Help

[Guest guest]

I found this article at: http://www.drkaslow.com/html/pyroluria.html

PYROLURIA

Pyroluria is a genetically determined chemical imbalance involving an abnormality in hemoglobin synthesis. Hemoglobin is the protein that holds iron in the red blood cell. Individuals with this disorder produce too much of a byproduct of hemoglobin synthesis called "kryptopyrrole" (KP) or "hemepyrrole." Kryptopyrrole has no known function in the body, and is excreted in urine.

Kryptopyrrole has binds to pyridoxine (vitamin B6) and zinc and makes them unavailable for their important roles of co-factors in enzymes and metabolism. These essential nutrients when bound to kryptopyrrole are removed from the bloodstream and excreted into the urine as pyrroles. Arachidonic acid (an omega-6 fatty acid) is also deficient.

The effect of pyroluria can have a mild, moderate, or severe depending on the severity of the imbalance. Most individuals show symptoms of zinc and/or B6 deficiencies, which include poor stress control, nervousness, anxiety, mood swings, severe inner tension, episodic anger (an explosive temper), poor short-term memory and depression. Most pyrolurics exhibit at least two of these problems. These individuals cannot efficiently create serotonin (a neurotransmitter that reduces anxiety and depression) since vitamin B6 is an important factor in the last step of its synthesis. Many of these persons appear to benefit from SSRI medications such as Prozac, Paxil, Zoloft, Celexa, etc. However, as with all mind-altering drugs, side effects occur and the true cause of the mental difficulties remains uncorrected. In addition these individuals often have frequent infections and are often identified by their inability to tan, poor dream recall, abnormal fat distribution, and sensitivity to light and sound. As you can imagine an SSRI will not correct these metabolic effects. More healthful benefits may be achieved by giving the appropriate supporting nutrients.

Pyroluria is detected by chemical analysis of the abnormal pyroles in urine detectable as a purple (on testing paper) metabolite in called "the mauve factor." Most persons have less than 10mcg of KP per deciliter. Persons with 10-20 mcg/dl are considered "borderline" pyroluric and may benefit from treatment. Persons with levels above 20 mcg/dl are considered to have pyroluria, especially if the above symptoms are present. The chemical analysis for KP is difficult due to the tendency for this chemical to decompose. Sometimes it is necessary to repeat the urine test to properly determine the level of KP being excreted. To make the initial diagnosis, no vitamins or minerals should be taken for two days before the urine is collected (This is to avoid false negative results). The specimen should be handled properly as well - collected and frozen immediately and protected from any light by being placed in aluminum foil. A repeat test to determine if the condition has been improved may be helpful.

People with mild-moderate pyroluria usually have a fairly rapid response to treatment if no other chemical imbalances are present. People with severe pyroluria usually require several weeks before progress is seen and improvement may be gradual over 3 - 12 months. Features of pyroluria usually recur within 2 - 4 weeks if the nutritional program is stopped.

Pyroluria is managed in part by restoring vitamin B6 and zinc. The type of replacement therapy is very important as zinc must be provided in an efficiently absorbed form. Vitamin B6 is also available in several forms. Both zinc and B6 supplementation need to be directed by the doctor as too much can be toxic, use of the wrong form will be ineffective, and avoiding competing minerals and supplements may be necessary. Other nutrients may assist in pyroluria include niacinamide, pantothenic acid, manganese, vitamins C and E, omega-6 fatty acids and cysteine. Food sources and nutritional supplements containing copper and red/yellow food dyes should be avoided.

Because pyrolurics are stress intolerant, they seem to be especially vulnerable to cumulative stress over many days. For example, parents of a pyroluric child should use discipline that is "short and sweet" rather than "long and lingering." It is not unexpected that pyroluric patients are prone to relapses, especially during illness, injury, or emotional stress.

