Monday, March 31, 2008

Dear Noah....trip to Versailles....

We took a trip to Versailles on Sunday to check out some houses and the village/city itself......and we fell in love with it.  While there you also pointed out all the train crossings and signals so we went "rail fanning" as you all call it.  I took many photos of the train crossings and lights and BELLS and signals and you posing with the train crossings... but at the very FIRST crossing signal we went to after taking your picture you thought you heard or saw a train coming and sure enough.......one DID!  You said it was an EXCITING DAY and were so happy you were SO UP CLOSE AND PERSONAL to see and hear the train and see the signal crossing gates come down and the bell clang.   Here is one of many photographs taken from yesterday....we ended the day at your aunt Melissa's house where you got your fill of their Sonic the Hedgehog game.....where you also ended up with a headache...again looked very pale.......withdrawn...all signs of over-stimulation again....so home we went.   I let you stay home today from school to RECOVER.....and next will be a trip out for lunch at Fazoli's.  Right now you are busy making movies in your room using Windows Movie Maker.   I received an e-mail message back from your principal.....and I sent some e-mails back.  We are to meet for an IEP meeting on April 8....she allotted an entire 30 minutes to our meeting...which I propose will never be long enough and of course she scheduled it for when I pick you UP from school which means you will be present during that time.  I believe that was done on purpose.  I am going to prepare an itemized LIST of the things we need to address in the meeting AHEAD of time and express my concerns for sufficient time to discuss these issues and they better NOT try to come back and tell me they do NOT have the time to go over all these issues.  They MUST MAKE the time then.   BUT enough of that for now.......the ongoing FIGHT to get APPROPRIATE things in place for you to learn not only academically but socially continues.  I guess it never will go away or get any easier.....although I do become smarter and learn more ways of how to handle these things.  Here you are.....on one of your BEST days ever!  (you also got a souvenir Sunday when you found an old piece of a red light from one of the RR crossing signals.......you were delighted!  I love you Noah.....so very much!

 

Mommy

XOXOX

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Watch AUSTISM THE MUSICAL at the link below for free

http://www.hbo.com/docs/programs/autism/video/

Thursday, March 27, 2008

Dear Noah....a slight regression continues....

Noah's first artwork I have seen him bring home....something pertaining to Vincent Van Gogh's Starry Starry Night.  I have no idea what their assignment was but according to his scores he did very well.  P1080723

 

For the fourth day straight  I believe I have picked you up from school only to hear you had a bad afternoon.  Today you got into a pushing/shoving match with another boy in gym class....and while he started it and you ended it by pinching him......you both got sent to the principal's office.  

While in social studies class you got upset about something and the teacher felt you needed to go to the hallway to "calm down."  A good idea but he did not provide a chair for you or a desk and there was NO MONITORING of you while in the hallway.  He told you to sit on the floor.  NOTHING constructive was given to you to GUIDE you through calming down.....NO ADVANTAGE was taken of that moment to TEACH you something..like the CORRECT response out of you in a trying situation.   SO did you remain in the hallway like the teacher expected you to?  NO!!!  You did exactly what I have been warning them you might do.  YOU WANDERED off....left the hallway......went somewhere else entirely to sit down. 

You got upset with your aide this week and wrote on your paper you hated her.   I SEE RED FREAKIN flags all over the place. 

Today I saw the all too familiar zombie look on your face and body postures again.  You were very pale......and looked sad......almost mad too.  Like you had a headache but you did not.  It was all you could do to make it to my car......you could not even carry your backpack.  ALL these are signs you are being too stimulated at school.  TOO many things are happening to set you off....you do not appear to be receiving proper instructions on what to do in social situations when they arise....etc. 

I do not like many things happening here and not happening here.  I have asked for an IEP meeting and it has been canceled twice.  I was told last week it would be rescheduled again.  I am tired of waiting.  I have told the principal you will NOT be returning to school until we get these issues resolved and written up in your IEP and that they have to be followed.   I sent this e-mail to your staff tonight.  WHILE very long I think (hope) I made my point.

 

Dear Principal _______:

For about the 4th day now or more when I have picked Noah up from school I am finding out he has been into trouble for blurting things out, hitting another student, etc.  When I see him in the afternoon he is very pale and acts like his head hurts and he is super tired but of course he has no headache.  He looks withdrawn and sad...sometimes almost mad.  I recognize this "look" as a sign he has been too stimulated.......over stimulation causes Noah to act out......it also causes him to become basically a walking zombie for a period of time of recovery.  The duration of his recovery varies depending on the amount of stimulation and his body's response to it.  He has learned to recover a little quicker I think than he has in the past but this week I have noticed he is not bouncing back so easily.  I have to say this has been very disturbing to me.....because it is a sign of REGRESSION.....and while he is making progress......too much of this type of behavior if repeated on a consistent basis time and time again, does NO one any good.....especially Noah.  He will go further BACKWARDS instead of forwards.   This is also about the time of year he becomes very stressed.....almost like he has had his limit.  It is very touch and go with him.  He loves school and wants to come and be there...BUT at the same time he also is having a difficult time handling the entire day!

