Off topic question -

[Guest guest]

Hi

I introduced myself a couple of weeks ago to say that I have just started

using enzymes for my 8yo daughter, autistic spectrum, with good initial results

although we are taking it very slowly.

Whilst reading your wonderful book Enzymes For Autism, I couldn't help

noticing that Parkinson's Disease kept cropping up.....sadly, I have two very

dear

friends who have contracted this terrible disease, one for whom it is

progressing very rapidly and the other who also has also recently been diagnosed

with

cancer.......do you know of anyone who has used enzyme treatment for this

disease, or any references or places that you could refer me (them) to

concerning

enzymes and Parkinson's. They are interested in using enzymes to at least help

with a compromised (very) immune system. I was also thinking that your other

book may be useful for them, but I have not read it because the Autism book

is just great for us - what do you think? Feel free to reply to me privately if

you think it more appropriate.

Thanks everyone else onlist for your tolerance with this off topic question.

Germany

[Guest guest]

It seems like Parkinson's, and many other similar chronic type diseases, must be

linked to some sort of toxicity problem. Perhaps even mercury could play a

role. Just wondering if for something like this do people aggressively focus on

general detoxing protocols? Do people run tests to try to find some sort of

toxicity burden on the body as a possible root cause?

I too am interested in 's response, but would have to believe with any

immune problem the likelihood of gut issues where enzymes could help would go

hand in hand.

Kari

Off topic question -

Hi

I introduced myself a couple of weeks ago to say that I have just started

using enzymes for my 8yo daughter, autistic spectrum, with good initial

results

although we are taking it very slowly.

Whilst reading your wonderful book Enzymes For Autism, I couldn't help

noticing that Parkinson's Disease kept cropping up.....sadly, I have two very

dear

friends who have contracted this terrible disease, one for whom it is

progressing very rapidly and the other who also has also recently been

diagnosed with

cancer.......do you know of anyone who has used enzyme treatment for this

disease, or any references or places that you could refer me (them) to

concerning

enzymes and Parkinson's. They are interested in using enzymes to at least

help

with a compromised (very) immune system.

[Guest guest]

,

Enzymes (particularly the proteases) can help with autoimmune

conditions in the general sense. I will send you info of a person you

can contact for information specific to Parkinson's.

As for the enzyme books, either is fine. There is very little

difference in content as of the third printing of the Enzymes for

Autism book.

We actually just ran a fourth printing last month without changes.

.

[Guest guest]

Hi , My son also doesn't let me know when he's hungry or thirsty unless it's of urgent need. He is like this with anything he needs, like to use the bathroom, help, someone is annoying him, he doesn't tell them to stop until it gets so bad he just s c r e e m s !!!!. This is all what I'm trying to explain to his speech teacher. but because my son has such a Strong - large vocabulary, she didn't get what my urgent concern was. I've been giving her little examples, but I'm not quite sure she gets it. Please let me know how you explained your sons situation to the professionals. Do they get it ? do you have a speech therapist working with him on this ? My point is, how did you describe this to others ?. I've been on this site for a few years and haven't heard anyone decribe this problem with our kids not being able to verbalize their needs like we just described. I wonder what you and

others are doing to help their kids with this ??? Thanks Rosekellypywtorak <kellypywtorak@...> wrote: Rose,It sounds like you got a Rx for an epi-pen. My son has one for hisallergy to latex. He got close to some balloons and breathed indeeply and some of the powder got inhaled. The latex sticks to thepowder on gloves and balloons and gets into the air. He got hives allover. If he breathes in the dust or latex touches him he could gointo anaphylaxis. When he was younger he

could play with balloons,and didn't have this allergy, but he did have food allergies and hayfever. Allergies can come on without notice, even if the person couldtolerate the food or substance in the past.My son also can't explain how he is feeling physically. I have to asklots of questions like you described. I believe it is part of thesensory processing problem. Sometimes he can't tell us if he ishungry or thirsty until he's famished or dying of thirst. The thing to know about the epi-pen, is that you only use it in theleg, then only when he's having trouble breathing. Then I hope yourdoctor told you this--immediately call 911. Some people need a seconddose of epinephrine about 15 minutes later.I'm not positive, but I don't think the honeysuckle plant is the sameas true honey. Anyone know? But just in case, he probably shouldn'tdo that anymore!I hope he feels better soon.> Dear Rose,> > I was sorry to hear about your son's reaction to a bee sting. ButI don't think you have to worry that it's due to an allergy to honey.There is no honey in a bee's stinger. There might be venom -- buthoney is made by a complex process that doesn't involve its stinger.

Here's a description of the process from the East Lansing Journal:> > Honeybees use nectar to make honey. Nectar is almost 80% waterwith some complex sugars. In fact, if you have ever pulled ahoneysuckle blossom out of its stem, nectar is the clear liquid thatdrops from the end of the blossom. In North America, bees get nectarfrom flowers like clovers, dandelions, berry bushes and fruit treeblossoms. They use their long, tubelike tongues like straws to suckthe nectar out of the flowers and they store it in their "honeystomachs". Bees actually have two stomachs, their honey stomach whichthey use like a nectar backpack and their regular stomach. The honeystomach holds almost 70 mg of nectar and when full, it weighs almostas much as the bee does. Honeybees must visit between 100 and 1500flowers in order to fill their honeystomachs.> The honeybees return to the hive and pass the nectar onto otherworker

bees. These bees suck the nectar from the honeybee's stomachthrough their mouths. These "house bees" "chew" the nectar for abouthalf an hour. During this time, enzymes are breaking the complexsugars in the nectar into simple sugars so that it is both moredigestible for the bees and less likely to be attacked by bacteriawhile it is stored within the hive. The bees then spread the nectarthroughout the honeycombs where water evaporates from it, making it athicker syrup. The bees make the nectar dry even faster by fanning itwith their wings. Once the honey is gooey enough, the bees seal offthe cell of the honeycomb with a plug of wax. The honey is storeduntil it is eaten. In one year, a colony of bees eats between 120 and200 pounds of honey.> Your question was not really "off topic" because you mentioned inconnection with your son's allergic reaction that he doesn't tell youwhen he is feeling bad. My son (21 years

old!) still doesn't tell ushe is feeling bad, unless we notice that his behavior is unusual andwe ask him how he's feeling. I wonder if this is an Asperger trait.> It's good that you watch your son so carefully and ask himquestions about his health. Hope his reaction disappears soon, if ithasn't already!> Jill>

[Guest guest]

My son is the same way. We stay on him about going to the bathroom and keep track of how long its been or he will have an accident. He also won't tell us when he's hungry, but will instead have what appears to be an out-of-nowhere tantrum mid-afternoon if we haven't given him a snack. What is that??

On 6/30/08, Rose <beachbodytan2002@...> wrote:

Hi ,

My son also doesn't let me know when he's hungry or thirsty unless it's of urgent need. He is like this with anything he needs, like to use the bathroom, help, someone is annoying him, he doesn't tell them to stop until it gets so bad he just s c r e e m s !!!!. This is all what I'm trying to explain to his speech teacher. but because my son has such a Strong - large vocabulary, she didn't get what my urgent concern was. I've been giving her little examples, but I'm not quite sure she gets it.

Please let me know how you explained your sons situation to the professionals. Do they get it ? do you have a speech therapist working with him on this ? My point is, how did you describe this to others ?. I've been on this site for a few years and haven't heard anyone decribe this problem with our kids not being able to verbalize their needs like we just described. I wonder what you and others are doing to help their kids with this ???

