Misc. Bits and Pieces

Going to throw out some bits and pieces of stuff that has come to mind lately

Sleplessness and Insomina

Sleplessness is something that Aspies and ASD kids in general have as a general rule.  Bailey was a night owl from the time he was born.  I laughed at parents who were telling me that they could put their infants down to sleep at 7pm at night and have them sleep until 7pm the next morning.  Bailey was never that way.  Still isn't today.  Bailey has never been able to go to sleep before 10pm in all his 12 years.  Dont tell me about "Feberizing" - we tried all the tips, tricks, deprivation, pretty much anything you can name, we tried.  I've found that Bailey's body takes time to wind down from the stress and activity of the day.  I have found that soft music and movies or shows with soothing sounds seem to help with this.  I know that "experts" say no TV after a certain time of night - but when it comes down to the parent getting sleep or dealing with a child who is going until 1 or 2am in the morning, a little TV never hurt anyone.  I believe that there is some truth to the fact that diet can help/hurt with insomina.  Obviously loading a kid up with sugar isn't useful when trying to get them to sleep.  I've found that allowing Bailey to snack lightly (again, as non-sugary of a treat as possible) before bed seems to assist with the winding down process and helps him to get to sleep and stay asleep longer.

Focus and Change of direction

It's interesting how it seems that Aspies and ASD kids seem to get misdiagnosed with ADHD so easily.  I believe that the symptoms that the doctors see are misleading.  Aspies in particular are EXTREMELY focused on whatever the current task is at hand.  One issue that Bailey's teachers have struggled with over the years is getting Bailey to change from one task to another.  Even at home, there are times when I have to call his name and get him to focus entirely on me before I can give him new instructions for a new task.  This is important for Aspies.  Sometimes you need to give them this "cushion" to shift gears between one task or another.  They can't just pick up and go as other kids do.  Their brain needs time to refocus on the new task to work out what steps need to be taken next.

Which brings me to my next point - Change of direction.  Aspies hate change.  Tradition and familiarity are safe for them.  Any time you introduce change to the Aspie's environment it is key to do this as slowly and carefully as the situation allows.  Sometimes the situation doesn't allow and you have to change on the go and take the Aspie along for the ride.  Be prepared during these times for the inevitable "moment" as the Aspie will struggle with organizing thoughts and actions to incorporate the change.  For the parent of an Aspie it is key to try and map out the new task as clearly as possible and to give expectations of what the end game is for the Aspie.  Sometimes this means outlining something as simple as picking up toys or putting away books.  Tasks like that may seem simple for other children but for the Aspie, these tasks can often require additional direction be given to allow their brain organize and act on the new task at hand.

Inspiring Autism Story

Here's an inspiring story of a young man with Autism.  I give credit to his family for the support he's received.  He is more on the non-functional side, but completely able to do far more than what doctors said he would be able to do.

Inspirational story of young man with Autism

From the story:

Billy Pagoni is refusing to give up on his hopes for a higher education.
Diagnosed with severe autism at 18 months old, 21-year-old Billy has trouble speaking and communicating with others, making it difficult for him to integrate into a typical college environment.
Nevertheless, Billy had always dreamed of attending college, with hopes of one day becoming a professional chef.  However, according to his mother, Edith, there are currently no university programs suited to meet his special needs.

Autism Speaks has some issues

I'm not a huge follower of "causes".  In fact, I'm a little down on supporting large "organizations" for the purposes of some charitable effort.  My charity usually involves giving directly of my time, efforts, or money to someone in need.  There is a lot of corruption that goes on in charities in the current day.  Beyond corruption, a lot of the larger organizations are very top heavy.  When you see leaders making  tens of thousands, and sometimes hundreds of thousands, of dollars to run a charity - you've ceased to be defined as a charity in my opinion. 

That being said, I do see the need for some larger organizations that can be used for large disaster events or recovery efforts, etc.  The Red Cross comes to mind.  Although, they too have become a shell of their former selves/goals.  The Red Cross is entirely too political lately. 

I was recently made aware of some issues with Autism Speaks.  They are one of the larger autism specific charities around.

Moms organization chastises Autism Speaks

Some of the dispute revolves around the fact that Autism Speaks has no one on the autism spectrum in their leadership counsel.  They also seem to lack a balanced view of autism and its causes, treatments, etc.

I don't have a lot of commentary on the linked article.  Just offer for your reading pleasure.

Dr Manny responds to article from earlier today

Dr. Manny Alvarez, a contributor for Fox News, read the article I posted earlier today about the store Cashier who had Aspergers getting berated by a customer who thought he was moving too slow.

