Re: off topic question - Ruth

[Guest guest]

Ruth, your last paragraph is the only thing I am doing with my son right now. I try to get him to recognize it and then tell him to tell me what he wants. But this allergic rash was that big red flag... and there goes the > what if 's >. He can have blood running down his leg and won't tell me about it. I find the bloody tissues all over. Now, I tell him he has to tell me if he sees blood, or if he's itchy. and God knows what else. that's the problem, I don't know until it happens. how would I ?. I agree with what you said about the professionals. if my son is with a professional and I don't see progress, that's a problem. Now his therapist is awesome ! I see so much process with my son with that professional, I just hope it doesn't want to retire soon. He can't be replaced...the social skills teacher is another professional that is helping so much..but the therapist is only once

a week and s.s. once a month. and yes, it does take a long, long time. For your son with not knowing when he's hungry. can you get him a watch minder and set if for maybe every 4 hrs. reminding him to eat and every 2 hrs. for a snack and drink ? ( I guess you would know how many hours apart to set it ). Or, you can get a Walmart watch that you can set it to beep every so often and that's his prompt to snack/drink or eat . I let me son ride his bike and he has to wear a watch. every 1/2 hr. he has to come home, right up to me and I will tell him OK, come back in another 1/2 hr. Would that work with drinks and snacks ? Just a quick thought. I'm still watching this rash on my son come and go. Thanks for responding, I do see this improving. but we"re still working on organization, which is another big issue for us... Roser_woman2 <me2ruth@...>

wrote: > Please let me know how you explained your sons situation to theprofessionals. Do they get it ? do you have a speech therapistworking with him on this ? My point is, how did you describe this toothers ?. 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 reachsome people. Sometimes,

after they work with the kids a few times, ifthey have good imagination and good abstract thinking skills, they maystart getting it. But sometimes, they just can't wrap their brainaround it, and you have to find another professional. It is a bummerwhen it is a teacher and you can't switch teachers.> I've been on this site for a few years and haven't heard anyonedecribe this problem with our kids not being able to verbalize theirneeds like we just described. I wonder what you and others are doingto help their kids with this ???I don't know what you can do besides try to notice it, bring it totheir attention and encourage them to think about it. My son, who is13, has gotten better with age. Every year, he gets better; it isjust 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. Mybig worry with him is eating. For a long time, he

couldn't tell thedifference between a tummy ache and being hungry, and he still justdoesn't notice being hungry too much and doesn't bother eating unlesssomeone makes him something.Ruth

[Guest guest]

Ruth, that does make sense !. one autism professional also said what you wrote: that its unclear if they don't know, or can't express it. His speech teacher feels that he does know, but is too shy to express it. My son isn't shy at all !. *that is where I believe she means well, but she doesn't understand HFA at all.. . I'm going to save what you just wrote as a personal reminder to me...that makes so much sense and that was very helpful. Thanks Roser_woman2 <me2ruth@...> wrote: > 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 goodvocabulary ?. Can he talk to you about something he likes and isinterested in ? See, my son can talk your ears off. that's why I'mtrying to figure out why he can't tell you he needs something, or forsomeone to stop annoying him. etc...My understanding of all this stuff is: 1) AS kids have a difficulttime "knowing what other people know". That is, they may think youknow what they know even if they haven't told you or they may notrealize that you might know something they don't. 2) AS kids have adifficult time identifying their own and other's thoughts

andmotivations. It isn't clear to me whether they don't know or can'texpress 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 headso you can think things through and make decisions.I think my kids are very intuitive and don't think in words as much asthe rest of us. And I think we all go through this as part of growingup to some extent, autistics are just more extreme.Ruth

[Guest guest]

> For your son with not knowing when he's hungry. can you get him a

watch minder and set if for maybe every 4 hrs. reminding him to eat

and every 2 hrs. for a snack and drink ? ( I guess you would know how

many hours apart to set it ). Or, you can get a Walmart watch that

you can set it to beep every so often and that's his prompt to

snack/drink or eat .

My son wouldn't do this. I'd have to be the one to watch the timer

and take some kind of action. Which leads to another issue. He also

has developmental coordination disorder, so he avoids physically doing

things. And he's very stubborn. So, we have this very bad

combination of communication problems, lack of desire to physically do

things, and very independent-minded. And he has working memory

problems on top of that. He'd never watch his watch and come home

every half hour! Count yourself lucky on that one.

Ruth

[Guest guest]

My sons found OUT this information / how they view and see things during a test through speech and language with pragmatic speech, which someone on here suggested. One of them (my seven year old) has it all and so it is a matter of us teaching him the tools to utilize these things; the fourteen year old struggled in some areas, but that was a huge help to us as parents because now we know what they do and don't (for example, the seven year old CAN read your face and say how you feel / finish a sentence to describe you, etc.; they time these things, grade / however it is done it based on what type of answer they gave, etc.; my fourteen year old struggled a lot more with this. My seven year old was dx'ed at five, so he has gotten services for AS specifically where the 14 year old did not for a long time! AND, both had therapy 18 months on and off, when they started being aggressive; play therapy, which greatly helped the now seven year old.

So, I would suggest considering a speech and language assessment at your nearest OT office, to include pragmatic speech; that would help you to know where to start, and even get some services, potentially, at school and / or through pre-school programming.

Ruthie

From: beachbodytan2002@...Date: Mon, 30 Jun 2008 18:04:55 -0700Subject: Re: ( ) Re: off topic question - Ruth

Ruth, that does make sense !. one autism professional also said what you wrote: that its unclear if they don't know, or can't express it. His speech teacher feels that he does know, but is too shy to express it. My son isn't shy at all !. *that is where I believe she means well, but she doesn't understand HFA at all.. . I'm going to save what you just wrote as a personal reminder to me...that makes so much sense and that was very helpful.

