds had the potential to mess with his growth.

Well, Jared's little body did something these last few months. He got meaty. His face filled out. He's got a little belly. His body is looking like what his older brothers did at that same age.

He's been having trouble with the running this year. Jared can be very sensitive to body sensations whether they be from certain clothing, or glue drying on your skin. Jared's new body shape was not helping his running and he felt every bit of it.

At his last doctor's appointment Jared weighed in at 94 pounds. That is just over 25 pounds gained in a year!!!! No wonder he's having trouble this year. I think this weight has come on faster than his body could adjust.

I decided not to put him in the road race this year just because he was perseverating too much while on the course and I didn't want him to melt down during the race. We were both disappointed, but even he agreed that it was best.

From a larger perspective, I am happy to see my boy chub out. With my other boys this was the sign that a growth spurt was in the near future. Jared is on schedule and while he may not get to be as tall as his brothers (this would have been the case meds or not) I am glad to see that he may not be as behind in growing as I was fearing. It's all good.

So while the running may not have panned out like we planned, other good things made up for that in big ways.

I'm Just Trying To Be Proactive

2010-05-05T12:05:00.000-06:00

September is four months away. For some that is a long way off. For me it feels like tomorrow and I'd better start preparing for it now, lest time gets away from me.

Jared is now nearing the end of his 5th grade year. This means that middle school begins in the fall. This means new school, new students, new teachers, school bus, various classrooms, lockers, locker combinations, really crowded hallways, and learning a band instrument (he picked the trumpet). I may not survive this. He probably will be okay.

He will probably be okay. That is what I keep telling myself. I do because I've already had a meeting with the middle school administration even though the transition meetings don't start till next week. I have already taken him to the school when the halls were full of kids. I have sat with him through a band class and the teacher was fantastic enough to let him sit with the trumpet players. The noise didn't bother him (yeah!!) and he's more excited about band than ever. I've acquired a lock that he can practice the combination on for the summer. It's not THE lock, but he'll get the gist of how to use one. I've set up an organizational system for his classes so that he has everything he needs without having to grab for things in a messy locker.

I am on this.

Jared's transition meeting is next week. I am looking forward to this. I actually feel really hopeful, because everyone, whether they know me or have recently met me, know that this little kid has parents who are totally on board his ship. He has advocates all around him and it will be hard for him to slip through the cracks because his mom and dad are on top of things. On top!!

I am proactive. I am a communicator. I am a resource. I am a sounding board. I have thick skin. I am Jared's mom. I want the best for him.

I'm also learning as I go. I still worry no matter how hopeful I am. I may have forgotten some things we need to do to get him ready. I am Jared's mom. I want the best for him.

Presentation Update

2010-05-03T10:44:00.001-06:00

He did great!! So proud of him.

Later in April, Jared did the same presentation to his Cub group and he will present again to a grade 4 class next week.

Learn About Yourself

2010-03-29T10:31:00.000-06:00

Jared is preparing a presentation on Autism - his Autism. He's going to present it to his class this Thursday. World Autism Awareness Day is the following day.

We have been looking up information about Autism on the good ole Internet. We've been reading about symptoms and characteristics that kids on the spectrum may have. He's been amazed. He won't retain it all right now, but he gets what he does retain. He recognizes himself in some of the descriptions and feels fortunate not to see himself in others.

I've seen a sense of empowerment welling in him as we talk. I see confidence to share his struggles. I see understanding. I see a sense of hope.

My hope is that the classmates who know his struggles and support him feel a renewed desire to stay the course. I hope the fence sitters have a better understanding and perhaps one or two of them will want to become supporters. I hope the ones who don't care and will continue to be mean will be held to a higher level of accountability.

My biggest hope is that Jared will find pride in who he is and not be ashamed of his challenges.

As we talked last night we talked about how some kids have to live with their parents forever because they are unable to take care of themselves. He said, "Well I can't live at home forever. How can I go to school and find a girlfriend and get married if I stay with you?"