Thanks

Rosekellypywtorak <kellypywtorak@...> wrote:

Rose,It sounds like you got a Rx for an epi-pen. My son has one for hisallergy to latex. He got close to some balloons and breathed indeeply and some of the powder got inhaled. The latex sticks to the

powder on gloves and balloons and gets into the air. He got hives allover. If he breathes in the dust or latex touches him he could gointo anaphylaxis. When he was younger he could play with balloons,and didn't have this allergy, but he did have food allergies and hay

fever. Allergies can come on without notice, even if the person couldtolerate the food or substance in the past.My son also can't explain how he is feeling physically. I have to asklots of questions like you described. I believe it is part of the

sensory processing problem. Sometimes he can't tell us if he ishungry or thirsty until he's famished or dying of thirst. The thing to know about the epi-pen, is that you only use it in theleg, then only when he's having trouble breathing. Then I hope your

doctor told you this--immediately call 911. Some people need a seconddose of epinephrine about 15 minutes later.I'm not positive, but I don't think the honeysuckle plant is the sameas true honey. Anyone know? But just in case, he probably shouldn't

do that anymore!I hope he feels better soon.> Dear Rose,> > I was sorry to hear about your son's reaction to a bee sting. But

I don't think you have to worry that it's due to an allergy to honey.There is no honey in a bee's stinger. There might be venom -- buthoney is made by a complex process that doesn't involve its stinger.

Here's a description of the process from the East Lansing Journal:> > Honeybees use nectar to make honey. Nectar is almost 80% waterwith some complex sugars. In fact, if you have ever pulled ahoneysuckle blossom out of its stem, nectar is the clear liquid that

drops from the end of the blossom. In North America, bees get nectarfrom flowers like clovers, dandelions, berry bushes and fruit treeblossoms. They use their long, tubelike tongues like straws to suckthe nectar out of the flowers and they store it in their " honey

stomachs " . Bees actually have two stomachs, their honey stomach whichthey use like a nectar backpack and their regular stomach. The honeystomach holds almost 70 mg of nectar and when full, it weighs almost

as much as the bee does. Honeybees must visit between 100 and 1500flowers in order to fill their honeystomachs.> The honeybees return to the hive and pass the nectar onto otherworker bees. These bees suck the nectar from the honeybee's stomach

through their mouths. These " house bees " " chew " the nectar for abouthalf an hour. During this time, enzymes are breaking the complexsugars in the nectar into simple sugars so that it is both more

digestible for the bees and less likely to be attacked by bacteriawhile it is stored within the hive. The bees then spread the nectarthroughout the honeycombs where water evaporates from it, making it athicker syrup. The bees make the nectar dry even faster by fanning it

with their wings. Once the honey is gooey enough, the bees seal offthe cell of the honeycomb with a plug of wax. The honey is storeduntil it is eaten. In one year, a colony of bees eats between 120 and200 pounds of honey.

> Your question was not really " off topic " because you mentioned inconnection with your son's allergic reaction that he doesn't tell youwhen he is feeling bad. My son (21 years old!) still doesn't tell us

he is feeling bad, unless we notice that his behavior is unusual andwe ask him how he's feeling. I wonder if this is an Asperger trait.> It's good that you watch your son so carefully and ask himquestions about his health. Hope his reaction disappears soon, if it

hasn't already!> Jill>

[Guest guest]

> Please let me know how you explained your sons situation to the

professionals. Do they get it ? do you have a speech therapist

working with him on this ? My point is, how did you describe this to

others ?.

This is one of the ways I tell if I have a professional who " gets "

Asperger. To my experience, you just aren't going to be able to reach

some people. Sometimes, after they work with the kids a few times, if

they have good imagination and good abstract thinking skills, they may

start getting it. But sometimes, they just can't wrap their brain

around it, and you have to find another professional. It is a bummer

when it is a teacher and you can't switch teachers.

> I've been on this site for a few years and haven't heard anyone

decribe this problem with our kids not being able to verbalize their

needs like we just described. I wonder what you and others are doing

to help their kids with this ???

I don't know what you can do besides try to notice it, bring it to

their attention and encourage them to think about it. My son, who is

13, has gotten better with age. Every year, he gets better; it is

just much slower than other kids. I have hopes, with interventions,

he will be basically okay in this area by the time he is an adult. My

big worry with him is eating. For a long time, he couldn't tell the

difference between a tummy ache and being hungry, and he still just

doesn't notice being hungry too much and doesn't bother eating unless

someone makes him something.

Ruth

[Guest guest]

Heidi, what have you been doing to try to get him to > ask for a snack < ? before he goes into that tantrum. Does your son have a good vocabulary ?. Can he talk to you about something he likes and is interested in ? See, my son can talk your ears off. that's why I'm trying to figure out why he can't tell you he needs something, or for someone to stop annoying him. etc... RoseHeidi Guarino <heidi.guarino@...> wrote: My son is the same way. We stay on him about

going to the bathroom and keep track of how long its been or he will have an accident. He also won't tell us when he's hungry, but will instead have what appears to be an out-of-nowhere tantrum mid-afternoon if we haven't given him a snack. What is that?? On 6/30/08, Rose <beachbodytan2002 > wrote: Hi , My son also doesn't let me know when he's hungry or thirsty unless it's of urgent need. He is like this with anything he needs, like to use the bathroom, help, someone is annoying him, he doesn't tell them to stop until it gets so bad he just s c r e e m s !!!!. This is all what I'm trying to explain to his speech teacher. but because my son has such a

Strong - large vocabulary, she didn't get what my urgent concern was. I've been giving her little examples, but I'm not quite sure she gets it. Please let me know how you explained your sons situation to the professionals. Do they get it ? do you have a speech therapist working with him on this ? My point is, how did you describe this to others ?. I've been on this site for a few years and haven't heard anyone decribe this problem with our kids not being able to verbalize their needs like we just described. I wonder what you and others are doing to help their kids with this ??? Thanks Rosekellypywtorak <kellypywtorak > wrote: Rose,It sounds like you got a Rx for an epi-pen. My son has one for hisallergy to latex.

He got close to some balloons and breathed indeeply and some of the powder got inhaled. The latex sticks to thepowder on gloves and balloons and gets into the air. He got hives allover. If he breathes in the dust or latex touches him he could gointo anaphylaxis. When he was younger he could play with balloons,and didn't have this allergy, but he did have food allergies and hayfever. Allergies can come on without notice, even if the person couldtolerate the food or substance in the past.My son also can't explain how he is feeling physically. I have to asklots of questions like you described. I believe it is part of thesensory processing problem. Sometimes he can't tell us if he ishungry or thirsty until he's famished or dying of thirst. The thing to know about the epi-pen, is that you only use it in theleg, then only when he's having trouble breathing. Then I hope yourdoctor told you this--immediately call 911.