Another bigger concern of mine is the fact that Noah has been sent to the hallway for a "time out" or to "calm down" a few times this week.....WITHOUT a monitor.  Today he was sent to the hallway from Mr. Winner's class and there was not even a chair for him to sit on.  NO teacher monitored him.....no desk was there for him....and he was not given something constructive to work through to help him calm down.  I am FURIOUS about this.....because what happened?  Exactly what I have warned everyone about from the start.  Did Noah remain where he was supposed to remain?  NO.   He left the hallway....and wandered off.  I have a CALM DOWN book I can make a copy of for Noah to keep at school that he can be given to work through to CALM down when sent to the hall.  BUT HE BETTER NEVER be sent to the hallway ever again without a chair and a monitor.
I do not know what I have to do to express my concerns about this.  Noah has a reputation for wandering off in the past.  I do NOT want to get a phone call from the school staff one day saying Noah is MISSING and cannot be found and you have NO idea where he is!   There is NO excuse for this.  NONE.  NOT with an autistic child and one with an IEP and aide. 

I have said time and time again Noah needs to be monitored.  I don't mean part-time.  He needs an aide/COACH and monitor pretty much all the time.  NOT just someone to help explain things to him academically.....but also SOCIALLY.  WHAT IS and IS NOT acceptable behavior and WHY.  To coach him through standing in line........taking turns....all the stuff other kids his age already know.  Noah is not emotionally equivalent to the other 9-10 year olds in his class.  His emotional level is more along the lines of a 6-year old......and that is pushing it.   I have been told his aide is not just his personal aide but she has to split her time with other students.  Then I have to say the school needs to hire someone else to fill in for her time so she can be his full-time aide because he needs one.  With his disabilities listed on his IEP he is more than qualified for this and is allowed this.  The monies for this is also there. 

I have already decided to keep Noah home from school tomorrow Friday March 28.  He needs a break.  I am not going to stand by and watch all the hard work I have done with him over time deteriorate right before my eyes because he is constantly being thrown into situations where he is not yet able to handle them.  He does not understand CONCEPTS at all.....I think the staff already knows this.  He does NOT understand the WHYs of just about anything.   He has a very hard time understanding many things.  

I am not comfortable with having Noah return to school until we can get these issues resolved.  I asked for an IEP meeting to address my concerns which are growing instead of being alleviated.  I understand we have had to cancel because of the weather and I think Noah was sick one time.  BUT we need to get that rescheduled ASAP.  However....once issues are WRITTEN down and included in his IEP (if they are)...they NEED TO BE FOLLOWED.  The IEP does not exist for my peace of mind, only to be filed away in a filing cabinet to LOOK like everyone covered their butts and followed proper protocol.  The special needs are written down to HELP Noah succeed and do the best he can.  We must all implement what is in the IEP. 

Noah is to have a scribe for those times when there is a lot of writing required in the classroom......tests, quizzes and such.  We really need to ensure this continues to happen and he is not left struggling to write answers out and becoming so frustrated with the action of attempting the writing itself he cannot answer the questions at all or complete an assignment in the classroom.  He brings home a tremendous amount of homework......and with limited time to do it at home becomes frustrated even more then.  It is becoming a little too much for him. 

I have asked for help with writing......something he could use to TYPE answers on......etc.  NOTHING has been done about this that I know of.  I do know there are tools out there a child can use in the classroom that has difficulty with writing...so they can type their answers and responses in order to KEEP UP with the rest of the class.   Noah has come a long way with writing and I still want him to learn.....but it is becoming frustrating for him when it comes to classroom assignments and homework assignments if he has to do all that writing. 

Noah should NEVER be allowed to be in ANY classroom with other children UNattended.  NOT EVER.  You are asking for trouble.  It only takes a second for someone to even look at him the wrong way and he can be off and slamming the kid up against the lockers.   I believe this situation has changed recently and now the kids are finally MONITORED during indoor recess inside each specific classroom.  THAT IS a HUGE concern of mine.  INDOOR recess without a teacher in the classroom?  TWO walking around in the halls for the ENTIRE school is not proper monitoring of children.  There is no way one can know what is or is not going on in the classroom.

ALSO many times when Noah does get into trouble.....like today for instance in the gym......while NOT an excuse for his behavior....he also did NOT start the pushing and shoving match.  However Noah many times FAILS to tell a teacher.......or cannot get out HIS story or what happened quick enough for  an adult or teacher.  He does not think to TELL a teacher "HEY someone is PUSHING ME" first........he reacts first and does not ever mention it to the teacher.  I have told him for YEARS to tell the teacher if someone is pushing him or being mean to him.  He never remembers to do that.  SO he is the one that usually gets caught and then blamed for the entire thing.  Today Alex or Alec pushed him first Noah said.....and then they pushed each other back and forth and finally Noah PINCHED him......and then Alex told the gym teacher.  Noah should have told the gym teacher at the start "HEY ALEX is  pushing me!"...But again MY question is WHERE WAS the teacher during all this????  It sounds like he was right there as the kids were in line for some event in the gym.   WHY DID THIS ALL go un-noticed by the teacher and why did he not tell the kids to stop it?  WHY allow things to escalate?

