Re: Social skills of verbal apraxia children?

[Guest guest]

It could be terrible two's but my Josh is now 10 1/2 and he still has problems

relating to kids his age.  He does much better with older kids and adults,

always has.  I think part of the issue is that older kids and adults may be more

patient with either trying to understand our kids or are better able to put in a

context what our kids are trying to communicate.  You're lucky your son doesn't

hit - Josh was always a hitter (that fight/flight response to stimulus/stress -

Josh always did the fight - it's very difficult to overcome that response once

it's ingrained so you really are lucky - I'm worried to death that someday Josh

will wind up charged with a battery!).  Josh has words but is difficult to

understand and, as apraxic kids get older, sometimes it takes longer to " find

his words, " so the hit thing comes out.  We've been working very hard for years

on trying to use calming techniques so, in those circumstances, he'd be able to

take the second

or two extra he needs, find the words, and then talk to whomever.  It's been a

long haul, so much so that his therapist and a psychiatrist are now suggesting I

put Josh on Celexa as an anti-anxiety thing.  I've pretty much decided against

that route, having always gone the more holistic way, but it is something i'm

still thinking about.  Hope you don't have to go that route in the future!

Talk to your OT and/or SLT/P - see if they can work out some strategies for your

son so he can relate to the kids his age.  They should be able to understand the

problem and offer some guidance.  Good luck!

Sherry and Josh

________________________________

From: elaukhuf <elaukhuf@...>

Sent: Thursday, February 12, 2009 10:00:53 PM

Subject: [ ] Social skills of verbal apraxia children?

Our 28 month old was recently diagnosed with moderate to severe verbal

apraxia. Currently our son doesn't deal well playing with other

children his age. I am a stay-at-home mom, but we are involved in a

playgroup, library story time, and church groups so he is exposed to

other children. He has an older sister, age 5, they get along well.

When playing with older children, he does fine. Examples: Today I

helped at my daughter's preschool & my son came along. The children

played duck-duck goose and he got right in there and got along great

with these 5-year-old kids. A couple days ago at playgroup, it was

complete opposite. He was fine playing on the floor with toys, but if

a child around his age got in his space (not even taking away his toy,

just getting near him), he gets upset. He doesn't hit, he just gets

flustered and comes running to me. I know part of his frustration is

he can't vocalize, but we are trying to work with him on getting past

this point.

Has anyone else had this similar social behavior with their child

diagnosed with apraxia? I'm just trying to get a grasp if this has

anything to do with apraxia or if it's just a terrible 2 phase. Thanks

for taking the time to read.

[Guest guest]

My son too was dx at 28mths with verbal apraxia.  He was never a hitter (but he

knew a lot of sign language at that age and was able to communicate via sign

language in addition to the speech he did have).  We have struggled with social

skills with our son too. Like the others he plays great with younger and older

kids. He struggles with kids his own age.  Things have gotten a little

better.....I have scheduled a lot of 1:1 play dates and I don't play with the

boys (since they would never want that) but I do float around a lot and monitor 

and intervene when necessary.

 

He still struggles in a group of 3 or more kids his age....often throwing temper

tantrums, crying etc.

From: sherry silvern <srsilvern@...>

Subject: Re: [ ] Social skills of verbal apraxia children?

Date: Friday, February 13, 2009, 9:58 AM

It could be terrible two's but my Josh is now 10 1/2 and he still has problems

relating to kids his age.  He does much better with older kids and adults,

always has.  I think part of the issue is that older kids and adults may be more

patient with either trying to understand our kids or are better able to put in a

context what our kids are trying to communicate.  You're lucky your son doesn't

hit - Josh was always a hitter (that fight/flight response to stimulus/stress -

Josh always did the fight - it's very difficult to overcome that response once

it's ingrained so you really are lucky - I'm worried to death that someday Josh

will wind up charged with a battery!).  Josh has words but is difficult to

understand and, as apraxic kids get older, sometimes it takes longer to " find

his words, " so the hit thing comes out.  We've been working very hard for years

on trying to use calming techniques so, in those circumstances, he'd be able to

take the second

or two extra he needs, find the words, and then talk to whomever.  It's been a

long haul, so much so that his therapist and a psychiatrist are now suggesting I

put Josh on Celexa as an anti-anxiety thing.  I've pretty much decided against

that route, having always gone the more holistic way, but it is something i'm

still thinking about.  Hope you don't have to go that route in the future!

Talk to your OT and/or SLT/P - see if they can work out some strategies for your

son so he can relate to the kids his age.  They should be able to understand the

problem and offer some guidance.  Good luck!