Thanks

Roser_woman2 <me2ruth > wrote:

> 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 goodvocabulary ?. Can he talk to you about something he likes and isinterested in ? See, my son can talk your ears off. that's why I'mtrying to figure out why he can't tell you he needs something, or forsomeone to stop annoying him. etc...My understanding of all this stuff is: 1) AS kids have a difficulttime "knowing what other people know". That is, they may think youknow what they know even if they haven't told you or they may notrealize that you might know something they don't. 2) AS kids have adifficult time identifying their own and other's thoughts andmotivations. It isn't clear to me whether they don't know or can'texpress 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 headso you can think things through and make decisions.I think my kids are very intuitive and don't think in words as much asthe rest of us. And I think we all go through this as part of growingup to some extent, autistics are just more extreme.Ruth

[Guest guest]

Ruth, it did take lots of time before that worked. but I'm so glad it now does. I know another mom who will blow a loud whistle and her kids return home fast. they were shown how far they can go from their homes. I started with my son with a walkie talkie. he took that with him whenever he would ride his bike. now we do the watch thing every 1/2 hour. if not, my son would be lost or running around with the wrong kids. you also have your hands full !. but like you posted in one of your post. I also believe with the strategies, being consistent, many prompts and maturity, they will get it. at least enough to succeed. Roser_woman2 <me2ruth@...> wrote: > For your son with not knowing when he's hungry. can you get him awatch minder and set if for maybe every 4 hrs. reminding him to eatand every 2 hrs. for a snack and drink ? ( I guess you would know howmany hours apart to set it ). Or, you can get a Walmart watch thatyou can set it to beep every so often and that's his prompt tosnack/drink or eat . My son wouldn't do this. I'd have to be the one to watch the timerand take some kind of action. Which leads to another issue. He alsohas developmental coordination

disorder, so he avoids physically doingthings. And he's very stubborn. So, we have this very badcombination of communication problems, lack of desire to physically dothings, and very independent-minded. And he has working memoryproblems on top of that. He'd never watch his watch and come homeevery half hour! Count yourself lucky on that one.Ruth

[Guest guest]

Ruth, with my son, he has been receiving speech since he was 18 months old. at 3, he also had a Dx of 'speech impaired'. He didn't speak till he was approx 3. And that was only to answer your questions with limited vocabulary. but now at 11, his vocabulary is outstanding. the reason why its so hard to test him with a pragmatic testing is because they use pics and he memorizes them all. He can repeat back everything the right way including reading the " pic " face expressions. > she is sad, happy, mad, > etc... but doesn't apply it to real life situations. I said to the speech teacher - Am I to give the kids the pics so they can hold them up when they are feeling angry with him ?. because he doesn't read their face expressions when playing, because he doesn't look at their faces. but in a cute office with just him & the speech teacher, sitting down at her table with her telling him to keep

focused and look at the pics, he gets them all right. We also had a language assessment done and a CAPT testing and then repeated it again a year later without any progress. they said something " not organic " is going on and recommend that he continues speech - and this speech lady doesn't understand my son or his HFA - I have to point everything out to her which I feel she should be pointing them out to me...the school did offer to meet with my son's Social Skills teacher - which he is a autism specialist and an excellent one at that. I have to see what happens in school in September - how he progresses. I will be watching that really close and asking for progress reports from his speech teacher with his speech - separate from his other progress reports. I am also going to request goals so I can better monitor how he is progressing from month to month....... My son has been

receiving services since 18 months old, He was explained (by his therapist) "in 2nd grade" what autism is and he knows that's what he has, He knows he and a few others receive resource room for extra help.; But I think, now that he is 11, getting older (but he's really at a 2nd grade level), its hitting him now - with the gap between him & his peers. He's trying really hard, but I think now - he See's how much he doesn't understand !. which at times he is feeling sad ( T.G. he has a good therapist) I remind him about his strengths and how good he is with academics. that some kids need help with science & social studies and how great he is doing with that. and that everybody needs help with something. I also think that now that he's getting the right help from his skills teacher/therapist and now the team now focusing on his weak areas, (which they never saw before or didn't know

how to work with him) He is starting to see and understand that Hugh gap. Now, when I correct him with something, he'll say - I can't do anything right !. I don't feed into that, I just say - that's not allowed and show him the right way to say it. because sometime he says things that he thinks is a joke and finds funny - while others find it rude or an insult. He also doesn't know when he can joke around and with who. like the difference between joking with another child to an adult. (his mouth is going to get him into trouble with kids and professionals). I can't imagine how middle school is going to be ??? LOL, I can hear my phone ringing now. but I will tell them, its your fault because in elementary school all you kept saying was " we don't see it ". Sorry this got so long. heheheh Rose BRYAN DOLEZAL <DOLEZAL123@...> wrote: My sons found OUT this information / how they view and see things during a test through speech and language with pragmatic speech, which someone on here suggested. One of them (my seven year old) has it all and so it is a matter of us teaching him the tools to utilize these things; the fourteen year old struggled in some areas, but that was a huge help to us as parents because now we know what they do and don't (for example, the seven year old CAN read your face and say how you feel

/ finish a sentence to describe you, etc.; they time these things, grade / however it is done it based on what type of answer they gave, etc.; my fourteen year old struggled a lot more with this. My seven year old was dx'ed at five, so he has gotten services for AS specifically where the 14 year old did not for a long time! AND, both had therapy 18 months on and off, when they started being aggressive; play therapy, which greatly helped the now seven year old. So, I would suggest considering a speech and language assessment at your nearest OT office, to include pragmatic speech; that would help you to know where to start, and even get some services, potentially, at school and / or through pre-school programming. Ruthie From: beachbodytan2002 Date: Mon, 30 Jun 2008 18:04:55 -0700Subject: Re:

( ) Re: off topic question - Ruth Ruth, that does make sense !. one autism professional also said what you wrote: that its unclear if they don't know, or can't express it. His speech teacher feels that he does know, but is too shy to express it. My son isn't shy at all !. *that is where I believe she means well, but she doesn't understand HFA at all.. . I'm going to save what you just wrote as a personal reminder to me...that makes so much sense and that was very helpful. Thanks Roser_woman2 <me2ruth > wrote: > 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 goodvocabulary ?. Can he talk to you about something he likes and isinterested in ? See, my son can talk your ears off. that's why I'mtrying to figure out why he can't tell you he needs something, or forsomeone to stop annoying him. etc...My understanding of all this stuff is: 1) AS kids have a difficulttime "knowing what other people know". That is, they may think youknow what they know even if they haven't told you or they may notrealize that you might know something they don't. 2) AS kids have adifficult time identifying their own and other's thoughts andmotivations. It isn't clear to me whether they don't know or can'texpress 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 headso you can think things through and make decisions.I think my kids are very intuitive and don't think in words as much asthe rest of us. And I think we all go through this as part of growingup to some extent, autistics are just more extreme.Ruth

[Guest guest]

I just thought of the name for it. It's probably expressive language

disorder, although we haven't worked with a SLP yet. Worth looking

up, 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 just thought of the name for it. It's probably expressive language

> disorder, although we haven't worked with a SLP yet. Worth looking

> up, but I have to run now.

My son's speech dx is symbolic disorder. He has very good vocabulary,

so he doesn't fit expressive language disorder. He actually expresses

himself very well except in certain ways.

Ruth

[Guest guest]

Ruth, My son also has very strong vocabulary. He just can't express his feelings or ask for something his needs. or explain a certain situation. I was reading a site on this topic and it said that kids with expressive language also have a hard time with writing thoughts and spelling. the speech teacher is working with my son with his writing skills and he's not good with spelling. it took him a long time to get the hang of writing a paragraph. he couldn't even write a sentence with a complete thought. I am going to search the net for symbolic disorder to see which better fits his situation. He can talk your ears off on a topic that he is very interested in. but won't let you know if he's feeling sick, has to use the bathroom, if he can buy something at the store, etc... Rose r_woman2 <me2ruth@...> wrote: >> I just thought of the name for it. It's probably expressive language> disorder, although we haven't worked with a SLP yet. Worth looking> up, but I have to run now.My son's speech dx is symbolic disorder. He has very good vocabulary,so he doesn't fit expressive language disorder. He actually expresseshimself very well except in certain

ways.Ruth

[Guest guest]

>

> Ruth,

> My son also has very strong vocabulary. He just can't express his

feelings or ask for something his needs. or explain a certain

situation.

This is my son also. Rose, part of this is autism, i.e., the theory

of mind issues. You might want to look that up too. Theory of mind

is being aware of other people's thoughts and being able to anticipate

them and how they play out. We typical people do lots of mind-reading

without thinking that autistic people can't do. Part of the reason

your son doesn't ask for things is because he isn't aware that you

don't already know he needs them. He may not be aware that other

people know things he doesn't, so he doesn't think to ask for help.

And there are the sensory issues, like my son not being able to tell

the difference between a tummyache and being hungry until he was in

late elementary.

> the speech teacher is working with my son with his writing skills

and he's not good with spelling. it took him a long time to get the

hang of writing a paragraph. he couldn't even write a sentence with a

complete thought.

See, my son doesn't have this problem, in general. He is even a

talented writer. But his stories are all physical action and dialog.

He has an incredible time with assignments where he has to express an

opinion or get into more abstract, generalizing thoughts. He can't do

it on his own, and sometimes he just can't get what they are asking.

And part of this is executive dysfunction. Another thing for you to

look up! Poor working memory and slow processing speed, my son has

both, cause a person to have difficulty processing, organizing, and

spitting back out their thoughts.

There's really a lot of neurological stuff going on behind the poor

social skills in Asperger.

Ruth

[Guest guest]

This is interesting....my son has poor handwriting, poor spelling and has a lot of social issues. He is very out going but can't put himself into someone else's shoes ....I like the idea of explaining or pointing out what others are doing and how they may be feeling. Sometimes I think people see my son as selfish as he can't always relate to what others are feeling. He is imaginative in his role playing by himself. If he has to write a paragraph he is stumped. He can't even start. I think part is due to anxiety. He is also slow in processing. He use to wait for everyone else to start the work and then he would start. He was checking to see if he understood the directions correctly.

I do know when he had to write an essay last year (5th grade).... What Freedom Means to Me....he just sat there. Finally after prompting him several times...his homeroom teacher called him to her desk and said. , tell me what freedom means to you...as he spoke she wrote it down. And, you wouldn't believe what he said...I was so amazed!!!! and proud!! I did not realize he had those great thoughts in his head.... When I read the final copy, I cried ...I was so proud of him!!!

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: r_woman2 <me2ruth@...>Subject: ( ) Re: off topic question - Ruth Date: Thursday, July 3, 2008, 9:31 AM

>> Ruth,> My son also has very strong vocabulary. He just can't express hisfeelings or ask for something his needs. or explain a certainsituation. This is my son also. Rose, part of this is autism, i.e., the theoryof mind issues. You might want to look that up too. Theory of mindis being aware of other people's thoughts and being able to anticipatethem and how they play out. We typical people do lots of mind-readingwithout thinking that autistic people can't do. Part of the reasonyour son doesn't ask for things is because he isn't aware that youdon't already know he needs them. He may not be aware that otherpeople know things he doesn't, so he doesn't think to ask for help. And there are the sensory issues, like my

son not being able to tellthe difference between a tummyache and being hungry until he was inlate elementary.> the speech teacher is working with my son with his writing skillsand he's not good with spelling. it took him a long time to get thehang of writing a paragraph. he couldn't even write a sentence with acomplete thought. See, my son doesn't have this problem, in general. He is even atalented writer. But his stories are all physical action and dialog.He has an incredible time with assignments where he has to express anopinion or get into more abstract, generalizing thoughts. He can't doit on his own, and sometimes he just can't get what they are asking.And part of this is executive dysfunction. Another thing for you tolook up! Poor working memory and slow processing speed, my son hasboth, cause a person to have difficulty processing, organizing, andspitting back out their

thoughts.There's really a lot of neurological stuff going on behind the poorsocial skills in Asperger.Ruth

[Guest guest]

