Autism Can Be an Advantage Says Researcher

People with autism have advantages, in some ways, over people without the condition, and scientists need to stop viewing the traits of autism as flaws that need to be corrected, one autism researcher argues.

By seeing autism's differences as defects, researchers may fail to fully understand the condition, said Dr. Laurent Mottron, a professor of psychiatry at the University of Montreal.  "Recent data and my own personal experience suggest it's time to start thinking of autism as an advantage in some spheres, not a cross to bear," Mottron wrote in a commentary published today (Nov. 2) in the journal Nature.

 

 

 

For instance, when researchers see activation in regions of autistic people's brains that differ from others' brains, they report these differences as deficits, "rather than evidence simply of their alternative, yet sometimes successful, brain organization," Mottron said.  By emphasizing the strengths of people with autism, deciphering how people with autism learn and avoiding language that frames autism as a defect, researchers can shape the discussion of autism in society, Mottron said.

Autism's advantages

Mottron said he does not want to minimize the challenges of autism. "One out of 10 autistics cannot speak, nine out of 10 have no regular job and four out of five autistic adults are still dependent on their parents," Mottron said.

But people with autism can make significant contributions to society in the right environment, he said.

The research setting is one of those environments. Several people with autism work in Mottron's lab, and one researcher in particular, Michelle Dawson, has made major contributions to the lab's understanding of the condition through her work and insight.

People with autism often have exceptional memories, and can remember information they read weeks ago. They are also less likely to misremember something, which comes in handy in a science lab. Dawson can instantly recall the methods used to study face-perception in autism, Mottron said.

Recent research has shown people with autism often outperform others in auditory and visual tasks, and also do better on non-verbal tests of intelligence. In one study by Mottron, on a test that involved completing a visual pattern, people with autism finished 40 percent faster than those without the condition.

In fact, intellectual disability may be over-estimated among people with autism, because researchers use inappropriate tests, Mottron said. "In measuring the intelligence of a person with a hearing impairment, we wouldn't hesitate to eliminate components of the test that can’t be explained using sign language; why shouldn’t we do the same for autistics?" Mottron said.

"I no longer believe that intellectual disability is intrinsic to autism," Mottron said. "To estimate the true rate, scientists should use only those tests that require no verbal explanation."

Still a disorder

Rajesh Kana, an assistant professor in the department of psychology at the University of Alabama at Birmingham, agreed that researchers shouldn't solely focus on the deficits of autism. However, autism should still be thought of as a disorder, and not merely a difference, Kana said.

People with severe autism have problems functioning in their day-to-day lives, and even people with less severe autism can fall victim to deception, because of their limited abilityto understand when someone is lying. Proper interventions can improve the lives of these people.   "A comprehensive account of autism should take into consideration the strengths and weaknesses" of the condition, Kana said.

While it may have been true in the past that researchers concentrated mainly on deficits in autism, the field is now taking a broader and deeper view of the disorder.  Understanding autism's strengths is important for providing support for those with the condition, Kana said.  For instance, if a child has minimal verbal ability, then you probablywant to find a visual routeto help him.  "Your intervention should target the deficits, but work with the strengths," Kana said.

Pass it on: Autistic traits can allow these individuals to excel in certain areas, and should not always be viewed as problems.

Copyright 2011 MyHealthNewsDaily, a TechMediaNetwork company. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Husker Joe

Sunday night we attended Husker Heroes, an event for special needs children and their families hosted by the Husker athletes.  It was amazing!  Well, I should say it was amazing to all the siblings and dad and myself but Joseph went into shut down mode.  I guess he was overwhelmed and overstimulated by it all.  We did not tell him about it until Saturday evening in order for him to not stress over it for weeks but told him 24 hours ahead of time to prepare him as he does not like surprises.



Getting pointers from a baseball player

Don't they looked thrilled!!!!

Girls volleyball team

Throwing the ball with a player....not sure who it is.

Yep....basketball player.  How did you know??????

We talked to several young men from Louisiana, Alabama, and Texas.  We talked about the "big game" Saturday.  It was a wonderful evening that I truly hope to get to do again!  Next time we will do it differently and take footballs, baseballs, etc. to get signed by the teams.  It was also amazing to walk among the National Championship banners of a legendary team!  Go Big Red!!!!!!

Get In Line

I had to copy and share the article below.  It is how I feel now.  My main complaint, if I have a right to complain, is that I am so tired.  Last week I slept one day until 12:30 in the afternoon.  I caught up and felt great for a day or two and now....we are back to the 2 a.m. sit-athons.  Last night, or this morning depending on how you look at it, he woke me up to tell me that he wants it to be morning.  Sleep....blessed, sweet and glorious sleep.  I never thought I would appreciate it so much!!!!

He has also been back to his aggressive self, full of anxiety and demands.  He is doing great in school so I have to look to these small consolations and thank God for the steps we have made regardless of how small.  Our next big adventure is on the 30th.  We get to go spend the evening with the Husker athletes.  ALL OF THEM!  He does not know yet as he would drive me crazy about it.  I can't wait to see his excitement!  I also can't wait to hear him tell Bo Pellini how much he LOVES the LSU Tigers!!!! 

Now, being that I have no other words tonight I share with you how us autism moms REALLY feel.  I do not know who to credit with this but I did clean it up a little.  If anyone knows who wrote it please let me know so they can give the proper credit! 