Re: Help

Need an online copy of the second Wall Steet Journal Article featuring Tim Buie, I have print copies only and only downloaded the first article to my files.

or any other help for this Mom

thanks

Hello Everyone,> This inquiry is for a 3y/o nv autistic boy who has really started to really try to hurt himself(alot of banging his head on the floor,throwing himself around)and trying to hurt others.He is in the hospital w/mom and it does not seem that the Dr's are looking for physical causes for this.I remember another child who became violent suddenly and someone?mentioned pyrolia(probably spelled wrong ,sorry)> would someone know ,or have a reference I can share with her about what might be causing this> Thank you> theresa

Discover Stay in touch with email, IM, photo sharing & more. Check it out!

[Guest guest]

Thanks Penny, I think I may have to bread down and buy something as these tow have been dificult through the library!

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@...

__________________________________________________

[Guest guest]

Penny,

Do you have the 2005 Oasis Guide or the 2001?

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@...

__________________________________________________

[Guest guest]

I highly recomend Can I Tell You About Asperger Syndrome?!!

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@...

__________________________________________________

[Guest guest]

Can I tell you About Asperger Syndrome is great. I have it and am giving it to my sons 5th grade teacher to share with his class at the beginning of 5th grade. It is absolutely perfect for kids between the ages of about 7 and up. I made copies of it and handed them out to my family. Aunts, Uncles, cousins, grandparents. They were amazed that a childrens book could identify AS in such a remarkable way and yet make it understandable to the young. GET THE BOOK... You wont be sorry

in Lancaster, CAPenny <smadaynnep@...> wrote:

Charlotte,

I have the 2005 Oasis guide - I got it from Amazon where it is only $18.15

Less then 100 pages to go. As I was reading section one the general Asperger's information I would say - yes that is my daughter, but that is not, and that maybe. Now that I am in section 3 on the whole child talking about your child's emotional health, school, and social interactions - Oh boy they know and are talking about my daughter!

I am also looking at the below 3 books as a way of just introducing to my daughter that everyone is different and then depending on her reaction maybe discussing that she does have (probably) Asperger Syndrome. Also one of my son's two best friends (who will be going to the same home day care provider this summer as both my kids - and did last summer as well) has Asperger Syndrome so if I get the books I will red them to my kids and see if they see my daughter and/or this boy.

If I do get them before you make a decision I will let you know what I think of them. I have not yet checked my local library to see if the have any of them. I probably should.

I am also looking at possibly getting

Can I Tell You About Asperger Syndrome?: A Guide for Friends and Familyby Newson (Foreword), Jude Welton, Jane Telford (Illustrator)

Pennydesigns <scottdesigns@...> wrote:

Penny,

Do you have the 2005 Oasis Guide or the 2001?

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@...

__________________________________________________

[Guest guest]

I copied the entire back section of the book into email and forwarded it to absolutely every adult in the school who interacts with my son in any way EVER, including the principal who clearly has handled him WRONG on several occasions over the years prior to the correct diagnosis.

It's a VERY good book! It also make the diversity of this kids known, instead of grouping them all as being obsessed with the same things like many other things you might read

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

oooooooooooh boy so you have had issues with your principal as well huh? Dont they just make you so angry??? Let me tell you what she did. My son Warren was getting bullied on a daily basis and I complained. They werent doing much about it. His teacher was a complete dope. They called one of the boys who was bullying him into the office and confronted him right in front of Warren. So naturally my son became afraid and recanted out of fear of retaliation. So after that incident there were a couple more incidents. The principal called him a liar. I wanted to jump through the phone and strangle her. So I told her, using an example, when a child is abused and the matter goes to court, they dont send the abused in to face the abuser. If they did that the child would recant out of fear. I told her as a woman who works with children she should know this. To say the least I was pretty Pissed off.....Especially when my son told me he was scared the kid was going to get him back if

he told on him. Oh well, I filed a complaint against her through the district. Sa la vie...... We do what we must right????

in Lancaster, CAdesigns <scottdesigns@...> wrote:

I copied the entire back section of the book into email and forwarded it to absolutely every adult in the school who interacts with my son in any way EVER, including the principal who clearly has handled him WRONG on several occasions over the years prior to the correct diagnosis.