Ruth, I think you are the one that's fully understanding what I'm talking about !!! what you described is my son. He also has a processing problem/delay. the way that was explained to me was : when you ask a NT child what 1+1 = the child will say 2. but with my son, he has to process the whole thing and say to himself 1+1= then he will say 2. so with my son, he needs a little more time to process things. I was just told by his social skills teacher (he looked at all his CAPT testings and speech pragmatics testings and speech) Also, with my concerns with organization and him forgetting things. he said my son has executive dysfunction. That I also need to look up <executive function > He told me of a book that I need to get that will help him. (I just ordered it). I got to look around to see if I can find the name of that book and see if you heard of it. That also sounds like

something I need to look up: >Poor working memory and slow processing speed> Does this sound like your son ? My son can memorize his whole history lesson, the history ch. a good book his likes, movies, commercials etc...but, If you were to tell him to give me this letter you just wrote - he would forget. he also forgot his award patches he received from football that he was so proud of, and forgot to tell me he got the awards.. A test that he got 100% on, he was supposed to take it to me to sign it and forgot to show it to me. He didn't even take it home. So, its not like he's trying to hide things from me, he just cant remember them. I find it amazing how he can memorize so much stuff but forget where he put his shoes, or favorite toy, etc... And problem solving is another big issue for him. If I asked my kids if they want to go swimming to be ready in 30 minutes. my daughter would

be in her room getting her swim bag, getting her swim suit on, towel and everything else she needs to go swimming. when its time to leave, my son would be walking to the car with nothing. I'll ask him where is he going? son -to the car - me, then where next? -son - to the lake,- me - what are you going to do there? - son - swim, - I said with your clothes on? - son - OH NO. That's when it connected with him that he needs a swim suit. I was told to do all these steps so he can think of what he has to do. Now I'm told to have a laminated list that is something like this: Swimming - and have everything on that list of what he needs to bring to pack. football - list everything on that list what he needs to have to play football. and the same for school, church, or anything else we do all needs a separate list. Would you believe this was a Hugh help. I have our list on the front

door and prompt him each morning to look at that list. He's able to pack his summer day camp bag and lunch bag himself now - but with this list. He told me when he checked the list again after he packed everything, he saw something he forgot. that also sounds like my son - getting into more abstracts - generalizing thoughts, verbally and with his writing. He doesn't do his writing on his own either. His speech teacher is helping him with all that and she uses webbing too. Ruth, Does the school get all this, and working on all your son's needs in school ?. How is he doing ?. What are the strategies your using at home with him? ***** is this what all this is called: Theory of mind issues ? If not, what is it called ? thanks for posting this. I'm going to print this out and lean about all this information you just posted. That's a great start

to start with. Thanks again for posting this !!! Roser_woman2 <me2ruth@...> wrote: >> Ruth,> My son also has very strong vocabulary. He just can't express hisfeelings or ask for something his needs. or explain a certainsituation. This is my son also. Rose, part of this is autism, i.e., the theoryof mind

issues. You might want to look that up too. Theory of mindis being aware of other people's thoughts and being able to anticipatethem and how they play out. We typical people do lots of mind-readingwithout thinking that autistic people can't do. Part of the reasonyour son doesn't ask for things is because he isn't aware that youdon't already know he needs them. He may not be aware that otherpeople know things he doesn't, so he doesn't think to ask for help. And there are the sensory issues, like my son not being able to tellthe difference between a tummyache and being hungry until he was inlate elementary.> the speech teacher is working with my son with his writing skillsand he's not good with spelling. it took him a long time to get thehang of writing a paragraph. he couldn't even write a sentence with acomplete thought. See, my son doesn't have this problem, in general. He is even atalented writer. But

his stories are all physical action and dialog.He has an incredible time with assignments where he has to express anopinion or get into more abstract, generalizing thoughts. He can't doit on his own, and sometimes he just can't get what they are asking.And part of this is executive dysfunction. Another thing for you tolook up! Poor working memory and slow processing speed, my son hasboth, cause a person to have difficulty processing, organizing, andspitting back out their thoughts.There's really a lot of neurological stuff going on behind the poorsocial skills in Asperger.Ruth

[Guest guest]

that is so amazing !. and good for that teacher to care and take the time out to write it all down for him....I also find that amazing that he had all that information but couldn't write it into words. yet, it was all there. I think with some of our kids, its how your ask the question or the way they need to do things (differently) to get that information from them. I guess they are smarter than we think, but we need to learn the right way to get that all out... does that make sense to you ? Roserushen janice <jrushen@...> wrote: This is interesting....my son has poor handwriting, poor spelling and has a lot of social issues. He is very out going but can't put himself into someone else's shoes ....I like the idea of explaining or pointing out what others are doing and how they may be feeling. Sometimes I think people see my son as selfish as he can't always relate to what others are feeling. He is imaginative in his role playing by himself. If he has to write a paragraph he is stumped. He can't even start. I think part is due to anxiety. He is also slow in processing. He use to wait for everyone else to start the work and then he would start. He was checking to see if he understood the directions correctly. I do know when he had to write an essay last year (5th grade).... What

Freedom Means to Me....he just sat there. Finally after prompting him several times...his homeroom teacher called him to her desk and said. , tell me what freedom means to you...as he spoke she wrote it down. And, you wouldn't believe what he said...I was so amazed!!!! and proud!! I did not realize he had those great thoughts in his head.... When I read the final copy, I cried ...I was so proud of him!!! 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: r_woman2 <me2ruth >Subject: ( ) Re: off topic question - Ruth Date: Thursday, July 3, 2008, 9:31 AM >> Ruth,> My son also has very strong vocabulary. He just can't express hisfeelings or ask for something his needs. or explain a certainsituation.