Jared, honey, I want that for you so much.

Awareness

2010-03-02T11:04:00.002-07:00

"Mom, are some of my challenges because of that Autism thing that I have?"

This is a question I have been getting from him on a regular basis lately.

While I knew that I would be dealing with these things at some point, I am surprised that it started already. Just a few months ago he seemed not too concerned if not almost oblivious to the whole thing unless things were not going well.

I took advantage of the moment and sent Jared off to talk with our therapist at mental health. We really didn't think that Jared would be asking so soon and thought we would have a few more years. The reason behind that thought was Jared's tendency to let things go and not always pay attention. But one thing about Jared - he never ceases to amaze us.

Jared's therapist and I didn't know how much he gleaned from their session together. With his ASD and ADHD combined it's hard to tell what he absorbs. He did get something though.

In church on Sunday, his teachers were talking about our bodies and how they are not perfect. Some are born with limbs that don't work right, or brains that don't work the same as others. At that point Jared piped up and said like my brain and my Autism.

Well, there you go, folks.

On a side note, I weighed Jared the other day and was amazed and delighted to see that he gained about 20 lbs over his 5th grade year so far. He's been chubbing out, which is a sign with our boys that a growth spurt is not far off. With the ADHD meds he takes I worry about his weight and growth pace and puberty timeline. At the moment it's looking pretty on schedule. I hope I am right and the signs indicate I am.

And with those advances comes the hormones and I think I need to find a good book and/or seminar to help me learn about ASD and the adolescent.

I can also comfortably answer Jared when he asks if his challenges are due to Autsim, "Some of it. A lot of it is just because you are a regular growing boy."

Feelings of a Mom

2010-02-17T12:01:00.003-07:00

I've meant to blog recently, but I've been preoccupied. I fractured my wrist. It tends to throw life off a bit.

I've spent time hovering between feeling so great for Jared and how far he has come and how difficult and frustrating his life can still be. I see how he is handling himself in certain situations so well. I see how hard life gets when the people you want to be friends with do not want to be friends with you and are not always nice about it and how the middle school years will not always be kind.

I don't know how to balance my desires to protect him and his need to learn from experiences like his brothers. I don't want him to lose the resiliency that has gotten him this far.

It's a struggle not to dislike kids who make Jared's life harder and to understand that most of them don't know better or know how to handle interactions with him. As a mom you want the whole world to love your babies as much as you do. That doesn't happen.

So for every victory I celebrate, knowing that achievement was hard earned. Then I go back to worry. Worry that I can't save him all the time. Worry that he'll get angry about his lot in life. Worry that some one will hurt him. Then with that worry I get up and fight for him so that maybe one day I won't have to worry so much.

The Rally

2010-02-03T09:02:00.003-07:00

Cub Car Rally night. It's a big night for them Cubs. It's the showcasing of all the work the boys and probably mostly their dads have done to prepare for this big event. Jared's no different. This is his last rally and he was EX-cited!!!!
Many kids who are totally in it for the win factor would probably get dear old dad to help them create something with some aerodynamics involved. Jared was TOTALLY in it for the win factor (though I did have a serious talk about sportsmanship and how that works, which led to the "I know, I know, like last year," response, which led to my crossing my fingers that he wouldn't be kicking and screaming by the middle of the rally). The secret to his success????? A warthog vehicle from Halo (the video game, for those scratching their heads).

Sean spent a good while getting this ready for the paint shop. I think Jared did a great job on the camouflage paint job. Just to get into the mood of things, I crocheted a camo hat for myself.
Jared came in 2nd place for the evening. He did great. He stressed a couple of times, but was easily redirected. He was leaping everywhere, but didn't knock anyone out. He was the loudest, but we let him. All the boys were a little crazy; Jared just takes his to a higher level.