It's a VERY good book! It also make the diversity of this kids known, instead of grouping them all as being obsessed with the same things like many other things you might read

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

Yes, we do what we MUST! THEY force us to take action, I am going to Due Process myself, after not only kids are bullying my son, but TEACHERS as well. I really almost ripped the principals throat out yesterday, you are not alone. I also have been emailing Oprah every day to get the awareness out. We as mothers have become a "cult", and have to do what we have to do. WHAT WOULD THE PRINCIPAL DO IF IT WAS THEIR CHILD?????

Sorry, obviously a very bad day, thanks for letting me vent.

~

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

Check eBay for the book

http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem & category=378 & item=4551038442 & rd=1 & ssPageName=WD1V

This one is like $10.50 w/shipping

Lillian

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@...

__________________________________________________

[Guest guest]

OK,

Caleb had his first IEP yesterday. I posted this on the microcephaly board but I hope someone here can answer my questions as well.

Caleb has been diagnosed isolated microcephaly, global developmental delays, possible pdd-nos. (outside of school). The school just completed all of their evaluations.

OT found sensory integrations disorder- moderate to severe.

PT found low muscle tone upper body, some prioreceptical (sp?) Issues as well.

Teacher found delayed socially when in unsupervised settings, serious delay in fine motor- now needs a new evaluation for this. Agrees with us on seeing echolaiah and "rigid word usage".

speech and language- moderate articulation delay; mild motor issues (muscles around mouth the way they are used)

OK THEY DETERMINED HE QUALIFIES PER: SPEECH IMPAIRED ??????

He gets summer program. He gets 2 (half hour sessions) of speech and language, 1/2 hour of OT a week plus consults...weighted vest for leaving cafe and recess, fine motor to be more reevaluated, PT consult and group work. He is showing "body space issues-- "seeking touch by plowing into children" .

Questions: 1) WHY SPEECH IMPAIRED AND not sensory integration dysfunction or microcephaly or global devel. delays or pdd-nos?2) HOW ARE HIS SYMPTOMS NOT ON THE SPECTRUM??? School and doctors concur?

3)Did I get enough interventions?

He is going into full day kindergarten in the fall. I am also to take him to the cafetaria a few times this year for lunch to help transition his lunch issues.

The summer program saves us $500--- so I am happy about that.

Can I have some feedback and opinions from you veterans....did we do ok or get ripped off?Jane Bernstein <m_bernstein@...> wrote:

Yes, we do what we MUST! THEY force us to take action, I am going to Due Process myself, after not only kids are bullying my son, but TEACHERS as well. I really almost ripped the principals throat out yesterday, you are not alone. I also have been emailing Oprah every day to get the awareness out. We as mothers have become a "cult", and have to do what we have to do. WHAT WOULD THE PRINCIPAL DO IF IT WAS THEIR CHILD?????

Sorry, obviously a very bad day, thanks for letting me vent.

~

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

Penny......DUH....

thanks for the tip.

HELP

Charlotte and ,

Thanks for all the additional input on this book --- It has just gone way up on my list of must buys in my next Amazon order!!!! It sounds like it will help with explaining Aspergers to my kids as well as to many others who will have contact with my daughter. Not to mention also help me as I am still in the learning phase!

So Charlotte is there a reason that you are not using this book to help your daughter understand her big brother better?