This is my son also. Rose, part of this is autism, i.e., the theoryof mind issues. You might want to look that up too. Theory of mindis being aware of other people's thoughts and being able to anticipatethem and how they play out. We typical people do lots of mind-readingwithout thinking that autistic people can't do. Part of the reasonyour son doesn't ask for things is because he isn't aware that youdon't already know he needs them. He may not be aware that otherpeople know things he doesn't, so he doesn't think to ask for help. And there are the sensory issues, like my son not being able to tellthe difference between a tummyache and being hungry until he was inlate elementary.> the speech teacher is working with my son with his writing skillsand he's not good with spelling. it took him a long time to get thehang of writing a paragraph. he couldn't even write a sentence with acomplete thought.

See, my son doesn't have this problem, in general. He is even atalented writer. But his stories are all physical action and dialog.He has an incredible time with assignments where he has to express anopinion or get into more abstract, generalizing thoughts. He can't doit on his own, and sometimes he just can't get what they are asking.And part of this is executive dysfunction. Another thing for you tolook up! Poor working memory and slow processing speed, my son hasboth, cause a person to have difficulty processing, organizing, andspitting back out their thoughts.There's really a lot of neurological stuff going on behind the poorsocial skills in Asperger.Ruth

[Guest guest]

>

> Ruth, I think you are the one that's fully understanding what I'm

talking about !!!

Thanks, that makes me feel good!

> ... Does this sound like your son ? My son can memorize his whole

history lesson, the history ch. a good book his likes, movies,

commercials etc...but, If you were to tell him to give me this letter

you just wrote - he would forget. he also forgot his award patches he

received from football that he was so proud of, and forgot to tell me

he got the awards.. A test that he got 100% on, he was supposed to

take it to me to

> sign it and forgot to show it to me.

Yes, this sounds very much like my son.

> when its time to leave, my son would be walking to the car with

nothing. I'll ask him where is he going? son -to the car - me, then

where next? -son - to the lake,- me - what are you going to do there?

- son - swim, - I said with your clothes on? - son - OH NO. That's

when it connected with him that he needs a swim suit. I was told to

do all these steps so he can think of what he has to do. Now I'm told

to have a laminated list that is something like this:

> Swimming - and have everything on that list of what he needs to

bring to pack.

> football - list everything on that list what he needs to have to

play football.

> and the same for school, church, or anything else we do all needs

a separate list.

This is both my kids, one aspie and one suspected aspie. Thanks for

posting this! I still struggle to do things like this.

> Ruth, Does the school get all this, and working on all your son's

needs in school ?. How is he doing ?.

Sadly, a big part of the reason why I have done so much

studying/observing on Asperger is because we get very little help from

school. He has a 504 plan with some supports for his executive

dysfunction, things teachers checking and signing his agenda every

day, etc. Some of his 504 plan supports are good in theory, but since

his teachers are all regular classroom teachers and no special ed

staff are involved, pretty much nobody understands what they need to

be doing--and they don't take kindly to advice from me. So, I'm

pretty much trying to coordinate special ed from home, hiring my own

speech/OT therapist/tutors etc. and trying to figure out what we need

to be working on. Since he doesn't have special ed, my therapists are

not allowed to talk to the teachers. It is a daily thing I spend

hours on every week with only minimal results since it isn't being

done right. Very frustrating. I know many on the list go through the

same thing.

What are the strategies your using at home with him?

Honestly, just being patient and giving him time, and being very

explicit about everything. I can't say as I feel like I am doing

great with him. This summer we are working on ADLs (Activities of

daily life), trying to get him going more on personal hygiene, chores,

fixing himself things to eat, etc. Our OT has helped us put together

a little program. We are working on one or two things at a time. I'm

just trying to get him DOING things, and hopefully I can get him

thinking about doing at least a little something on his own

initiative. So far, I dunno...

We are in between speech therapists right now, and I haven't been able

to find one that is a good fit. So, that is something I'm hoping to

get together by the end of the summer at least. I'm getting to where

I'm thinking I may have to go ahead and start his speech therapy

myself, with his brother perhaps. I'm on a waiting list for a place

that is supposed to be very good, but it may be a long wait.

Ruth

[Guest guest]

>

> I do know when he had to write an essay last year (5th grade)....

What Freedom Means to Me....he just sat there.� Finally after

prompting him several times...his homeroom teacher called him to her

desk and said. , tell me what freedom means to you...as he spoke

she wrote it down.� And, you wouldn't believe what he said...I was so

amazed!!!! and proud!! I did not realize he had those great thoughts

in his head.... When I read the final copy, I cried ...I was so proud

of him!!!

Did you know that this can be an IEP item? If he has an expressive

problem like this, his tests can be oral with a scribe. I know people

that have done this. My son does not have this problem, by the way.

The things he can't express in writing, he also cannot express verbally.

Ruth

[Guest guest]

Ruth, I would request everything needed in writing . Sadly, a big part of the reason why I have done so muchstudying/observing on Asperger is because we get very little help fromschool. He has a 504 plan (request an IEP) with some supports for his executivedysfunction, things teachers checking and signing his agenda everyday, etc. Some of his 504 plan supports are good in theory, but sincehis teachers are all regular classroom teachers and no special edstaff are involved, pretty much nobody understands what they need tobe doing--and they don't take kindly to advice from me. So, I'mpretty much trying to coordinate special ed from home, hiring my ownspeech/OT therapist/tutors etc. and trying to figure out what we needto be working on. Since he doesn't have special ed, my therapists arenot allowed to talk to the teachers. It

is a daily thing I spendhours on every week with only minimal results since it isn't beingdone right. Very frustrating. I know many on the list go through thesame thing. Have you thought about requesting in writing that your son be placed on an IEP instead of a 504 plan. also, for my son to help him become more independent, they have a organizer sheet in his assignment book. it looks something like this: Monday do I need my math book _____yes, _____no - do I have my math book___yes___no do I need my science bk _____yes,_____no - do I have my science bk ___yes___no They have this from Mon - Fri each week, the teacher signs off on that after she checks his organizer sheet and