I am sorry this is so long but I am very upset.  This all reminds me of how things used to be in the past for Noah.  Only multiply the behavior you have seen recently by about 50 x and you can get an idea of where he has come from. 

So we have to fix this ...or at least try.  We have to make some serious changes in his IEP.  He HAS to have a monitor.  He is not ready to be alone anywhere.   I am NOT going to allow him to WALK on any walking field trips unless someone can guarantee me he will have one supervisor solely for him alone all the time while out.  IF NOT......there is NO way he can be allowed to go.  I heard during the choir practice at Memorial Hall that the kids were to have PLENTY of adult supervision....and yet while there one little boy was grabbed by some unknown man.  I cannot tell you how this made me feel to hear this.  Noah was sick and missed it.  I am thankful.  Because had he been there and was not being monitored he could have easily been coerced to go somewhere with someone he should not have. 

I also do not like dropping Noah off in the morning outside school and just HOPING and praying he makes it to his class. I HAVE NO WAY OF KNOWING if he even gets to where he needs to go in the mornings.  I DO NOT LIKE THIS.  This is not acceptable.   Someone needs to walk him in.  If that be me I am fine with that.  I can walk him in.  I can bring him in the mornings and take him to his class...something.  Or an aide can come and meet us.  BUT to always just think he will do what he is expected to do is flat out wrong.  NONE of us can just assume that.   Today with him leaving the hall where he was supposed to remain again confirmed this to me.  Someone brings him to me in the afternoons after school.  That is great.   I have been bringing him to school a little later in the mornings to AVOID line up outside......as I have watched in horror all too many times kids pushing and shoving each other around.......all time bombs waiting to go off for Noah.  If someone accidentally pushes him or pushes him on purpose........there is no guarantee he will not lose it.  Same for him just observing others horsing around.  He will mimic it.  Again the monitors.......where are they?   I have seen some now.......since we talked about this the last time....they are there.  More than before.  Rarely however do they stop the kids from horsing around. 
Outdoor recess time I have no idea what happens.  When I take Noah to a park for example I DO NOT let him wander off and play with other kids alone.  I am along the sidelines.......watching.........ready to intervene and redirect when needed.  I already know this is not likely happening on the school grounds. 

SO as you can tell I have many concerns.  Noah seems to be doing poorly in the classroom...and we need to figure out why and fix that.  I am not in the classroom so I have no idea.  To me however I think it sounds like he is getting over stimulated and has no way to compensate for that during the day.  It sounds like he is getting frustrated.  Sending him to the hall to calm down can work if someone is there to guide him through calming down....and monitoring him.  To keep him on track.  However isolating him solely because he continues to disrupt a class and that removes the disruption from the room but he has nothing constructive to do in the hallway does no one any good.  Especially Noah. 

SO please talk and let us set up a new day and time for this IEP meeting so we can make some revisions and updates and try this again. 

Again I will call in the morning but I am not sending Noah to school on Friday March 28.  I can already tell tonight  he will not have a good day tomorrow either.  I am not setting him up for failure or expecting the worst.  I just have enough firsthand experience to KNOW how things are going to be based on his appearance and behaviors even here at home.  I would love to be able to trust him to always do what he is expected to do.  However I learned a long time ago he can unfortunately rarely be placed in that position and always do what is expected of him.  He has to have a monitor.  Have I said that enough?  Because I don't think I can say it enough or express how serious this can be without a monitor. 

Let me know when a good date and time is.....I can flex my schedule accordingly.

Sincerely,

 

________________

 

Noah I am determined to do everything I can for you to become the most lovable, caring young man possible and one who can learn how to handle himself in most situations with greater ease.   I will not stand by and allow you to go backwards because of being steered in an improper direction.  I will get you back on track....one way or another. 

I love you very much Noah.  Forever I will.

Mommy

XOXOXOX

Tuesday, March 25, 2008

Dear Noah: a trying past few days....

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On Monday the day after Easter I knew you might have a harder time because it was the day after a very over-stimulated day. You had an attitude and looked like a "walking zombie," sort of tired looking, not really present but somewhere else. When I tried to bring you back into the moment you got pretty snotty and withdrawn.

You had a hard time at school. Your friend Travis had returned from a vacation and you were happy to see him at recess. BUT you also apparently did not want to share him with anyone else so when another little boy came up to play with Travis too, you got upset. Now apparently from what the teachers have said, this is also a boy who can cause some problems so their first thoughts were you were trying to protect Travis. You apparently decided to kick the boy in his crotch. The boy fell to the ground. NOT because you were protecting Travis but because you did NOT want to SHARE Travis with anyone else. Of course you got into trouble...the teachers and staff handled it correctly explaining to you that was not the proper response and why. You apparently handled it like an adult they said and took your punishment well, etc. They went over what you SHOULD have done so hopefully next time you will stop and THINK about what you should do and choose the correct response rather than just being impulsive and lashing out.

