Re: Digest Number 1533

September 3, 2001

Hi,

We are fairly new to the list and most of you are ahead of us. However, I saw

the reflux plea and thought I might be able to help. Our doctors have never

been able to help my two sons with their significant reflux problems. I begged

for Bethanacol after learning about it at the May Dan conference, but none of my

western medical doctors would prescribe it. I turned to a doctor of oriental

medicine and licensed acupuncturist who practices NAET a couple of weeks ago.

Dr. Trott in Hurst, TX has been so helpful in a very short time. He said

that my kids wouldn't benefit from Enzymaid, digestive enzymes recommended by

DAN until the reflux problem was cured because they contain protease.

Apparently, the protease enzyme makes the reflux worse. Certainly, the use of

Enzymaid for the past 3-4 months had not helped my kids. He gave me an enzyme

called T5 to T9-Stm Stomach Suport Formula made by THERA-ZYME. It contains

papaya leaf, marshmallow root, slippery elm bark, mastic tree gum, Amylase,

Catalase, Dellulase, and Lipase. Both my kids took this enzyme with every meal

for two days and they were sleeping through the night, eating significantly

more, and stopped complaining about their stomachs hurting all the time. No

more multiple times waking in the night wanting a glass of water or taking a

couple bites of dinner and quitting because their tummies hurt!!! After a week,

he switched them to enzymes by the same company with protease in it. The

THERA-ZUME enzymes were developed and formulated by Dr. Loomis and are

distributed by Enzyme Formulations, Inc. in Madison, WI. Perhaps they'll help

you as much as they helped us. I have one son that's 7 1/2 with Asperger's

Syndrome and a 5 1/2 year old with multiple developmental delays for a general

learning disabled diagnosis.

=======================================================

September 24, 2004

,

~hugs~ Take a deep breath and know you are not alone... As a childcare

provider, a past foster parent, and as a mother of an AS child, I have been

in your shoes as well as in the teacher's shoes. Let me give you some

insight on what might be happening...

Many times, schools hire aides that do not have much experience and then

" train " them in. This training consists of mostly how to handle different

situations that come up at school with the children they may be working with

as well as some of the reasoning as to why. Very often, it does not include

any training on effective communication with home or ways to deal with the

" frustrations/emotions " that may be evoked during the course of the day...

The good news is that this can be overcome!!!

What the aide needs to understand is that if your son didn't do some of the

things he does during the day, HE WOULDN'T NEED HER!!! That is to say, it is

because he needs extra guidance and things repeated that she has a job. She

needs to be reassured that everyone gets annoyed when having to repeat or

when behaviors continue for too long, but that there are appropriate ways to

express and deal with those emotions.

As a parent, the last thing you need is every little possible discrepancy

between Zo's behavior during the day and the rest of the class being pointed

out. We already know our children are different and need extra help. We

already know they are different. What this aide needs to be taught is how to

look for the positive steps and how to focus on them. Instead of

thinking/saying, " it took three times before Zo would respond, " it would be

much better to possibly compare it to the past where he didn't respond at

all or perhaps being content/happy that he chose to respond at all! I bet if

Zo received positive reinforcement from his response, he would be much more

likely to give it again the next time the situation arose, even if he seemed

to ignore the positive response initially. What aides are not often taught

is that " WHATEVER YOU PUT YOUR FOCUS ON, WHETHER POSITIVE OR NEGATIVE, THAT

IS THE BEHAVIOR THAT WILL INCREASE! " The best way to get more positive

responses from parents or students is to focus on what they are doing right.

Sometimes, you have to bring up the negative, but at those times you respond

with empathy for their position and set boundaries that are firm. That is

not to say that the kids don't cross them, but that they remain consistent

and the response to crossing them remains consistent. Those times can also

be reacted to positively, because when they stay on " the right side of the

line " , you make a big deal out of how well they are doing and how proud you

are of them.

We know our children are different. We don't need to be reminded regularly

or have it shoved in our faces that they aren't responding as quickly as

" normal kids " would. Every time Tyler goes through something like that, my

heart bleeds for him. It is like another chink has been taken out of his

armor and self esteem, and I worry for him all that much more.

