Questions

[Guest guest]

Kody does this too. He can't walk the mall without being in pain and

exhausted. So anytime he needs to walk for longer period of time than usual

we usually get him a wheelchair. I hate the wheelchair but he's outgrown a

stroller and clearly he needs it or he doesn't get to do certain things.

Diane, Mom to Kody

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- Re: Questions

,

complains of his legs being tired, also. This is a boy with plenty

of energy, so I don't think he's making it up. Also, it seems to be when we

have walked quite a bit--he has literally sat down in the middle of the

aisle

of a store before--his legs are just too tired to walk anymore. At first,

they were thinking it was his heart. Now, the current thinking is it's his

PID.

Sandi

[Guest guest]

I haven't heard of one. Good luck with the testing.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

I haven't heard of one. Good luck with the testing.

Ursula Holleman

Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Rosemary,

Actually I use the ground as I do in the assessment to REDUCE the number of moves. Since Cz is not a site from which I measure, though does, I use Fz (which is used in the midline measure) for the first ground and then switch to, I think, C3 for the rest of the assessment.

If the client likes the training as you described, I see nothing wrong with it. I have personally found some pretty good results using Fz/Pz in one channel and C3/C4 in the other, so the crisscrossing can work fine with the right client.

I did get the message you sent earlier, and I will respond to it, but it will take a few minutes to look through that in detail. Sorry for the delay. I'll get there.

Pete

-----Original Message-----From: Rosemary Herron [mailto:reherron@...]Sent: Thursday, April 17, 2003 7:42 PM Subject: Questions

Pete,

Do you see any problem with using Cz as ground for the whole assessment? It gives a more visible landmark and allows for less electrode manipulation.

Are there any drawbacks to doing a 2 channel: C3 beta on ch1 and T3-T4 on ch2: C3-A1-A2-T3-T4

So far it seems to work, but I tried a T3-T4-G-Fpz-Pz once and crisscrossing the head did not seem to work well.

I am also resending a message that I sent while you were in the wild country. I didn't see an answer. It's about xp version category page vs. report page. Maybe I am hung up on semantics!!

Rosemary

[Guest guest]

In a message dated 5/28/2003 4:37:39 PM Eastern Daylight Time,

Mobubba9@... writes:

> Also, my son is 21 months old

> so at times his attention span is ...a two year old. Well his therapist

> said

> to me last week that we have to work on 's attention span and get him

>

> to realize that there are beginnings and endings to things. " That is when

> we

> will begin to get him speaking " What the heck is that....to me it is crap

> !

Sorry. You're not gonna like what I have to say. I think the speech

therapist is right, but perhaps she didn't explain herself well. There are at

least

two parts to speech and language -- expressive and receptive. I won't

generalize for all kids or all kids with DS, but before my son was physically

ready

to say words, he could certainly understand them. SO we spent a lot of time

working on his receptive language skills. The therapist has lots of small toys.

She would give him tasks to do. " Put the blue ball on the table. " " Make the

big doll jump up. " So he's learning verbs (activities), nouns (objectives) and

adjectives. One of the tools our SLP uses is called Links to Language.

It's specifically geared to teaching kids to learn to pay attention and follow

commands, two very important skills for being successful in school. You might

think 21 months is too, young, but you can get a head start before the

expressive language skills kick in. It may seem like play, but it's really

learning.

My son has had a lot of trouble sitting still and paying attention. This

brilliant therapist he sees realized that he needs tons of sensory stimulation

to

speak. It's amazing how much more he can say in a swing! Extra occupational

therapy has helped him tremendously, too. There are also lots of other

things that can help speech. Sitting properly with feet and trunk supported,

drinking from a plain cup (not a sippy cup), using proper feeding techniques,

exploring new tastes (sour & spicey), temperatures (Cold) and textures (crunchy

&

chewy) are things that many therapists have recommended in the past.