I don't agree with Alvarez on everything, but he does have a good quote in the story

Dr. Manny responds to bullying of Aspie Cashier

People need to understand that individuals on the autism spectrum are going to face challenges as they try to incorporate themselves into the fabric of a working environment. Every time I write a story about autism, in which I relate personal anecdotes about my son, many people thank me for sharing the struggles that our family faces on a day-to-day basis. But consequently, I also receive hateful comments from people expressing very insulting thoughts they may have about both my son and myself.  As a father, these comments hurt, but I don’t take them to heart, because I know that these people are misinformed.  And ignorance can sometimes be the driving force for animosity.
No matter what, I will always stand up for the rights of people on the autism spectrum and try to spread awareness about this disorder.

I was unaware that Dr. Alvarez had a son with autism.  He is right that there are a lot of ignorant people that just don't understand autism and what the limitations are of those who have it.

Maybe my small blog will help some people to understand and help support the millions of children and adults who are Aspies trying to make it in this crazy, mixed up world.

Deliberate Aspergers employee gets yelled at

This story kind of dovetails off to something that I was wanting to cover this week anyway.

Story of man with Aspergers getting yelled at

From the Story:

A SUPERMARKET employee with Asperger's syndrome was berated by a customer for checking out her groceries too slowly. Chris Tuttle was left stressed and upset by the altercation… until his sister stepped in.
Jamie Tuttle-Virkler posted the story of what happened to her brother on Facebook and asked people who know him to leave a comment if he's ever made them smile.
"Yesterday at Wegmans, a customer yelled at him and then in the middle of her transaction, left to complain loudly to a manager, came back to his line and he was so shaken, dropped a candle she bought on the ground and it shattered," she posted.
"The customer's problem? Chris was checking her out...TOO SLOW and she was furious. She yelled at him, the manager and anyone else who would listen."

One thing that is common for those with Aspergers (Aspie) is to be very deliberate with whatever it is they are working on.  This would only apply to something that has there interest or something that is very important.  Telling this man in the story to "hurry up" would not work.  In order to change the current mindset of an Aspie you must first get their attention, and then explain why the direction change you are about to introduce is important.  Then, make sure that the change of direction is understood and followed.

With Bailey, prior to his diagnosis, this was one of the harder aspects of Aspergers for me to understand.  Getting him to change tasks or to change how he was approaching tasks was nigh on impossible.  I thought it was Bailey being beligerent or disobedient to me as a parent.  Since his diagnosis I am very aware to try and inform Bailey whenever he will need to change tasks or to change environments (if we are getting ready to go somewhere).  This seems to brunt the frustration some and helps him to change gears towards the new direction.

Interesting article on ASD infants and eye contact

It's been known for some time that ASD children have an issue with holding eye contact.  There are many studies and books on this issue. 

Now, they are finding out that an ASD diagnosis could be made in infants as young as 2 months old by using an eye contact test.

Fox news Story on Autism and Eye contact in Infants

From the story:

Infants that later developed autism were found to show declines in how long they looked at the caregiver's eyes, starting around ages 2 months to 6 months.

Interesting.

I am the real Day 6

No, I am the real Day 6

Going to give you a peek into a day in my life with Bailey

I know that teachers have a hard job......but

Don't we all?  A job is a job.

You have to deal with snot nosed kids that are yelling and I have to deal with a rich egotistical jackanape of a CEO that curses me out before he knows anything about me.

I know, I'm whipping the sacred cow.  I'm sorry about that.

So.....Bailey got a detention today.  The circumstances of the situation dictated that the teacher dealing with Bailey at the time do something.  I have no issue with Bailey getting punishment, but there are times that I wish a true adult was present to diffuse these situations with Bailey before it escalated to a negative situation.

Here's the background that I know at this point.

Apparently Bailey was recently placed in some sort of advanced placement portion of a literature class. The assignments that they're working on right now involve reading these stories and mapping out the plot lines of the story.

This type of assignment deals with the Abstract.  Taking abstract ideas about a story and putting them into some kind of order.

Can anyone that knows anything about ASD or has been following this blog tell me what is wrong with this picture?

Also, his mother and I were not notified of this change in assignment for Bailey.  Another big red flag.  Bailey does not deal well with change.

I'm not asking for the world, but a simple email or phone call would have been nice.  If they would have given me anything close to what they were intending I could have told them that without additional support that they were setting Bailey up for failure.