To top off that day you went to your REWARD party for successfully completing this quarter's Monday after school social skills classes. The counselor there had promised YOU to make you special Pillsbury Chocolate Chip cookies for YOUR special treat. The 2 other kids who earned attendance to the party wanted ice cream. When I picked you up from school you started crying, already worried this counselor would not come through for you and do what she promised and NOT have the correct cookies. I could not blame you as this has happened so many times in the past. SO I ran you out to grab a quick bite to eat from Wendy's. While sitting in the car eating and waiting till the party was to start I asked you what you would do if the counselor did not make the cookies she promised and tried to substitute something else (trying to prepare you for the worst case scenario and coach you on a good response and outcome). You said you did not know. I suggested you just drink some water or something else they might have to drink and focus more on any ACTIVITIES they might have for you 3 to do. I went in with you and sure enough there on the table INSTEAD of the Pillsbury cookies was a bag of Chips Ahoy Chocolate Chip cookies and Oreos. I saw you glance over there and immediately looked like you could have cried but you didn't. You did look totally disappointed and like you wanted to say something but you did not. I stood there and said to you " I know....I know.....but it will be okay....you have something in your tummy now to hold you over and when we get home I will give you your cookies and some milk." I left watching you stand off to the side by the windows not really knowing what to do. I could have screamed at this counselor...who obviously does not have a clue when it comes to autistics and their true NEED for routine and sameness and someone to KEEP THEIR FREAKIN' word when they make a promise. I am so tired of people thinking they can easily SUBSTITUTE something else for you and you will just easily accept it or eat it or welcome it. It just does not work that way with you. In the past this situation would have ended in a horrible meltdown by you so you have improved tremendously. Part of this I am sure is just growing up......part is learning the proper responses in specific social situations. How to handle disappoint appropriately...etc. This time you did as I suggested. You drank water....and I am sure felt a bit singled out again and not really part of the group......but you focused on the games you all played which this time you got to actually play POOL on a real pool table which you loved!

When I picked you up however, you acted very odd. Very down and semi-depressed. I asked you how it made you feel to see the wrong cookies on the table. You said it made you feel a little sad...but then went on to talk about how great it was playing pool and how you wanted a pool table of your own. You were pretty withdrawn the rest of the night and homework was a bear.

The last 2 mornings for breakfast you wanted your usual Ore-Ida hashbrowns. You smell them and say they are different. You taste them and then cannot eat them. I do admit they do look different, smell different and even taste different. They are flatter and are mushy and not crisp when you get them out of the oven. I imagine somewhere along the way they thawed out and then the stores refroze them. I had to toss 2-1/2 bags in the trash today because you refuse to eat them. While this is extremely frustrating sometimes because now that is ONE less thing you will probably even try to eat for awhile...I also understand it.

Tonight I myself am frustrated. So much crap. I am tired of people saying they are going to do something and then NOT do it. Especially when it comes to you. That is just wrong no matter how you try to look at it.

I love you very much Noah.

Mommy

XOXOX

Monday, March 24, 2008

Dear Noah......Easter morning 2008

P1080432

 

You got up super early to see if the Easter bunny brought you anything....and you were thrilled to find a GIANT basket on the kitchen table filled with exactly what you were hoping for.....all your Sonic the Hedgehog PLUSHIES!   Since you were up before sunrise I grabbed my Bible and we read the story of the empty tomb to start our Easter morning.   I will post more later....but just to let everyone know...we had a very nice Easter.

I love you Noah!

Mommy

XOXOX

Saturday, March 22, 2008

Dear Noah....

You have been doing pretty well lately although you have also been having a lot more episodes of what I would call "an attitude!" I know some of this is your age.....and unfortunately a lot has to do with the other kids you are around during the daytime. I know in our entire lives we cannot always pick and choose who we might have in our living environment or world.....but then again I think yes we can. The reality however is we can control it to a point .....but there will be times you may be around others (what I might call "less desirables") who might talk in appropriate manners and do inappropriate things....all things you have to learn NOT to mimic just because they are doing it and you think certain words might sound funny to repeat (not understanding what some might actually mean), etc. I know this is also all just part of growing up.

Distinguishing KILLING in a PC Game from KILLING and death in real life....the F-word.....being snotty versus showing respect......all things you are learning about now.

I have to admit the job was much easier for me and I was able to mold you more perfectly into being a very nice, well-mannered, polite, loving, respectful child when I homeschooled you. Because I was more easily able to monitor those you were around here at home or in your environment.

We parents of autistic children always get slammed with pressures of our kids needing the SOCIALIZATION aspect of life...and to be honest......homeschooled kids can get great socialization.

I understand one day you will be in the BIG world and it is also best to prepare you in how to handle that type of exposure with those types of people and situations......but sometimes with your emotional level being only around the age of 6......I think 9 years of age with that low emotional level is sometimes too early to try shoving you into the world for exposure in all situations. You just do not really understand many of them.

I know some of you readers out there will say to yourselves that this is something all kids go through and it is part of growing up. I understand that and agree. However with an autistic child they do not so easily grasp the CONCEPTS of these issues. It takes constant repetition of enacting the same situation over and over for them to finally hopefully one day have their lightbulb moment and GET IT....something most neurotypical children grasp much easier and quicker. It seems instinctive for them but not for an autistic child.

So as usual we do have our work cut out for us but I know you will do well. I do constantly wonder however if you would not be doing better homeschooled again than you are now. I don't know. I want a mix sort of in between for you I think.