His Cub Car career is now behind him. The Warthog can be retired (unless we participate in the city-wide rally) and a gun glued to the top of it. One more thing to remind me he is growing up.

It's Private

2010-01-30T14:24:00.002-07:00

I came home from work yesterday and gave someone who will remain nameless a big hug hello. That nameless person was smelling a little off.

"Hey, your pits smell," I said.

Nameless: "Really?"

Me: "Yeah. You stink. I think you need deodorant."

Nameless: "That's awesome!!!!"

Me: "It means you are growing up and your body is starting to change."

Nameless: "You mean my sweat glands are starting to work?"

Me: "Umm....okay. You better go take a shower and I'll give you some deodorant that you can keep."

Nameless: "That's cool. Can I tell everyone at school I use deodorant?"

Me: "Well, no. that's not a good idea. It's kind of private. We don't usually announce that sort of thing to the public."

Nameless: "Oh. Okay. What about my brothers?"

Me: "Sure. They're okay."

Nameless was excited. In a way I am relieved. With medications you accept certain possible side effects. Nameless seems to be on schedule in this part of the growth cycle.

We are not posting any names. This is private stuff.

Old Blog Entries

2010-01-29T22:58:00.003-07:00

Just thought I would add a couple of links to old blog entries I've written.

http://deborahz.blogspot.com/2009/10/do-we-need-crash-course-in-all-that-is.html

http://deborahz.blogspot.com/2009/05/end-of-times-and-transition.html

Better Day

2010-01-28T17:57:00.001-07:00

You have a bad day. You dread the next one. It works out alright. You breath a huge sigh of relief.

Straight Talk is Not Always Easy

2010-01-27T21:07:00.002-07:00

Jared's day did not end well at school.

One of his classmates decided it would be fun to tease Jared. I don't know all the details and I don't know how many other boys, if any, were involved. The result was that Jared got very upset and overwhelmed and yelled at this boy.

He was supposed to do his timekeeper job today after school for a basketball game, but the school called to say that he didn't want to do that anymore because of this incident and I went to pick him up early.

I found him in the office with one of the teachers. He started to tell me what happened with tears welling in his eyes.

On the drive home Jared asked me what it was that his "challenge" was called again. He can't remember names like autism or PDD-NOS. Then he asked, "Mom, did you know when I was a baby that I was special and great?" I couldn't even speak. I was so choked up. I was driving a minivan, my son had just asked me one of those questions that almost kill you, and I was trying not to cause a traffic accident through my tears. I asked him to clarify "special" and he defined it as his unique challenges. I told him I did not know how special he was as a baby but I aways knew he was great.

He recovered once he got home. I think he just really needed a change of environment. It was one of those days when I wished I could just take all this away from him. I worry that when these things happen, though he talks about it, there are still parts of it that he internalizes or can't verbalize.

Sometimes I really want to hide him and keep him safe. We don't want to see our kids get hurt. But it's not realistic or right or fair. Still..........

Cubs and Singing

2010-01-24T20:11:00.003-07:00

Jared and the Cubs Program do not always get along. Sure, Cubs is great. Cubs is welcoming. Cubs is a fun time. Cubs can be overload sometimes.

Lots of little rambunctious boys plus no one to keep both eyes on Jared makes some Cubs evenings an exercise in futility.

I don't blame anyone for that. Jared needs special attention and he can go stretches where he does great. Then they play a game and Jared gets frustrated and he freaks out and if someone is in the wrong place at the wrong moment they might get hurt.

This happens rarely, but it has a couple of times. So I asked and begged for an assistant just for him. On Tuesday Jared will meet him. I've talked to him about what to expect. I've talked to the assistant about what to expect. I've prepared a bio of Jared filled with all sorts of interesting tidbits and deep dark secrets (well not really on that last part) to thoroughly scare this guy to death. I added triggers to look for and strategies to help and now I am going to pray this all works so I don't have to "ban" Jared for a few weeks from Cubs and he can have a smooth remainder of the year.

