Thursday, December 26, 2013

20 Questions and the New M-CHAT-R-V

The old M-CHAT, an aid in diagnosing autism, has been updated to  M-CHAT-R-V.  This is a document composed of twenty questions for parents to answer and covers the age of toddlers 16 to 30 months.
The information I read claims the new M-CHAT-R-V;
>decreases rate of false positives.                                                                                                                                                                                                >detects more ASD cases when used during routine checkup.
The tool is free and available to use.   To obtain a PDF go to http://www2.gsu.edu/~psydlr/M-CHAT/Official_M-CHAT_Website.html
There is no translation as of yet.
******Please use the free material within the guidelines provided.  Early intervention is often the key to helping those with autism obtain the needed services to be better prepared.  Yet, misuse of these materials can mean a setback.
Short brief on the guidelines;
>** No modifications may be made.
>**Reprints must the copyright info at the bottom of the page
>**For further information/restrictions on use in articles or other see                  http://www2.gsu.edu/~psydlr/M-CHAT/Official_M-CHAT_Website.html,         contact Diana Robins at dianalrobins@gmail.com.  This is not formal but       Robert Bock at 301-496-5133 should also be able to help you.  Mr. Bock wrote   the other article I used as a source of information.
AS ALWAYS THIS IS PROVIDED AS INFORMATION INTENDED TO BE USEFUL IN EDUCATING ONE ABOUT NEW INFORMATION ----ALWAYS CONSULT YOUR HEALTHCARE PROVIDER FOR SPECIFIC AND DIAGNOSTIC HELP. THIS INFORMATION IS NOT MEANT TO SUBSTITUTE OR SUPERCEDE THIS RELATIONSHIP.
ARTICLES AND INFORMATION used to write this short update are from
1. http://www2.gsu.edu/~psydlr/M-CHAT/Official_M-CHAT_Website.html
2.  http://www.nih.gov/news/health/dec2013/nichd-23.htm
********************__________________________________******************______________
More information on narrowing down the Genes associated with autism causes was talked about in article at  http://directorsblog.nih.gov/2013/12/03/network-news-gene-discoveries-for-autism/ at length.   Please read it to go into more depth than I am able to at this time.

INFORMATION KITS ON PREMATURE INFANTS FOR PARENTS AND HOSPITALS

My goal is to inform.  Bragging is at the bottom of that list.  I wish I had time to improve on my journalistic style but may later.  I feel getting to the point on this information is better for all involved.
I was blessed to come across this information from newsletters and only plan to pass it along.
Please understand that none of this is for diagnosis, treatment or prevention.  Please see your healthcare provider for all your heealthcare needs.
Available for download from the NIH;
     >**Named “Transitioning Newborns from NICU to Home: A Resource Toolkit”   Can           be found in PDF form on the web named nicutoolit.pdf
   > Transitioning Newborns from NICU to Home Family Information Packet.  Can be              found on web in PDF form under nicupacket.pdf
   >Beginnings Guides: Beginnings Pregnancy Guide & Beginnings Parents Guide                Evidence Base and Guidelines for Effective Use
Please share.  The goal is to make all people more informed.
This is a short to the point blog informing people about resources.  Style of writing is brief and to the point.  I hope those reading this understand. My thoughts are that people don’t want a lot of extra’s but just the information!

Friday, December 20, 2013

Invisible Rainbows (fictionalized account)