What are some of the specifics that she recommends? Don't be intimidated. I

don't know of any parent who had the time or energy to do everything

suggested. Your first job is MOM! Also, other siblings (I hear) can be great

therapists and motivators.

Kathy, Liam's mom( 5)

[Guest guest]

Well, must be a male thing- their constant fasination with the upper part of

the female anatomy!

Hey good for -putting words to objects (hey i crack myself up!)

And they said hed never talk, no only the bad words, LOL LOL LOL!

[Guest guest]

In a message dated 5/28/2003 3:30:04 PM US Mountain Standard Time,

cindysue@... writes:

> is almost 10 and his speech continues to progress slowly (he also

> has apraxia).

Same with Maverick. He is 12 now and while people are learning to understand

him when they are around him, it's difficult at times, and if you don't take

time it's impossible. He just started with the Vantage communication

device..with Jr. High in mind and him needing it for educational reasons more

than

social.

My foster daughter who is 10 speaks VERY clearly.

[Guest guest]

Maureen, hang in there. Things will get better. As soon as your little one

starts talking things will start moving so fast. It's always the beginning

of things that get you so stressed out. All the activities may be

overwhelming but i'm sure alot of us don't do every single thing on our

lists of things to do for ourselves or our kids. Even though it will always

be something else, it does get easier and then you would look back and say,

I remember when..... hugs to you

>From: Mobubba9@...

>

>Subject: questions

>Date: Wed, 28 May 2003 16:12:14 EDT

>

>Hi All

>

>I have a few questions relating to speech therapy. To those whose children

>receive therapy is the therapy a play therapy ? Also, my son is 21 months

>old

>so at times his attention span is ...a two year old. Well his therapist

>said

>to me last week that we have to work on 's attention span and get

>him

>to realize that there are beginnings and endings to things. " That is when

>we

>will begin to get him speaking " What the heck is that....to me it is crap

>!

>Maybe I am wrong, but his DT has no problem..yes at times he is not

>interested in things but I find that to be normal. Am I wrong ? Why does

>speech need

>to work on his attention span...???She floored me with tons of things I

>should be doing...nothing speech related.....I was in tears. My husband

>wants no

>one to come see him now. She said so much that she has totally discouraged

>me

>from having any other kids. When would I have any time to spend with

>anyone

>else ?

>Anyway, I just wanted a little feedback on what others have experienced .

>Thanks for letting me vent and hope everyone is doing well.

>Maureen ( 21 mos..DS)

>

>

>

[Guest guest]

My (who is 17) had speech therapy that worked on sign language and

making sounds as well as oral motor exercises at that age. He had it every day

because he was in a special preschool.

Elaine

questions

Hi All

I have a few questions relating to speech therapy. To those whose children

receive therapy is the therapy a play therapy ? Also, my son is 21 months old

so at times his attention span is ...a two year old. Well his therapist said

to me last week that we have to work on 's attention span and get him

to realize that there are beginnings and endings to things. " That is when we

will begin to get him speaking " What the heck is that....to me it is crap !

Maybe I am wrong, but his DT has no problem..yes at times he is not

interested in things but I find that to be normal. Am I wrong ? Why does

speech need

to work on his attention span...???She floored me with tons of things I

should be doing...nothing speech related.....I was in tears. My husband wants

no

one to come see him now. She said so much that she has totally discouraged me

from having any other kids. When would I have any time to spend with anyone

else ?

Anyway, I just wanted a little feedback on what others have experienced .

Thanks for letting me vent and hope everyone is doing well.

Maureen ( 21 mos..DS)

[Guest guest]

Maureen-

I have had experiences similar to this and I want you to know that some

therapists are just better than others. Some know how to get the child on

task and others don't. The ones that don't sometimes blame the kids rather

than take responsibility.

You may want to check into private ST.

Schulte

questions

> Hi All

>

> I have a few questions relating to speech therapy. To those whose

children

> receive therapy is the therapy a play therapy ? Also, my son is 21 months

old

> so at times his attention span is ...a two year old. Well his therapist

said

> to me last week that we have to work on 's attention span and get

him

> to realize that there are beginnings and endings to things. " That is

when we

> will begin to get him speaking " What the heck is that....to me it is

crap !