Sherry and Josh

____________ _________ _________ __

From: elaukhuf <elaukhuf (DOT) com>

@groups. com

Sent: Thursday, February 12, 2009 10:00:53 PM

Subject: [childrensapraxiane t] Social skills of verbal apraxia children?

Our 28 month old was recently diagnosed with moderate to severe verbal

apraxia. Currently our son doesn't deal well playing with other

children his age. I am a stay-at-home mom, but we are involved in a

playgroup, library story time, and church groups so he is exposed to

other children. He has an older sister, age 5, they get along well.

When playing with older children, he does fine. Examples: Today I

helped at my daughter's preschool & my son came along. The children

played duck-duck goose and he got right in there and got along great

with these 5-year-old kids. A couple days ago at playgroup, it was

complete opposite. He was fine playing on the floor with toys, but if

a child around his age got in his space (not even taking away his toy,

just getting near him), he gets upset. He doesn't hit, he just gets

flustered and comes running to me. I know part of his frustration is

he can't vocalize, but we are trying to work with him on getting past

this point.

Has anyone else had this similar social behavior with their child

diagnosed with apraxia? I'm just trying to get a grasp if this has

anything to do with apraxia or if it's just a terrible 2 phase. Thanks

for taking the time to read.

[Guest guest]

Kids with apraxia generally do well with kids who are one or two years younger

then them or one or two years older then them. I would look for playmates with

this type of mix.

Sherry,

Have you looked at Josh's auditory sequential processing at all? We worked with

Mark's processing at NACD using digit spans. When he was just a little older

then Josh at 11.5, we started with NACD, they tested his short term auditory

memory and it was that of a 5 year old! YIKES! No wonder he was struggling so

much! We worked his auditory short term memory 4 times a day for 2 minutes at a

time for 8 months and normalized it. The difference to his frustration level,

his maturity, his abilities at school, following instructions, socialization and

EVERYTHING were amazing. It was very hard work but it was a huge key for Mark.

After we had brought just this one thing up to normal, Mark was discharged from

special education where he was considered a lifer. This normalized Mark's

conversation and language but he still had poor articulation.

After we got this up to speed, we did daily oral motor exercises to work his

tongue, his jaw, his lips.... got the motor planning going and we thus got

clearer and clearer speech. This had the affect of really normalizing Mark's

articulation but we still had a lot of dopey behavior and he was very forgetful

and ADD-like.

Then I discovered biomed. I got myself a DAN doctor. We found that Mark had a

high lead load as well as arsenic and mercury burden in his body. Last January,

we used oral DMSA to chelate out the lead. With each round, the dopey ADD like

behavior went away and diminished. His maturity levels and self help skills

blossomed. He started to become indistinguishable from his peers in most areas.

I went to a parent-teacher conference last night and the teachers that Mark had

from last year tell me that he is a completely different kid today. Mark used

to literally fall out of school at the end of each day, he was so fatigued but

with chelation and supplements, that is no longer the case.

Muscle tone: We changed Mark's diet up, examined his food sensitivities and

took a good hard look at his labs. His energy pathways were not working

properly and he was really only manufacturing enough energy to support his heart

and vital organs and was not producing enough energy to provide extra to his

extremities such as speech and his hands or enough to build muscle on his body.

We started giving him a supplement regime designed to support the mitochondria

or what is known as a mito cocktail. This generally consists of COQ10,

carnitine, EFA's for good fats and vitamin C & E as antioxidants. Within 3-4

months, Mark's energy levels drastically improved but we are still working on

his body's ability to create muscle. Eventually, we will add creatine in for

this but at present, he doesn't tolerate the amino acids nor the B vitamins all

that well and we are working at repairing his metabolic processes slowly but

surely.

Involved in this energy pathway is the basic conversion of tryptophan into

seratonin and dopamine. These are neurotransmittors and you can do specific

neurotransmittor testing to see which areas are out of whack. A child who is

having problems with impuslivity can often benefit from the supplementation of

Gaba at bedtime. A child who is having issues with depression probably needs

some 5HTP at bedtime to up his levels. You can get really good neurotransmittor

testing done and find out 'exactly' where the chemical imbalance is and then

supplement accordingly. These supplements often work better then the

prescriptions because you are attacking the true deficiency.... the true core of

the problem and working it naturally delivers better long term results that are

easier on the body with zero side affects, imo. Mark's tryptophan levels are

very low and we just started supplementing this at bedtime. This can result in

foggy, innatentive behavior along with low levels of 'initiative'..... little

verve and zest! I know kids who are on Ritalin and others who are on the

anti-depresents and to be frank, the longer they stay on this junk.... the more

'changed' in their personality they become..... and it is not a good change, it

is a weird change. Having seen some of these children and watched them through

time, I wouldn't use this stuff for my child on a long term basis only if I

absolutely had to.... if there was no other way.... for a short term period....

until I could get the processes repaired biomedically.