Some people need a seconddose of epinephrine about 15 minutes later.I'm not positive, but I don't think the honeysuckle plant is the sameas true honey. Anyone know? But just in case, he probably shouldn'tdo that anymore!I hope he feels better soon.> Dear Rose,> > I was sorry to hear about your son's reaction to a bee sting. ButI don't think you have to worry that it's due to an allergy to honey.There is no honey in a bee's stinger. There might be venom -- buthoney is made by a complex process that doesn't involve its stinger. Here's a description of the process from the East Lansing Journal:> > Honeybees use nectar to make honey. Nectar is almost 80% waterwith some complex sugars. In fact, if you have ever pulled ahoneysuckle blossom out of its stem, nectar is the clear liquid thatdrops from the end of the blossom. In North America, bees get nectarfrom flowers like clovers, dandelions, berry bushes and fruit treeblossoms. They use their long, tubelike tongues like straws to suckthe nectar out of the flowers and they store it in their "honeystomachs". Bees actually have two stomachs, their honey stomach whichthey use like a

nectar backpack and their regular stomach. The honeystomach holds almost 70 mg of nectar and when full, it weighs almostas much as the bee does. Honeybees must visit between 100 and 1500flowers in order to fill their honeystomachs.> The honeybees return to the hive and pass the nectar onto otherworker bees. These bees suck the nectar from the honeybee's stomachthrough their mouths. These "house bees" "chew" the nectar for abouthalf an hour. During this time, enzymes are breaking the complexsugars in the nectar into simple sugars so that it is both moredigestible for the bees and less likely to be attacked by bacteriawhile it is stored within the hive. The bees then spread the nectarthroughout the honeycombs where water evaporates from it, making it athicker syrup. The bees make the nectar dry even faster by fanning itwith their wings. Once the honey is gooey enough, the bees seal offthe cell of the honeycomb with a

plug of wax. The honey is storeduntil it is eaten. In one year, a colony of bees eats between 120 and200 pounds of honey.> Your question was not really "off topic" because you mentioned inconnection with your son's allergic reaction that he doesn't tell youwhen he is feeling bad. My son (21 years old!) still doesn't tell ushe is feeling bad, unless we notice that his behavior is unusual andwe ask him how he's feeling. I wonder if this is an Asperger trait.> It's good that you watch your son so carefully and ask himquestions about his health. Hope his reaction disappears soon, if ithasn't already!> Jill>

[Guest guest]

> what have you been doing to try to get him to > ask for a snack <

? before he goes into that tantrum. Does your son have a good

vocabulary ?. Can he talk to you about something he likes and is

interested in ? See, my son can talk your ears off. that's why I'm

trying to figure out why he can't tell you he needs something, or for

someone to stop annoying him. etc...

My understanding of all this stuff is: 1) AS kids have a difficult

time " knowing what other people know " . That is, they may think you

know what they know even if they haven't told you or they may not

realize that you might know something they don't. 2) AS kids have a

difficult time identifying their own and other's thoughts and

motivations. It isn't clear to me whether they don't know or can't

express it. I think some of both. 3) They have a difficult time with

" self talk " , that is, the process of talking to oneself in one's head

so you can think things through and make decisions.

I think my kids are very intuitive and don't think in words as much as

the rest of us. And I think we all go through this as part of growing

up to some extent, autistics are just more extreme.

Ruth

[Guest guest]

Gage also doesn't tell us when he is thirsty or hungry. I keep drinks available to him but some days he doesn't touch it and then he will just guzzle the drink down. We keep offering him little snacks during the day so he doesn't eat everything in sight. I don't even ask him if he is hungry. I just fix the meals and put them in front of him.It seems to go along with him not being able to explain his feelings.Sue

Rose,It sounds like you got a Rx for an epi-pen. My son has one for hisallergy to latex. He got close to some balloons and breathed indeeply and some of the powder got inhaled. The latex sticks to the

powder on gloves and balloons and gets into the air. He got hives allover. If he breathes in the dust or latex touches him he could gointo anaphylaxis. When he was younger he could play with balloons,and didn't have this allergy, but he did have food allergies and hay

fever. Allergies can come on without notice, even if the person couldtolerate the food or substance in the past.My son also can't explain how he is feeling physically. I have to asklots of questions like you described. I believe it is part of the

sensory processing problem. Sometimes he can't tell us if he ishungry or thirsty until he's famished or dying of thirst. The thing to know about the epi-pen, is that you only use it in theleg, then only when he's having trouble breathing. Then I hope your

doctor told you this--immediately call 911. Some people need a seconddose of epinephrine about 15 minutes later.I'm not positive, but I don't think the honeysuckle plant is the sameas true honey. Anyone know? But just in case, he probably shouldn't

do that anymore!I hope he feels better soon.> Dear Rose,> > I was sorry to hear about your son's reaction to a bee sting. But

I don't think you have to worry that it's due to an allergy to honey.There is no honey in a bee's stinger. There might be venom -- buthoney is made by a complex process that doesn't involve its stinger.

Here's a description of the process from the East Lansing Journal:> > Honeybees use nectar to make honey. Nectar is almost 80% waterwith some complex sugars. In fact, if you have ever pulled ahoneysuckle blossom out of its stem, nectar is the clear liquid that

drops from the end of the blossom. In North America, bees get nectarfrom flowers like clovers, dandelions, berry bushes and fruit treeblossoms. They use their long, tubelike tongues like straws to suckthe nectar out of the flowers and they store it in their "honey

stomachs". Bees actually have two stomachs, their honey stomach whichthey use like a nectar backpack and their regular stomach. The honeystomach holds almost 70 mg of nectar and when full, it weighs almost

as much as the bee does. Honeybees must visit between 100 and 1500flowers in order to fill their honeystomachs.> The honeybees return to the hive and pass the nectar onto otherworker bees. These bees suck the nectar from the honeybee's stomach

through their mouths. These "house bees" "chew" the nectar for abouthalf an hour. During this time, enzymes are breaking the complexsugars in the nectar into simple sugars so that it is both more

digestible for the bees and less likely to be attacked by bacteriawhile it is stored within the hive. The bees then spread the nectarthroughout the honeycombs where water evaporates from it, making it athicker syrup. The bees make the nectar dry even faster by fanning it

with their wings. Once the honey is gooey enough, the bees seal offthe cell of the honeycomb with a plug of wax. The honey is storeduntil it is eaten. In one year, a colony of bees eats between 120 and200 pounds of honey.

> Your question was not really "off topic" because you mentioned inconnection with your son's allergic reaction that he doesn't tell youwhen he is feeling bad. My son (21 years old!) still doesn't tell us

he is feeling bad, unless we notice that his behavior is unusual andwe ask him how he's feeling. I wonder if this is an Asperger trait.> It's good that you watch your son so carefully and ask himquestions about his health. Hope his reaction disappears soon, if it

hasn't already!> Jill>

[Guest guest]