I love you.......here are some recent PC drawings you did of your favorite Sonic the Hedgehog characters.






And as you can tell about the last one......you do NOT understand the concept of KILLING and all it means very well at all. CLICK ON PHOTOS TO ENLARGE

sigh.....

I love you Noah......

Mommy
XOXOXOX

Wednesday, March 19, 2008

my first day of school...

Did you know 90% of flu vaccines contain mercury???

Did you know the flu vaccine contains mercury?  At least 90% of them do. 

 

A recent survey revealed that the overwhelming majority of Americans were unaware that most flu shots contain mercury and that they would refuse a shot with mercury. (See page two for the key findings.)


"More than 75 percent of Americans feel a mercury-containing flu shot should not be given to a pregnant woman or a child, despite recommendations from medical authorities to do just that," said Lisa Handley, a founding parent of PutChildrenFirst.org. Her own son, Jamison, had an adverse reaction to a flu shot containing mercury in 2003. "I know firsthand how life-changing a flu shot with mercury can be, since our son began his regression into autism after his flu shot."

In 1999, government agencies called for the removal of Thimerosal, the mercury-based preservative in most vaccines. Then, in 2001, the American Academy of Pediatrics stated that, "mercury in all of its forms is toxic to the fetus and children, and efforts should be made to reduce exposure to the extent possible to pregnant women and children as well as the general population." Despite these actions, 90 percent of this season's flu vaccines still contain Thimerosal, and the Centers for Disease Control and Prevention (CDC) are recommending the vaccine for pregnant women and children six months and older.


These recommendations come on the heels of recent studies that reveal new findings about the neurological effects of mercury and question the effectiveness of flu shots. Mercury, the second most toxic element after plutonium, is estimated to be 500 to 1,000 times more toxic than lead.


"A common myth is that Thimerosal is added to vaccines in 'trace' amounts," said Mike Wagnitz, who has over 20 years experience evaluating materials for mercury and is employed as a senior chemist with the University of Wisconsin. "The concentration of mercury in a multi-dose flu vaccine vial is 50,000 parts per billion. To put this in perspective, drinking water cannot exceed 2 parts per billion of mercury, and waste is considered hazardous if it has only 200 parts per billion. Is it really safe then to inject pregnant women, newborns, and infants with levels of mercury 250 times higher than what is legally classified as hazardous waste?"


Agreeing that mercury has no place in vaccines, seven states have passed Thimerosal bans in recent years: California, Delaware, Illinois, Iowa, Missouri, New York, and Washington. California is the first to have implemented the ban for the current flu season, but Governor Schwarzenegger temporarily overturned the ban on November 2 after a shortage of mercury-free flu shots led to pressure from state medical groups.


"Parents need to be informed about all aspects of their children's healthcare, including vaccines," said Deirdre Imus, President and founder of The Deirdre Imus Environmental Center for Pediatric Oncology at Hackensack University Medical Center and co-founder and co-director, with husband Don Imus, of The Imus Cattle Ranch for Kids with Cancer. "It doesn't make common sense to inject Thimerosal, a known neurotoxin, into the bloodstream of our babies."


This fall, two studies were published in leading medical journals admitting that limited data exists to support the effectiveness of flu shots. One study, in the Journal of the American Medical Association, noted that, "there is scant data on the efficacy and effectiveness of influenza vaccine in young children."
"So, not only is the flu shot's effectiveness in doubt, there is plenty of evidence revealing the devastating effects of mercury," said J.B. Handley, Lisa's husband and a founder of PutChildrenFirst.org. "Our health authorities are not being forthcoming about mercury's presence in shots and its toxicity to the nervous system. Our children deserve better."


"With everything we know about the dangers of mercury and the havoc it can wreak on young, developing brains, there is no excuse for any vaccine to contain mercury," said Lyn Redwood, RN, MSN, President of SafeMinds, a nonprofit committed to ending mercury-induced neurological disorders. "The survey reveals that Americans are overwhelmingly in the dark about what is in most flu shots. They do not want a known neurotoxin injected into their children, and they believe Congress and medical professionals must be more vigilant about keeping vaccines safe and mercury-free."


Key findings from the poll, conducted October 27-30 by Zogby International, include:
* 74 percent of respondents are unaware that most flu shots contain    mercury. 
* After learning that mercury is an ingredient, 74 percent are less likely    to get a flu shot and 86 percent of parents say they are less likely to    get their child a flu shot. 
* 78 percent of respondents believe mercury should not be an ingredient in flu shots given to pregnant women and children. 
* 73 percent believe the government should warn pregnant women not to get a flu shot if it contains mercury. 
* More than 70 percent agree that Congress, doctors and medical groups (e.g., the American Academy of Pediatrics) should take responsibility for ensuring that vaccines do not contain mercury. 
* 80 percent of respondents and 82 percent of parents are willing to pay the $2.50 additional cost for a mercury-free flu shot.


PutChildrenFirst.org is a parent-led initiative advocating vaccine safety and a division of Generation Rescue, a nonprofit organization providing parents with information on the relationship between mercury and its relationship to Autism Spectrum Disorders. Generation Rescue gives parents information to make informed decisions about treatment options and physicians. Generation Rescue is a 501(c)(3) nonprofit founded in 2005.