school bag to see if he has everything needed. I have something like that at home. My son does so much better with that organizer work list. Also, my son has all regular ed teachers. but, he also has a resource room teacher - when she understands my concerns - she is a Hugh help. you will feel so relieved when you have the right strategies that work and the right help from school. you will be amazed with the progress you will see with your son !. and like me, you also have outside help too. I did that same thing you are doing, when I wasn't getting the right help from school. I got it myself from the outside. Now - all you have to do is - LOL - get everybody on the same page, all communication together - I was just laughing because I know how hard that's going to be. but if you stick with it, every day -

let them know you aren't going to give up and make them listen. When this all takes place and your all working together on this. you will see the Hugh progress... and relief for you !. set up a meeting, let them all know what your doing and what you need for them to help you with your son. THEN BACK THAT UP IN WRITING. Get documentation from all your outside help showing the school what is needed.What are the strategies your using at home with him? Honestly, just being patient and giving him time, and being veryexplicit about everything. I can't say as I feel like I am doinggreat with him. But you are !.summer we are working on ADLs (Activities ofdaily life), trying to get him going more on personal hygiene, chores,fixing himself things to eat, etc. Our OT has helped us put

togethera little program. We are working on one or two things at a time. I'mjust trying to get him DOING things, and hopefully I can get himthinking about doing at least a little something on his owninitiative. So far, I dunno... What has helped us with this " life skill are ". If my son were to make a peanut butter and Jelly sandwich. first I'll ask he to tell me what he needs to do to make it. (verbally first). He will say he needs the bread, knife, peanut butter, jelly, dish. Then I'll ask him what he needs to do to make the sandwich - he will verbally tell me first. then he's ready to make it. - we don't have to go over this anymore with PB & J. we then did this

for him to make waffles - first verbally - then he was ready to make them. same with the shower - When he tells me first - it works out so much better. as for cleaning his room. first I'll give him an index card that says: pick up all your clothes and put them into the hamper and come to me when finished. the next card will say : pick up all your toys and put them back into the bucket, when your finished, come back to me. then the next card will say: sweep the floor & into the shovel and empty that into the garbage. It has to be in all those steps for him to clean his room. Now I don't have to elaborate so much with each step. We are in between speech therapists right now, and I haven't been ableto find one that is a good fit. So, that is something I'm hoping toget together by the end of the summer at least. I'm getting to whereI'm thinking I may have to go ahead and start his speech

therapymyself, with his brother perhaps. I'm on a waiting list for a place Your on a waiting list to find a place or for an opening ? if for an opening - ask them to also put your name on a cancellation list. Then I would also put in writing to the school that you want your son to receive speech and anything else you feel he needs. ask them to respond back to you in writing. Have you considered sending your son for a CAPT ? that was another hugh help for us. I wish you the best - with the school for this September. Once they understand what you need and work with your son - you will see the progress. Don't forget, the school is on a budget - money thing - so you will need to be a strong advocate, request in writing, document everything, and bring in all those documents from your outside help. Request an IEP for him and progress reports, goals, and

anything else you can think of to help your son. I hope something here can help you. it takes baby steps but worth it. Have a good 4th of July day Rose r_woman2 <me2ruth@...> wrote: >> Ruth, I think you are the one that's fully understanding what I'mtalking about !!! Thanks, that makes me feel good!> ... Does this sound like your son ? My son can memorize his wholehistory lesson, the history ch. a good book his likes, movies,commercials etc...but, If you were to tell him to give me this letteryou just wrote - he would forget. he also forgot his award patches hereceived from football that he was so proud of, and forgot to tell mehe got the awards.. A test that he got 100% on, he was supposed totake it to me to> sign it and forgot to show it to me. Yes, this sounds very much like my son.> when its time to leave, my son would be walking to the car withnothing. I'll ask him where is he going? son -to the car - me, thenwhere next? -son - to the lake,- me - what are you going to do there?- son - swim, - I said with

your clothes on? - son - OH NO. That'swhen it connected with him that he needs a swim suit. I was told todo all these steps so he can think of what he has to do. Now I'm toldto have a laminated list that is something like this: > Swimming - and have everything on that list of what he needs tobring to pack.> football - list everything on that list what he needs to have toplay football.> and the same for school, church, or anything else we do all needsa separate list. This is both my kids, one aspie and one suspected aspie. Thanks forposting this! I still struggle to do things like this.> Ruth, Does the school get all this, and working on all your son'sneeds in school ?. How is he doing ?. Sadly, a big part of the reason why I have done so muchstudying/observing on Asperger is because we get very little help fromschool. He has a 504 plan with some supports for his

executivedysfunction, things teachers checking and signing his agenda everyday, etc. Some of his 504 plan supports are good in theory, but sincehis teachers are all regular classroom teachers and no special edstaff are involved, pretty much nobody understands what they need tobe doing--and they don't take kindly to advice from me. So, I'mpretty much trying to coordinate special ed from home, hiring my ownspeech/OT therapist/tutors etc. and trying to figure out what we needto be working on. Since he doesn't have special ed, my therapists arenot allowed to talk to the teachers. It is a daily thing I spendhours on every week with only minimal results since it isn't beingdone right. Very frustrating. I know many on the list go through thesame thing.What are the strategies your using at home with him? Honestly, just being patient and giving him time, and being veryexplicit about everything. I can't say as I

feel like I am doinggreat with him. This summer we are working on ADLs (Activities ofdaily life), trying to get him going more on personal hygiene, chores,fixing himself things to eat, etc. Our OT has helped us put togethera little program. We are working on one or two things at a time. I'mjust trying to get him DOING things, and hopefully I can get himthinking about doing at least a little something on his owninitiative. So far, I dunno... We are in between speech therapists right now, and I haven't been ableto find one that is a good fit. So, that is something I'm hoping toget together by the end of the summer at least. I'm getting to whereI'm thinking I may have to go ahead and start his speech therapymyself, with his brother perhaps. I'm on a waiting list for a placethat is supposed to be very good, but it may be a long wait.Ruth

[Guest guest]

>

> Ruth,

> I would request everything needed in writing .

I wish it were all this simple. Unfortunately, we've already been

through all this. We've been turned down for an IEP twice now.