Inherent in all of this is a lack of digestive enzymes or a disruption of the

enzymes in the body which do not allow for the proper digestion and absorbtion

of foods. We need our food to be properly digested, absorbed and sythesized for

all of the biochemical processes in our body to work properly. If something

gets tossed out of whack, the entire system is affected. For Mark and many

others, he has trouble digesting carbohydrates and proteins. He is thus not

getting enough of absorbable vitamin B, fats, carnitine, etc. into his system

to keep his methylation pathway working efficiently. Thus, his energy pathways

are a real mess and affect many, many areas of function..... from

neurotransmittors (which affect behavior and mood), to ATP production (energy

delivery pathway) to the production of glutathione (detoxification pathways....

glutathione helps our bodies get rid of 'junk'). Because of inefficient

digestion of foods, many of our kids tend to have issues in all of these

processes.

We just went Stateside to see our DAN and had more testing done. I can tell by

the dramatic improvements in Mark's function, his energy levels and his

blossoming NT social life that everything is working extremely well. Via this

testing, we will find out what is working better and where we need to continue

to bring his body forth completely to good health. We probably won't get the

results back until March but they will tell me a 'whole' lot and give us a plan

of effective action.

Our only physical issues that remain are Mark's hands and his visual motor

skills or lack therof. Everything else (including speech) is now completely NT.

This is slowly getting better and I have no doubt that once we get the remaining

mercury from his body, repair his methylation cycle..... this will go away and

he will have the rest of his life to enjoy the benefits of the hard work we have

done.

Note that I did not start all of this until Mark was almost 12. He just turned

14 at Christmas time and he is a different kid with a new life. Everything has

changed for him and he is having the happiest year of his life at school this

year. I am a single mom and have had to pay for most of this out of pocket but

it all was not nearly as expensive as I thought it would be. The most expensive

part are the really comprehensive labs. The labwork we did last week was $653

but if I had been from the US, I believe that a lot of it would have been

covered by insurance. They have special codes available for this apparently.

Those labs are so, so worth it because you get an extremely detailed picture of

what is going on inside of your child..... why they cannot get muscle tone and

why they are struggling so much metabolically. Most of this stuff is truely

physical in nature and we need to look at the science of the body as well as the

therapy.

Thought that I would share.....

Janice

Mother of Mark, 14

[ ] Social skills of verbal apraxia children?

Our 28 month old was recently diagnosed with moderate to severe verbal

apraxia. Currently our son doesn't deal well playing with other

children his age. I am a stay-at-home mom, but we are involved in a

playgroup, library story time, and church groups so he is exposed to

other children. He has an older sister, age 5, they get along well.

When playing with older children, he does fine. Examples: Today I

helped at my daughter's preschool & my son came along. The children

played duck-duck goose and he got right in there and got along great

with these 5-year-old kids. A couple days ago at playgroup, it was

complete opposite. He was fine playing on the floor with toys, but if

a child around his age got in his space (not even taking away his toy,

just getting near him), he gets upset. He doesn't hit, he just gets

flustered and comes running to me. I know part of his frustration is

he can't vocalize, but we are trying to work with him on getting past

this point.

Has anyone else had this similar social behavior with their child

diagnosed with apraxia? I'm just trying to get a grasp if this has

anything to do with apraxia or if it's just a terrible 2 phase. Thanks

for taking the time to read.

[Guest guest]

I forgot to mention, Josh had been diagnosed with verbal apraxia right around

that same age as your sons, and we had been using signs, PECS (when he was ready

for them), etc.  The problem with signs is that other kids, without some

training, don't know what the signs mean either and, with Josh's fine motor

issues, his signs were usually " adapted " to fit how he could do them.  Be glad

your sons were not hitters - schools (and other parents) rightfully need to be

concerned about the safety of other kids but Josh's daycare and schools seemed

to lean toward keeping other kids away from Josh so he wouldn't hit them.  Well,

what does that teach either the other kids or Josh and how does that help with

socialization??  At Josh's p-t conference last week, where I said I noted an

aide acting as a " blocker " as Josh walked down the hallway (I saw this aide

literally push other kids out of the way saying, " get out of the way, ___, Josh

is coming! " OMG!! 

school has been doing other things that are equally as stupid!), I told the

team that Josh's therapist has made suggestions to help Josh get control of

himself since he is not going to be able to control others around him, those

suggestions have been passed on to the school by both me and the therapist, so,

gosh, let's work on those suggestions.  So, we came up with (more) strategies

for walking down the hallway, dealing with other kids in the classroom, etc.