Pennydesigns <scottdesigns@...> wrote:

It's a VERY good book! It also make the diversity of this kids known, instead of grouping them all as being obsessed with the same things like many other things you might read

----- Original Message -----

From: M Strahlendorf

Can I tell you About Asperger Syndrome is great. I have it and am giving it to my sons 5th grade teacher to share with his class at the beginning of 5th grade. It is absolutely perfect for kids between the ages of about 7 and up. I made copies of it and handed them out to my family. Aunts, Uncles, cousins, grandparents. They were amazed that a childrens book could identify AS in such a remarkable way and yet make it understandable to the young. GET THE BOOK... You wont be sorry

in Lancaster, CAPenny <smadaynnep@...> wrote:

I am also looking at possibly getting

Can I Tell You About Asperger Syndrome?: A Guide for Friends and Familyby Newson (Foreword), Jude Welton, Jane Telford (Illustrator)

PennyPenny smadaynnep@...

[Guest guest]

Jane,

You just described my son to a t, especially when he was younger. Amazing isn't it. I had to fight for the spectrum diagnosis when it seemed SO obvious it was rediculous. Only my problem was that without the "actual" spectrum diagnosis the school would not offer the services to him. It was not the school who did the testing in our case though, it was all outside evals.

I am so sorry you have to deal with that, makes no sence to me.

-Charlotte

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

Oh, don't even get me started!!

The last run in we had with the principal was when he yelled at my son in front of 2 other boys for not "putting himself in another child's shoes" and sticking up for that child. Then while he was yelling at him he got even more angry with my son because he was not "looking at him" but instead looking at the table.

My son was so freaked out that he did not even tell me about it when he got home. I found out because the parents of the two other boys called me to tell be because their sons came home and told them all about it because it bothered them that was yelled at to the point of tears in front of them.....

THIS MAN WAS SO LUCKY THAT I GOT THIS INFO ON A FRIDAY NIGHT I CAN'T EVEN TELL YOU!!!

Monday morning I marched into the main office looked at him and said We need to talk...NOW! I then turned to the Vice Principal and said "and you better come too".

Would you believe that the man not only ADMITTED it but started trying to JUSTIFY his actions and was actually just about yelling at me! I was yelling back and about ready to lunge across the table when he was saved by a page over the PA and had to leave. I was left with the VP to whom I said "that man is NEVER to be alone with my child EVER or we are going to have REALLY big problems. She said she understood...and the man still scampers in the other direction or literally hides when he sees me coming..............grrrrrrrrrrrr.....

btw....this was before the AS diagnosis but they were WELL aware at the time of his anxiety issues and social problems...even if they did not know the NAME for them at the time!

-Charlotte

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

Charlotte,

Dont you just want to tear them apart?????? The principal and I butted heads bigtime over these problems. My son was getting socked in the face and she was doing nothing about it. So I told my son he could fight back if that is what is was going to come to. Guess what? He did.... I hate to admit it but I told him so. You know how kids are when you dont fight back... They keep making you a victim. So this nasty kid in his class pushed him and called him stupid and Warren clocked him in the face. I try not to condone violence but guess what?? The boy has not messed with him since.... sad but true.... So the school called me and said they cant have this kind of behavior with his fighting back and all.... Can you believe that???? So he got Saturday school. I told him he had to live with the consequences of fighting back but that dad and I were not mad at him. So I told the school if you dont do something this is what happens. And between you and me I was so proud that he had the

fortitude to defend himself.

in Lancaster, Cadesigns <scottdesigns@...> wrote:

Oh, don't even get me started!!

The last run in we had with the principal was when he yelled at my son in front of 2 other boys for not "putting himself in another child's shoes" and sticking up for that child. Then while he was yelling at him he got even more angry with my son because he was not "looking at him" but instead looking at the table.

My son was so freaked out that he did not even tell me about it when he got home. I found out because the parents of the two other boys called me to tell be because their sons came home and told them all about it because it bothered them that was yelled at to the point of tears in front of them.....

THIS MAN WAS SO LUCKY THAT I GOT THIS INFO ON A FRIDAY NIGHT I CAN'T EVEN TELL YOU!!!

Monday morning I marched into the main office looked at him and said We need to talk...NOW! I then turned to the Vice Principal and said "and you better come too".