God has a plan for each and every one of us.  Yes, this is a belief and I recognize that as I tell this story.  This requires faith.  I would be a liar if I said I acted one hundred percent based on my beliefs all the time.  This never stops God from caring for us.  It started, as the Bible says, in the womb, God says he knew us even then.
I was on the phone today to congratulate and old friend and mentor.  “How many children do you have now Sandra?”
“Just one boy, a teenager that will be sixteen this summer, July 11. How about you? Seems I remember two girls.  I recall the oldest had blue eyes and the yellowest strawberry-blonde hair every seen in this world except that of her mother’s!”
My old mentor signs, “Correct as always. Sixteen? I don’t envy you for sure. Are you a nervous wreck from the driver trainings outings everywhere?”
“Actually no and I am not sure Rusty will ever drive.  You see he has Asperger’s or High Functioning Autism depending on the doctor and revision of the codes.  Rusty has some other distinct features that make things in our life follow a different train track and schedule.”  I state and in my mind know what is coming next.
“Oh Sandra!  I am so sorry.  I know quite a bit about that.  When I was working on my Pharm D., I went on Grand Rounds mostly with this one Neuro-pediatrician that specialized in this.  She believed the Theory of Mind was very descriptive of the process that caused social deficits as do I. So sad when genetic mistakes occur like this.  These children seemed doomed to a life role as social misfit.”
I talked a few seconds or a minute longer and made my excuse with a promise to keep up knowing I would not.  How sad that people like this will never understand my explanation of how Rusty is a blessing.  Through him I see the world so many ways.  I get to see those invisible rainbows that most miss because they refuse to look at the world twisting their head almost twice and bending over.  God has given many of these children/people a special view of the world that is just beyond most or most refuse to take the time to see the beauty.  Instead of seeing the invisible rainbow they name these people as abnormal or having things wrong with them.  Looking in the mirror to check one’s comprehension escapes most of these so called experts.
This Theory of Mind is really an insult in my books. A very simple statement of this theory is the ability to understand mental states or emotions of others.  It seems to be accepted as scientific fact that those with Autism lack Theory of Mind.  One teacher said it is like there is a mirror that reflects out of their eyes but not back into their mind so they can respond to the emotion and learn to process or respond to mental states or emotions of others.
I know you might agree with this from what you have seen.  You may have come across one of these people that seem to be in a world all his/her own.  It appears they may even have a special language.  Now I think this may be true, especially when grouped with others of such like awesome talents.
Teachers often gripe and say an autistic child is not paying attention.  If you come upon this in life, please, if you can, have the child repeat what the teacher said.  Then ask the child what he was doing.  I guarantee you odds are that child is doing exactly what the teacher said.  To make it interesting, ask little John/Jane what was going on in the classroom at the time.  Here is one of those invisible rainbows.  This may be the closest thing there is to being transported back in time to a specific time/event.  Many of these blessed outcasts can recreate an exact picture for you.
As I said at the start, I do not act on beliefs one hundred percent of the time.  One day at the Y pool with a young school age Rusty, he popped this question. “Why do those people have toilet paper in the pool?”
I was in a hurry knowing my husband the way I did.  “No Rusty those people do not have toilet paper in the pool.  Now let’s go Dad is waiting.”  I bent over to get our tools saw the group of chronologically older people using water weights that just happen to be all white.  I just discovered all the toilet paper Rusty was seeing in the pool. Finally, I could explain in to Rusty on the way home.  As usual it was not him but the normal person that assumed the autistic child was in his own world as always.
Labels are just that.  Something a person or group uses to define a thing or person so he/she/they can understand it.  This may be right or not.   All I know is what I have experienced.  Rusty was normal baby if there was one.   This could be because in my family each of us were different and embraced for it but treated and loved the same and different.  I know this may sound a contradiction and it is and then it is not.  Basically, just because one child didn’t do everything the same way by this date or milestone but was close life went on as always.  Overreaction causes tension as stress for the babies which results in some of these problems.
My most treasured invisible rainbow was my son, Rusty’s observation that I was not myself since the wreck.  I felt something was wrong physically.  Nothing was showing up.  A so called provider expert in brain injury pegged it is this and told me it was not the brain injury and when asked if she might be wrong said definitely not.  Rusty gave me the confident each time to my injuries taken care of, which included vestibular dysfunction and more fracture;  quite an invisible rainbow.

Tuesday, December 17, 2013

Thursday, December 12, 2013

2 Fiction: The Indelible Night of Memory

Jackie, with her long red hair, sat on the end of the sofa watching tv after dinner.  Mom had cooked delicious spaghetti.  Jackie loved mom for cooking it while her friend Rozelen had been able to come on the sleep over after all.

Jackie was cringing inside because her father was passed out on the couch smelling of beer in his boxer's.  Rozelen pretended not to notice.  What made it exceptionally hard to bare was the fighting between her parents before dad passed out ant Ross, her cousin that lived with them,had to work tonight.