Learn to fear us, because autism moms are not to be trifled with.

 Top Five Reasons You Should Never Piss Off an Autism Mom

Five.  We’re Already on the Defensive

What?  You think you’re the first person to think I’m a bad mother? Get in line.  People have been assuming I’m a bad mother for the last five years.  I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid?  No sh**, Sherlock – this panel of physicians and psychologists agrees with you.  Tell us something we don’t know.  Have something new and clever to add?  No?  NO?  I didn’t think so…

In other words, we have experience with people like you.

Four.  We Are Not Socially Well-Adjusted

We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society.  We have cut ties and discarded the family and friends who couldn’t handle our situation.  We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate.  We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words.  We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap?  Yes.  Good choice.

Three. We Know How to Fight

Autism moms know how to fight because we practice. We fight all day long.  We fight with doctors about treatment, and then we fight with insurance companies to get it paid for.  We fight with the state over services and we fight with schools about our IEPs.  We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing.  We fight with our children to make them keep their pants on in public.   Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?

Two.  We’re Already Angry

Autism moms carry huge amounts of unprocessed rage just below the surface.  We’re mad at God or the universe or fate or whatever it is out there that gave our children autism.  We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children.  We are angry about the loss of the child we were supposed to have, and we never truly stop mourning.  We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did.  We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place.  We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?

One. We’re Sleep Deprived

Some of us haven’t had a good night’s sleep in years.  Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted.  We’re muddled and short-tempered and irrational and crazy.  Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you.  Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom.

A Walk For Joseph

Today was one of those days that I will always remember.  One of those days that marks the beginning of something new.  One of those days that defines what life is about and what family and friends truly mean.  First a few thanks.  I want to personally thank each and every person that came out to walk with us today.  Bishop Neumann TORCH group and St. John Bosco Youth Group, you were awesome!  The future of these children will be in your hands.  Your love and support mean more than you can imagine!  Mike, you led the team and held the sign....and I owe you a meal!  Rachel, you are always there.  What a true friend!!!! Thanks!  Eleni, I could not have survived the day without your watching over the kids and entertaining them.  You were GREAT!  And most importantly, my family.  All my children were there to support one of their own.  You kids are the greatest!  I felt the strength in our family and your devotion to your little brother.  I know that one day he will be in good hands.  I love you all so much!!!!!

Jeffrey took the juggling pins from the clown and started his own show. 

And also to our generous family and friends that donated to our team, you give us hope that we will find an answer.  Thank you!  You put our team in the Grand Club earning $1,400.00 by the end of today.  Your generosity has moved me to tears on several occasions during the fundraising.  You have restored in me a belief that there is still kindness in this world.  Please be assured of our prayers.

The Matrix meets Star Wars!  Go St. John Bosco youth group!  We love ya'll!!!

Joseph, the force is with you!

This was one of the biggest mascots.  Everyone wanted their picture with the Stormtroppers. 

Some of us should have just stayed out of the pictures!  Oh, well....I had fun!

The weather held out and it was a very nice day.  I don't know how many turned out but there were many.  One of the most amazing things to witness were the number of young people out there raising money, working stands, serving food, and playing with these kids. 

Playing baseball with the Husker baseball and softball teams.

Getting points from one of the coaches. 

I, along with two other ladies, got recognized for being in the Grand Club.  That was for individually raising over $1,000 in donations!  This is, again, thanks to all of you for answering my constant pleas!   And then Mattie sang her song that she wrote for Joseph.  It was beautiful!  It has been posted on youtube by one of her friends.  It was recorded on a cell phone so it's not the greatest sound, however, she was offered a recording session!  So we will get it recorded and offer it at different autism venues.  Here is the youtube clip:

http://www.youtube.com/watch?v=UZ88a1rRpJY

My awesome, sweet, beautiful and talented daughter!!!

Leading Team Camo Angel is the Camo Angel himself!

No words can say enough about the Bishop Neumann TORCH group!

You are some amazing kids!!!!!!

I feel such a comfort tonight as I watch Joseph in sensory overload.  I am wondering how many parents there today with our special children are going through the same thing.  Just knowing that we are not alone is HUGE!  I feel such a strong friendship with all these parents!  It has been an incredible journey.  I look forward to next year. 

That said, I will end with the words of my daughter's song, "Mommy and daddy could never make you see what you mean to them, what you mean to me."  We love you, Joseph!!!!  And we loved the sign you made...."Autism Rocks!"  You rock, buddy!  You are a great kid with lots and lots of friends who love you so much.  You are a blessing to all of us!  

T.O.R.C.H.

In order to understand what an amazing group of kids we spoke to last night I want to inform you what TORCH stands for.  It is Turning toward Others and Reaching out with Christian Help.  My high school junior has been a member of this group for the past few years.  They are known for their outstanding work with the Pro-Life movement. 

The guest speaker was Jessica, an 18 year old student at Villa Marie, the special education school that the Marian sisters run.  Jessica has autism and gives a power point talk on what it is like to have this disability.  She was amazing! 

Joseph, however, did what I thought he would do but surprised me at the same time.  By the time we got to the school he was very negative, demanding, loud and grumpy.  I knew he was simply overwhelmed with the unknown.  His main mission as soon as we arrived was eating.  He demanded to eat or he was leaving.  Sister hurried things along and Joseph was first in line.  He ate a lot and quickly.  I should have seen this as part of his sensory overload but did not catch it in time as I was working on my speech.  Soon he was sick with a tummy ache and decided he would just go to sleep.  And he did!  Knocked out cold!