(we'll see if any are implemented!  I swear I'm ready to become a hermit with my

son and just move into a cave somewhere!).

Good luck to you both!

Sherry and Josh

________________________________

From: hildy gogal <hildygogal@...>

Sent: Friday, February 13, 2009 9:19:50 AM

Subject: Re: [ ] Social skills of verbal apraxia children?

My son too was dx at 28mths with verbal apraxia.  He was never a hitter (but he

knew a lot of sign language at that age and was able to communicate via sign

language in addition to the speech he did have).  We have struggled with social

skills with our son too. Like the others he plays great with younger and older

kids. He struggles with kids his own age.  Things have gotten a little

better.....I have scheduled a lot of 1:1 play dates and I don't play with the

boys (since they would never want that) but I do float around a lot and monitor 

and intervene when necessary.

 

He still struggles in a group of 3 or more kids his age....often throwing temper

tantrums, crying etc.

From: sherry silvern <srsilvern (DOT) com>

Subject: Re: [childrensapraxiane t] Social skills of verbal apraxia children?

@groups. com

Date: Friday, February 13, 2009, 9:58 AM

It could be terrible two's but my Josh is now 10 1/2 and he still has problems

relating to kids his age.  He does much better with older kids and adults,

always has.  I think part of the issue is that older kids and adults may be more

patient with either trying to understand our kids or are better able to put in a

context what our kids are trying to communicate.  You're lucky your son doesn't

hit - Josh was always a hitter (that fight/flight response to stimulus/stress -

Josh always did the fight - it's very difficult to overcome that response once

it's ingrained so you really are lucky - I'm worried to death that someday Josh

will wind up charged with a battery!).  Josh has words but is difficult to

understand and, as apraxic kids get older, sometimes it takes longer to " find

his words, " so the hit thing comes out.  We've been working very hard for years

on trying to use calming techniques so, in those circumstances, he'd be able to

take the second

or two extra he needs, find the words, and then talk to whomever.  It's been a

long haul, so much so that his therapist and a psychiatrist are now suggesting I

put Josh on Celexa as an anti-anxiety thing.  I've pretty much decided against

that route, having always gone the more holistic way, but it is something i'm

still thinking about.  Hope you don't have to go that route in the future!

Talk to your OT and/or SLT/P - see if they can work out some strategies for your

son so he can relate to the kids his age.  They should be able to understand the

problem and offer some guidance.  Good luck!

Sherry and Josh

____________ _________ _________ __

From: elaukhuf <elaukhuf (DOT) com>

@groups. com

Sent: Thursday, February 12, 2009 10:00:53 PM

Subject: [childrensapraxiane t] Social skills of verbal apraxia children?

Our 28 month old was recently diagnosed with moderate to severe verbal

apraxia. Currently our son doesn't deal well playing with other

children his age. I am a stay-at-home mom, but we are involved in a

playgroup, library story time, and church groups so he is exposed to

other children. He has an older sister, age 5, they get along well.

When playing with older children, he does fine. Examples: Today I

helped at my daughter's preschool & my son came along. The children

played duck-duck goose and he got right in there and got along great

with these 5-year-old kids. A couple days ago at playgroup, it was

complete opposite. He was fine playing on the floor with toys, but if

a child around his age got in his space (not even taking away his toy,

just getting near him), he gets upset. He doesn't hit, he just gets

flustered and comes running to me. I know part of his frustration is

he can't vocalize, but we are trying to work with him on getting past

this point.

Has anyone else had this similar social behavior with their child

diagnosed with apraxia? I'm just trying to get a grasp if this has

anything to do with apraxia or if it's just a terrible 2 phase. Thanks

for taking the time to read.

[Guest guest]

Hi-

I just wanted to tell you that our son is exactly the same way. He

has 7 year old twin sisters and plays games with them and all of

their friends. He is nice to babies. But, if you get him around

kids his own age, in a confined space, he doesn't do well. In fact,

our once calm and docile child will now throw things at these kids.

Put him outside at the park, with lots of time to observe other kids

and learn the rules of their game, and he will play with them. Just

b/c your child can't talk, doesn't mean he isn't communicating with

you. He is letting you know that he doesn't want to play with kids

his own age, these interactions need to be on his own terms, and

completely facilitated, or else they MAY turn into agressive

interactions.