So now we have to deal with the fact that Bailey got a detention and also try and work something out with the school to get Bailey extra support so that he can try to stay in this advanced placement class.

The school administration poo-poohed when I requested that they maybe read up a little bit about Autism and Aspergers.  When they do something like this its almost like they know absolutely nothing.

I hear all the time that teachers want parents involved - but it doesn't seem like it based on my personal experience.  It gets really discouraging at times.

Sorry to be a Debbie Downer tonight.  Just venting out some frustrations.

Beam me up Scotty!

Day 5 on Day 6, I’m Popeye the Sailor man, toot toot, I’m Popeye the Sailor man

"I'll gladly pay you Tuesday for a hamburger today"

I was out to lunch yesterday.

 

So maybe I’ll try two blogs today. 

 

Have you ever got “that” look? 

Parents of special needs children are used to getting “that” look when they go out in public.  “That” look is the look that a parent will get when their special needs child decides at the most inopportune time to have a “moment”.  As Bailey grew up it became more and more apparent that there was seldom a reason for the “moment”.  For the most part, as is common with ASD children, the environment became overwhelming to him for one reason or another.  His moment was his way of trying to tell us that.  Because we didn’t have Bailey’s diagnosis until years later, these early years were filled with frustration as we (his mother and I) were unable to connect with Bailey or figure out for ourselves what was going on with our son. The “not knowing” was the hardest part of all. 

 

Based on my experiences with Bailey, I am a much more tolerant person when it comes to dealing with parents who have unruly kids. It’s not true that these moments are always due to bad parenting.  Sometimes these issues are unavoidable and the parent you are getting ready to direct a dirty look or rude comment to are doing the best that they can with the resources that they have available.

Day Four, Rainy Days and Mondays always get me down

That, and watching the Steelers play football. :)

Tonight I'm watching a slightly better football team.  Having been raised in Illinois for most of my life, my hometown team allegiance sways towards the Bears.  I grew up mostly in the Ditka era with the Bears of 1985 being one of the best football teams I've ever seen.

My brothers and cousins and I once did a VHS video where we lip synched and acted out the Super Bowl Shuffle.  That was 5 minutes of awesomeness

Can anyone tell me what an Athalete is?  Someone needs to ask my wife Reba.  Funny Homework story in there somewhere.


Tonight I thought I would change course a little.  I promise to finish the ideas that I proposed yesterday.    But I want to develop those ideas a little more before I put them out here.

Tonight I wanted to talk a little bit about support.

"If you can't be an athlete (hint hint Reba) be an Athletic Supporter"

Favorite movie line evah

If I could translate the movie line above to fit the theme of this blog post today, it would be "if you don't have a child with special needs - Support those that do"

Having a child with special needs makes every day a Monday.  Really, it does.  There are no breaks.  There are no moments of down time.  Every minute of every day is a day where your every sense is on high alert waiting for that "moment" to happen.  There are times when the moment can be diffused, but never eliminated.  Even the most organized and prepared parent (of which I am not) will get caught by the moment.  Now take that moment times 365 days a year.  That'll give you a glimpse into the lives of parents with special needs children.

I have to tell you though - I wouldn't trade it for anything.  Bailey has taught me more about myself and life then I could ever have learned by myself.  Seeing life through Bailey's eyes makes me a better person.  It makes me a better dad.

But every person has a limit to the stress and "moments" that they can take...so for those people I wanted to write some suggestions...

1.  Build a support system - and use it!  This can be hard, because if you're like me (stubborn and pigheaded) you don't think you need help and you can figure out everything yourself.  Trust me, no matter how organized and logical you are, no one can handle the burden of a special needs child all by themselves.  Don't feel bad to ask friends and family for help.  Make a plan, outline where needs exist, and share those with your support system. 

2.  Make some down time for yourself - don't just take it, make it!  Prepare in advance for a break away from the normal flow of your environment.  Even if you just consult with your spouse for a few minutes to get away and unplug, try and take this down time at least once a day.  

3.  Communicate with your spouse about your child.  About your fears, your thoughts, your ideas.  Having a special needs child requires that both parents are on the same page.  Open lines of communication facilitate this and help keep the family intact.

4.  Try the best you can to "listen" to your child.  By this, I don't mean necessarily the spoken word, but the unspoken.  Sometimes actions do speak louder than words.  It's important to keep track of the non verbal queues to address issues before they arise.  

I'm not a pro at this.  To be honest I'm still learning.  But I have found that the steps above can help you survive the craziness.  

Take care my friends.