Wouldn't it be nicer if she developed baseline expectations based upon the

child rather than the " norm " ? That way, if Zo always makes noises, they

aren't worthy of comment... If it always takes a couple times for him to

respond, it isn't worth comment. If he then improves from what he is doing

(say it only took two warnings), that IS reported so that you can respond

accordingly (big happy dance with him). If he does something really out of

bounds (like never responding/lashing out/etc) then you are notified of the

instance as well as what their response was... Wouldn't it be nice to hear

that Zo had a better day today than yesterday? You said he has improved from

last year... Shouldn't that be the focus??? Anyway, I have trained people

out of this before, but it takes cooperation on their part as well as

empathy and understanding. Our children do not choose to be different; they

just are!!!

I have had 15 years experience working with special needs children. Yet,

every time I take on a new child, I have to remind myself that this child

has different needs, has a different background, has different strengths,

and may advance at a different pace. This is even with 15 years experience.

If you expect every child to fit into a template based upon previous

experience, you set yourself and the child up for failure. It sounds like

this lady perhaps has experience within a single environment with a single

grouping of kiddos, and is expecting Alonzo to fit that mold. Well, he has

never been there, doesn't know the expectations, can't live up to what

someone else has decreed based upon others, and could get frustrated if he

is expected to. ly, he shouldn't have to. Talk to the teachers some

time. Ask them how it feels at the beginning of the year to start with new

students compared to the end of the previous year. You will find without

exception that they are usually surprised yet again at how immature the

incoming class is, how they had forgotten how long it took them to really

get into the routine, and how rules that had become second nature the year

before had to be re-taught (or taught for the first time due to these being

new kiddos) to the kids. As educators, we ALL feel that way, especially with

special needs kiddos. We work so hard and come so far, only to start all

over again. That is really hard for some to take because they want everyone

else to start up where their previous students left off, which is really

unfair to the incoming students... I am speaking in generalities here, but I

think you get the idea!!! ~hugs~

I wouldn't get up in arms over this. Instead, I would ask to set up a

meeting between you, the aide, and the teacher/counselor/principle or

whatever support person is most closely associated with your child. I would

start off with the positives, like the improvements you have noticed from

last year to this and I would thank her for the difference she is making

(this is the same thing you want her to do with your son, so you want to

model it!) I would then ask to have a troubleshooting session in hopes of

making the year even better. At that point, let them know that you have

noticed that much of the energy has been focused on what Zo has done wrong

rather than right, and you are hoping to change the focus as well as the

notes coming home. Explain how those notes make you feel, as you are as

powerless as they to make him into a model child and that sometimes hearing

only the negative hurts. Explain to them that you want his notes based upon

him and his abilities rather than on the norm, how if he is reminded less

one time to do something than he was yesterday, that you believe that is

something to celebrate rather than focusing on the fact that he still needed

guidance. Let them know what you think they are doing right, that it is good

that they are willing to remind him and repeat themselves, but that it needs

to be something they expect to have to do rather than something annoying or

aggravating. For Zo, it is just a fact of life, like breathing or being

awkward. You wouldn't point out that a kid in a wheelchair didn't stand up

and walk today would you? If he was able to stand without assistance, would

you say he still didn't take a step, or would you congratulate him? What if

he took a step but still couldn't walk across the room? Well, the same goes

for a mental disability. We don't need to focus on only what he can't do,

but we need to focus on how to help him take steps towards doing as much as

he can do and praising his efforts...

Okay, I know I am going to get in trouble for writing another book... I

can't seem to help myself this week... Take care and good luck!!!

~hugs~

Rabecca

September 24, 2004

,

Amen!!! I didn't even think in my response to say what activities she should

be doing with Zo to decrease the " annoying " behaviors other than redirecting

herself. OT activities brought into the classroom are an amazing help to

many kiddos!!! My son had firm rubs, a weighted vest, a soft cloth, a piece

of sandpaper, things to mess with in one hand while he worked (not all at

the same time of course) but they did work. Yet even with these tools,

unless this aides attention/attitude changes a bit, the negative behaviors

aren't going to go away because they are what she is focusing on!

Thanks again for a great post!!!

~hugs~

Rabecca

What is the replacement behavior is being taught for the " annoying "

behavior? I would suggest trying some sensory excercises - an OT

therapist should be able to make some suggestions for the stimming

behavior.

Here are some examples that I have seen ASD kids use: Some kids play

rub something with texture. Eventually, I have seen some kids keep

something small in their pocket to rub during sensory overload times

during the day. Some kids like to scoop rice with cup and poor over

their hands or dig their hands into the rice container. Rocking

chairs are great - it socially acceptable way to rock. I have seen

classrooms that will dedicate an area for sensory play. Some even

have mini-trampolines for them to burn off some of that excess

energy. When the child isn't responding, allowing the child a sensory

break can do wonders.