>> Hi ,> My son also doesn't let me know when he's hungry or thirsty unless it's of urgent need. He is like this with anything he needs, like to use the bathroom, help, someone is annoying him, he doesn't tell them to stop until it gets so bad he just s c r e e m s !!!!. This is all what I'm trying to explain to his speech teacher. but because my son has such a Strong - large vocabulary, she didn't get what my urgent concern was. I've been giving her little examples, but I'm not quite sure she gets it.> Please let me know how you explained your sons situation to the professionals. Do they get it ? do you have a speech therapist working with him on this ? My point is, how did you describe this to others ?. I've been on this site for a few years and haven't heard anyone decribe this problem with our kids not being able to verbalize their needs like we just described. I wonder what you and others are doing to help their kids with this ???> Thanks> Rose> >Hi Rose,That is a good question! I wish I had a good answer for you. Unfortunately I really couldn't get that point across to his pediatrician or to the speech therapist at school when she recently completed her evaluation. She said he passed with flying colors, not just in pronunciation but in semantic language. Elijah demonstrated the behavior in front of our pediatrician when he was 4 (stood up on a chair & screamed while fighting with sis in the doc's office) and I said "I'm concerned about behaviors like this! He's doing this a lot." The Ped. said "perfectly normal for his age". In fact, I still haven't told the ped we got a diagnosis from 2 professionals. Why bother? He's not going to help us get services from the school or regional center. Instead of referring us to the psychologist, his advice was to wait and see what his kindergarten teacher thought about Elijah's behavior in school. We ignored his advice! The psychologist we worked with didn't recommend speech therapy for him, but she did suggest social skills groups which should help a little with communication skills, and OT for the sensory issues and weakness/motor issues. I think it's supposed to help with "body awareness" like the feeling of needing to go to the restroom or get a drink.We're about to start the OT , which our insurance will cover 80%, and we're thinking about the social skills groups (no insurance billing so $$). We haven't had any type of therapy yet at all. Part of the problem is that he appears to do so well at school & childcare, but then he later tells me that people were mean or annoying him, or that he didn't get enough to eat, or had an accident. He is not good at making his needs known. I can see this presenting a problem in school in the future when he doesn't understand what the class is doing. He won't ask for help. I hope to God he knows to get help from staff if he ever gets itchy or gets a rash at childcare or school.

[Guest guest]

I wish I knew why our kiddos have such a hard time saying what they need. It's probably part of the sensory issues. But my NT daughter has always been this way too. She'd rather play than eat at school, then get in the car to come home and snap at everyone or have a meltdown. I can always tell when she is starving, or didn't have any protein in what little lunch she did eat. She throws a lot of her food away because she is very picky. I just try to remind the kids that their body is trying to tell them that they need food (or water, or bathroom break) and that they need to try to listen to their bodies. I also remind my 9 y.o. that she made a foolish choice @ lunch but she can't treat us badly because of it.>> My son is the same way. We stay on him about going to the bathroom and keep> track of how long its been or he will have an accident. He also won't tell> us when he's hungry, but will instead have what appears to be an> out-of-nowhere tantrum mid-afternoon if we haven't given him a snack. What> is that??> > O

[Guest guest]

Heidi, I don't remember how old your son is. But even if he has good communication most of the time, I'm wondering if the little picture communication systems (PECS) that you can make would help, like a "snack menu" on the fridge or cabinet door where he can reach it and take the picture to show you what he wants. Of course, you'd have to be at home for that to work! A lot of Elijah's meltdowns happen when we're on the way home from a long day at childcare.Rose, that sounds like Elijah. He is a non-stop talker.> > Dear Rose,> > > > I was sorry to hear about your son's reaction to a bee sting. But> I don't think you have to worry that it's due to an allergy to honey.> There is no honey in a bee's stinger. There might be venom -- but> honey is made by a complex process that doesn't involve its stinger. > Here's a description of the process from the East Lansing Journal:> > > > Honeybees use nectar to make honey. Nectar is almost 80% water> with some complex sugars. In fact, if you have ever pulled a> honeysuckle blossom out of its stem, nectar is the clear liquid that> drops from the end of the blossom. In North America, bees get nectar> from flowers like clovers, dandelions, berry bushes and fruit tree> blossoms. They use their long, tubelike tongues like straws to suck> the nectar out of the flowers and they store it in their "honey> stomachs". Bees actually have two stomachs, their honey stomach which> they use like a nectar backpack and their regular stomach. The honey> stomach holds almost 70 mg of nectar and when full, it weighs almost> as much as the bee does. Honeybees must visit between 100 and 1500> flowers in order to fill their honeystomachs.> > The honeybees return to the hive and pass the nectar onto other> worker bees. These bees suck the nectar from the honeybee's stomach> through their mouths. These "house bees" "chew" the nectar for about> half an hour. During this time, enzymes are breaking the complex> sugars in the nectar into simple sugars so that it is both more> digestible for the bees and less likely to be attacked by bacteria> while it is stored within the hive. The bees then spread the nectar> throughout the honeycombs where water evaporates from it, making it a> thicker syrup. The bees make the nectar dry even faster by fanning it> with their wings. Once the honey is gooey enough, the bees seal off> the cell of the honeycomb with a plug of wax. The honey is stored> until it is eaten. In one year, a colony of bees eats between 120 and> 200 pounds of honey.> > Your question was not really "off topic" because you mentioned in> connection with your son's allergic reaction that he doesn't tell you> when he is feeling bad. My son (21 years old!) still doesn't tell us> he is feeling bad, unless we notice that his behavior is unusual and> we ask him how he's feeling. I wonder if this is an Asperger trait.> > It's good that you watch your son so carefully and ask him> questions about his health. Hope his reaction disappears soon, if it> hasn't already!> > Jill> >>

[Guest guest]

, that's just it. with my son, he doesn't know if its a problem to let anyone know what's bothering him. as I said before, now that I have learned all this. I tell my son if anything with his body feels different - let me know - no matter if you think it's important or not. just tell me. As for the ped doctors. I find that amazing with all this publicity that's out there on autism, you would think that they would be more concerned and recommend an evaluation - then to just say wait and see, knowing how critical early interventions is. I'm shocked !. the baby I watch twice a week - 20 months old has no speech. the few words he says only I or his mom can understand and he doesn't apply it to real life. He will say apple - but not clear, but not when he sees the apply. He says no - even if he wants something. he doesn't point at things, he doesn't ask what's that ?

sometimes, he responds to his name but most of the time he doesn't. he can be playing with a toy and laughing and that next second, he will cry and scream as if he got hurt really bad and nothing anyone can do to calm him down until he is finished with that crying mood. he will try to hurt you if you tell him " No ". even if its for his safety. He will throw himself on the floor and bang his head or hit me or try to pinch me or hit himself. WOW!. His mother said his doctor is not concerned so she isn't either. I've asked her several times to get him a speech therapist and she said her doctor said to wait till he is 2 that her son didn't talk right away either. Now, the mom knows about his moods and crying situation and says the way she handles that is she will put him into his room in his crib ???. I guess if she avoids the situation, this makes everything OK. the kid gets exhausted from his

screaming/crying episode that he falls asleep. then she says - he was tired. I'm the type of person that if I see a concern I try to get a professional to help and give strategy's. if that person doesn't get it, he/she's not the right person. **I guess I would feel the same as you - what is the point of explaining his DX to his ped doctor if all he/she said was to wait. ****BUT - I will still want him to have his DX documented and added to my child's medical folder. because, later on, if you need a medical P.E. for anything (camp, school, scouts, activities) you want his DX added to that PE form as a medical alert for anyone working with your child. right now, all I'm doing is keep repeating my concerns to those working with my son, until they have no choice but to get it. I think the schools see it - but say they don't, because of their budget. as far as the

doctors - some are just ignorant. wonder how well they did in college ?. Never give up ! follow your instincts, they are always right. I just wish there was a more direct way to describe this situation then to elaborate all this (about speech). also, the school is suppose to provide those services for your child. " social skills, O.T., P.T., speech, etc.... put that request in writing. If the school tested your child and they say he's the top roll model of his class - request an outside evaluation and take your child to another state that has no connections with your school. look at that like a 2nd opinion. then document it with your school and request services in writing. best wishes and please post how everything goes. Rose kellypywtorak <kellypywtorak@...> wrote: >> Hi ,> My son also doesn't let me know when he's hungry or thirsty unless it's of urgent need. He is like this with anything he needs, like to use the bathroom, help, someone is annoying him, he doesn't tell them to stop until it gets so bad he just s c r e e m s !!!!. This is all what I'm trying to explain to his speech teacher. but because my son has such a Strong - large vocabulary, she didn't get what my urgent concern was. I've been giving her little examples,