Jared decided that it was too embarrassing for his mommy to be there with him. I can respect that. He's also the oldest cub and with his tendency to act as mature as the least mature child present tends to make him look a tad awkward to everyone else. He does the best he can, but hey, don't they all.

Jared has also started singing in our church choir. Since I am the director, I decided to drag him along. He's doing well now that we've eliminated the Jonas Brothers singing style and full blast singing voice. He's got a beautiful voice and over the last couple of weeks people have approached me to tell me so. He seems to really enjoy it so I'm determined to take full advantage while I can. A bass playing singer. Sounds good to me.

Friendships

2010-01-13T08:59:00.002-07:00

Jared is like many (perhaps most) folks with an ASD when it comes to creating and maintaining friendships. Very often there is a crash and burn component to the formula and it is always a work in progress.

One way Jared is slightly off the ASD norm is that he is extremely social. He wants friends. He really cares that he does not have many or any at all. He often feels isolated, but he goes out there and keeps trying. He doesn't close himself off and spend time on his own. He's out there. He's working the formula and he crashes and burns a lot.

When Jared chooses friends, those "choices" don't always realize they have been picked and of course don't always want to be the chosen ones. As Jared and these chosen ones get older, the more hurtful it is becoming. Jared picks boys who seem very strong and confident. I get concerned because they also seem to be the ones who treat him the worst.

A few months back, Jared was having issues with a boy who was in general terms a bully. He was not nice to Jared and indeed I was having concerns for his personal safety. Interestingly, Jared still called this boy his friend. I finally told him that friends don't say bad things, take things away, threaten others, and be disrespectful. That had never occurred to him.

On the flip side, the other day Jared was having problems and getting rather upset. Some girls came over and helped him settle and calm down. He complained to his teacher that he had no friends. His teacher pointed out these girls who had helped him and that they were friends. Jared's reply to that was, "But they are girls."

One of the things we as a family are learning, is that some people for Jared are a means to an end. What I mean by that is he knows he needs and wants friendships, but instead of cultivating those relationships and seeing if they lead to friendship he picks people to fill the slots. They are in essence objects that serve the purpose of filling the friendship pool.

He does have connected relationships with some people - his family, his teachers at school from this year and last. Friendship is still a bit of undiscovered territory. He's still filling the slots.

Learning to Dance

2010-01-01T09:41:00.004-07:00

It's been a long time since I danced. Before marriage I danced a fair bit. So did my husband. After we married....not so much. I guess we didn't have as much opportunity and we got our guy/gal.

Now fast forward almost 15 years. James is now going to church youth dances and this has set off a new dynamic in the household.

Last night while he was partying it up at a New Years dance, Jared spent a portion of the night talking about when he will be old enough to go to the dances and dance with girls. In my head I was thinking thank goodness we have 3 1/2 years to work on this.

Our elementary school held a family dance last year. Jared and Jackson took a stab at dancing. Jordan was too cool to dance. Jackson finally chickened out. But Jared......wow.......he was a spectacle. He took his dancing seriously. In a gym filled with over 300 people, he created a perimeter and danced like one of those kids off "So You Think You Can Dance" meeting Napoleon Dynamite. People were watching. He loved that. People kept their distance. He didn't notice that. He needed the room. There was a lot going on.

So last night we started talking about these future dances and dancing with girls. He showed me how he would dance with them.

Him: "How was that?"

Me: "Energetic."

Him: "Did you think that was awesome?"

Me: "Yes, and I think we will have to practice dancing before you start dancing with some girl."

Him: "Why?"

Me: "Well, dancing like that........you may knock her head off."

Him: "Oh. Can you teach me some moves?"