> Maybe I am wrong, but his DT has no problem..yes at times he is not

> interested in things but I find that to be normal. Am I wrong ? Why does

speech need

> to work on his attention span...???She floored me with tons of things I

> should be doing...nothing speech related.....I was in tears. My husband

wants no

> one to come see him now. She said so much that she has totally

discouraged me

> from having any other kids. When would I have any time to spend with

anyone

> else ?

> Anyway, I just wanted a little feedback on what others have experienced .

> Thanks for letting me vent and hope everyone is doing well.

> Maureen ( 21 mos..DS)

>

>

>

[Guest guest]

didn't have speech therapy as such when he was little, just

the things we did with him. He understood everything but had trouble making

sentences, often just used 2 words. He started with a private therapist at

about

7. By the time he was 10 I felt he wouldn't progress much more with speech

after that age. But he did. In fact he progressed much faster after that.

With only a minimum of therapy at school about that time. It seemed like it was

just maturation. He stuttered quite a bit but hardly ever does that any

more. Most people can understand everything he says, sometimes I have a problem

getting a handle on what it's about but then it's not problem.

My point is, hang in there. You probably have a lot of improvement to

come. No matter what the age.

Jessie

[Guest guest]

is almost 10 and his speech continues to progress slowly (he also has

apraxia). Today, Katey, and picked me up from work (Katey is now

driving--GULP!). gets in the back seat with and he proceeds to

touch her chest and say BOOBY. We couldn't help but crack up laughing - but we

all knew this could develop into a problem. then told him that her knee

was a booby and her top area is chest- and he bought that! I have no idea where

he learned that (he is in 3rd grade - could have been from a classmate). I

asked TJ if he taught him - and he didn't.

[Guest guest]

I totally agree. I take Myah to private speech where she was seeing 2

therapists. 1 is pretty strict making her try and sit and learn. The

other seemed like she did nothing - " play time " I requested not to see

her again because I am not wasting my money on a play mate. If you are

not happy, request someone new or try private therapy. Alos Myah's

school therapist is not too hot. I don't get much feedback from her, but

the OT fills in the voids for her. At least for us the OT and ST duties

cross. I have used some things I saw her working on at private speech

and it is helping. I bought flash cards and I am showing Myah what

things are. Normal things that we all " think " she knows, she may not. So

I am starting from scratch. I have seen much improvement with this. My

thought was if she doesn't really know what something is called, how can

she say it?

Good Luck!

, mom to Myah 2

Re: questions

Maureen-

I have had experiences similar to this and I want you to know that some

therapists are just better than others. Some know how to get the child

on

task and others don't. The ones that don't sometimes blame the kids

rather

than take responsibility.

You may want to check into private ST.

Schulte

questions

> Hi All

>

> I have a few questions relating to speech therapy. To those whose

children

> receive therapy is the therapy a play therapy ? Also, my son is 21

months

old

> so at times his attention span is ...a two year old. Well his

therapist

said

> to me last week that we have to work on 's attention span and

get

him

> to realize that there are beginnings and endings to things. " That is

when we

> will begin to get him speaking " What the heck is that....to me it is

crap !

> Maybe I am wrong, but his DT has no problem..yes at times he is not

> interested in things but I find that to be normal. Am I wrong ? Why

does

speech need

> to work on his attention span...???She floored me with tons of things

I

> should be doing...nothing speech related.....I was in tears. My

husband

wants no

> one to come see him now. She said so much that she has totally

discouraged me

> from having any other kids. When would I have any time to spend with

anyone

> else ?

> Anyway, I just wanted a little feedback on what others have

experienced .

> Thanks for letting me vent and hope everyone is doing well.