Then Sister called his name and asked if he had anything to say.  To my shock and amazement he said yes!  He walked to the front, smiled for what seemed an eternity, waved to everyone and said "hi, my name is Joseph!"  That was it!  That was his big moment!!!!!!

Talking to the group with, of course, no eye contact.

My heart, of course, exploded with pride and joy!  Sister guided him along from that moment on with the help of Joe's big sister, Mattie.  She asked him how old he was on this night and he held up 10 fingers.  She asked him if he liked sports and he nodded his head.  I thought that was it and he would not talk again. But then she asked THE question!  "Joseph, what is your favorite movie?"  And he said, "TRANSFORMERS!" with a huge grin.  And one of the boys hollered "oh yea!"  When Sister asked if there were any questions for Joseph hands went up.  One boy asked what sports he liked he said football.  Another one asked where he went to school. 

A proud and loving sister....

Mattie was beside him the whole time.

And then.....they rolled out a cake and sang "Happy Birthday" to him and presented him with $10 to buy a Transformer toy!

His reaction to singing Happy Birthday to him!

Mattie sang her song "Camouflage Angel" that she wrote for Joseph and will be singing this Sunday at the walk.  There were many tears in the room.  After we all prayed together (and several of the prayers were regarding autistic children, their families and teachers, and for our family and Joseph) we prepared to leave.  I looked over and Joseph was surrounded my boys looking at his Transformer toys he had brought with him.  I'm sharing this story for two reasons.

First to show how far Joseph has come.  There was a day when he would talk to no one!  I could not even get him to be a sheep in the background of a Christmas play at church.  And here he was running to the front of this big group and saying hello!  Praise be to God!

Secondly, to praise an amazing group of young people that treated both Jessica and Joseph with respect.  How many high school kids do you find sitting in a school cafeteria listening to two autistic children talk about their world and then praying for and supporting them?  These kids are amazing!  They will be dressing in camo on Sunday and taking a bus down to the walk and walking in honor of our Joseph.  However, all those dealing with autism.....adults, children, families, teachers, schools.....have been assured of prayers from this outstanding group of youth!  Thank you Bishop Neumann High School TORCH group.  I am so proud to be a parent supporter!  God bless you all!!!

Happy Birthday!

I can't believe he is 10 years old today!  What a decade it has been!!!!  There are enough stories to write a mini-series on his short life.  I always find myself reflecting back on their birth on their birthdays!  I hesitate in doing so with Joseph.  Do I still have some hidden guilt on the way I handled his early birth and my bad health?  Do I still wish things had turned out different?  Or do I just wish I had known then how it would be today?  I don't know the answer but I find it hard nonetheless.

We celebrated his birthday a day early as I am giving a talk tonight regarding the walk this weekend.  He was invited by the T.O.R.C.H. group at Bishop Neumann to come with me so the kids could meet the little guy they are going to sponsor this weekend.  I heard from a little bird that attends school there (ahem....wonder who that is???) that they were giving him a surprise birthday party.  So we did our family thing last night with all the siblings.  He is big....REALLY BIG....into Transformers.  So that is what we focused on.  The big hit was a Wii game that Jeffrey gave him!

Birthday boy and oldest sister, Amy

With his shirt sister Mary Clare made him.

His reaction to the Transformer that mom and dad gave him.

I love seeing that smile!!!!!

So tonight he will go hang out with all the high school kids who dote over him.  He will be a super star.  He says he wants to "give a talk about autism".  I asked him what he would say.  He told me that he wanted to tell them what it was like to have autism.  There will be a senior girl from Villa Marie who has autism and she will give a speech on the same topic.  But we will see if he actually has the nerve to do it.  Usually he shuts down in these forums.

And so....

Happy Birthday, my little boy!  It has been a lesson in life that God knew I needed.  You have taught me patience and unconditional love.  You have taught me how important the message of life truly is, no matter the handicap, and that it goes far beyond the life of the child in the womb.  You have taught me that there is goodness in all of God's creatures.  You have taught me that I can go on very little sleep and just how much I truly NEED that sleep!  You have taught me to cry, to laugh, to sing, to pray and to live.  You have taught me detachment to material things as you have absolutely NO attachment to them!  You have taught me that a mother's love is the strongest emotion on earth.  I love you......"to the moon and back again.....around the earth and back again....I love you more!!!!"

One Week - The Final Countdown

We are down to the final week before the big Autism Speaks walk!  It has been an amazing few weeks.  I can not believe the donations, prayers and words of encouragement!  Team Camo Angel is now in 3rd place in the whole state of Nebraska!  I am in 2nd place as a top individual.  This is amazing for our first year.

But, as you guessed, I still need your help.  We are not finished.  If you have not made a donation and was planning to do so then now is the time.  We will be walking Sunday afternoon.  And if you have donated, is there not one person you know that would help?  You can forward this email with the blue link below. 


http://blba.us/i.asp?id=474951-332910406-1



Again, thank you so much for all you have done!  It has been an exciting thing to watch as we moved up in donations!  I still say I have the greatest family and friends in the world!!!  God bless! 