If I could go back to when my son first showed me he was either

overloaded with sensory input, or too much pressure to speak, or not

enough time to process the rules of the game the other kids were

playing, I would have taken a break for a while from playgroups and

preschool with same-age peers. I would have let him play with his

older siblings, and with me, until he KNEW how to play with other

kids, by having lots of practice opportunities to learn the rules of

social interaction. We are still spending lots of time taking turns,

both verbal and non-verbal, adjusting to others setting the rules of

play, teaching him how to respond in a nonverbal manner, or a verbal

one (no thank you) if he doesn't want to partipate. Teaching the

words " mine " or " my turn " and waiting rather than taking items, or

pushing; finding appropriate outlets when he gets frustrated like

putting a swing he could go to or lots of heavy work activities

available to him to get all that frustration out without throwing.

I would do all the things I'm doing now, but teach him that first

before I add to an already difficult situation. I always start with

his strength, then teach something new in that moment or

environment. So if he is good with games with an older sibling,

teach those skills he is having problems with in that environment,

with that person. THEN practice this is a very supervised way with

peers. I don't think we can expect them to automatically learn this

when under duress, which is what a peer interaction is like for my

son in a preschool room.

I also 100% agree that there are so may supplement options and diets

that we are only just now exploring that are making a world of

diference for our son. I wish you the best, and yes, ANYTHING at two

can be a phase, you just don't want them to practice bad behavior so

that it becomes a habit.

Penny

http://twoplusoneequalsfive.blogspot.com/

>

> Our 28 month old was recently diagnosed with moderate to severe

verbal

> apraxia. Currently our son doesn't deal well playing with other

> children his age. I am a stay-at-home mom, but we are involved in

a

> playgroup, library story time, and church groups so he is exposed

to

> other children. He has an older sister, age 5, they get along

well.

> When playing with older children, he does fine. Examples: Today I

> helped at my daughter's preschool & my son came along. The

children

> played duck-duck goose and he got right in there and got along

great

> with these 5-year-old kids. A couple days ago at playgroup, it was

> complete opposite. He was fine playing on the floor with toys, but

if

> a child around his age got in his space (not even taking away his

toy,

> just getting near him), he gets upset. He doesn't hit, he just

gets

> flustered and comes running to me. I know part of his frustration

is

> he can't vocalize, but we are trying to work with him on getting

past

> this point.

>

> Has anyone else had this similar social behavior with their child

> diagnosed with apraxia? I'm just trying to get a grasp if this has

> anything to do with apraxia or if it's just a terrible 2 phase.

Thanks

> for taking the time to read.

>

[Guest guest]

Janice, this is very interesting. I couldn't agree with you more

about the deleterious effects of using pharmaceuticals to override

symptoms versus taking a supportive nutritional approach to shore up

biochemical mechanisms. I have two LD kids, one of whom has

significant language issues - late talker, etc.. I have been sick

with " chronic fatigue syndrome " (a silly name for a devastating

medical condition)for the last 6 years, which I believe to be a

mitrochondrial dysfunction, methylation cycle defect. I say this

because last May I started a derivative of the Yasko protocol that

targets methylation cycle defects and the results have been

outstanding where NOTHING else helped. I appreciate your feedback

and will get to work on my boys. Money is the problem, and insurance

has not covered anything relevant to my getter better. I've had to

go to integrative docs who do not take insurance. The genetic

testing was not covered by insurance either. I'm assuming you got

the neurotransmitter tests from the DAN doc? I would love to know

where to get them, my whole family could benefit from this. Thank

you for sharing your inspiring story.

>

> Kids with apraxia generally do well with kids who are one or two

years younger then them or one or two years older then them. I would

look for playmates with this type of mix.

>

> Sherry,

>

> Have you looked at Josh's auditory sequential processing at all?

We worked with Mark's processing at NACD using digit spans. When he

was just a little older then Josh at 11.5, we started with NACD, they

tested his short term auditory memory and it was that of a 5 year

old! YIKES! No wonder he was struggling so much! We worked his

auditory short term memory 4 times a day for 2 minutes at a time for

8 months and normalized it. The difference to his frustration level,

his maturity, his abilities at school, following instructions,

socialization and EVERYTHING were amazing. It was very hard work but

it was a huge key for Mark. After we had brought just this one thing

up to normal, Mark was discharged from special education where he was

considered a lifer. This normalized Mark's conversation and language

but he still had poor articulation.

>

> After we got this up to speed, we did daily oral motor exercises to

work his tongue, his jaw, his lips.... got the motor planning going

and we thus got clearer and clearer speech. This had the affect of

really normalizing Mark's articulation but we still had a lot of

dopey behavior and he was very forgetful and ADD-like.