My son sometimes need to the leave the classroom for mini-sensory

breaks. The area dedicate to his needs is in the special ed directors

office. There is rocking chair. Soft plush toys to rub. Small balls

to squeeze and bounce. The area is semi-darkness. There are rules for

him to follow while he is using it, such as no kicking the walls -

but he can stomp his feet on the floor, no yelling or screaming - he

can cry, scream into a pillow, tell someone what he is feeling or

what the problem is. He is direct to " quiet place " by teachers or he

is allowed to go there whenever he feel like he needs it. He doesn't

abuse the space. Generally, he is there for five minutes and ready to

go back to the classroom.

Redirection is not the only tool in the Aides tool box.

September 24, 2004

,

Hi and welcome! I do not believe that autism is strictly caused by vaccines,

but that they may trigger something genetic or in some kiddos produce

autistic behaviors that are later diagnosed autism. There are too many

studies and links for me to totally discount it... Yet the idea that I

purposely did something that led to my son's condition (and my other son's

demise) really hurts. Meat and Taters just showed up on this site last week

sometime and is trying to keep everyone stirred up. I really hope they do

even more studies on the vaccines and that they are able to find a way to

make them safer to give to our children (like getting rid of the mercury

base- thermocil...hello!!!) We already know that mercury can cause autistic

symptoms and that the vaccines contain an unsafe level. Why then aren't they

doing more to change it??? I worry about those who have kids still at the

age where they are having to make this tough decision. On one hand, I am

glad my kids are vaccinated and that they won't die from these diseases. On

the other, I am upset that the companies producing the vaccines aren't doing

everything within their power to make ALL vaccines safer!!!

~hugs~

Rabecca

Subject: Is this new study linking autism and MMR for real?

Hi there. I don't visit this group often, but every once in awhile

I will read through the messages here. Please pardon me if I am

drumming up an already old topic, but I also belong to the

group called autism-diet and there was a link sent in that group

about this study in this falls American Journal of Physicians and

Surgeons that proves the autism/MMR link. Did any of you see this?

THere was also another post about a new book called Autism- A

political bombshell. I was just wondering if any of you saw these

and what you are thinking about it. It really upsets me that my

worst fear (that my son was brain damaged by his vaccines) has

become reality. It really gives me a whole new perspective on

things. I am not sure what to think. Any thoughts?

in North Carolina

September 24, 2004

Hi Rabecca,

We had this question come up in another list I am on by a concerned mother who was very much into natural food, etc., and a pharmacologist who is on that group wrote and said that the vaccines no longer contain mercury in them.

If I remember correctly he teaches pharmacology in a medical school. So perhaps I could write to him, and ask for clarification in this area, and forward it on to this group.

Carolyn

Is this new study linking autism and MMR for real?Hi there. I don't visit this group often, but every once in awhileI will read through the messages here. Please pardon me if I amdrumming up an already old topic, but I also belong to the group called autism-diet and there was a link sent in that groupabout this study in this falls American Journal of Physicians andSurgeons that proves the autism/MMR link. Did any of you see this?THere was also another post about a new book called Autism- Apolitical bombshell. I was just wondering if any of you saw theseand what you are thinking about it. It really upsets me that myworst fear (that my son was brain damaged by his vaccines) hasbecome reality. It really gives me a whole new perspective onthings. I am not sure what to think. Any thoughts? in North Carolina

September 24, 2004

An independent group got several different vaccine samples that were

labeled as " thimerosal free " and had them tested for Hg content.

The vaccines tested positive. It turned out that even thought

Thimerosal was not being used in the end product as a preservative,

it was still being used somewhere in the manufacturing process and

there was still some leftover Hg in the vaccines as a result.

Either the manufacturers don't get it, or don't want to get it.

> Hi Rabecca,

>

> We had this question come up in another list I am on by

> a concerned mother who was very much into natural food,

> etc., and a pharmacologist who is on that group wrote and

> said that the vaccines no longer contain mercury in them.

>

> If I remember correctly he teaches pharmacology in a

> medical school. So perhaps I could write to him, and ask for

> clarification in this area, and forward it on to this group.

>

> Carolyn

>

> Is this new study linking autism and MMR for real?