> Maureen ( 21 mos..DS)

>

>

>

[Guest guest]

Mav's therapists at school AND at home both use play therapy. That is the

only way Mav would accomplish any thing. He LOVES games so they have him do his

sounds......5 sounds...then a turn at the game. Or....1 complete sentence

and then a turn at the game. We have kids in the home close to his level and he

loves it when there are more playing so that works out well.

One summer we had one who was all business and wanted him to sit at the table

with her and WORK. It was a power struggle....didn't work at all.....and

none of us were happy.

In my opinion, Childs play IS work.

[Guest guest]

The vantage is a augmentive communication device. You push the button and it

says the words. There are alot of different styles and types. When he was

younger, Mav had the Alphatalker. The Vantage is smaller and " more mature " .

They both are based on the minspeak symbols. You can set the pages to the

number of pics that you want.... 4 to 64 is what Mav's is set at.....I'm not

sure

if it can be more...we are using 32 for most pages. You can set different

pages for different subjects.....like I made a page just for FAIR info when he

was at the county fair....and they made a page to go with his Power Point

presentation at school.

[Guest guest]

I agree with Kathy. I am a pediatric therapist (COTA). Everything I do with

the kids on my caseload is play-based. I might be working on supination of

the wrist, but to the child, we are playing. That is what I see my job to

be...the child thinks we are playing, while I am actually getting the

theraputic aspect in there!

I have several ST ask to co-treat with me, since I'm very much into SI

treatment. The words seem to roll out during a session where there is lots

of proprioceptive, vestibular and tactile input!!

Sue mom to Kate 13 and Karrie 7 w/ds

[Guest guest]

What is a Vantage communication device?

Darcy

Re: questions

In a message dated 5/28/2003 3:30:04 PM US Mountain Standard Time,

cindysue@... writes:

> is almost 10 and his speech continues to progress slowly (he also

> has apraxia).

Same with Maverick. He is 12 now and while people are learning to understand

him when they are around him, it's difficult at times, and if you don't take

time it's impossible. He just started with the Vantage communication

device..with Jr. High in mind and him needing it for educational reasons more

than

social.

My foster daughter who is 10 speaks VERY clearly.

[Guest guest]

Kathy, I could not agree with you more! Excellent advice! I always look

forward to reading your posts and seeing the wonderful advice you give.

Maureen, I know it's hard for you at this stage in the game. Hang in there.

Therapy can be confusing, especially when your child has to have multiple

therapies during the week. Jordan had four different therapies a week, every

week.

She took Aquatic Therapy once a week,

Pt once a week

Ot once a week

Speech was twice a week. So five days a week, we were running to HealthSouth.

It was emotionally and physically draining, but in the end, it is sooo well

worth the time and effort.

By the way, Jordan also sees about 5 different specialists for her medical

issues. We had to try and schedule them around therapy sessions. It does get

hectic during the " toddler years " but once they hit school age, the majority of

the therapies can be given during school, which in turn, lightens up the amount

of running you'll have to do.

Judi

[Guest guest]

I have read all posts on this issue and still believe that yes, there

are therapists who do great " play therapy " . Myah's OT is great at it and

can get her to do anything. She is very passionate about her work. With

that being said, we have to remember that we haven't seen this

therapist. Maureen, the speech therapist that I was taking Myah to that

was the " play therapist " wasn't a therapist who taught by playing, but a

therapist who had my child in a room wasting my money trying to get her

to blow bubbles for 30 minutes, when we are trying all of the techniques

at home. And the rest of the time is spent trying to get her attention

because she lets her wander around the room and get into stuff. 1 day

with the " better " therapist and Myah was catching on to making choices

and from that day on will answer yes or no to a question you ask her.

She too is passionate, but in a serious, I really want to teach you way.

She is fun, but demands respect and a certain behavior which sets the

mood for learning for Myah. All that I am saying is follow your gut.

Maybe ask her what she is doing/working on when she is " playing " . It

might make sense, or it might tell you there's a problem.