Dear Noah: You are feeling better....

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You have had a rough time of it lately.  I took you back to the ER/After Hours Clinic and you had no fever but swollen neck glands.  Throat was fine....chest was clear....but the chest x-ray looked the same as before.  However the radiologist felt the chest x-ray was normal...while the doctor thought it had bilateral early infiltrates.  So if the doctor is correct then the chest x-ray is still the same, one would have to believe you have not yet completely cleared the pneumonia.   You have nose/sinus issues so they put you on a 10-day antibiotic course....a different kind.   As of yesterday 2 days into the course I could tell you were feeling better.  You were staying home per their instructions and as the day progressed  you became more yourself. 

Today you go back to school.  This was to be Spring break the week you had off from school but because of all the snow days, you will have to make them up so you all have to attend school this week.  NOW they even added GOOD FRIDAY back to the list of days you have to attend.  I think that is pretty crappy.....and now I find out they will allow the students to go home 2 hours early on that day.   Hum.......

Otherwise the birthday parties on Sunday we attended for your cousin and aunt went very well and we all had a great time. I think part of the reason you were so worn out on Monday was all the over-stimulation from Sunday. 

Anyway....I have to get back to work right now.  You are still sleeping....and I love you!  By the way.....you were a trip in the ER.....talking very maturely to the doctor and describing your symptoms yourself....more later.

Love you! 

Mommy

XOXOXO

Monday, March 17, 2008

Another very disturbing reality.....

This young man has Asperger Syndrome, was lied to by police, and not provided his rights as a person with a disability, as a juvenile, nor as a suspect.  The videos of this interrogation are hard to watch, but this is something the family has shared to allow others to see what damage can be caused by incidents of this nature. 

The videos are available as well as this on the Detroit Free Press website.  It is also interesting to see how the public comments to this story.

The family in this case will now try to pick up the pieces of their lives and move forward.  But the harm caused to everyone involved will take many years to repair.  I am not personally saying that this case should not have gone uninvestigated.  However it should be learned from and people should use this as an example of what can happen as well of how appropriate protocol and understanding of ASD needs to occur.

You can go here to watch the video clips....again this is very disturbing and shows how easily our children with autism can be manipulated.....in many ways...good or bad....and how some so-called professionals in reading body language and behavior like this so-called policeman doing the interrogation.....need to take a course in AUTISTIC characteristics and behavior..because he obviously has no clue.  The entire way this was handled was beyond poor.....and should be scary to us all!

 

http://www.freep.com/apps/pbcs.dll/article?AID=/20080316/NEWS03/80316001

 

Meanwhile Noah's meeting was canceled today because he came home from school early.....sick.  I am going to have to take him to the After Hours Clinic and have him checked out again.

Thursday, March 13, 2008

PLEASE go to the link below to SIGN PETITION to help get NATE back home!

I cannot stress how important it is we all sit up and take a serious look at what is happening all around us! READ the article prior to this post. THEN go to this web site:

NATE

to read more about NATE...see a photo of him and SIGN A PETITION to help get him back home.

THIS is horrendous what is being done to this child....please go and check it out for yourself and read the additional stories there and his background......etc. THEN SIGN the petition.

WHERE THE HELL is Oprah or the big shots when you need them????

You can write to Oprah on her page and ask her to check into the story for a possible show for MEDIA attention .....by going here:

OPRAH

or you can write to the governor of California at:

Governor Arnold Schwarzenegger
State Capitol Building
Sacramento, CA 95814
Phone: 916-445-2841
Fax: 916-558-3160 ( new number )

GOV OF CA

Disturbing article...

Nate Tseglin, a 17-year-old autistic boy, was removed from his home and placed in a state-run mental institution because Child Protective Services disagreed with his parents’ treatment choices.

A teacher called CPS after seeing self-inflicted scratches on Nate's body and complained about the doctor-approved arm restraints used by Nate’s parents to keep him from hurting himself. Soon the Tseglins found themselves at loggerheads with the government over Nate's proper treatment.

The parents are opposed to the use of psychotropic drugs and argue that Nate has had strong negative reactions to them. They have had success, however, with an alternative, holistic approach that focuses on diet and psychiatric counseling. CPS disagreed with the treatment and forcibly removed the boy from his home.

After he ran away from the group home where he was initially placed, the government transferred Nate to a mental hospital. The Tseglins say the drugs the hospital gave Nate caused him to have a grand mal seizure, and his health has continued to deteriorate. When the Tseglins visited Nate over the summer, they found his face swollen, and he faded in and out of consciousness and suffered from convulsions.

The Tseglins claim Child Protective Services has told them they have the “wrong set of beliefs” and even threatened to force them to undergo a court-ordered psychological evaluation.

Dr. Mercola says:

More and more we’re seeing courts siding with misguided government “officials” in closed family-court proceedings. Parents are increasingly cut out of the decision-making process about what’s in their child’s best interest with regards to their health.

The fact that a teenager – who’s only “crime” is that he’s autistic, and whose parents decided that drugs were ineffective in his treatment – can be ripped from his family and locked up in an institution that houses the criminally insane should be a wake-up call for parents everywhere. There’s something seriously wrong going on here.