Would you believe that the man not only ADMITTED it but started trying to JUSTIFY his actions and was actually just about yelling at me! I was yelling back and about ready to lunge across the table when he was saved by a page over the PA and had to leave. I was left with the VP to whom I said "that man is NEVER to be alone with my child EVER or we are going to have REALLY big problems. She said she understood...and the man still scampers in the other direction or literally hides when he sees me coming..............grrrrrrrrrrrr.....

btw....this was before the AS diagnosis but they were WELL aware at the time of his anxiety issues and social problems...even if they did not know the NAME for them at the time!

-Charlotte

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

OK THEY DETERMINED HE QUALIFIES PER: SPEECH IMPAIRED ??????

He gets summer program. He gets 2 (half hour sessions) of speech and

language, 1/2 hour of OT a week plus consults...weighted vest for leaving cafe

and recess, fine motor to be more reevaluated, PT consult and group work. He is

showing " body space issues-- " seeking touch by plowing into children " .

******************You might want to

consider making sure he gets up early enough that he can do a simple exercise

program before school. Just bouncing around on those balls with a handle or

swinging, these help with sensory issues like plowing into other kids.

Questions: 1) WHY SPEECH IMPAIRED AND not sensory integration

dysfunction or microcephaly or global devel. delays or

pdd-nos?

***************Hi Jane, a University

professor who specializes in Autism once told me that when a child doesn’t

meet certain criteria for an IEP, you should try and get services through speech

discrepancies. The other diagnosis you mentioned might not get you services. Microcephaly

might go under ‘other health impaired’, I’m not sure. However,

for now the speech impaired is getting you services. From what you have said

they are going to do, it sounds pretty good to me. Many people have to fight

for summer programs, never mind the regular school year.

He is going into full day kindergarten in the fall.

*************I will tell you now that full

day may be more than he can handle, just be aware of this. I’m old

fashioned I guess, I don’t believe in full day kindergarten. My son, 12, Asperger’s(diagnosed at almost 10) was totally wiped

out with ½ day. He would come home and head for the couch. He had a nice

teacher who he liked very much.

 I am also to take him to the

cafetaria a few times this year for lunch to help transition his lunch issues.

*************I would ask now to have a

lunch buddy, kid or adult to help him out.

************Well that’s my 2 cents

for what it’s worth! Good luck, Gail

 

[Guest guest]

I have had this argument time and time again with the school for years!

It always seems like they are putting all the responsibility on the victim to learn how to "handle" being bullied rather than stopping the bully's behavior.

They should never be having the kids meet with them and their accuser, all that is is guaranteed torture for the victim later that day!!

I told my VP flat out....I said, one of these days he's going to finally blow, after years of coming to you people and you not doing anything. I also said. that if they did not do something NOW to address the problem and my son did blow his lid on someone, I was holding the school at fault and my son was NOT to be unfinished. I think 4 years of self restraint without help from teachers is long enough!

They could see I was right and immediately doubled playground attendants, and started being on top of behavior. I had also said that I had better never hear again that my child went to an adult for help and nothing was done.

...I can understand that you were proud that he could stand up for himself!

-Charlotte

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

That drives me NUTS! I've heard the arguement that the victim has to learn not to be a victim. My kids have not really been bullied but when I was PTA president I had this discussion with the administration many times. When did it happen that it's ok to say a child invited abuse? Is it then ok to say a rape victim asked for it? How stupid is that? I once told an asst superintendant that I would teach my kids not to be victims., I told them if anyone does anything to you, you have my permission to kick thier sorry butts. I will deal with the repercussions later. What kind of lessons are they teaching our kids? designs <scottdesigns@...> wrote:

I have had this argument time and time again with the school for years!

It always seems like they are putting all the responsibility on the victim to learn how to "handle" being bullied rather than stopping the bully's behavior.