but I'm not quite sure she gets it.> Please let me know how you explained your sons situation to the professionals. Do they get it ? do you have a speech therapist working with him on this ? My point is, how did you describe this to others ?. I've been on this site for a few years and haven't heard anyone decribe this problem with our kids not being able to verbalize their needs like we just described. I wonder what you and others are doing to help their kids with this ???> Thanks> Rose> >Hi Rose,That is a good question! I wish I had a good answer for you. Unfortunately I really couldn't get that point across to his pediatrician or to the speech therapist at school when she recently completed her evaluation. She said he passed with flying colors, not just in pronunciation but in semantic language. Elijah demonstrated the behavior in front of our pediatrician when he was 4 (stood up

on a chair & screamed while fighting with sis in the doc's office) and I said "I'm concerned about behaviors like this! He's doing this a lot." The Ped. said "perfectly normal for his age". In fact, I still haven't told the ped we got a diagnosis from 2 professionals. Why bother? He's not going to help us get services from the school or regional center. Instead of referring us to the psychologist, his advice was to wait and see what his kindergarten teacher thought about Elijah's behavior in school. We ignored his advice! The psychologist we worked with didn't recommend speech therapy for him, but she did suggest social skills groups which should help a little with communication skills, and OT for the sensory issues and weakness/motor issues. I think it's supposed to help with "body awareness" like the feeling of needing to go to the restroom or get a drink.We're about to start the OT , which our

insurance will cover 80%, and we're thinking about the social skills groups (no insurance billing so $$). We haven't had any type of therapy yet at all. Part of the problem is that he appears to do so well at school & childcare, but then he later tells me that people were mean or annoying him, or that he didn't get enough to eat, or had an accident. He is not good at making his needs known. I can see this presenting a problem in school in the future when he doesn't understand what the class is doing. He won't ask for help. I hope to God he knows to get help from staff if he ever gets itchy or gets a rash at childcare or school.

[Guest guest]

, After my kids go to bed, I'm going to look that up and see if it relates to my sons situation. I hope that's it. instead of elaborating, I can just say he has difficulty with -----expressive language disorder !. thanks for posting this. I'll look it up ASAP HUGS Rosekellypywtorak <kellypywtorak@...> wrote: I just thought of the name for it. It's probably expressive languagedisorder, although we haven't worked with a SLP yet. Worth lookingup,

but I have to run now.I'm > > what have you been doing to try to get him to >

ask for a snack <> ? before he goes into that tantrum. Does your son have a good> vocabulary ?. Can he talk to you about something he likes and is> interested in ? See, my son can talk your ears off. that's why I'm> trying to figure out why he can't tell you he needs something, or for> someone to stop annoying him. etc...> > My understanding of all this stuff is: 1) AS kids have a difficult> time "knowing what other people know". That is, they may think you> know what they know even if they haven't told you or they may not> realize that you might know something they don't. 2) AS kids have a> difficult time identifying their own and other's thoughts and> motivations. It isn't clear to me whether they don't know or can't> express it. I think some of both. 3) They have a difficult time with> "self talk", that is, the process of talking to oneself in one's head> so you

can think things through and make decisions.> > I think my kids are very intuitive and don't think in words as much as> the rest of us. And I think we all go through this as part of growing> up to some extent, autistics are just more extreme.> > Ruth>

[Guest guest]

, I will continue to check out other sites. but this was the first thing I found. I'm going to ask his social skills teacher if this sounds right to describe my son's language. Expressive language disorder From Wikipedia, the free encyclopedia Jump to: navigation, search Expressive language disorderClassification and external resources ICD-10 F80.1 ICD-9 315.31 Expressive language disorder (DSM 315.31) is a communication disorder which is

characterised by having a limited vocabulary and grasp of grammar. It is a general language impairment that puts the person onto the level of a younger person and also a person can be as young as 2 or 3 years old with the disorder. As well as present speech production, very often, someone will have difficulty remembering things. This memory problem is only disturbing for speech; non-verbal or non-linguistically based memory will be unimpaired. Expressive language disorder affects work and schooling in many ways. It is usually treated by specific speech therapy, and usually cannot be expected to go away on its own. Care must be taken to distinguish

expressive language disorder from other communication disorders, sensory-motor disturbances, intellectual disability and/or environmental deprivation (see DSM-IV-TR criterion D). These factors affect a person's speech and writing to certain predictable extents, and with certain differences.Rose <beachbodytan2002@...> wrote: , After my kids go to bed, I'm going to look that up and see if it relates to my sons situation. I hope that's it. instead of elaborating, I can just say he has difficulty with -----expressive language disorder !. thanks for posting this. I'll look it up ASAP HUGS Rosekellypywtorak <kellypywtorak > wrote: I just thought of the name for it. It's probably expressive languagedisorder, although we haven't worked with a SLP yet. Worth lookingup, but I have to run now.I'm > > what have you been doing to try to get him to > ask for a snack <> ? before he goes into that tantrum. Does your son have a good> vocabulary ?. Can he talk to you about something he likes and is> interested in ? See, my son can talk your ears off. that's why I'm> trying to figure out why he can't tell you he

needs something, or for> someone to stop annoying him. etc...> > My understanding of all this stuff is: 1) AS kids have a difficult> time "knowing what other people know". That is, they may think you> know what they know even if they haven't told you or they may not> realize that you might know something they don't. 2) AS kids have a> difficult time identifying their own and other's thoughts and> motivations. It isn't clear to me whether they don't know or can't> express it. I think some of both. 3) They have a difficult time with> "self talk", that is, the process of talking to oneself in one's head> so you can think things through and make decisions.> > I think my kids are very intuitive and don't think in words as much as> the rest of us. And I think we all go through this as part of growing> up to some extent, autistics are just more extreme.> >

Ruth>

[Guest guest]

> >

> > Hi ,

> > My son also doesn't let me know when he's hungry or thirsty >

I've been on this site for a few years and haven't heard anyone

decribe

> this problem with our kids not being able to verbalize their needs

like

> we just described. I wonder what you and others are doing to help

their

> kids with this ???

> > Thanks

> > Rose

This is my daughter's most significant problem. She describes it

like being able to hear the words in her ears, but not being able to

get them out her mouth, sometimes; other times she says her mind goes

blank, and she can't think of what to say.

I think it's a form of complex echolalia. For my son, who is severe,

he will literally echo what he hears from Youtube or videos and

appropriate it into his actual language. That is the only language

he has. For example he has memorized a short segment where a

character is sad, from Youtube. So when he's sad he will act it

out: " Are you sad? Yes, I'm sad, boo hoo hoo, I'm sad. " He is

genuinely sad, but that is the only way he has to express it. Most

people here are probably familiar with that level of echolalia.

With my daughter, her language is actually just as scripted as my

son's, but being extremely high functioning, the echolalia is quite

complex. Everything she says comes from having memorized it

previously, or heard it on TV or a video, or read it in a book. She

has almost NO truly spontaneous language that comes from the same

place that NT people's language does. She uses language in exactly

the same way my son does - grabs various snippets of things she's

memorized and strings them together to make conversational language.