The state claims that it knows best; that forced drugging in a closed institution is the way to “treat” this autistic child, despite the fact that he has loving parents who have been willing to treat him through alternative, non-toxic, non-lethal means at home, for years.

The state claims that it knows best; that forced drugging in a closed institution is the way to “treat” this autistic child, despite the fact that he has loving parents who have been willing to treat him through alternative, non-toxic, non-lethal means at home, for years.

The United States already has the highest incarceration rate in the world. Are we also looking at a future of government-run psychiatric institutions filled to the brim with autistic children whose parents refuse to abide by drug company politics?

It’s a heartbreaking tragedy that children like Nate are being forcibly medicated into a stupor with powerful poisons -- all of which will have far-reaching, long-term ramifications. These medicines may provide some benefit in some extreme cases where an actual mental disorder exists. However, these drugs -- in no way, shape, or form -- even begin to treat the foundational cause of your child’s problem.

This article does not specify which medications are given to Nate to “treat” his autistic behavioral problems. However, throwing antipsychotic drugs -- particularly off-label concoctions meant for adults -- at kids is common practice, and one of the worst abuses of conventional medicine.

AND what one obviously ignorant person had to say:

What a timely article....

I just returned from a group dinner at a restaraunt. My wife was seated next to an autistic guy who I later learned was 39 years old. Part way through dinner he threw his (soft) drink glass, slit his wrist with a dinner knife, bit his thumb to bleeding, smeared blood all over, made me fear for the safety of my wife, and threatened me with both bodily harm and legal process. I was seated across the table, and could not place myself between him and her. After all this his "keeper" returned to the table and helped him leave the restaurant.

As far as I'm concerned, they can lock them all up and throw away the key. The parent's should be thankful they don't have to take them into civilized society, and get one with their lives.

I can understand the man above being concerned as I would be too....but....his rash generalization making ALL autistics equal to this particular man he had experiences with in this restaurant is wrong. Not all autistics are the same and not all are like this man above. Who is going to be in charge of determining who does or does not get locked up or is allowed in our society?

What if one day the man who made this comment above does something someone else does not like and they think he should be locked up because they clump him into one specific category of characteristics or behaviors? Do you suppose his opinions would change?

Monday, March 10, 2008

Dear Noah......I am not so sure I am doing the right thing for you education-wise by letting you go to a public school and not homeschool you....

I am not a big fan of some STATE mandated tests......especially for a child with autism.....however.....Noah has taken some since starting a public school and was ABOVE his grade....in the fall of 2007 at which time he scored 412....which was only 3 points less than being at the ACCELERATED level. STATEWIDE.


They are gearing up for another Ohio Achievement test.....and he did the same READING achievement test again.....he got a D- this time??????????????
WTF>?>?>?>?>?>?>?? (sorry)


I am soooooo pissed off.....My conference with the teachers has been postponed till March 17 because of the weather last Friday. I cannot wait to get my ass in there and demand to know WHAT the hell is happening here?


I mean holy shit......obviously HELLO something is wrong for him to drop that drastically in that period of time? From October till March????????


I honestly do not feel like he is being taught adequately at the school. I think he is learning SOME things but not perhaps in a way he can easily understand. I know for tests too he is supposed to have a SCRIBE.....someone to help him FILL OUT his answers. On this test there were THREE that had NOTHING there......one where he started to fill it out but never finished it. WHERE THE HELL IS THE SCRIBE???????? He has a hard time formulating his thoughts let alone writing them down onto paper!!!!!!! I mean shit......he just learned to write pretty well this year!!!!


I don't want him to fall behind and/or be pussy-footed around with.......and be pushed through the school system to just get him through but he has not learned things....etc. I also don't want him to be perpetually held back year after year when it is not appropriate!


This is a kid who CAN read......but sometimes his comprehension is screwy when it comes to abstract thinking. WHAT are they doing about that if anything? I get the feeling he is just stuck there and expected to follow along and if he cannot....well then either I help him here or he is screwed!


I need to start working with him here at home again. I KNEW I should never have stopped it completely. I am not so sure PUBLIC school will really be the answer for Noah. I can see some positives.....but I don't know still about so many other things.


YES I need to vent. I am pissed. I have been telling the TEACHERS for some time now something is WRONG if he cannot do so well in class.....yet he gets A's in all his subjects????????? even in reading? EXPLAIN the achievement test results then please? I don't get it.

IT IS NEVER going to be a TRUE measurement of what NOAH knows.....so how do we get around that? They use that freakin' test to decide on whether he goes to grade 4 or needs summer school...etc. IF school is done right with Noah to begin with he can learn so much so fast.......less than HALF a day spent on school work. I also don't want to see everything I worked so hard on with Noah over the years here at home......to be shot to hell and him fall way behind when he was always ahead. I was partially afraid of this type of thing happening if I allowed him to go to a public school because let's be honest. ONE ON ONE is just BETTER than ONE to 20 or 25! The teachers in the public schools do NOT have the extra TIME it takes to make sure Noah learns in the manner befitting him!


I just want to scream!!!!!!!!!!