Sean found us some music to dance to and dance we did. Jackson showed us the fundamentals of the "robot" which I never knew he could do. Jordan looked at us like we were crazy. Sean just sat there in his chair, because. Jared and I started. I think I want to show him the scene in the movie Hitch where Will Smith is teaching Kevin James how to dance. Anyway, he was a model student and when he would suggest a move a girl would be more impressed with - his arms and legs swinging around "like this" - I would gently imply that she would need a helmet and body armor to survive - though not in those exact words.

Jared is such a social little boy. It serves him well and it bites him in the butt. It bites him mostly because he gets into situations that he has not been coached on and then things don't end well. I am actually really happy that he is already looking ahead with anticipation to a time when he will be socializing in a whole new way and that he is willing to prepare for it now.

It seems so often we are training and learning reactively. I like to be more proactive and so this was a lot of fun last night. We were doing important work and it was enjoyable at the same time.

He can dance in the privacy of his own home like a man with eight limbs. We all can.....and some of us do, not just Jared. But in 3 1/2 years I think we will have him ready so that safety gear will not be needed.

2009 Wrap Up.......A Mom's Perspective

2009-12-31T22:20:00.005-07:00

This has been a big year for us on the Jared front.

Jared got his PDD-NOS diagnosis. He was also diagnosed with an anxiety disorder and the ADHD diagnosis we already had was upgraded. Diagnosis gave us a name to put behind the challenges we had faced for Jared's whole existence.

Jared began to cope much better with his surroundings. When he started at his new school last fall it was like he fell off a cliff. He became some one I didn't know. It was frightening. I am glad it all happened the way it did though. If he had not completely lost it, we may not be where we are now.

With proper medication and behavior modification in place, Jared (the one I knew) came back to us. He has done remarkably well. His resilience amazes me. I see him trying. It's not always easy, but he tries.

I see him trying to stay calm and when he does start getting stressed he is able to calm himself with coaching from his teacher or his parents. He is trying not to talk so much out of turn. His melt downs have decreased dramatically. They still happen, but we can usually stop them before we reach the point of no return.

He still gets obsessed about things, but it's not as severe as it was a year ago. His imaginary friends are gone. He's less frustrated.

This is a link to a post I wrote this fall. It reflects the progress Jared has made this past year.

http://deborahz.blogspot.com/2009/09/progress.html

To look back and see where we have come from fills me with joy. Life is not perfect. Stuff still happens and some days downright stink. I try to take those days for what they are.....bad days. The fact of the matter is that Jared had ASD. He had it yesterday. He has it today. He will have it tomorrow. He is not going to wake up one day and it be gone. We are just going day by day and hopefully learning something new and working on them.

2010 will bring new challenges. Jared will turn eleven. He will start middle school. He is inching ever so close to teenagedom. As he masters some skills, he is facing new challenges to overcome.

And we soldier on.

Christmas

2009-12-27T19:15:00.004-07:00

Christmas is just one of those days that brings the best or the worst out of people. Sometimes both....and that is usually the case..... depending on the time of day.

Jared did great. Christmas is so overwhelming with all that is Santa and extended family members. There are new things everywhere and everything has to be explored and played with immediately.

One of Jared's best presents this year was a left handed bass guitar from his Aunt Diane. He's been wanting one for a while and I was really hoping he would get one. He has a talent for the musical and with his other challenges in life we really want to guide him into activities and skills that others will find more interesting and distinguish him from the pack for reasons other than the ASD. He's a fast study. James, our oldest, is teaching him and it is going well so far....two days. James is amazed at what Jared has accomplished already and Jared thinks James is a cool teacher. Win. Win.

We lasted until the late afternoon and life started to unravel a bit. Jackson was done by that time too. We enjoyed Christmas dinner at my parent's house and when we were done with dessert, it was time to get back to our own home. Things were slowly falling apart. It was okay though. It was a day of mostly sharing and playing and that is always a good thing.

Jared often likes to play alone in his room. It bothers me at times, especially when the rest of the family is doing something together and he chooses not to participate. But I found him that night sleeping with a bag of candy.