Day Three, Easy Like Sunday Morning

Sing it with me now

C'mon you know it...

Love that song

Now that we got the blog post started right with some Lionel, how has your weekend gone?  I hope well.

Right now I'm watching this travesty of a football team called the Steelers.  They remind me of the Bad News Bears this year.  They are atrocious.  But I still love the Black and Gold.  Always have and always will.

Early Years

I told you that today we'd talk some about Bailey and how we found out that he was autistic.

Bailey's first three years were relatively normal for an infant/toddler.  He exhibited early development for certain skills like speech and problem solving.  He was talking rather clearly by 6 months of age.  Single words, but talking nonetheless.  He had a normal timeframe for walking.

It wasn't until Bailey turned three and we were preparing Bailey for pre-school that we noticed some issues as it related to social interaction and group settings.  The first incidents exhibited themselves at Sunday School.  Nothing huge, but we saw the first signs that Bailey was going to have trouble in a group setting and fitting in with other children.

I'm going to pause here and kind of throw something out there that will cause passions to fly and tempers to flare.  I don't have any anecdotal evidence either way and I'm not especially passionate about it.  I believe that Bailey started to show symptoms of his autism after his 2 year booster vaccines.

Yeah, I know, I went there.

I think that the vaccine argument has some really dumb arguments on both sides.  First, I wish the pharmaceutical companies that put out the vaccines would be honest with people about what they know and what they don't know.  Because of the difficult nature of diagnosing autism, I think that companies have got off too easy in poo-pooing the obvious increase in the number of kids that are being diagnosed as being on the Autism spectrum.  Second, I wish parents would at least acknowledge that companies have no vested interest in damaging those who they make their money off of...

It's like all the people that think companies have been poisoning us with our foods all these years.  I have some people who I was really good friends with growing up that flood Facebook every now and then with posts about how much poison is in our food.  Really?  If processed food was as bad as you think it is why are people living longer and more productive lives?  Don't you think that there are evil capitalists on the health food side of the spectrum that are making tons of money by you hawking all their "natural" remedies and foods? / end rant

Back to Autism.  I don't know what caused Bailey's autism.  Bailey was born without a heartbeat. He was immediately intubated as an infant and had to be revived after birth.  He had the chord wrapped around his neck during a very difficult delivery.  He was not breathing for about 2 minutes or so after birth.  So there's a possibility that the temporary deprivation of oxygen had some effect on Bailey and the development of his brain.

I just know that after his 2 year boosters and prior to pre-school we noticed and increased "hyper-ness" in Bailey.  In fact, during his first years in pre-school and kindergarden, the initial diagnosis that Bailey had was ADHD.  The symptoms seemed to get progressively worse until the last two years where the progression has slowed.  In conjunction with puberty if I can be honest.

Bailey was diagnosed as ADHD around kindergarten.  I believe that we started some medication for ADHD in or around 2nd grade.

The symptoms Bailey had in the early years were
1.  Lack of attention/inability to concentrate
2.  Social awkwardness
3.  Blurting - Bailey would just blurt out things at inopportune times
4.  Anger - this was more due to the fact that he was not being understood.  When we did not understand what the issue was with Bailey it was very frustrating for him and us (as parents) because no one was on the same page.  It was a constant struggle.

I'm sure there were other things...but those are the ones that come to mind.

One funny story I will relate about pre-school.  For pre-school, the teacher had a reading time and the rug she used was a square and it had the alphabet in big letters around the edge.  The kids would be assigned a different letter every day.  The teacher made the mistake of calling the reading time on the rug "Circle Time".  Bailey raised his hand and told the teacher that it wasn't circle time because the rug was a square.  He was very insistent on this point and argued with the teacher because his mind could not process the fact that "Circle" was not being used in a literal sense.

One thing you will find with autistic children is that they are very literal.  Bailey took the reading time on the square rug as "Square time" - his mind could not process the fact that they were sitting in a circled manner.  Autistic kids are like that.  If you tell them that they are driving you up the wall they will start looking for the car that is being driven.  Autistic children do not deal very well with metaphors or sayings that are not literal.  Even today, I will forget this and blurt out some saying and Bailey will take it literally and I will have to take the time to explain it to him.

That's about all I have for today.  I'll wrap up the early years some more in a future post.

One idea came to me today in Church.  It was how the situation with Bailey shook my faith in God.  Look for some musings on that issue in an upcoming post as well.

Day two was a lazy Saturday

Noshember Day two - What is it?  