She is also a brilliant actress. She mimics the intonation,

inflection, pitch and facial expressions of what she's seen in other

people, videos, TV shows and books. So by the time her sentences

come out in social or school settings, they are flawless and

indistinguishable, but it takes a HUGE amount of effort that no one

actually ever realizes. That's why she's so exhausted after school

every day, can't handle the slightest conversation for the rest of

the evening, and why she spends so much time watching social shows on

Disney channel or pacing rooms and talking to herself. She's

actually practing social conversations over and over. Like she'll be

talking to her imaginary friends and they're working out a conflict

about a birthday present, and she repeats the same phrase about 10

times with a variety of pauses, tones, inflections, etc. until she

gets it right. She is literally practing talking for hours every

night.

There is no script for spontaneous, unexpected events that put her in

conflict with what her rigid, concrete mind firmly believes

she's " supposed " to be - for instance, she doesn't have an acceptable

script for a person who needs to go to the bathroom when it's not

bathroom time, and she's never " seen " versions of the inner feelings

and sensations she experiences that NT people can easily translate

into language. Plus, she's portraying only her vulnerable self in

those instances, not one of the characters she's memorized. It feels

impossible for her to find the words to describe the sensations or

needs she feels, and scary to possibly interject herself into the

path of an authority figure who might deny her request, not

understand her words, or reprimand her for asking. (There's a lot

written about autism and authority figures too, and talking to them

in general is a source of anxiety for her.)

I also think that in the presence of anxiety, she loses a lot of her

language ability. So with the combination of more anxiety than most

kids in that situation, no pre-rehearsed or memorized script, and not

a clear idea of what it is that she even feels/needs, she becomes

mute.

Finally - it's very complex - there's the component of failure of

empathy. That can go in both directions - too little, or too much.

Both my kids are VERY sensitive to other people's needs, wishes and

moods. I think in that frozen anxiety state of not being able to

express herself, what my daughter does is sort of intuit what she

thinks the other person might want or be expecting to hear (this may

or may not be accurate and is usually based on what she thinks

a " good " kid would do/say in that situation.) She will usually smile

and say she's fine or doesn't need anything or continue to do what

the other kids are doing despite something like severe need to go to

the bathroom, injury she's too afraid to tell anyone she just got,

etc., act out the role of a happy child who doesn't need anything

extra, and fall apart when she gets home and gets out of character.

That is my analysis and take on it after years of study and

frustration... does it sound like anyone else's child?

Amy

[Guest guest]

Hi ,

We also have the same issues espcially with being thirsty. Gage will not ask for a drink and then when he goes to get one, he drains the whole cup so I have started just keeping a drink available throughout the day and reminding him to take a drink. The same goes for food too so I just put a piece of fruit or his favorite vegetables in front of him and this also helps decrease his negative outbursts espcially in the afternoons and evenings.

Gage used to have terrible meltdowns when he came home from school but once we figured out that he couldn't handle all the noise and activities going on in the K-4 and Kindergarten and was unable to pay attention, the school and us agreed that he needed to be in the Learning Resource Room where it was very quiet and one on one to help him focus and pay attention. This eliminated the meltdowns after school. Most people don't realize how hard our kids work to keep it together as much as they do even when it seems like they are falling apart and all because they can't express their emotions or wants/needs to others.

Sue

From: Amy <noahsmom7898@...>Subject: ( ) Re: off topic question - Date: Monday, July 21, 2008, 10:12 PM

> >> > Hi ,> > My son also doesn't let me know when he's hungry or thirsty > I've been on this site for a few years and haven't heard anyone decribe> this problem with our kids not being able to verbalize their needs like> we just described. I wonder what you and others are doing to help their> kids with this ???> > Thanks> > RoseThis is my daughter's most significant problem. She describes it like being able to hear the words in her ears, but not being able to get them out her mouth, sometimes; other times she says her mind goes blank, and she can't think of what to say.I think it's a form of complex echolalia. For my son, who is severe, he will literally echo what he hears from Youtube or videos and appropriate it into his actual language. That is the only language he has. For example he has memorized a short segment

where a character is sad, from Youtube. So when he's sad he will act it out: "Are you sad? Yes, I'm sad, boo hoo hoo, I'm sad." He is genuinely sad, but that is the only way he has to express it. Most people here are probably familiar with that level of echolalia.With my daughter, her language is actually just as scripted as my son's, but being extremely high functioning, the echolalia is quite complex. Everything she says comes from having memorized it previously, or heard it on TV or a video, or read it in a book. She has almost NO truly spontaneous language that comes from the same place that NT people's language does. She uses language in exactly the same way my son does - grabs various snippets of things she's memorized and strings them together to make conversational language. She is also a brilliant actress. She mimics the intonation, inflection, pitch and facial expressions of what

she's seen in other people, videos, TV shows and books. So by the time her sentences come out in social or school settings, they are flawless and indistinguishable, but it takes a HUGE amount of effort that no one actually ever realizes. That's why she's so exhausted after school every day, can't handle the slightest conversation for the rest of the evening, and why she spends so much time watching social shows on Disney channel or pacing rooms and talking to herself. She's actually practing social conversations over and over. Like she'll be talking to her imaginary friends and they're working out a conflict about a birthday present, and she repeats the same phrase about 10 times with a variety of pauses, tones, inflections, etc. until she gets it right. She is literally practing talking for hours every night.There is no script for spontaneous, unexpected events that put her in conflict

with what her rigid, concrete mind firmly believes she's "supposed" to be - for instance, she doesn't have an acceptable script for a person who needs to go to the bathroom when it's not bathroom time, and she's never "seen" versions of the inner feelings and sensations she experiences that NT people can easily translate into language. Plus, she's portraying only her vulnerable self in those instances, not one of the characters she's memorized. It feels impossible for her to find the words to describe the sensations or needs she feels, and scary to possibly interject herself into the path of an authority figure who might deny her request, not understand her words, or reprimand her for asking. (There's a lot written about autism and authority figures too, and talking to them in general is a source of anxiety for her.) I also think that in the presence of anxiety, she loses a lot of her language

ability. So with the combination of more anxiety than most kids in that situation, no pre-rehearsed or memorized script, and not a clear idea of what it is that she even feels/needs, she becomes mute. Finally - it's very complex - there's the component of failure of empathy. That can go in both directions - too little, or too much. Both my kids are VERY sensitive to other people's needs, wishes and moods. I think in that frozen anxiety state of not being able to express herself, what my daughter does is sort of intuit what she thinks the other person might want or be expecting to hear (this may or may not be accurate and is usually based on what she thinks a "good" kid would do/say in that situation.) She will usually smile and say she's fine or doesn't need anything or continue to do what the other kids are doing despite something like severe need to go to the bathroom, injury she's too afraid

to tell anyone she just got, etc., act out the role of a happy child who doesn't need anything extra, and fall apart when she gets home and gets out of character.That is my analysis and take on it after years of study and frustration. .. does it sound like anyone else's child?Amy

[Guest guest]

> > >(Rose said) My son also doesn't let me know when he's hungry or thirsty > > I've been on this site for a few years and haven't heard anyone > decribe> > this problem with our kids not being able to verbalize their needs > like> > we just described. >From Amy-- > This is my daughter's most significant problem. She describes it > like being able to hear the words in her ears, but not being able to > get them out her mouth, sometimes; other times she says her mind goes > blank, and she can't think of what to say....> I also think that in the presence of anxiety, she loses a lot of her > language ability. So with the combination of more anxiety than most > kids in that situation, no pre-rehearsed or memorized script, and not > a clear idea of what it is that she even feels/needs, she becomes > mute. > That is my analysis and take on it after years of study and > frustration... does it sound like anyone else's child?> > Amy>Wow, Amy! Very well said, and I think you described my son's language problem to a T. I googled 'expressive language problems' or something like that, and there is actually a diagnosis of expressive language disorder. The site even lists the ICD code for insurance. Elijah has not had any speech therapy yet because the school said he passed their testing and we're focusing on private OT for now. Financially we can only do that right now. But I'm very curious--what treatment do speech therapists do for expressive language problems? Is there any therapy that can help?