They should never be having the kids meet with them and their accuser, all that is is guaranteed torture for the victim later that day!!

I told my VP flat out....I said, one of these days he's going to finally blow, after years of coming to you people and you not doing anything. I also said. that if they did not do something NOW to address the problem and my son did blow his lid on someone, I was holding the school at fault and my son was NOT to be unfinished. I think 4 years of self restraint without help from teachers is long enough!

They could see I was right and immediately doubled playground attendants, and started being on top of behavior. I had also said that I had better never hear again that my child went to an adult for help and nothing was done.

...I can understand that you were proud that he could stand up for himself!

-Charlotte

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

Hi Jane

Where do you live and how old is your son? In NY there are only a few classification for spec ed. My dd is classified Other health impaired and gets all the services she needs. There is no classification called sensory integration dysfunction. There is, however, an autism classification. Really though it doesn't matter what the classification is as long as he is classifed and get the services he needs. It is great that they are giving you summer services. We get OT in the summer too but lots of people don't. If it were me, I would ask for PT rahter than or in addition to the consults. I would also want more OT. Mt dd had been getting OT twice a week. We have just reduced it to once a week consult. The OT beleives she no longer needs as much. I am sceptical but if she does need it I will reconvene the CSE and request it. You're lucky that you get speech right out the

gate. I've had to fight for it but now she will be getting twice a week speech. As he gets older you may have to add services. This year we added resource room. If you think he needs more you can always request that the CSE meet again. Remember, you are a member of that CSE and your opinion counts. Although many districts try to keep you from knowing that so they can bully you into what they want. Check out your local chapter of SEPTA (special ed PTA) and ask questions. You might also want to touch base with your parent member of the CSE. I have gotten a lot of help that way. Good luck. It is a chllenging road dealing with the school district but it is possible to get what your child needs.JANE MAJEWSKI <janemajewski@...> wroteOK THEY DETERMINED HE QUALIFIES PER: SPEECH IMPAIRED ??????

He gets summer program. He gets 2 (half hour sessions) of speech and language, 1/2 hour of OT a week plus consults...weighted vest for leaving cafe and recess, fine motor to be more reevaluated, PT consult and group work. He is showing "body space issues-- "seeking touch by plowing into children" .

Carol, mom to

, 3/14/94

, 2/18/97

Lily, 9/7/04__________________________________________________

[Guest guest]

Jane,

Where in NY are you from? My partner and I live on Long Island.

[Guest guest]

Jane,

Where in NY are you from? My partner and I live on Long Island.

[Guest guest]

They are teaching our kids to be victims by victimizing them when they defend themselves.... The schools are lower than dirt......

in Lancaster Cacarol sobczak <cpsobczak@...> wrote:

That drives me NUTS! I've heard the arguement that the victim has to learn not to be a victim. My kids have not really been bullied but when I was PTA president I had this discussion with the administration many times. When did it happen that it's ok to say a child invited abuse? Is it then ok to say a rape victim asked for it? How stupid is that? I once told an asst superintendant that I would teach my kids not to be victims., I told them if anyone does anything to you, you have my permission to kick thier sorry butts. I will deal with the repercussions later. What kind of lessons are they teaching our kids? designs <scottdesigns@...> wrote:

I have had this argument time and time again with the school for years!

It always seems like they are putting all the responsibility on the victim to learn how to "handle" being bullied rather than stopping the bully's behavior.

They should never be having the kids meet with them and their accuser, all that is is guaranteed torture for the victim later that day!!

I told my VP flat out....I said, one of these days he's going to finally blow, after years of coming to you people and you not doing anything. I also said. that if they did not do something NOW to address the problem and my son did blow his lid on someone, I was holding the school at fault and my son was NOT to be unfinished. I think 4 years of self restraint without help from teachers is long enough!

They could see I was right and immediately doubled playground attendants, and started being on top of behavior. I had also said that I had better never hear again that my child went to an adult for help and nothing was done.