>

> Hi there. I don't visit this group often, but every once in

> awhile

> I will read through the messages here. Please pardon me if

> I am

> drumming up an already old topic, but I also belong to the

>

> group called autism-diet and there was a link sent in that

> group

> about this study in this falls American Journal of

> Physicians and

> Surgeons that proves the autism/MMR link. Did any of you

> see this?

> THere was also another post about a new book called Autism-

> A

> political bombshell. I was just wondering if any of you saw

> these

> and what you are thinking about it. It really upsets me

> that my

> worst fear (that my son was brain damaged by his vaccines)

> has

> become reality. It really gives me a whole new perspective

> on

> things. I am not sure what to think. Any thoughts?

>

> in North Carolina

>

September 25, 2004

Hi Rabecca,

I read your entire letter and found it very interesting, and have to say I agree with you. But saying that I think it is almost impossible to train anybody to agree with you if they don't already have what you are talking about within their hearts somewhere. I believe people are either positive, or they are negative, and it believe it is hard to change, not saying it can't be done, but it is hard. It is like their personality or their eye color, unchangeable.

With my son Marty, from the very beginning it seemed like "the system" wanted to persecute him for problems he had in his brain that he had absolutely no control over. The first thing they suggested? Just lock him up in the institution and walk away and forget about him! And that wasn't so long ago. Well I never did it, have never even considered doing it, but what I learned from many years of experience is that this type of mentality is rampant in the field of special ed, whatever you want to call it.

I don't know why. I think it is the devil, haha. That might sound overdramatic, but I have just seen way too much of it all these years to think otherwise. I have found that there is an enemy that does not want our children to do well, who always seem to standing against them and pointing out the failures, da, da, da, da, da.

Well what I did in my life was I went the other way entirely. Just realized that my son's life was precious and I was going to treat him with respect and dignity and love, and that was it. But boy have I had a struggle. And even now some of the best intentioned people you will meet, still make me nuts.

Like when Marty was sick a few years ago, very sick, he was intubated in ICU because his throat had swelled up from strep infection, well I was talking to a Catholic nun about him, nothing against Catholics, it just happened to be a Catholic hospital, and since we did not know if Marty would live her die she gave me her "quality of life" speech. I couldn't believe it! There my son was fighting for his life, that took about another month in the hospital and she is trying to tell me to let go, just let him go, well because what was his purpose anyway, da, da, da.

This is what I am talking about. This negative "force" in this world.

Well I will stop now, people probably think I have gone off into a tangent, it is just that your letter Rabecca pushed some buttons in me and I wanted to vent, and maybe warn you too because I am telling you parents that you had better be ready for this. All the negative influence you are going to have to stand up against, and how you will have to defend your children from it.

Well have to go, my little grandson is crying and needs me. I gave him his first bath over here, and he didn't much like it. Now I think he wants a bottle.

Love to you all!

Carolyn

Yes, there are good people out there, I really believe that. But we just did not meet a whole lot of them.