Seems like a classic end of Christmas day shot.

The Wink

2009-12-20T07:48:00.003-07:00

Last year Jared learned the truth about Santa Clause. He's very real. He is in each one of us. But Santa is a happy secret because the spirit of Santa is so much fun and we don't want to spoil it for those waiting for the cookies to be eaten and the milk to be consumed.

This year Jared is flip flopping from his need to educate his little brother Jackson that Santa is not real to the preceding paragraph in this blog. It's been challenging to keep him quiet and let Jackson's whole Santa world stay in tact.

On Friday, Jared couldn't stop saying enough about the fraud Santa is. He saw my look. He knows that look. I can part the waters with my look. He stopped.

On Saturday, I walked into a discussion Jared was having with Jackson about what Santa would leave for each of them on Christmas Eve. Upon seeing me enter the room, Jared looked at me and gave me a huge, "discreet", wink.

Yeah, Jackson may not be a believer much longer.

Trying to Get Started

2009-12-16T06:32:00.003-07:00

My laptop died a few weeks back. That was my blogging tool and I have not been doing the work I set out to do.

I thought I would post something I wrote last year at this time about our journey with Jared. It certainly was not the beginning, but a significant turning point in our lives.

I've been away from the blog lately. Life has been full of stress to the point where I wasn't sure I could get out of bed to face the world. But I am up and clothed and though I am still not completely standing on solid ground, I am moving in a forward direction.

I have a wonderful little boy. His name is Jared. What sets him apart from his brothers? Well for one, he is the epitome of the "bouncing baby boy". He is still bouncing at nine years of age. When I would describe mothering him as a small child I would say it was like having a first child all over again. He is my third. All the skills I had learned up to that point seemed to fly out the window. Positive reinforcement had spotty effects. Time outs didn't work. Taking away toys didn't work. A stern warning was quickly forgotten if it even registered at all. He's not afraid to call someone twice his size a bully, but he has a great fear of elevators. He can't sit long enough to eat a meal, but he can take his time and try to teach a two year old how to dribble a basketball. When he was young I would ask him a question and his reply would be an answer to a question I asked two weeks earlier.

Jared is creative. He loves an audience. He loves video games and computers. He loves to sing, but not in front of anyone. He loves Lego and when he is in his creating zone he will disappear for 5 hours with no breaks or meals (and don't dare come into his room and bother him) until his masterpiece is complete.

Socially he is awkward. He has little concept of personal space and in kindergarten he would unnerve his classmates when he came too close to them to talk, which was all the time. And he talks and talks and talks. Children don't know how to relate to him and so when he is invited to a birthday party it is a major deal.

Jared only focuses of things of interest to him at any particular time. His ability to focus on other things is sketchy. Getting the "must jobs" of life done are a huge struggle.

He is easily confused. Life must be laid out very clearly for him. Rules, instructions, must be repeated numerous times. There always needs to be a designated person in charge. If these things are not happening, anxiety kicks in.

Things are much more difficult for Jared to accomplish than it is for any of his brothers. He is an intelligent, bright, thinking being. It's hard to expose that to the world. It's trapped inside his body continually trying to escape to the light.

Jared has ADHD and anxiety. The lucky lad seemed to get the right mix of genetics and won the lottery. Life for him is like watching 5 different TV shows on 5 different TVs at the same time and then being expected to write an exam answering questions about all 5 shows he watched simultaneously.

A large part of our move to Alberta was for him. We had heard that education funding in this province allowed for more intervention for kids with challenges. We had great teachers in BC, but education funding did not provide support for kids like Jared. He, his parents, and his educators were left to their own devices. Any help we did seek was out of pocket and expensive. Indeed a psychological assessment that was requested 2 years ago in BC was given to Jared within 3 weeks of school starting here. With that assessment he was able to receive the help of an educational assistant.