>

> Then I discovered biomed. I got myself a DAN doctor. We found

that Mark had a high lead load as well as arsenic and mercury burden

in his body. Last January, we used oral DMSA to chelate out the

lead. With each round, the dopey ADD like behavior went away and

diminished. His maturity levels and self help skills blossomed. He

started to become indistinguishable from his peers in most areas. I

went to a parent-teacher conference last night and the teachers that

Mark had from last year tell me that he is a completely different kid

today. Mark used to literally fall out of school at the end of each

day, he was so fatigued but with chelation and supplements, that is

no longer the case.

>

> Muscle tone: We changed Mark's diet up, examined his food

sensitivities and took a good hard look at his labs. His energy

pathways were not working properly and he was really only

manufacturing enough energy to support his heart and vital organs and

was not producing enough energy to provide extra to his extremities

such as speech and his hands or enough to build muscle on his body.

We started giving him a supplement regime designed to support the

mitochondria or what is known as a mito cocktail. This generally

consists of COQ10, carnitine, EFA's for good fats and vitamin C & E

as antioxidants. Within 3-4 months, Mark's energy levels drastically

improved but we are still working on his body's ability to create

muscle. Eventually, we will add creatine in for this but at present,

he doesn't tolerate the amino acids nor the B vitamins all that well

and we are working at repairing his metabolic processes slowly but

surely.

>

> Involved in this energy pathway is the basic conversion of

tryptophan into seratonin and dopamine. These are neurotransmittors

and you can do specific neurotransmittor testing to see which areas

are out of whack. A child who is having problems with impuslivity

can often benefit from the supplementation of Gaba at bedtime. A

child who is having issues with depression probably needs some 5HTP

at bedtime to up his levels. You can get really good

neurotransmittor testing done and find out 'exactly' where the

chemical imbalance is and then supplement accordingly. These

supplements often work better then the prescriptions because you are

attacking the true deficiency.... the true core of the problem and

working it naturally delivers better long term results that are

easier on the body with zero side affects, imo. Mark's tryptophan

levels are very low and we just started supplementing this at

bedtime. This can result in foggy, innatentive behavior along with

low levels of 'initiative'..... little verve and zest! I know kids

who are on Ritalin and others who are on the anti-depresents and to

be frank, the longer they stay on this junk.... the more 'changed' in

their personality they become..... and it is not a good change, it is

a weird change. Having seen some of these children and watched them

through time, I wouldn't use this stuff for my child on a long term

basis only if I absolutely had to.... if there was no other way....

for a short term period.... until I could get the processes repaired

biomedically.

>

> Inherent in all of this is a lack of digestive enzymes or a

disruption of the enzymes in the body which do not allow for the

proper digestion and absorbtion of foods. We need our food to be

properly digested, absorbed and sythesized for all of the biochemical

processes in our body to work properly. If something gets tossed out

of whack, the entire system is affected. For Mark and many others,

he has trouble digesting carbohydrates and proteins. He is thus not

getting enough of absorbable vitamin B, fats, carnitine, etc. into

his system to keep his methylation pathway working efficiently.

Thus, his energy pathways are a real mess and affect many, many areas

of function..... from neurotransmittors (which affect behavior and

mood), to ATP production (energy delivery pathway) to the production

of glutathione (detoxification pathways.... glutathione helps our

bodies get rid of 'junk'). Because of inefficient digestion of

foods, many of our kids tend to have issues in all of these processes.

>

> We just went Stateside to see our DAN and had more testing done. I

can tell by the dramatic improvements in Mark's function, his energy

levels and his blossoming NT social life that everything is working

extremely well. Via this testing, we will find out what is working

better and where we need to continue to bring his body forth

completely to good health. We probably won't get the results back

until March but they will tell me a 'whole' lot and give us a plan of

effective action.

>

> Our only physical issues that remain are Mark's hands and his

visual motor skills or lack therof. Everything else (including

speech) is now completely NT. This is slowly getting better and I

have no doubt that once we get the remaining mercury from his body,

repair his methylation cycle..... this will go away and he will have

the rest of his life to enjoy the benefits of the hard work we have

done.

>

> Note that I did not start all of this until Mark was almost 12. He

just turned 14 at Christmas time and he is a different kid with a new

life. Everything has changed for him and he is having the happiest

year of his life at school this year. I am a single mom and have had

to pay for most of this out of pocket but it all was not nearly as

expensive as I thought it would be. The most expensive part are the

really comprehensive labs. The labwork we did last week was $653 but

if I had been from the US, I believe that a lot of it would have been

covered by insurance. They have special codes available for this

apparently. Those labs are so, so worth it because you get an

extremely detailed picture of what is going on inside of your

child..... why they cannot get muscle tone and why they are

struggling so much metabolically. Most of this stuff is truely

physical in nature and we need to look at the science of the body as

well as the therapy.