Vinegar and No Honey

PRESS RELEASEFor Immediate Release: September 27, 2011

Contact:Lori McIlwain (Cary, NC) 919-741-1646 Leslie Phillips (Katy, TX) 281-578-2793

National Autism Association (NAA) Says Vinegar-Soaked Cotton Balls in Disabled Students’ Mouths Underscores Need for ‘Aversives’ Ban Katy, TX – Monday night, in an effort to demonstrate inhumane practices known as “aversives” happening in special-ed classrooms across the county, school district officials in Texas were asked to insert vinegar-soaked cotton balls into their mouths. The request came from advocate and NAA board member Leslie Phillips following multiple reports from local parents who say their children attending Exley Elementary school in Katy were force-fed cotton balls soaked with vinegar as a form of discipline. “There were no takers to the request,” said Phillips. According to parents, Exley students, some of whom are nonverbal, were sometimes forced to get on a classroom treadmill, ostensibly there for exercise breaks and forced to go faster or longer than they wanted. In addition, cotton balls saturated with vinegar were placed into their mouths to control behavior. Parents say they were told certain “procedures” had been used on their children without their knowledge or consent, and the district would address the issue. Exley Elementary School Principal Imelda Medrano used only vague references, saying, “a treadmill was used” and “vinegar was introduced.” “Parents Carol and Bill Rutar said they were dumbfounded to learn these strategies were not illegal. "If I were to attempt to force an adult to do something like this, I would be arrested and charged with assault and battery. Further, if this happened to a student in a general education setting, there would be public outrage. It’s precisely the type of bullying behavior between students that is the focus of national attention and expressly prohibited," said Carol Rutar. Parents still await information from the investigation, conducted by the district’s own police department who has confirmed the matter has been handed over to the District Attorney. Aversive interventions tantamount to child abuse are being used in many schools across the country. “Withholding food and water, lemon spray to the eyes, force feeding, sensory exploitation, shaving cream to the mouth, peppers to the mouth – these are just some of the assaults that have been used on schoolchildren as a failed means to control behavior,” said Lori McIlwain, Executive Director of NAA. “Positive behavioral interventions have been proven successful, there is no excuse for aversives in our schools.” Phillips, who spoke with a Texas Education Agency official about the case, was told that while Texas is one of few states that regulates seclusion and restraint in public schools, “. . there is no law that says aversive interventions are or are not legal in Texas.” The advocate hopes school principals nationwide will take positive action. “My message to principals is this: if aversive interventions are happening in your schools, you should act to stop it. Positive support training is needed, and law or no law, aversives are abusive and dehumanizing. They should be banned in your school.” For more information, please visit www.nationalautism.org and www.autismsafety.org.

Eye Issues Again

Not sure what is going on but he is having double vision again.  I mentioned that he was complaining about it at church Sunday.  Well, yesterday the school called me and said he was running into desks and rubbing it constantly.  When they asked him about it he said it was blurry and he was seeing "two of everything".  I went up to the school to monitor him and he seemed upset over the whole thing.  He was worried about tripping or running into something.  He wanted to come home but I thought it best he stay and see if he was not just wanting to get out of school.  I could see a worried panic look in his eyes as I left.

He came home still very stressed about it and saying he could not see.  Then he starts asking for glasses.  We bought him some reading glasses the last time we went through this and it made him happy.  They did not fail me this time either.  He swears he sees better.  He left this morning (picture above) wearing them to school.  So....what is it?

The last time we blamed it on medication.  However, he is on different medication this time.  Could it still be the medications although a different one?  Or could it be allergies?  They are really bad right now and he does have a runny nose and cough.  Or could he be exaggerating the situation?  I have to remind myself that it is the little things that drive him nuts while the major aches, pains and discomforts do not bother him until his body is shutting down.  So.....what is it???????

He also is in a completely different frame of mind.  He is very calm and quiet.  He went to his room by himself last night and started writing a book about a super hero with autism.  It was only 3 sentences but he was putting the effort out.  I'm so perplexed this morning.  Any ideas on the eyes would be greatly appreciated!  



I Reached My Goal

I can't believe that I finally reached my goal....in one day!  I finally got over $150 of donations to Team Camo Angel for the Autism Speaks Walk.  Thank you SO much for the support.  We are now in 11th place as a team.  If you have not done so yet please consider making a donation to our team in honor of Joseph.  This goes to an awesome cause!!!!!  Just go to our donation page:

http://blba.us/i.asp?id=474951-332910406-1

The walk is October 9th so time is running out!  Thanks for all your help, prayers and support!

Raising Cane

Okay.  This is a two meaning title.  First of all, on Thursday we had the Autism Speaks fundraiser at Raising Cane's in Lincoln.  We took Joseph for dinner and were met by more family and a few friends.  It looked like a great turnout.  Hopefully, at least one person out there learned something more about the mystery of autism. 

The ride to Lincoln was during traffic hour and it was raining, cold and nasty outside.  He was really bothered by the whole thing and just sat in the backseat rocking and talking to himself then screaming to me (in a loud overpowering voice) asking when we would be there because he was "starving to death".  The restaurant is located on a very busy intersection and when he got out of the car he panics.  He covered his ears, froze, looked terrified and wanted to get back in the car.  My fear was that he would run.  As I am trying to figure out what is wrong and thinking, of course, that it was the traffic, he screams that it is the "stupid music!  Why do they have to have that stupid music blaring like that!  Make them turn it off!!!!"  The music was a single speaker OUTSIDE the restaurant with some music playing at a volume that could barely be heard above the traffic.  But THAT is what set him off.  Does anyone wonder WHY the puzzle piece is used as the universal autism symbol?