At least now he was asleep.  Rozelen asks,"Is it safe to play cards now?"
Jackie sizes up the situation and replies, "Of course." While she then goes off to get them.  Surely after eleven beers he was out for the count.

After a couple of hours playing cards and WhaHoo with only three marbles  each Ross called.  "Jackie can you tell your mother it is time to pick me up? I get off at 10 tonight."

Jackie went and woke her mother up and they drove out of the driveway.  Jackie's tummy drew tight.  Glad her father passing out finally came and gone, didn't feel much better with her mother driving.  The other week her mother drove over a parking meter.  They had only been in Biloxi for four weeks.  Her dad was working at his Master's in Education at the Mississippi State University Coastal School. Aileen, Georgia was much smaller than Biloxi.  If they were there her dad could walk to town to buy his beer and come home.

They were living in their Aunt and Uncle Mason's house and taking care of Ross while they were overseas in Europe on a University Professor Exchange Program.

Mom told them girls to come with her quietly not waking her dad in the process.  Rain started after they were safely in the car.  Mom had the girls singing and looking for horses to play a game Aunt and Uncle Mason had taught them.

Arriving at the campus janitorial and maintenance station, Mom got out to go get Ross.  Ross wanted to drive having heard of the parking meter incidence. Mom wouldn't hear of it.

All rolling along in the car having fun stopped.  Mom managed to get a poll through the front passenger's side floorboard.  Ross said "How did you do that?"  Ross tried to work it off gradually but was scared of what he knew would happen.

That tightening of the belly Jackie felt was instinct.  Soon a small car her father always drove to save gas pulled up. Cussing started and yelling. Bam. Mom falls to the ground. Ross had a feeling. He gets Rozelen out of the way in the other car and head home. He didn't like leaving Jacke but knew she was used to it.

Dad hits mom again. Finally, dad gets the car off of the poll. How the car wasn't damaged other than a hole no one could guess. The ride home wasn't as smooth as the work dad had done on the car. 

The car almost slides into a creek with a 20 foot drop of and gators in the creek.  That tightening up is now a full knot.  Yelling, bitching and fist shaking is going on between both parents.  Jackie wants to get home to her bedroom to go to sleep and let them cool off.

The cooling off doesn't happen.   A stop for  more beer makes for a hell of a long night.  Mom pushes dad when he gets home.  Jackie wonders why.  Knowing this would only trigger her dad to act by swinging his arm and bam. MOm is lying out on the ground in front of the house.  Jackie only can run in and up to her room upstairs.

Listening to the fight about who is going to go and who is going to stay and dad isn't going to pay child support.  This could have all been avoided if mom had let Ross drive home.  

Jackie years later has to go to the funeral of her Uncle Mason.  That night left an indelible memory that will last forever.

2 Fiction: The Indelible Night of Memory

Jackie, with her long red hair, sat on the end of the sofa watching tv after dinner.  Mom had cooked delicious spaghetti.  Jackie loved mom for cooking it while her friend Rozelen had been able to come on the sleep over after all.

Jackie was cringing inside because her father was passed out on the couch smelling of beer in his boxer's.  Rozelen pretended not to notice.  What made it exceptionally hard to bare was the fighting between her parents before dad passed out ant Ross, her cousin that lived with them,had to work tonight.

At least now he was asleep.  Rozelen asks,"Is it safe to play cards now?"
Jackie sizes up the situation and replies, "Of course." While she then goes off to get them.  Surely after eleven beers he was out for the count.

After a couple of hours playing cards and WhaHoo with only three marbles  each Ross called.  "Jackie can you tell your mother it is time to pick me up? I get off at 10 tonight."

Jackie went and woke her mother up and they drove out of the driveway.  Jackie's tummy drew tight.  Glad her father passing out finally came and gone, didn't feel much better with her mother driving.  The other week her mother drove over a parking meter.  They had only been in Biloxi for four weeks.  Her dad was working at his Master's in Education at the Mississippi State University Coastal School. Aileen, Georgia was much smaller than Biloxi.  If they were there her dad could walk to town to buy his beer and come home.

They were living in their Aunt and Uncle Mason's house and taking care of Ross while they were overseas in Europe on a University Professor Exchange Program.