>

> Thought that I would share.....

>

> Janice

> Mother of Mark, 14

>

>

> [ ] Social skills of verbal apraxia

children?

>

> Our 28 month old was recently diagnosed with moderate to severe

verbal

> apraxia. Currently our son doesn't deal well playing with other

> children his age. I am a stay-at-home mom, but we are involved in

a

> playgroup, library story time, and church groups so he is exposed

to

> other children. He has an older sister, age 5, they get along

well.

> When playing with older children, he does fine. Examples: Today I

> helped at my daughter's preschool & my son came along. The

children

> played duck-duck goose and he got right in there and got along

great

> with these 5-year-old kids. A couple days ago at playgroup, it

was

> complete opposite. He was fine playing on the floor with toys,

but if

> a child around his age got in his space (not even taking away his

toy,

> just getting near him), he gets upset. He doesn't hit, he just

gets

> flustered and comes running to me. I know part of his frustration

is

> he can't vocalize, but we are trying to work with him on getting

past

> this point.

>

> Has anyone else had this similar social behavior with their child

> diagnosed with apraxia? I'm just trying to get a grasp if this

has

> anything to do with apraxia or if it's just a terrible 2 phase.

Thanks

> for taking the time to read.

>

>

[Guest guest]

,

Amy Yasko is EXPENSIVE!!! I could never afford her program! But I do hear that

she is very good. I congradulate you on doing her program for yourself. I'll

bet it hasn't been easy.

There are a lot of different labs out there and the first one that I had done

for Mark was the Metametrix pediatric Ion Profile that was done about a year and

a half ago. We used those results to tailor our program for him for a long,

long time. These cost approximately $750 US, I believe but don't quote me on

that because we had it done in Canada and this was the price that someone on one

of the boards told me that they had paid for it Stateside. We just had a Genova

Diagnostics Nutraval lab that cost about $653 if you don't have insurance. This

lab has codes with it that ARE covered by most insurance companies. If you have

insurance, you pay $150 directly to the lab when your doctor sends in the

bloodwork. The Nutrval test that we had done is pretty comprehensive and goes

through a lot of systems in the body. It will let you know whether the

methylation systems are out of whack (which they generally are with these types

of issues). Since we travel, we only see him once every 3-4 months but I know

people who travel great distances to see their DAN and only see them once a

year. Everything else is done via phone consultations.

As far as a DAN doctor goes, I actually take Mark to see an environmental doctor

in Utah (when we go for our NACD evaluation) who follows the DAN model and his

initial charge is about $275 and then after that, an office visit is $60. I

know that he does accept some types of insurance and many of the DAN doctors

will accept insurance if they possibly can. Any procedures that you do are

extra but don't cost me a fortune. The labs are soooooo worth it to get done!

Labs for metal challenges generally cost me $150 Cdn and I have a Canadian

doctor do those for me. I don't know what they are US but they are most likely

less.

A good DAN doctor is worth his weight in gold! If you go to www.autism.com they

have a list of DAN practitioners, State by State. Often if you post where you

are from on various biomed boards, people are eager to tell you of good DAN

doctors who are close to you. As with anything, some doctors are good and some

are not so good! So it is prudent to ask on the various boards. Also on this

website, there are a host of webcasts delivered by various DAN doctors and

scientists discussing the science behind autism. I have learned a great deal in

watching these webcasts. At first, the science was so complex that it made my

head spin. These days, I understand it better and find myself revisiting the

webcasts to fine tune my understanding. Now..... you and I both know that our

kids are not ASD but Mark's labs are identical to the ASD kids but his metals

are not as high and he is not nearly as yeasty as the ASD kids. Everything else

is very, very similiar.

So, really, anything on the spectrum really does affect all areas of the body.

I like to refer to Mark as ASD without the A! I cannot tell you how similiar

his condition used to be to chronic fatigue and indeed his methylation system is

probably identical to yours! Same defects.... same issues and problems with

energy. For our kids with hypotonia, you need to take it a step further because

the body is also not producing enough creatine in the ATP cycle and thus we get

low muscle tone..... thus it is like your condition but worse.