And secondly, I intend to write about how the weekend was FULL of raising cane.  I just wish it could have been in the form of more yummy chicken dinners and not stress.  I got my granddaughter Friday afternoon for the weekend.  In hindsight, that was not such a good idea after the past week we had with Joseph.  I think I should have waited for the medications to really start working and for him to get stabilized.  Everything was okay Friday evening as Joseph was actually sleepy and very calm.  But Saturday both grand baby and Joseph were not very happy.  The baby was very whinny and seemed to not be feeling well.  The crying baby totally set off Joseph.  He became louder, aggressive and kept screaming to make her shut up!!!!  The louder he got the more she cried.  It was total chaos.  Thank God for a husband that was on top of things and took the two boys to work with him for most of the day.  I was able to get the baby settled down and some housework done.

Sunday was rainy again.  This is never a good thing with Joseph as it keeps him locked indoors and his energy MUST be released.  He made me very nervous at church.  He looked scared and pale.  He was saying that his eye was blurry and he was seeing two of everything.  I figured a migraine was coming on and watched him closely.  But after mass he played outside with the other children, ate well, and seemed to be doing fine.  The weather cleared and he played outside when we got home.  I gave him his sleep medicine on time however he was not asleep by bedtime and I was concerned.

He feel asleep around 9:30 but was up at 11:45 and was up the rest of the night.  The whole night!  Moving around, eating, watching TV, playing video games and talking to me!  LUCKY ME!  I feel like a truck me this morning but he just bounced off to school happy and alert. 

Awww.....sleeping like a baby....as a baby.  This may be close to what

he looks like today at school!!!!

As to me, I guess I will just remember this quote:

"I'll sleep when I'm dead." ~Warren Zevon

Rattlesnake In A Pickle Jar

After a long day....a very long day....we saw his doctor this evening.  I went in so exhausted but still angry enough to demand something be done.  I left feeling satisfied and found a little peace.  Satisfied because the doctor saw Joseph in ALL his ADHD glory!!!!  He broke a clock and was attempting to break the scales in his doctor's office.  He attempted to turn off the lights.  He talked none stop about things that didn't make sense.  When I told him the doctor could not see in the dark he asked, "How do you know he doesn't have night vision, huh?"  I said because he is not a robot.  He asked "how do you know?"  This went on for 30 minutes straight. 

And then I felt peace because I said what I had to say and demanded solutions.  I told HIM how it was going to be.  I told him that I would bring Joseph to the hospital and leave him there while he is monitored and the meds adjusted until something works.  I told him I was seeking RTC and that this would be the best thing for him.  He did NOT disagree.  He listened....and that means a lot!!!

He put him on Tenex which I asked for and Munroe Meyer had suggested.  He added Ambilify with his evening medication.  And also put him on Ritalin...a small dose....that may help the Tenex even more.  And then......................as always........insurance!  They would not cover the Ritalin until they got a doctor's pre-authorization.  As I am telling David about this Joseph says from the backseat, "Well, that makes about as much since as a rattlesnake in a pickle jar!"  Sometimes that boy is SO smart and profound it just scares me!!!!  I agree, Joseph.....I agree!!!!  So we will see what happens with that.

So we got some medications to try, a school to look into, and a plan for the future.  And now I am tuckered out!  He is fast asleep and I have to grab every moment that I can.  I just wanted to update all of you.  Thank you for all the prayers, the emails, the masses and the rosaries offered for our family.  I can not believe how strong I feel tonight.  I know that it is your prayers holding me up!!!  God bless!!

Tuckered out....Joseph at the air show.  This is how he deals with stress in public.

Over 90 degree day so the cement is hot.  But he was done!

Still No Answers

I did not notify anyone of the last post.  I was too distraught and maybe a little ashamed that I posted it.  I'm still stressed beyond my human limits but felt that I needed to offer an explanation to those of you who have been praying like crazy for me.  And I know you have been praying...I have felt it.  Our saga is not over.  At this point not too much has changed.  I will tell you what I know so far and share with you my only morsel of good news. 

This past month or two has been so hard.  He started falling apart after we were forced to move in a very stressful and scary situation back in June.  I thought coming back to this house would make him more at ease but I was wrong.  So yesterday after having a very hard weekend and functioning (or not) on very little sleep I had decided to make him a ward of the state so that I could get him into residential treatment.  This was a very gut wrenching decision to make but I fear for the other children and I'm left with little choice.  No one will help us any other way.

I got on email and the phone Monday morning begging for help and searching for answers.  I want him out of my house as soon as possible.  That was my only thought and mission.  My family can not handle the stress much longer.  I turned to a friend of mine all the way in Oregon who also has an autistic son.  I have to keep reminding myself that every case of autism is different and that some are worse and some not as bad.  Joseph's is "complex" and "unique".  That's just what every mother wants to see on report after report. 

I have followed all the directions and rules in getting him the help he needs.  I was told to seek this therapy and that therapy.  To explore all avenues first.  We had in-home therapy.  We had cognitive behavioral therapy.  We had occupational therapy....speech therapy....physical therapy.  We have tried medications for sleep, ADHD, bi-polar and anxiety.  I have done tons of sensory therapies and changed our family life and our home to accommodate Joseph.  Nothing heroic here...any mother would do this.  However, at some point, you want to see a pay-off.  There has been none.  We are at square one....right where we were 3 years ago.  Forget the fact that I have 2 doctors that have recommended residential treatment.  That, apparently, is not enough.  Because once you follow all the rules of Nebraska you THEN have to follow a totally different guideline per Nebraska insurance! 