Mom told them girls to come with her quietly not waking her dad in the process.  Rain started after they were safely in the car.  Mom had the girls singing and looking for horses to play a game Aunt and Uncle Mason had taught them.

Arriving at the campus janitorial and maintenance station, Mom got out to go get Ross.  Ross wanted to drive having heard of the parking meter incidence. Mom wouldn't hear of it.

All rolling along in the car having fun stopped.  Mom managed to get a poll through the front passenger's side floorboard.  Ross said "How did you do that?"  Ross tried to work it off gradually but was scared of what he knew would happen.

That tightening of the belly Jackie felt was instinct.  Soon a small car her father always drove to save gas pulled up. Cussing started and yelling. Bam. Mom falls to the ground. Ross had a feeling. He gets Rozelen out of the way in the other car and head home. He didn't like leaving Jacke but knew she was used to it.

Dad hits mom again. Finally, dad gets the car off of the poll. How the car wasn't damaged other than a hole no one could guess. The ride home wasn't as smooth as the work dad had done on the car. 

The car almost slides into a creek with a 20 foot drop of and gators in the creek.  That tightening up is now a full knot.  Yelling, bitching and fist shaking is going on between both parents.  Jackie wants to get home to her bedroom to go to sleep and let them cool off.

The cooling off doesn't happen.   A stop for  more beer makes for a hell of a long night.  Mom pushes dad when he gets home.  Jackie wonders why.  Knowing this would only trigger her dad to act by swinging his arm and bam. MOm is lying out on the ground in front of the house.  Jackie only can run in and up to her room upstairs.

Listening to the fight about who is going to go and who is going to stay and dad isn't going to pay child support.  This could have all been avoided if mom had let Ross drive home.  

Jackie years later has to go to the funeral of her Uncle Mason.  That night left an indelible memory that will last forever.

2 Fiction: The Indelible Night of Memory

Jackie, with her long red hair, sat on the end of the sofa watching tv after dinner.  Mom had cooked delicious spaghetti.  Jackie loved mom for cooking it while her friend Rozelen had been able to come on the sleep over after all.

Jackie was cringing inside because her father was passed out on the couch smelling of beer in his boxer's.  Rozelen pretended not to notice.  What made it exceptionally hard to bare was the fighting between her parents before dad passed out ant Ross, her cousin that lived with them,had to work tonight.

At least now he was asleep.  Rozelen asks,"Is it safe to play cards now?"
Jackie sizes up the situation and replies, "Of course." While she then goes off to get them.  Surely after eleven beers he was out for the count.

After a couple of hours playing cards and WhaHoo with only three marbles  each Ross called.  "Jackie can you tell your mother it is time to pick me up? I get off at 10 tonight."

Jackie went and woke her mother up and they drove out of the driveway.  Jackie's tummy drew tight.  Glad her father passing out finally came and gone, didn't feel much better with her mother driving.  The other week her mother drove over a parking meter.  They had only been in Biloxi for four weeks.  Her dad was working at his Master's in Education at the Mississippi State University Coastal School. Aileen, Georgia was much smaller than Biloxi.  If they were there her dad could walk to town to buy his beer and come home.

They were living in their Aunt and Uncle Mason's house and taking care of Ross while they were overseas in Europe on a University Professor Exchange Program.

Mom told them girls to come with her quietly not waking her dad in the process.  Rain started after they were safely in the car.  Mom had the girls singing and looking for horses to play a game Aunt and Uncle Mason had taught them.

Arriving at the campus janitorial and maintenance station, Mom got out to go get Ross.  Ross wanted to drive having heard of the parking meter incidence. Mom wouldn't hear of it.

All rolling along in the car having fun stopped.  Mom managed to get a poll through the front passenger's side floorboard.  Ross said "How did you do that?"  Ross tried to work it off gradually but was scared of what he knew would happen.

That tightening of the belly Jackie felt was instinct.  Soon a small car her father always drove to save gas pulled up. Cussing started and yelling. Bam. Mom falls to the ground. Ross had a feeling. He gets Rozelen out of the way in the other car and head home. He didn't like leaving Jacke but knew she was used to it.