[Guest guest]

> like that, and there is actually a diagnosis of expressive language

> disorder.

Yeah, I had identified it as Expressive Language Disorder or Semantic

Pragmatic Disorder early on, before I realized the sum total of

everything was pretty much just HFA. But it's VERY hard to convince

anyone that a kid so verbal has a " language " disorder.

But I'm very curious--what treatment do speech

> therapists do for expressive language problems? Is there any therapy

> that can help?

I don't think that speech therapy per se can, for my daughter at least,

because technically her speech is at age level. I have taken her to a

child development center for therapy - sort of like encouraging her to

assert herself, be more comfortable expressing her feelings - but it

frustrates and saddens her because the problem really isn't

fundamentally emotional, it's neurological. Traditional therapy sends

the message to her that I think if she just talks to someone else it

will go away I guess. She hasn't done well there, at any rate, and

sort of fakes her way through the appointments - the 1:1 conversations

are very stressful.

Biomedical interventions help to the extent that they control her moods

and regulate her sensory issues and anxiety, which exacerbate the

problem. Strangely OT type stuff can help a little, because the more

powerful and physically strong/calm she feels, that seems to have an

impact.

The best thing I've found so far is social stories and rehearsing what

to say in unexpected or difficult situations. She still can't do it

most of the time when she's anxious but it has helped reassure her to

go over the story and know she's understood and not alone, and it helps

sometimes if we've practiced what to say (but not often.)

Last year when her school was giving us such a hard time, someone

pulled her out of class once to ask if she had a problem in PE and

music as her mom was " claiming. " She usually always said no, she

didn't have a problem, to everyone but me. In this instance she was

able to say that she didn't like music class, it was too loud. She

told me the way she did that was close her eyes and pretend like she

was talking to me instead of the stranger. We've tried that approach

and again most of the time it doesn't work... but occasionally it does,

but it takes its toll in anxiety, later.

The school counselor would report me for this I'm sure, but I'm sensing

more and more that I might just need to shelter her somewhat until

she's older, and can have more control over her activities and

environment. The best option might be that she can choose to place

herself mostly in tolerable situations, rather than be able to learn to

express her needs when they're different than other people or

misunderstood.

Amy

>

[Guest guest]

If you disagree with the school's testing, you can request an "independent educational evaluation" (IEE) at their expense. This means you and the school find a neutral 3rd party evaluator to do an evaluation and this can help settle a dispute as to whether the child has a specific problem or not. Some school staff may not have the training or knowledge necessary to evaluate kids with problems as kids with AS/HFA have. This can be a way to get an evaluation in to the MFE/ETR that better captures the needs of this child. Put your request in writing (as always!).

I have used IEE's myself several times with good results. But remember, there is no guarantee that an independent evaluator will agree with you. But it is a good way to get an independent opinion on the situation.

As for expressive language delays, a ST should definitely be able to work on these problems. Both of my two ds's with HFA have expressive and receptive language delays. This is a speech delay.

RoxannaAutism Happens

( ) Re: off topic question -

> > >(Rose said) My son also doesn't let me know when he's hungry or thirsty > > I've been on this site for a few years and haven't heard anyone > decribe> > this problem with our kids not being able to verbalize their needs > like> > we just described. >From Amy-- > This is my daughter's most significant problem. She describes it > like being able to hear the words in her ears, but not being able to > get them out her mouth, sometimes; other times she says her mind goes > blank, and she can't think of what to say....> I also think that in the presence of anxiety, she loses a lot of her > language ability. So with the combination of more anxiety than most > kids in that situation, no pre-rehearsed or memorized script, and not > a clear idea of what it is that she even feels/needs, she becomes > mute. > That is my analysis and take on it after years of study and > frustration... does it sound like anyone else's child?> > Amy>Wow, Amy! Very well said, and I think you described my son's language problem to a T. I googled 'expressive language problems' or something like that, and there is actually a diagnosis of expressive language disorder. The site even lists the ICD code for insurance. Elijah has not had any speech therapy yet because the school said he passed their testing and we're focusing on private OT for now. Financially we can only do that right now. But I'm very curious--what treatment do speech therapists do for expressive language problems? Is there any therapy that can help?No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.5/1568 - Release Date: 7/23/2008 6:55 AM

[Guest guest]

Amy, how do you feel about that last post when discussing about kids learning scripts from TV ?. My son does that and applies it to life situations. most times it fits right into the conversation. (sometime not) Is this something that they are self teaching themselves? at a later time when I asked my son if he learns scripts from TV - he'll say no. but when I give an example of something that has happened. He'll say, I don't know why I did that. that leads me to think he's not aware of doing it. Also, when he talks to himself. he is roll playing it to himself first to hear how it sounds before talking to others. Its actually like he's in a play and learning his part on what to say. He is still getting speech but to help with his writing skills. ( I was told this is all connected, speech, writing, reading & spelling) but like you said, the school doesn't see it because he has a

strong vocabulary. Also, same with us, if I roll play it with him first. He does awesome !.. but I'm not always prepared to roll play everything. Some things, I don't know what is going to happen until it does. but for the next time, we can roll play it, and he'll know just what to say... But what do you think of him mimicking parts from TV ? RoseAmy <noahsmom7898@...> wrote: > like that, and there is actually a diagnosis of expressive language> disorder. Yeah, I had

identified it as Expressive Language Disorder or Semantic Pragmatic Disorder early on, before I realized the sum total of everything was pretty much just HFA. But it's VERY hard to convince anyone that a kid so verbal has a "language" disorder.But I'm very curious--what treatment do speech> therapists do for expressive language problems? Is there any therapy> that can help?I don't think that speech therapy per se can, for my daughter at least, because technically her speech is at age level. I have taken her to a child development center for therapy - sort of like encouraging her to assert herself, be more comfortable expressing her feelings - but it frustrates and saddens her because the problem really isn't fundamentally emotional, it's neurological. Traditional therapy sends the message to her that I think if she just talks to someone else it will go away I guess. She hasn't done well there, at any

rate, and sort of fakes her way through the appointments - the 1:1 conversations are very stressful.Biomedical interventions help to the extent that they control her moods and regulate her sensory issues and anxiety, which exacerbate the problem. Strangely OT type stuff can help a little, because the more powerful and physically strong/calm she feels, that seems to have an impact.The best thing I've found so far is social stories and rehearsing what to say in unexpected or difficult situations. She still can't do it most of the time when she's anxious but it has helped reassure her to go over the story and know she's understood and not alone, and it helps sometimes if we've practiced what to say (but not often.)Last year when her school was giving us such a hard time, someone pulled her out of class once to ask if she had a problem in PE and music as her mom was "claiming." She usually always said no,

she didn't have a problem, to everyone but me. In this instance she was able to say that she didn't like music class, it was too loud. She told me the way she did that was close her eyes and pretend like she was talking to me instead of the stranger. We've tried that approach and again most of the time it doesn't work... but occasionally it does, but it takes its toll in anxiety, later.The school counselor would report me for this I'm sure, but I'm sensing more and more that I might just need to shelter her somewhat until she's older, and can have more control over her activities and environment. The best option might be that she can choose to place herself mostly in tolerable situations, rather than be able to learn to express her needs when they're different than other people or misunderstood.Amy>