Things get a lot more complicated when your child has a high IQ and

doesn't come anywhere close to " flunking " , even if they are

considerably below their own potential. It is a mixed blessing when

you have a child whose academic ability is several grades above their

natural age when they have learning disabilities too. And, to be

honest, I'm not sure it would do any good to get awarded services when

there is nobody in the school who has a clue how to work with gifted

kids with learning disabilities. Yes, they " have " to do it, but how

long would it take them to figure it out? By about the time he

graduates from high school? Like I said, I've been through all

the advocating, and still do that, out of necessity of getting through

everyday school, but I think my time is better spent finding him my

own qualified professionals. If the school actually comes around

sometime before he graduates, great! Like I said, I don't stop

working on it, but my perspective on getting school services has changed.

Ruth

[Guest guest]

I can't recall how old your child is, but check into a program like the Duke TIP or something similar to possibly get access to more educational opportunities for him. Dylan is like 2 points away from qualifying so I'm thinking about writing a letter asking for him to be accepted anyway. We'll see how it goes.

( ) Re: off topic question - Ruth

>> Ruth,> I would request everything needed in writing .I wish it were all this simple. Unfortunately, we've already beenthrough all this. We've been turned down for an IEP twice now. Things get a lot more complicated when your child has a high IQ anddoesn't come anywhere close to "flunking", even if they areconsiderably below their own potential. It is a mixed blessing whenyou have a child whose academic ability is several grades above theirnatural age when they have learning disabilities too. And, to behonest, I'm not sure it would do any good to get awarded services whenthere is nobody in the school who has a clue how to work with giftedkids with learning

disabilities. Yes, they "have" to do it, but howlong would it take them to figure it out? By about the time hegraduates from high school? Like I said, I've been through allthe advocating, and still do that, out of necessity of getting througheveryday school, but I think my time is better spent finding him myown qualified professionals. If the school actually comes aroundsometime before he graduates, great! Like I said, I don't stopworking on it, but my perspective on getting school services has changed.Ruth

[Guest guest]

Ruth, I can understand and respect that. I also been in a school that just wouldn't do anything for my son. almost to the point where it look deliberate !. I had an advocate with me and they just didn't care. not the teachers, the CSE team. I just didn't want to waste my time fighting them anymore because it was a losing battle. meanwhile my son was losing out. I decided to take them out, I went to different schools and spoke with their sped dept and asked them questions about autism to see if they understood it. I narrowed it down to 3 schools. could you imagine, in a whole county only 3 schools I would consider that seemed like they understood HFA. Then we moved into the school district I chose. We had some disagreements, but my son made it through elementary school - progressing - and not bullied by others, as far as I'm aware of. (and with the outside help) they don't understand HFA just classic

autism. but they are willing to learn.? If your doing all the work yourself, would it be better for you to homeschool ? or online school ? With an autism DX isn't it a violation for the school not to provide your son with speech, social skills and life skills? can you put your son into another school district with a letter requesting it ? Roser_woman2 <me2ruth@...> wrote: >> Ruth,> I would request everything needed in writing .I wish it were all this simple. Unfortunately, we've already beenthrough all this. We've been turned down for an IEP twice now. Things get a lot more complicated when your child has a high IQ anddoesn't come anywhere close to "flunking", even if they areconsiderably below their own potential. It is a mixed blessing whenyou have a child whose academic ability is several grades above theirnatural age when they have learning disabilities too. And, to behonest, I'm not sure it would do any good to get awarded services whenthere is nobody in the school who has a clue how to work with giftedkids with learning disabilities. Yes, they "have" to do it, but howlong would it take them to figure it out? By about the

time hegraduates from high school? Like I said, I've been through allthe advocating, and still do that, out of necessity of getting througheveryday school, but I think my time is better spent finding him myown qualified professionals. If the school actually comes aroundsometime before he graduates, great! Like I said, I don't stopworking on it, but my perspective on getting school services has changed.Ruth

[Guest guest]

Ruth,My son qualified for the school's gifted program and got sped. At the end of second grade, he read at the seventh grade level. But you're right. They didn't have a clue about how to work with him. He did have an IEP, though, and got OT, speech, and saw a therapist once a week. The only system that really worked for him was Montessori and a Montessori'like system, where the ratio of teachers to kids was low, and kids worked at their own paces. He had this through middle school. High school was a disaster.LizOn Jul 3, 2008, at 6:45 PM, r_woman2 wrote:>> Ruth,> I would request everything needed in writing .I wish it were all this simple. Unfortunately, we've already beenthrough all this. We've been turned down for an IEP twice now. Things get a lot more complicated when your child has a high IQ anddoesn't come anywhere close to "flunking", even if they areconsiderably below their own potential. It is a mixed blessing whenyou have a child whose academic ability is several grades above theirnatural age when they have learning disabilities too. <snip>Ruth

[Guest guest]

>

> I can't recall how old your child is, but check into a program like

the Duke TIP or something similar to possibly get access to more

educational opportunities for him.

Yes, I would recommend that too. He did participate in that, although

he is too old now.

Ruth

[Guest guest]

Thanks for all the thoughts, guys!

>

> Ruth, I can understand and respect that. I also been in a school

that just wouldn't do anything for my son. almost to the point where

it look deliberate !. I had an advocate with me and they just didn't

care. not the teachers, the CSE team.

In our case, it isn't a matter of not caring. It's a long learning

curve. We keep progressing, but it is very slow. They keep giving

him more, not less, but we still have a very long way to go.

> I decided to take them out, I went to different schools and spoke

with their sped dept and asked them questions about autism to see if

they understood it.

I think yanking my kids out of the only community they've ever known

would cause its own problems. We aren't in a position to move

financially anyway. And my son's situation is such, and our the way

our state handles SPED is such, that I'm not convinced it would be any

different. Not to mention that things change. Our school district

used to have a wonderful autism program that parents raved about.

They got a new SPED director who dismantled it.

> If your doing all the work yourself, would it be better for you to

homeschool ? or online school ?

I have a full-time career, something I have no choice about for

financial reasons, so no, that would never work. Unfortunately,

private school is out of our budget.