I did find out one helpful piece of information.  I was told that if we bring him back to CAPS I do not have to go get him until I feel he is not a danger to himself or my family.  I know our insurance allows for a 30 day stay.  They always send him home after 3 days.  It won't happen next time.  And if I refuse to go get him then the hospital will order him to a residential center.  This is my understanding.  I could be wrong.  It would not surprise me.

After a horrific day of mommy meltdowns and tears and hoping for a day of recovery in a quiet home, the school called first thing this morning to tell me that Joseph was vomiting and I had to go get him and bring him home.  I figure it is too soon for another migraine so it is either a) motion sickness from the bus or b) he is doing it on purpose to come home.  Doesn't matter.  I had to go get him.  And he is NOT sick!  He is now bouncing off the walls, demanding food, watching loud cartoons....having a great time.  If I get another letter from the truancy office this year I will be giving them a piece of my mind loaded with pent up angry energy.  BEWARE MR. TRUANT OFFICER!

Tonight we meet with his doctor and I will demand a set of medications that work.  And if they don't within a few days I will be back up there again....and again....and again.  They can put up with a very loud and angry mother day after day or they can hospitalize him, monitor him and get the medications right once and for all!  And so our life continues to spiral out of control, our property damaged, our children threatened, our house in chaos and in the hands of a very stressed out, tired, and angry mom.  So for those that have been praying, please continue to pray.  This is not nearly over.

Exhausted

This is an understatement.  I honestly do not remember the last time I felt this way.  My bones ache.  My eyes just want to close.  I hurt for sleep.  I don't even have the energy to smile.  I can hear the kind well intentioned words:  "God will not give you more than you can handle." or "This too shall pass." or "Tomorrow is another day."  I appreciate it but this does not give me the sleep my body is screaming for or the rest my bones seek. 

This week has been one of the hardest we have had in the past year.  We should have taken him to the hospital (CAPS) several times this past week but I keep hoping and praying it will get better.  Things are so out of control.  After years of therapy I feel we have gotten nowhere!  I have to start looking for a solution to the future.  I am trying to find a residential treatment center.  And do not judge me.  If anyone reading this post wants to walk a day in my shoes, come on.  I won't deny you the honor.

The aggressiveness toward the other children is at an all time high.  The verbal assaults toward me are totally out of control.  Personal property is getting destroyed or damaged.  The younger children are being encouraged to disobey and holler back with extreme disrespect.  I feel like my family is under attack.  I feel trapped.

The verbal assaults are getting graphic and violent and it scandalizes the other children.  I was called a demon from hell and he screamed that he can't wait for me to die and go to hell.  This was over the fact that we had to run down the road to pick up the other children from their bus stop.  Or he says he is going to murder me or hopes someone else does.  He threatens to kill siblings with a knife.  He is sleeping less even with large amounts of sleep medications.  His anxiety and stress levels are incredible.  I can't imagine the fear he deals with 24/7. 

Please someone help me.  Please....there has to be answers and help somewhere out there.  Please.

Upside Down

That is the way he wants to stay.  Upside down, inside out, this way, that way, over, under, on, off..........and finally he passes out.  This has been a constant the last few days.  It is mind boggling.  I swear that if we could figure out a way to hook the house up to him we could go off the grid.  The energy is like nothing I have ever witnessed.  I started wondering tonight if it feels like restless leg syndrome.  I get that sometimes and want to keep moving my legs. 

Moving so fast I could not get the picture.  This is his favorite position.



This week has been hard.  VERY hard.  I am fearful at this point of him being able to stay in the home through his teenage years.  Monday he was out of control.  He got on the roof of the barn, got a bow and arrow out of the shop and was using it with a yard full of children, started running again (this is when he runs out of control away from whoever or wherever we are), had several meltdowns, threw a brick at a sibling, broke rule after rule after rule....just totally out of control. 

Part of this could be due to the fact that he got off his daytime medication that helps with the ADHD.  This is the medication that insurance has stopped covering.  I thought we would just do without as I am tired of going through this insurance and doctor saga but now I don't know if that is possible. 

I met with the graphics shop today to work on our T-shirts for the walk.  We are looking at camouflage shirts or hunter green with the hunter orange writing.  I am also thinking about having a banner made.  I have 80+ kids from my daughter's high school signed up to walk with us!  And I have sold a few puzzle pieces!!!  Things are moving along.

I am going to post the links again.  Yes, I am begging.  I'm sorry that it may feel that way but there comes a point in a person's life when they feel like there is nothing left to do but to beg.  I feel tired and hopeless in dealing with this disability.  Putting myself behind the cause of finding answers to the puzzle of autism helps me vent some of the stored up energy.  So, please do what you can.  And those of you in the Lincoln area please come join us for the walk.  We are asking our friends to come to the Haymarket on October 9th at 2 p.m. wearing something camouflage.  God bless and thank all of you! 