, mom to Myah, 2

questions

Hi All

I have a few questions relating to speech therapy. To those whose

children

receive therapy is the therapy a play therapy ? Also, my son is 21

months old

so at times his attention span is ...a two year old. Well his therapist

said

to me last week that we have to work on 's attention span and get

him

to realize that there are beginnings and endings to things. " That is

when we

will begin to get him speaking " What the heck is that....to me it is

crap !

Maybe I am wrong, but his DT has no problem..yes at times he is not

interested in things but I find that to be normal. Am I wrong ? Why

does speech need

to work on his attention span...???She floored me with tons of things I

should be doing...nothing speech related.....I was in tears. My husband

wants no

one to come see him now. She said so much that she has totally

discouraged me

from having any other kids. When would I have any time to spend with

anyone

else ?

Anyway, I just wanted a little feedback on what others have experienced

..

Thanks for letting me vent and hope everyone is doing well.

Maureen ( 21 mos..DS)

[Guest guest]

Yes,

If you feel the " play " has direction or structure that is quite different

than the time being wasted. I would read up on the speech therapy and then

go with my instincts. If you feel the therapy is not helping your child,

move on to a new therapist.

Schulte

> I have read all posts on this issue and still believe that yes, there

> are therapists who do great " play therapy " . Myah's OT is great at it and

> can get her to do anything. She is very passionate about her work. With

> that being said, we have to remember that we haven't seen this

> therapist. Maureen, the speech therapist that I was taking Myah to that

> was the " play therapist " wasn't a therapist who taught by playing, but a

> therapist who had my child in a room wasting my money trying to get her

> to blow bubbles for 30 minutes, when we are trying all of the techniques

> at home. And the rest of the time is spent trying to get her attention

> because she lets her wander around the room and get into stuff. 1 day

> with the " better " therapist and Myah was catching on to making choices

> and from that day on will answer yes or no to a question you ask her.

> She too is passionate, but in a serious, I really want to teach you way.

> She is fun, but demands respect and a certain behavior which sets the

> mood for learning for Myah. All that I am saying is follow your gut.

> Maybe ask her what she is doing/working on when she is " playing " . It

> might make sense, or it might tell you there's a problem.

> , mom to Myah, 2

>

> questions

>

> Hi All

>

> I have a few questions relating to speech therapy. To those whose

> children

> receive therapy is the therapy a play therapy ? Also, my son is 21

> months old

> so at times his attention span is ...a two year old. Well his therapist

> said

> to me last week that we have to work on 's attention span and get

> him

> to realize that there are beginnings and endings to things. " That is

> when we

> will begin to get him speaking " What the heck is that....to me it is

> crap !

> Maybe I am wrong, but his DT has no problem..yes at times he is not

> interested in things but I find that to be normal. Am I wrong ? Why

> does speech need

> to work on his attention span...???She floored me with tons of things I

>

> should be doing...nothing speech related.....I was in tears. My husband

> wants no

> one to come see him now. She said so much that she has totally

> discouraged me

> from having any other kids. When would I have any time to spend with

> anyone

> else ?

> Anyway, I just wanted a little feedback on what others have experienced

> .

> Thanks for letting me vent and hope everyone is doing well.

> Maureen ( 21 mos..DS)

>

>

>

[Guest guest]

Hi

All of our kids' therapists over the years have used play therapy. It

worked out good for , Kristi, and , who each successfully

completed five years of OT and PT. is still in OT and PT. Things are

going much slower for him, but he too is learning a lot.

Dad to , Kristi, (all three Down syndrome) and (Cri du

chat syndrome)

Husband to C.

Re: questions

> Mav's therapists at school AND at home both use play therapy. That is the

> only way Mav would accomplish any thing. He LOVES games so they have him

do his

> sounds......5 sounds...then a turn at the game. Or....1 complete sentence

> and then a turn at the game. We have kids in the home close to his level

and he

> loves it when there are more playing so that works out well.