> With an autism DX isn't it a violation for the school not to provide

your son with speech, social skills and life skills?

Not if the child is " successful in the classroom " and " accessing the

general curriculum " . Which is what they claim when the child is not

flunking and not causing disruption.

Ruth

[Guest guest]

> High school was a disaster.

Yes, I know they give kids like mine IEPs in other states (we are in

Texas). Liz, since you've been through this, in retrospect, do you

have any advice for high school? My son is just going into 8th grade.

Ruth

[Guest guest]

I have a question...what state do you live in? I can not believe your child was turned down for an IEP. We live in PA and there was absolutely NO PROBLEM at all! They did at one point want to put in inclusion classes for language arts...and actually did so illegally...but that happened when I was not educated to the law. Anyways, now I have absolutely no problem at all. But I just can't believe that a child with a dx of AS can't get an IEP! Wow!

Jan

P.S. That is WRONG! Did you write to the stae dept. of education?

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.

>> Ruth,> I would request everything needed in writing .I wish it were all this simple. Unfortunately, we've already beenthrough all this. We've been turned down for an IEP twice now. Things get a lot more complicated when your child has a high IQ anddoesn't come anywhere close to "flunking", even if they areconsiderably below their own potential. It is a mixed blessing whenyou have a child whose academic ability is several grades above theirnatural age when they have learning disabilities too. And, to behonest, I'm not sure it would do any good to get awarded services whenthere is nobody in the school who has a clue how to work with giftedkids with learning disabilities. Yes, they "have" to do it, but howlong

would it take them to figure it out? By about the time hegraduates from high school? Like I said, I've been through allthe advocating, and still do that, out of necessity of getting througheveryday school, but I think my time is better spent finding him myown qualified professionals. If the school actually comes aroundsometime before he graduates, great! Like I said, I don't stopworking on it, but my perspective on getting school services has changed.Ruth

[Guest guest]

Ruth,

Yes it makes sense to me! I think it has to do with the brain and the way it is wired! It some process of getting it from the brain to the paper. I don't know what it is called! but he also has a lot of anxiety and fears plus he says that it hurts to write...now I have been told he holds the pencil correctly but I think he does have fine motor skill problems. It is probably a combination of a lot of things. I have asked that he be able to work more on a computer ....that seems to be easier for him and that he can take tests etc. orally. Let's see what happens next year. I just have to stay on top of them. Typing is easier for him then writing and would you believe he never learned cursive and he is in 6th grade. How that happened I don't know ...I really don't care ...I will jsut have to teach him to sign his own name. Most of the correspondence today is on computers...very little writing.

Thanks for repsonding. And, it is amazing to find out what they are thinking or what they know....in their brains .....they are smarter than people give them credit for!

And, like he said in his essay...Freedom means I can choose the religiion I want to practice, the church I want to attend, the profession I want to work in and to celebrate my birthday the way I want! I can paint my house the color I like and I can attend the school of my choice.

Wow...all this when in 5th grade. Tears came down my face.

Then, in 6th grade they had to write an essay in order to go to Dorney Park (an amusement park). He didn't want to go so he didn't write it. It was how he interpreted it. But he did have to write it. So, instead of attending a party for the teacher who was leaving, he had to sit and write the essay. It was nosiy in the room and he has issues with noise. But he sat at the computer and wrote. Now of course the teachers brought it up to me taht he was able to write the essay with all the noise. And, when I asked him about it, he said, I had to cover my ears to think and then type. Anyways, he typed the essay and got it done. And, as far as not being able to atttend the party...he didn't care.... becuase he hated that teacher and was glad she was leaving! She was always picking on him and he knew she didn't like him. LOL. Now back to the essay...this is the summary of what he wrote....

I have to write this essay on why I should go to Dorney Park. Everyone in 6th grade has to be this.

I believe I have been good this year and followed the school's motto. I have been respectful, have not teased anyone and have been well in school. So this is why I should be allowed to go. But, I don't want to go even if they choose me.

He went on and on...but i got the biggest laugh! I am writing this because I have to and I don't wnat to go. LOL.

It's funny how the schools think they are discipling our children like not letting them go to a party or putting them in in-school suspension and it doens't bother them. When my son has to serve 2 days in-school (6th grade), they put him in the audiotorium with a monitor. He LOvED it! It was so peaceful adn quiet...no kids to tease him! He got all his work done plue more! LOL. JUst like they thought they were punishing him by not letting him go to the party...he didn't want to go anyways. They have there own way of thinking ...amazing!

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: r_woman2 <me2ruth (DOT) com>Subject: ( ) Re: off topic question - Ruth Date: Thursday, July 3, 2008, 9:31 AM

>> Ruth,> My son also has very strong vocabulary. He just can't express hisfeelings or ask for something his needs. or explain a certainsituation. This is my son also. Rose, part of this is autism, i.e., the theoryof mind issues. You might want to look that up too. Theory of mindis being aware of other people's thoughts and being able to anticipatethem and how they play out. We typical people do lots of mind-readingwithout thinking that autistic people can't do. Part of the reasonyour son doesn't ask for things is because he isn't aware that youdon't already know he needs them. He may not be aware that otherpeople know things he doesn't, so he doesn't think to ask for help. And there are the sensory issues, like my

son not being able to tellthe difference between a tummyache and being hungry until he was inlate elementary.> the speech teacher is working with my son with his writing skillsand he's not good with spelling. it took him a long time to get thehang of writing a paragraph. he couldn't even write a sentence with acomplete thought. See, my son doesn't have this problem, in general. He is even atalented writer. But his stories are all physical action and dialog.He has an incredible time with assignments where he has to express anopinion or get into more abstract, generalizing thoughts. He can't doit on his own, and sometimes he just can't get what they are asking.And part of this is executive dysfunction. Another thing for you tolook up! Poor working memory and slow processing speed, my son hasboth, cause a person to have difficulty processing, organizing, andspitting back out their

thoughts.There's really a lot of neurological stuff going on behind the poorsocial skills in Asperger.Ruth