For a donation please go to:  https://www.kintera.org/faf/donorreg/donorpledge.asp?ievent=474951&supID=332910406

To buy a puzzle piece go to:  http://bit.ly/oK0hWi

Those interested in walking and wanting more info can go to:  http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=474951&lis=1&kntae474951=F57EA236AD644D3096623FFF765577E3

Another Trip to Hospital

It started Thursday morning as I was writing in his school journal.  Thursday's forecast was a high of 99 with high humidity and a heat index of 105.  I wrote to his teacher that I would not be surprised if he got a headache, became lethargic, or even started vomiting.  I had noticed during the summer that very hot days seemed to trigger his migraines.  It was not shocking to get the phone call that he was, in fact, in the office vomiting.  However, I was confused as to what it was because I had also been called earlier that day to go pick up another sick one but he had a headache and sore throat.  Just in case we were dealing with strictly a migraine, I gave him his medication.

I watched Joseph closely that night as he continued the vomiting.  His only other symptom was a horrible headache.  Still not sure if it was a migraine and/or what the other one had I kept him (both of them) home from school yesterday.  So we spent all day Friday vomiting and dealing with the headache in waves.  It was always there but it would be moderate and then severe.  He was able to keep a little food done but as the day went on he started crying and holding his head.  Dark circles were forming under his eyes.  By yesterday evening he was begging us to bring him to the hospital because he thought he was dying.

He vomited on the way there and was screaming to hurry.  When we walked in they put him straight in a room and started tests.  The blood work came back great.  Blood count and electrolytes all looked good.  He had a low grade temperature of 99 probably due to the pain.  He had a sheet over his eyes saying the light hurt his head.  They started an IV and gave him Benadryl and Reglan for the pain.  A CT scan was done and everything looked great.  Diagnosis was a severe migraine. 

I see there were many warnings of what was to come.  I believe that he has auras.  Wednesday I talked to his teacher and she mentioned him rubbing his eyes a lot that day.  Auras in children start up to 24 hours before the migraine hits.  Another warning is extreme hyperactivity.  We were seeing him blurting out and not being able to sit still and stay quiet.  If I can start charting this more closely there are foods and situations he can avoid and medication he can take that will stop the headaches from getting this bad.  These post traumatic headaches are often life long and can get much worse over time. 

Today he is in what they call postdrome.  This is the time of lethargy, dull head pain, exhaustion, and loss of appetite.  God has asked our little boy to suffer so much but I know that all things are in His hands.  As painful as it is, as a mother, to watch I tried to offer it up for all the mothers in this world that watch their little ones suffer from things from which there is no return.  I could not imagine walking in their shoes. 

Weekend News

The football game Friday night was better than I expected.  Joseph did not want to go and fought me until we got there.  He instantly started looking for his escape route, if needed.  He made sure over and over that if he didn't like it and it was too loud we could leave.  But once inside he saw that it was a small group and not as loud as he feared.  He watched part of the game with me but was very bored.  And then he saw all the other little boys playing football down on a grassy area.  That was it.  He did not sit with me in the stands again.  He asked on the way to the car after the game who won!  I think I will leave him next time but he did do great for his first game.  (by the way, WE WON!  Go Cavaliers!!!  And I am not sure WHAT is wrong with Jerome's mouth in the photo above!!!)

Learning to cast.  He already had this down!

Saturday we went to a fishing clinic sponsored by the Walleye Association for special needs children and their siblings.  This was a huge hit!  Not only do my children love to fish but they learned a lot of things they did not know before and got free fishing poles!  It was a day full of fishing with our little Camo Angel catching the big fish of the day!  He was so proud!!!

Not real happy with water safety class.

With his big bass!

He was all smiles after that!

Things changed drastically by Sunday evening.  We took them fishing again on Sunday afternoon.  But all day he was extremely unpredictable, hyper, aggressive, and whiny.  I have seen this behavior before and know it is a warning of things to come.  I gave him his sleep medication that evening around 8 and by 10 he was still wide awake.  I sent him to bed and he seemed to doze off for a little while although he was restless and would not stop moving and jumping in his sleep. 

I woke at 2:30 a.m. and he was awake watching Sponge Bob in the living room.  I stayed on the couch the rest of the night with him.  He did not go back to sleep.  Morning found him more wound up than the day before.  He was standing on his head in a chair, talking and hollering, blurting out, flitting from one place to another, and stimming by rocking, flicking his fingers, and smelling his hands.  I knew it was going to be an eventful day.

His teacher called me that afternoon to report he was asleep and they could not wake him.  She said he was turning in circles and full of movement all morning.  And then, it was like pushing a button and he went to sleep.  He slept the rest of the afternoon.  They did some sensory therapy to try to keep him awake on the bus ride home.  He was very quiet last night.  And he went to sleep on time.  Although he woke several times during the night I was able to get him back to sleep.  He actually slept all morning as I was getting the other kids ready for school.  He told me he did not have a headache so I am not sure what it was all about.  However, as a note to his teacher, bad weather WAS moving in so the barometric pressure had to be changing.

Why are there so many autistic children with sleep problems?  No one knows for sure.  This explanation is from WebMD:

 

Researchers don't know for sure why autistic children have problems with sleep, but they have several theories. The first has to do with social cues. People know when it's time to go to sleep at night thanks to the normal cycles of light and dark and the body's circadian rhythms. But they also use social cues. For example, children may see their siblings getting ready for bed. Children with autism, who often have difficulty communicating, may misinterpret or fail to understand these cues.