> One summer we had one who was all business and wanted him to sit at the

table

> with her and WORK. It was a power struggle....didn't work at all.....and

> none of us were happy.

> In my opinion, Childs play IS work.

>

>

>

>

[Guest guest]

Hi

Our biggest problem with the speech therapy and speech therapists has been

is they always want to cut the hours (or minutes) as soon as the child makes

progress. and I have had to put our foot down, gently but firmly, at

every IEP to keep or add to the hours for speech therapy. It doesn't make

any sense to cut back when progress is being made. They have always quickly

honored our wishes and dropped the idea of wanting to cut.

Kristi and 's speech therapist this year wasn't all that great. She

was new and only lasted until the end of the school year. Kristi just

adored her but one day when she had one of her stubborn spells the speech

therapist wrote what almost seemed like a dissertation about Kristi's

behavior--three whole pages explaining something that could have been

written in a couple of sentences.

Next year Kristi and will have their 2nd great therapist as she moves

over to the Middle School. will have someone new again.

Like with anything else, the one-on-one works best, with much repetition

allowed.

Dad to , Kristi, and (all three Down syndrome) and (Cri

du chat)

Husband to in Mo.

Re: questions

> didn't have speech therapy as such when he was little, just

> the things we did with him. He understood everything but had trouble

making

> sentences, often just used 2 words. He started with a private therapist

at about

> 7. By the time he was 10 I felt he wouldn't progress much more with

speech

> after that age. But he did. In fact he progressed much faster after

that.

> With only a minimum of therapy at school about that time. It seemed like

it was

> just maturation. He stuttered quite a bit but hardly ever does that any

> more. Most people can understand everything he says, sometimes I have a

problem

> getting a handle on what it's about but then it's not problem.

> My point is, hang in there. You probably have a lot of improvement

to

> come. No matter what the age.

> Jessie

>

>

>

[Guest guest]

Elaine was right on about this. A child this age should be working on sign

language (if you chose to do this), oral motor exercises (such as blowing

bubbles), and making noises (such as animal sounds).

I've never heard of teaching a child " beginnings and ends " in speech

therapy. I did have one very *bad* speech therapist tell me that my son

didn't have the " repetative skills " he needed to speak. So I got out my

book " Communication Skills in Children w/ DS " copied the section on the

repetative skills necessary to begin speaking. Checked off that Blake had

mastered long ago all but 1 of 20 of these skills, and showed it to the

therapy team at the next meeting. The FSC also knew that Blake had these

skills so we had Blake *immitate mouth movements* in front of the ST. He

changed his mind about Blake's skills, but I doubt he changed his attitude

about working with my son. We have a new ST.

If you feel your ST is trying to help your child, by all means work with

her. If not...shop around for a new therapist.

You are the best judge of what is right for your child.

Schulte

> My (who is 17) had speech therapy that worked on sign language and

making sounds as well as oral motor exercises at that age. He had it every

day because he was in a special preschool.

> Elaine

[Guest guest]

A cautionary note, things don't always speed up once a child starts talking,

and many children don't start to speak until they are 4,5 or 6 years old,

and even then some go on to have long term problems. Many children with DS

will speak reasonably well and will progress fast, but its not a foregone

conclusion.

sue wong

Things will get better. As soon as your little one

> starts talking things will start moving so fast.

[Guest guest]

I'm sorry if I worded my post wrong. I didn't mean for anyone to think as

soon as your child starts talking things will move fast. Sorry for the

misunderstanding

>From: " Sue Wong " <crowndale@...>

>< >

>Subject: Re: questions

>Date: Thu, 29 May 2003 19:44:24 +0100

>

>A cautionary note, things don't always speed up once a child starts

>talking,

>and many children don't start to speak until they are 4,5 or 6 years old,

>and even then some go on to have long term problems. Many children with DS

>will speak reasonably well and will progress fast, but its not a foregone

>conclusion.

>

>sue wong

>

>Things will get better. As soon as your little one

> > starts talking things will start moving so fast.

>

>

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