But something else happened when we moved here and school started. Jared became more anxious. He started withdrawing in many ways. He would no longer play outside at recess with the other children. He didn't like to go out for dinner any more. He wasn't able to be in large groups. He was fighting to sit on the sidelines.

We began to see a psychiatrist early this fall and we talked about the problems Jared was having. We played around with his medications. I had been using reward systems for encouragement. I was in constant communication with his teacher, who by the way, is a total answer to prayer. Nothing was working.

Now he is at a hospital program and he has been there for almost 2 weeks. We were on a waiting list to get in. They called in the afternoon with news that a bed was available. Within 3 hours he was there and Sean and I went home without him. He comes home on the weekends and we visit him every night. The purpose of this program is to observe the children 24 hours a day and diagnose and identify behaviors. They work on behavior modification and when necessary figure out the right medications to use and therapy.

One thing we found was that the ADHD medication Jared has been on for quite some time really wasn't working for him. They found no real difference with him on or off. They are trying something else and so far they seem positive about it. He is also on an anti anxiety medication until he can learn to deal with his responses to those things that cause him stress.

We miss him around here. Our house is empty without him. It is hard to let go of your child and put him into a less than homey environment in the care of strangers. It's hard to not feel guilt and a sense of failure that as a mother you could not fix this for your child.

This past Friday was when I learned that our doctor wanted to keep him for a month. The reasons at that time were that some of his medications took that long to kick in and that Jared

was a bit of a mystery to them. He showed symptoms of a few different disorders, but could not be firmly diagnosed with anything. They had not seen a boy like Jared in a long time. We were asked for family mental health histories. I was feeling kicked in the stomach. I lost my footing.

Needless to say, I was a wreck for 4 days. I could hardly function and when I did I was exhausted. It had been a tough week not having Jared around and Jordan rolled and sprained his ankle (we went to the hospital for that too) and was on crutches. I didn't think I was going to be able to move. Everyone in this house has now seen me in tears this past weekend and even the boys have been worried about me. I couldn't hide it. I couldn't trust my own mothering skills. I didn't trust my judgement or my ability to make correct observations. I think I hit that breaking point.

Taking Jared back on Monday was the hardest thing to do. I knew he needed to go, but all I wanted to do was keep him home and hide him and take care of him.

Monday was a difficult day for him. On Tuesday they increased his meds and started a behavior modification plan that was an instant success. I sneaked in this morning to say hello and the nurse was just excited to tell me that the morning went so well. Jared got ready all on his own and happily without constant reminding and was ready for school 2o minutes early. He is going to hospital school.

So I am feeling better today. Our evening visits have been positive. The hospital feedback has been positive. I am hoping I don't get kicked in the stomach again on Friday. But it doesn't matter. It's not about me. It's about Jared.

Once upon a time I was one of those anti ADHD diagnosis people. I believed that we were diagnosing too many and unnecessarily over medicating our youth. Then God gave me Jared and my world changed. I judge less. He is a gift to me and to anyone who comes in contact with him. He is here to teach us a lesson or two about life. He has taught me that resilience can come from any hardship this life offers. He has taught me that even though life can be a challenge you can still be cheerful. He has taught me that every individual has the strength to overcome.

He is my hero

The Start

2009-11-15T21:01:00.001-07:00

I started blogging about a year and a half ago. I found it was a way to journal the life of our family. We were making a big move and leaving wonderful friends and family. It was a great way to keep them connected to our lives from so far away and for me to document the adventures we were having as we started anew in a different city.

In February of this year our third son Jared was officially diagnosed with an Autism Spectrum Disorder. Our experiences leading up to that diagnosis and following began to make up most of the activity on our family blog. I decided to start this blog as a way to still journal about Jared and maintain balance on the family blog.

My aim with this blog is to journal our experiences as a family, Jared's personal successes and challenges, and my own experiences and feelings as his mom. I write this all mostly for myself, but if others can find something beneficial along the way then I find value in this experience.