...I can understand that you were proud that he could stand up for himself!

-Charlotte

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

They are teaching our kids to be victims by victimizing them when they defend themselves.... The schools are lower than dirt......

in Lancaster Cacarol sobczak <cpsobczak@...> wrote:

That drives me NUTS! I've heard the arguement that the victim has to learn not to be a victim. My kids have not really been bullied but when I was PTA president I had this discussion with the administration many times. When did it happen that it's ok to say a child invited abuse? Is it then ok to say a rape victim asked for it? How stupid is that? I once told an asst superintendant that I would teach my kids not to be victims., I told them if anyone does anything to you, you have my permission to kick thier sorry butts. I will deal with the repercussions later. What kind of lessons are they teaching our kids? designs <scottdesigns@...> wrote:

I have had this argument time and time again with the school for years!

It always seems like they are putting all the responsibility on the victim to learn how to "handle" being bullied rather than stopping the bully's behavior.

They should never be having the kids meet with them and their accuser, all that is is guaranteed torture for the victim later that day!!

I told my VP flat out....I said, one of these days he's going to finally blow, after years of coming to you people and you not doing anything. I also said. that if they did not do something NOW to address the problem and my son did blow his lid on someone, I was holding the school at fault and my son was NOT to be unfinished. I think 4 years of self restraint without help from teachers is long enough!

They could see I was right and immediately doubled playground attendants, and started being on top of behavior. I had also said that I had better never hear again that my child went to an adult for help and nothing was done.

...I can understand that you were proud that he could stand up for himself!

-Charlotte

HELP

Charlotte,

Here are a few on Amazon that you may want to see if the library has to preview them and see if they answer the mail.

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autismby Fiona Bleach

My Friend with Autism: A Coloring Book for Peers and Siblingsby Beverly Bishop, Craig Bishop (Illustrator)

Asperger's Huh? A Child's Perspectiveby Rosina Schnurr, Rosina G. Schnurr, Strachan

Pennydesigns <scottdesigns@...> wrote:

Ok, I need a book for my 4 year old daughter to help me explain her OLDER brother with AS. I can't find one anywhere!

Only ones I have found are either about a younger sibling or about having a sibling with full blown autism.

She keeps asking me "why" he behaves, reacts, and does the things he does and I think a book about someone else with a brother like hers would help allot.

-Thanks!

-CharlottePenny smadaynnep@... __________________________________________________

[Guest guest]

The weekend has been so crazy I forgot why I actually asked where you live. We are in Deer Park. We actually use to live in Mineola. We are in the process of adopting two boys, they are brothers. is going to be 7 in August and is 5. has AS. We, my partner and I are in the process of learning all we can so that we can provide with all the help he needs. Maybe we can be a support for each other. Looking forward to chatting..hope you had a great holiday weekend.

[Guest guest]

Where does this family live in Ohio? I am from Ohio. Maybe we can get a contractor to do it for free they need tax right offs. My husband does some work on the side even though he is a electrician.

[Guest guest]

Hi , we live in Georgia, but come from Babylon. I highly recommend that you contact Lee Chasen, of Kid Esteem. He is right on Montauk Highway & 109. His # is 631-321-6675. He & his wife have a practice, and they are just the warmest people. We have been here for 3 years, and still contact Lee for our 13 year old Aspie son. He is just so smart & caring, I think you will be pleased. Please let me know if you do talk with him, and send him our warmest regards. He is irreplaceable, we are just lost without him.

Best of luck, I assure you NY schools are a dream compared to here!

Re: HELP

The weekend has been so crazy I forgot why I actually asked where you live. We are in Deer Park. We actually use to live in Mineola. We are in the process of adopting two boys, they are brothers. is going to be 7 in August and is 5. has AS. We, my partner and I are in the process of learning all we can so that we can provide with all the help he needs. Maybe we can be a support for each other. Looking forward to chatting..hope you had a great holiday weekend.