Another theory has to do with the hormone melatonin, which normally helps regulate sleep-wake cycles. To make melatonin, the body needs an amino acid called tryptophan, which research has found to be either higher or lower than normal in children with autism. Typically, melatonin levels rise in response to darkness (at night) and dip during the daylight hours. Studies have shown that some children with autism don't release melatonin at the correct times of day. Instead, they have high levels of melatonin during the daytime and lower levels at night.

Another reason children with autism may have trouble falling asleep or awaken in the middle of the night could be an increased sensitivity to outside stimuli, such as touch or sound. While most kids continue to sleep soundly while their mother opens the bedroom door or tucks in the covers, a child with autism might wake up abruptly.

Anxiety is another possible condition that could adversely affect sleep. Children with autism tend to test higher than other children for anxiety.



I have also been asked to talk to the TORCH group at Bishop Neumann about autism and the upcoming walk.  They will be joining us for the walk!  And I am hoping to talk to and get the St. John Bosco youth group to join us as well.  Go Team Camo Angel!!!!!

"My Problem"

"Mom, I was sad today."

"Why, Joseph?  What made you sad?"

"Dan was making fun of Trey.  He was laughing at him because Trey likes 'Dinosaur Train'.  He said that he was going to grow up to be a man and watch 'Dinosaur Train' with his coffee.  He said it was a baby show.  He said Trey was stupid for watching it.  Is that true?"

"No, Joesph.  It isn't true.  That is a good show and I like it too."

"But Dan made Trey cry.  It made me cry too.  Because I love Trey.  Because he is like me.  He has problems.  He has autism like me mom.  And that makes me sad."

"Whoa...wait a minute, buddy!  Problems?  Who says you have problems?  What color is your hair?"

"Brown."

"Is that a problem?"

"No."

"What color are your eyes?"

"Um, I don't know.  Are they brown?"

"Yep.  And is that a problem?"

Giggling he replies, "No."

"And how many hands to you have?"

Laughing hard he says, "Two."

"And is THAT a problem?"

"NO MA'AM!"

"Then, baby, your autism is part of you.  It is not a problem.  It is different.  It is a challenge.  It makes you work hard but it is who you are!  You are NOT a problem.  Momma loves you.  I love you so much....just the way you are."

"I love you too, momma......and Trey.  I love him too!"

It is all I have the strength to post today.  I am so fearful for his future because of the cruelty of other children.  I was awake again with nightmares.  And I wonder if I was right for saying he doesn't have problems......I guess I will always second guess myself.

I am taking him to his first football game tonight.  His sister is in the high school band so we are going to try a game.  I pray that he can handle the noise and excitement.  You never know how these things can unfold.  Pray for us.

First Full Day of School

Today was the first full day of school.  Yesterday was a half day.  Someone asked how his day went so I want to report that he got off the bus yesterday with a big smile.  However, today he fell asleep on his way home.  The driver is being so kind and working with him.  He is one of the last to get off in the afternoon so she just woke him when she got here.  Not sure why he is so tired these past 2 days.  Perhaps too much anxiety with school starting.  But it is cooling off.  We are suppose to be in the 50s tomorrow morning.  I wonder if the barometric pressure is acting up?  I'll report this to his teachers.

Fixing Autism

In His World

"Mom, is it raining?"  I sat there amazed and unable to answer the question for a moment.  Raining?  The sun was brilliant.  The skies more blue than I had seen in weeks.  No clouds.  I had my sunroof open, the windows down, and the warm wind was blowing through the van.  Raining?  Why would he think it was raining???  "No, Joseph, why?"  "Because there is water on the window."

Sure enough, I had rolled the passenger side window down and then rolled it up a little.  The morning condensation had gotten the window a little streaky with water.  To him, there was water on the window so it must be raining.  Forget all the other obvious signs that it was NOT raining.  This is Joseph's world.  This is the world of autism.

I met my husband later in a parking lot where he works.  He waved to Joseph.  We talked for 15 minutes as I sat in my car and he sat in his.  Joseph played on the floor in the back of my van.  Did he know we were stopped and that I was talking to someone?  Didn't he wave to his dad?  However, when I went to leave I said, "Dad is waving goodbye to you!" and he jumps up looking and asks, "Dad is here?!?!?!"  This is Joseph's world.

I have to remind myself everyday that we live in a world of literal interpretations.  Everything is black and white.  If he asks a question I must say "yes" or "no" and not "maybe" or "we'll see".  Saying something with sarcasm is risky.  He has gotten better with it as he studies your face waiting for a smile or hint of the sarcasm.  But I remember telling him once I was about to pull my hair out.  The fear and anxiety that crossed his face told me that he had a vision of me doing just that!  My favorite part in the Temple Grandin movie is when the aunt says "We get up with the roosters around here".  Temple's autistic mind sees in pictures and that is exactly what she saw!!!

This is one of the reasons why our family does not do any of the fictional holiday characters such as Santa Claus, tooth fairy, etc.  And I guess it was not a good idea to tell him yesterday that we were on the Interstate behind a Transformer (18 wheeler).  He started calling it by a name, Optimus Prime and then asked me how the transformers got into stores.  That confused me!  Then he said "well, it was out on the road but then you can go to the store and buy it. How does it do that?"  ***sigh***  I should know by now.....black and white.....yes or no.....big truck....NOT TRANSFORMER!!!!!!