[Guest guest]

I hear what you are saying....my son would never tell the teachers or principal anything....when he was called up to the principal ...he just nodded...they are afraid....then he comes home and tells me the real story. Or, he doesn't tell the teachers he can't concentrate with the noise.....and his teacher said ...well he wrote the story on the computer with the party going on....So, when I asked him how...he said...easy mom...I covered my ears and thought and then typed. Typing on the computer did help him too. If he had to handwrite the story....I am not sure he could have done it.

I also know my son won't ask for help ...even when he doesn't understand. The teacher asked him one time......do you understand, do you need any help...he said no...and he came home and didn't know what to do. I think he is afraid other will laugh at him that he doesn't understand or the teacher will think he is stupid or the kids will. I know my son would say "I 'm stupid" and he really thought he was.

Jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: Amy <noahsmom7898@...>Subject: ( ) Re: off topic question - Date: Tuesday, July 22, 2008, 9:40 PM

> like that, and there is actually a diagnosis of expressive language> disorder. Yeah, I had identified it as Expressive Language Disorder or Semantic Pragmatic Disorder early on, before I realized the sum total of everything was pretty much just HFA. But it's VERY hard to convince anyone that a kid so verbal has a "language" disorder.But I'm very curious--what treatment do speech> therapists do for expressive language problems? Is there any therapy> that can help?I don't think that speech therapy per se can, for my daughter at least, because technically her speech is at age level. I have taken her to a child development center for therapy - sort of like encouraging her to assert herself, be more comfortable expressing her feelings - but it frustrates and saddens her because the problem really isn't fundamentally emotional, it's neurological. Traditional therapy sends

the message to her that I think if she just talks to someone else it will go away I guess. She hasn't done well there, at any rate, and sort of fakes her way through the appointments - the 1:1 conversations are very stressful.Biomedical interventions help to the extent that they control her moods and regulate her sensory issues and anxiety, which exacerbate the problem. Strangely OT type stuff can help a little, because the more powerful and physically strong/calm she feels, that seems to have an impact.The best thing I've found so far is social stories and rehearsing what to say in unexpected or difficult situations. She still can't do it most of the time when she's anxious but it has helped reassure her to go over the story and know she's understood and not alone, and it helps sometimes if we've practiced what to say (but not often.)Last year when her school was giving us such a

hard time, someone pulled her out of class once to ask if she had a problem in PE and music as her mom was "claiming." She usually always said no, she didn't have a problem, to everyone but me. In this instance she was able to say that she didn't like music class, it was too loud. She told me the way she did that was close her eyes and pretend like she was talking to me instead of the stranger. We've tried that approach and again most of the time it doesn't work... but occasionally it does, but it takes its toll in anxiety, later.The school counselor would report me for this I'm sure, but I'm sensing more and more that I might just need to shelter her somewhat until she's older, and can have more control over her activities and environment. The best option might be that she can choose to place herself mostly in tolerable situations, rather than be able to learn to express her needs when they're

different than other people or misunderstood.Amy>

[Guest guest]

I do this too. I try to do it

nonchalantly in casual situations, like when I am fixing dinner or driving, so

it doesn’t seem like I am attacking him, but I will recall situations

that I witnessed when he is with neighbors or friends and offer suggestions on

how something could better be handled. I am afraid he may get to a point

he won’t be so open to this sort of help. He knows he needs some

help with social skills because sometimes he finds himself without

friends. However, not always due to him, just because pickings are slim

at his school and because we just haven’t met enough folks yet.

Regina

From:

[mailto: ] On Behalf Of Amy

Sent: Tuesday, July 22, 2008 8:41

PM

To:

Subject: ( ) Re:

off topic question -

> The best thing I've found so far is social stories and rehearsing

what

to say in unexpected or difficult situations. She still can't do it

most of the time when she's anxious but it has helped reassure her to

go over the story and know she's understood and not alone, and it helps

sometimes if we've practiced what to say (but not often

[Guest guest]

Next time, try to retell the situation and ask him what went wrong and what thing(s) he could have done or said differently to change the situation. This is a method developed by Dr. Lavoie called, "Social Autopsy." It is much better than a social story. Read more about it here --> http://www.ricklavoie.com/competart.html

RoxannaAutism Happens

RE: ( ) Re: off topic question -

I do this too. I try to do it nonchalantly in casual situations, like when I am fixing dinner or driving, so it doesn’t seem like I am attacking him, but I will recall situations that I witnessed when he is with neighbors or friends and offer suggestions on how something could better be handled. I am afraid he may get to a point he won’t be so open to this sort of help. He knows he needs some help with social skills because sometimes he finds himself without friends. However, not always due to him, just because pickings are slim at his school and because we just haven’t met enough folks yet.

Regina

From: [mailto: ] On Behalf Of AmySent: Tuesday, July 22, 2008 8:41 PM Subject: ( ) Re: off topic question -

> The best thing I've found so far is social stories and rehearsing what to say in unexpected or difficult situations. She still can't do it most of the time when she's anxious but it has helped reassure her to go over the story and know she's understood and not alone, and it helps sometimes if we've practiced what to say (but not often

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.5/1570 - Release Date: 7/24/2008 6:59 AM

[Guest guest]

Roxanna, this is great advice on Social Autopsy!

We are still coaching and coaxing and counseling even tho he is 23!

And now it is by phone, long distance. He had an incident with a girl

just yesterday and I felt at such a loss to know what to say or do.

Some of it is his communication skills. The whole time he

is " telling " his story, I am trying to guess what " really " happened.

Not, in this case, that he's lying, but that somebody was probably

trying to dupe him or fool him and he couldn't read the signals.

The Lavoie article is not specifically directed at younger children.

The problems get more complex as they get older and are NOT addressed

by professional, in my opinion. ALmost all articles, etc are written

for grammar school age.

I never thought about saying, " So this is what I understand to have

happened? " and how he could handle it next time.

I can't wait to talk to him again now and try it.

Thanks,

Sue in TN

>

> Next time, try to retell the situation and ask him what went wrong

and what thing(s) he could have done or said differently to change

the situation. This is a method developed by Dr. Lavoie

called, " Social Autopsy. " It is much better than a social story.

Read more about it here --> http://www.ricklavoie.com/competart.html

>

> Roxanna

> Autism Happens

> ( ) Re: off topic question -

>

>

>

> > The best thing I've found so far is social stories and

rehearsing what

> to say in unexpected or difficult situations. She still can't do

it

> most of the time when she's anxious but it has helped reassure

her to

> go over the story and know she's understood and not alone, and it

helps

> sometimes if we've practiced what to say (but not often

>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.138 / Virus Database: 270.5.5/1570 - Release Date:

7/24/2008 6:59 AM

>