Well, today was what we in this house call a lazy Saturday. With the various fall festivals and other activities our family has had over the last few weeks we decided today was going to be a rare lazy Saturday.  And we accomplished that with gusto.

It looks as if the page had quite a few readers on the post from yesterday and for that I am thankful.  I have no idea where we're going on this journey, but I hope that you can at least say you learned something.

Where's the ugly mug?

The day two camera shot won't show much difference from day one.  There's some scruff coming in...nothing too fast..because that's how I roll.

Brief overview of ASD

When you talk to other people that aren't as educated on Autism Spectrum Disorders (ASD), the most common perception that you face is that of what I would call "original" autism.  That view is of a person who is incapacitated mostly and cannot communicate or communicate very little.  Think of Dustin Hoffman's character from the movie "Rain Man".  In truth, this type of autism takes up only a small part of the entire autism spectrum.  Most of the people with diagnosed autism have what you can call "functional" autism.  At first glance these people will appear to be your average Joe or Jill.  It won't be until interacting with these people will you be able to pick up on differences, sometimes subtle, in the way they interact and communicate.

ASD is a wide range of neurological based developmental disabilities.  Each person on the ASD spectrum has their own symptoms.  There is no quick diagnosis list to throw out there that allows medical professionals to look at someone and immediately "peg" an individual as being on the ASD.  This is what makes it so difficult for someone to get diagnosed.

Right now, the most recent statistics state that about 1 in 80 kids have been diagnosed as being on the Autism spectrum.  As you can see, having a child on the Autism spectrum is much more common than most people realize.

The biggest impairment for those with ASD is the inability to interact well in a social setting.  This can manifest itself in a myriad of ways.

Aspergers (what my son Bailey has) is on the functional side of the ASD spectrum.

Here's a quote from the Mayo clinic website talking about Aspergers.

Asperger's syndrome is a developmental disorder that affects a person's ability to socialize and communicate effectively with others. Children with Asperger's syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.

Some resources for you to read up on ASD:

Web MD page on ASD
The Autism Project in Illinois
Mayo Clinic website on Aspergers

I will include more links as I go to provide informational websites that will allow you to read up on ASD.

Tomorrow I will begin a discussion of my family's journey with my son Bailey and the years of frustration leading up to the final diagnosis that changed our lives forever.

Why Noshember?

Hello Family, Friends, and Strangers

This is a blog created to celebrate the month of Noshember.  Noshember is a silly celebration of a man not shaving for the month of November as a way to bring awareness to something, or to just be lazy and enjoy the growth of facial hair for 30 days.

I'm going to be doing a little of both.

This is me.  I'm Loren.  Here's my pic from today, the first day of Noshember.  As you can see, I'm going to have a bit of a head start.  I have a bit of a goatee already.  I hope to put a picture up daily to show my progress.  I don't really grow facial hair as fast as some guys.  But I do grow some.  The last time I grew a fuller beard it was really red and more curly than I imagined it would be.  I've turned grey some over the years since I last attempted.  So we'll see how it turns out this time.

Besides enjoying the growth of a grey and red scraggly beard, I will hope to bring some awareness to the Autism Spectrum Disorders, especially Aspergers. 

You see, Aspergers is very close to my heart. My oldest son Bailey has Aspergers.  He was diagnosed about 3 years ago now.  Maybe a little less.

Bailey is now 12 years old.  He was one of the kids who was diagnosed later in life than most children.  Here is Bailey.  He is a good looking kid. :) This is a picture of Bailey after a band performance last school year.

The key to getting any illness or disability diagnosed is in meeting the right medical professional who is willing to evaluate correctly and has the patience and knowledge to look at the situation and take the time to talk with you about what "symptoms" you have experienced.  It took Bailey's mother and I many years (about 6 actually) to find the right medical professional that was able to properly diagnose Bailey with Aspergers and give us some relief that there were answers to the situations that we were experiencing with him.

I hope that this month is a journey that you can experience with me.  My goals for the month are as follows

1.  Have fun.  I'm a fun loving kind of guy and besides all of the serious stuff I just want to put some things out there that you enjoy.
2.  Raise awareness for Aspergers.  We've talked about that some already. 
3.  Learn with you.  I, by no means, have all of the knowledge or skills necessary to tell you everything there is to know about Aspergers.  I hope to learn some new things this month and share them with you as I learn.  Hopefully this will help me as a father to continue to learn ways to work with my son and help him to grow into the successful adult that I know that he can be....disability or not.

I thank you in advance for any of you who decide to take this journey with me.

So on with the month of Noshember!