Dad hits mom again. Finally, dad gets the car off of the poll. How the car wasn't damaged other than a hole no one could guess. The ride home wasn't as smooth as the work dad had done on the car. 

The car almost slides into a creek with a 20 foot drop of and gators in the creek.  That tightening up is now a full knot.  Yelling, bitching and fist shaking is going on between both parents.  Jackie wants to get home to her bedroom to go to sleep and let them cool off.

The cooling off doesn't happen.   A stop for  more beer makes for a hell of a long night.  Mom pushes dad when he gets home.  Jackie wonders why.  Knowing this would only trigger her dad to act by swinging his arm and bam. MOm is lying out on the ground in front of the house.  Jackie only can run in and up to her room upstairs.

Listening to the fight about who is going to go and who is going to stay and dad isn't going to pay child support.  This could have all been avoided if mom had let Ross drive home.  

Jackie years later has to go to the funeral of her Uncle Mason.  That night left an indelible memory that will last forever.

2 Fiction: The Indelible Night of Memory

Jackie, with her long red hair, sat on the end of the sofa watching tv after dinner.  Mom had cooked delicious spaghetti.  Jackie loved mom for cooking it while her friend Rozelen had been able to come on the sleep over after all.

Jackie was cringing inside because her father was passed out on the couch smelling of beer in his boxer's.  Rozelen pretended not to notice.  What made it exceptionally hard to bare was the fighting between her parents before dad passed out ant Ross, her cousin that lived with them,had to work tonight.

At least now he was asleep.  Rozelen asks,"Is it safe to play cards now?"
Jackie sizes up the situation and replies, "Of course." While she then goes off to get them.  Surely after eleven beers he was out for the count.

After a couple of hours playing cards and WhaHoo with only three marbles  each Ross called.  "Jackie can you tell your mother it is time to pick me up? I get off at 10 tonight."

Jackie went and woke her mother up and they drove out of the driveway.  Jackie's tummy drew tight.  Glad her father passing out finally came and gone, didn't feel much better with her mother driving.  The other week her mother drove over a parking meter.  They had only been in Biloxi for four weeks.  Her dad was working at his Master's in Education at the Mississippi State University Coastal School. Aileen, Georgia was much smaller than Biloxi.  If they were there her dad could walk to town to buy his beer and come home.

They were living in their Aunt and Uncle Mason's house and taking care of Ross while they were overseas in Europe on a University Professor Exchange Program.

Mom told them girls to come with her quietly not waking her dad in the process.  Rain started after they were safely in the car.  Mom had the girls singing and looking for horses to play a game Aunt and Uncle Mason had taught them.

Arriving at the campus janitorial and maintenance station, Mom got out to go get Ross.  Ross wanted to drive having heard of the parking meter incidence. Mom wouldn't hear of it.

All rolling along in the car having fun stopped.  Mom managed to get a poll through the front passenger's side floorboard.  Ross said "How did you do that?"  Ross tried to work it off gradually but was scared of what he knew would happen.

That tightening of the belly Jackie felt was instinct.  Soon a small car her father always drove to save gas pulled up. Cussing started and yelling. Bam. Mom falls to the ground. Ross had a feeling. He gets Rozelen out of the way in the other car and head home. He didn't like leaving Jacke but knew she was used to it.

Dad hits mom again. Finally, dad gets the car off of the poll. How the car wasn't damaged other than a hole no one could guess. The ride home wasn't as smooth as the work dad had done on the car. 

The car almost slides into a creek with a 20 foot drop of and gators in the creek.  That tightening up is now a full knot.  Yelling, bitching and fist shaking is going on between both parents.  Jackie wants to get home to her bedroom to go to sleep and let them cool off.

The cooling off doesn't happen.   A stop for  more beer makes for a hell of a long night.  Mom pushes dad when he gets home.  Jackie wonders why.  Knowing this would only trigger her dad to act by swinging his arm and bam. MOm is lying out on the ground in front of the house.  Jackie only can run in and up to her room upstairs.

Listening to the fight about who is going to go and who is going to stay and dad isn't going to pay child support.  This could have all been avoided if mom had let Ross drive home.  

Jackie years later has to go to the funeral of her Uncle Mason.  That night left an indelible memory that will last forever.