Saturday, March 08, 2008

Ohio Blizzard, Darke County, March 7-8, 2008

If you would like to see MORE photos of our blizzard you can go check out my photography blog at PHOTOGRAPHYFORDUMMIES

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Friday, March 07, 2008

Dear Noah......

it is snowing like crazy here! I have shoveled once but will have to do it again and again to keep ahead of this storm! We are going to get it good! They released you 2 hours early from school because of the snow. The roads were horrible up here already then!

School was on LOCK down I found out earlier this morning because a local BANK WAS ROBBED!! That makes me feel like this small-town atmosphere that is like stepping back into the good ole' days may not be all that innocent and pure after all! I was going to go pick you up early today but then decided to hold off....I doubt I would have gotten in if I had because of the lock down.

You won a CERTIFICATE for a SMOOTHIE from your teacher for being the STUDENT OF THE MONTH for completing the most homework and always on time!

AND......you amazed me with THIS art work YOU DID all by yourself WITH A MOUSE on YOUR COMPUTER! You wanted to make your own Wheel of Fortune WHEEL but smaller...only 16 wedges you said instead of 24. I did not even know it had 24 wedges but I am not surprised YOU knew this.

SO HERE is your art work which to me is incredible because YOU USED YOUR MOUSE FOR THE ENTIRE THING! Lettering, colors, everything! Using a mouse like that is very very difficult!

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You are amazing....

and I love you!

Mommy
XOXOX

Noah.......a NEW F-word......


You had a difficult day in school yesterday. There were too many changes in your routine and the weather power outages and all the ice and limbs down still had you worried and I guess you talked about it almost non-stop at school. One of your teachers was not there on her normal schedule and just all these little things added up to sort of set you over your edge.

I guess in your homeroom you started falling OUT of your chair on purpose over and over so the teacher finally told you to move your tag from the green zone to the yellow zone. WHICH you did......but you then STOMPED your way back to the chair where you apparently then dropped to the floor ......had a BIG hissy fit......all the while saying the F-WORD!!!!!!!!

SO your one teacher since she heard this decided to take you aside.....(she is your special helper teacher).....and she told you she was going to give you a NEW F-word to use at school. SO.......your NEW F-word you can use at school is FIDDLESTICKS!

When I picked you up I found out about all this.....by then you were very calm yet hyper.....and excitable. I had things in the car ready to go see Grandma C. and you yelled that cookies and milk were NOT going to be enough to hold you over because you were STARVING! Maybe you are playing catch up from not eating much with the pneumonia or are going through a growth spurt....but you cannot seem to eat enough the last few days.

We had wonderful visit at grandma C.'s and you had determined ahead of time we needed to stay until 7;30 because you wanted to watch WHEEL OF FORTUNE and that is when I found out you think Vanna White is "HOT!" Yep...you said you had watched some video clips of Wheel Of Fortune on You Tube and you saw Vanna and she was HOT! You also saw her back in 1985 on a clip and you said she was MUCH younger then but still very hot!

When I asked you if you know what HOT meant you said "I don't know" even though you sounded like you knew because you used it appropriately in the sentences you were saying and with MUCH enthusiasm. I explained then what HOT meant and you just smiled....REALLY BIG.. When I asked "so you really like Vanna White then huh?" " and think she is really pretty even now?" ....at first you tried to deny it but then said, "well ...okay yeah." AND hid your face under a pillow.

Another crush big time! You seemed surprised I KNEW her last name too.

You are something. Such a cutie.


I love you! I have a meeting with your teachers today....go over some IEP issues and classroom concerns I had. Today is "wear your favorite hat to school day" in honor of the Cat In the Hat reading week celebration they are doing at your school. SO I imagine you will choose your Domino's pizza ball cap. Hope you don't lose it!

We have a dual birthday party to go to Sunday....but we are also under a winter storm warning with up to 10 inches of snow expected and 2 foot drifts! So we will see I guess how the weather holds out. We just recovered from a severe ice storm and the area looks like a tornado went through with all the trees, power lines and branches everywhere. ENTIRE TREES broken off..down to the roots....HUGE trees....it is unreal.

ANYway you are keeping the daily countdown for the parties....I would hate to think we won't be able to go or they will have to postpone it due to weather!

I love you my little man...

Mommy
XOXOX

Tuesday, March 04, 2008

Dear Noah....you got out 1 hour early today from school due to an ice storm!

We are currently under a Level 3 weather emergency.......winter storm warning......and we have so much ice on everything we have lost power once already. We are just staying put and playing games and sitting by candlelight when the power went out.

I am concerned because your cough is starting all over again like before. I will have to take you back to the clinic to be checked. Your pneumonia may take awhile to totally clear but you are feeling better but tire out very quick.

Here are a few pics we took through the windows when the ice was coming down hard, fast and furious.

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I love you Noah! School is already on a 2-hour delay but I imagine they will have to end up canceling if things do not improve......especially if we are under a level 3 snow emergency. DUH....

Mommy
XOXOX

Sunday, March 02, 2008

Dear Noah...

You are much better than you were last week this time. You are now only rarely coughing....and you are very antsy and wanting to get out of the house. Today we will do just that.

I love you and am thankful you are feeling so much better!

Mommy
XOXOX