RE: Digest Number 1533

,~hugs~ Take a deep breath and know you are not alone... As a childcareprovider, a past foster parent, and as a mother of an AS child, I have beenin your shoes as well as in the teacher's shoes. Let me give you someinsight on what might be happening...Many times, schools hire aides that do not have much experience and then"train" them in. This training consists of mostly how to handle differentsituations that come up at school with the children they may be working withas well as some of the reasoning as to why. Very often, it does not includeany training on effective communication with home or ways to deal with the"frustrations/emotions" that may be evoked during the course of the day...The good news is that this can be overcome!!!What the aide needs to understand is that if your son didn't do some of thethings he does during the day, HE WOULDN'T NEED HER!!! That is to say, it isbecause he needs extra guidance and things repeated that she has a job. Sheneeds to be reassured that everyone gets annoyed when having to repeat orwhen behaviors continue for too long, but that there are appropriate ways toexpress and deal with those emotions.As a parent, the last thing you need is every little possible discrepancybetween Zo's behavior during the day and the rest of the class being pointedout. We already know our children are different and need extra help. Wealready know they are different. What this aide needs to be taught is how tolook for the positive steps and how to focus on them. Instead ofthinking/saying, "it took three times before Zo would respond," it would bemuch better to possibly compare it to the past where he didn't respond atall or perhaps being content/happy that he chose to respond at all! I bet ifZo received positive reinforcement from his response, he would be much morelikely to give it again the next time the situation arose, even if he seemedto ignore the positive response initially. What aides are not often taughtis that "WHATEVER YOU PUT YOUR FOCUS ON, WHETHER POSITIVE OR NEGATIVE, THATIS THE BEHAVIOR THAT WILL INCREASE!" The best way to get more positiveresponses from parents or students is to focus on what they are doing right.Sometimes, you have to bring up the negative, but at those times you respondwith empathy for their position and set boundaries that are firm. That isnot to say that the kids don't cross them, but that they remain consistentand the response to crossing them remains consistent. Those times can alsobe reacted to positively, because when they stay on "the right side of theline", you make a big deal out of how well they are doing and how proud youare of them.We know our children are different. We don't need to be reminded regularlyor have it shoved in our faces that they aren't responding as quickly as"normal kids" would. Every time Tyler goes through something like that, myheart bleeds for him. It is like another chink has been taken out of hisarmor and self esteem, and I worry for him all that much more.Wouldn't it be nicer if she developed baseline expectations based upon thechild rather than the "norm"? That way, if Zo always makes noises, theyaren't worthy of comment... If it always takes a couple times for him torespond, it isn't worth comment. If he then improves from what he is doing(say it only took two warnings), that IS reported so that you can respondaccordingly (big happy dance with him). If he does something really out ofbounds (like never responding/lashing out/etc) then you are notified of theinstance as well as what their response was... Wouldn't it be nice to hearthat Zo had a better day today than yesterday? You said he has improved fromlast year... Shouldn't that be the focus??? Anyway, I have trained peopleout of this before, but it takes cooperation on their part as well asempathy and understanding. Our children do not choose to be different; theyjust are!!!I have had 15 years experience working with special needs children. Yet,every time I take on a new child, I have to remind myself that this childhas different needs, has a different background, has different strengths,and may advance at a different pace. This is even with 15 years experience.If you expect every child to fit into a template based upon previousexperience, you set yourself and the child up for failure. It sounds likethis lady perhaps has experience within a single environment with a singlegrouping of kiddos, and is expecting Alonzo to fit that mold. Well, he hasnever been there, doesn't know the expectations, can't live up to whatsomeone else has decreed based upon others, and could get frustrated if heis expected to. ly, he shouldn't have to. Talk to the teachers sometime. Ask them how it feels at the beginning of the year to start with newstudents compared to the end of the previous year. You will find withoutexception that they are usually surprised yet again at how immature theincoming class is, how they had forgotten how long it took them to reallyget into the routine, and how rules that had become second nature the yearbefore had to be re-taught (or taught for the first time due to these beingnew kiddos) to the kids. As educators, we ALL feel that way, especially withspecial needs kiddos. We work so hard and come so far, only to start allover again. That is really hard for some to take because they want everyoneelse to start up where their previous students left off, which is reallyunfair to the incoming students... I am speaking in generalities here, but Ithink you get the idea!!! ~hugs~I wouldn't get up in arms over this. Instead, I would ask to set up ameeting between you, the aide, and the teacher/counselor/principle orwhatever support person is most closely associated with your child. I wouldstart off with the positives, like the improvements you have noticed fromlast year to this and I would thank her for the difference she is making(this is the same thing you want her to do with your son, so you want tomodel it!) I would then ask to have a troubleshooting session in hopes ofmaking the year even better. At that point, let them know that you havenoticed that much of the energy has been focused on what Zo has done wrongrather than right, and you are hoping to change the focus as well as thenotes coming home. Explain how those notes make you feel, as you are aspowerless as they to make him into a model child and that sometimes hearingonly the negative hurts. Explain to them that you want his notes based uponhim and his abilities rather than on the norm, how if he is reminded lessone time to do something than he was yesterday, that you believe that issomething to celebrate rather than focusing on the fact that he still neededguidance. Let them know what you think they are doing right, that it is goodthat they are willing to remind him and repeat themselves, but that it needsto be something they expect to have to do rather than something annoying oraggravating. For Zo, it is just a fact of life, like breathing or beingawkward. You wouldn't point out that a kid in a wheelchair didn't stand upand walk today would you? If he was able to stand without assistance, wouldyou say he still didn't take a step, or would you congratulate him? What ifhe took a step but still couldn't walk across the room? Well, the same goesfor a mental disability. We don't need to focus on only what he can't do,but we need to focus on how to help him take steps towards doing as much ashe can do and praising his efforts...Okay, I know I am going to get in trouble for writing another book... Ican't seem to help myself this week... Take care and good luck!!!~hugs~Rabecca

September 25, 2004