It makes sense to look at the science. I have always asked myself through the

years.... how can low muscle tone be a psychological problem? Of course, it

can't be just psychological.... it really is PHYSICAL! This is a physical

problem our kids have and while it is greatly overcome by therapy, we must look

at the body and ask ourselves 'why' cannot our children develop muscle? Muscle

in the face, the tongue, the jaw, the body core, the arms, the legs..... why?

You really see it in an older child like Mark..... zero muscle! His 10 year old

girl cousin half his size can beat him in an arm wrestle! That body just

doesn't want to develop any muscle and you need muscle to do everyday things in

life.

Where are you located?

Janice

Mother of Mark, 14

[Guest guest]

WOW Parents! Thank you so much for responses. You don't realize how

much this has helped me. We are very new to apraxia and researching it

as much as possible. It is comforting to know we are not alone, and

it's been great to read your advice. It's very frustrating as a parent

to see our son behave this way around peers his age, especially when I

see most of the other children getting along so well. Our son is

generally a good natured child and has brought us much joy. Like you

mentioned too, we will discuss this with our speech pathologist too to

try and work through this together.

[Guest guest]

I noticed that some that answered you gave you advice that would not

hold true if you were to join a local support group. My son Tanner

and many of the apraxic children I have known through friends I have

made in this group over the years blend in as " normal " with children

in the neighborhood, their class etc. Not everyone reads every

message and in order to get a better picture you'll have to give this

message a few days for others to answer. Unfortunately most of us

that have children that are for the most part " normal " are not on this

grouplist often (or at all) anymore. I appreciate those who stay around to

continue to help even when they don't have to for their own child.

One thing to note however is that in preschool years the apraxic

children have so much to deal with, so much time spent in therapy. I

know my son didn't have much time to do anything but therapy and back

when he was essentially nonverbal he did much better on one on one

playdates than in group situations.

Apraxia in itself is neither a cognitive nor social disorder. If

there are social aspects as well it is possible that your child is

dealing with more than apraxia. It's not unusual for example to have

a child with both apraxia and autism (etc.) On the other hand I

wouldn't jump to diagnosis. Again apraxia in itself is a tough,

frustrating condition to deal with. It tends to overlap with sensory,

motor planning and or tonal issues.

It's like I've already written -it's hard to enjoy the beauty of the

ocean when you are drowning. Please don't jump to any conclusions

-and that includes coming to the conclusion that apraxia has anything

at all to do with social issues just because a few parents here may

have found that true for their own child. There are other reasons why

some here found social issues -some parents here didn't get

appropriate therapy early and dealt with issues longer than others for

example. Teasing and/or frustration can lead to secondary behavioral

or social issues -but again that is not the norm for those with

apraxia in this group who receive early appropriate placement/therapy. I

again suggest you find a local support group- what state are you in?

Here's some archives that may help (many more)

Re: SOCIAL SKILLS

I agree this is not just a " special needs " problem -this is

something anyone can have ...and it may not even be a problem. So

speaking as one who was quite comfortable being shy when I felt shy

as a young child -and one who grew up and became more inclined to

try to be an apprentice on Trump's new TV show (no I am not

at all shy today!) being shy is not a problem, and is not

necessarily permanent. Perhaps it's part of a developmental stage

and some just

get stuck -and perhaps it just is the way one is. Don't assume

however that shy people feel left out. When I was shy I 'wanted' to

stay out of the spotlight -that's what made me happy.

This is one to follow your gut on and discuss with professionals

that know your child that you respect. I know that when I was asked

to say " hi " to someone when I was in my shy stage as a young child

it terrified me. Do I know why? I remember being scared, sometimes

terrified to the point of tears and hiding -but no, don't know why.

I know my mom never forced me to say " hi " My mom let me be shy.

She didn't push it and let me hide behind couches or her and just

said " it's OK " . Again -I outgrew that stage. Some kids may need help

with social skills, but shyness in a preschool child doesn't mean

shyness forever. I know that for a fact.

As some of you know who are not new members, I was very sick as an

infant from celiac disease which almost killed me, and spent much of

my early childhood in the hospital. I did attend a few days of

preschool. and a few days of kindergarten, but the rest of the time

I was in the hospital or home sick. The only reason I was able to

move up to first grade is because I passed a test they gave me which

I still remember taking.

I was very shy, and I even recall being afraid of certain people at

times -I don't know why. I was friends with two little girls who

lived on either side of my house, one who I'm still friends with

today, and with some children I met in the hospital, but even with

them I was shy and spoke very soft. I spoke so soft people had to

strain to hear me -and as I started to go to school more, I still

spoke soft and wrote soft. Teachers had to write on my papers to

write darker because they couldn't read my work.

I never had any classes on how to say hi, how to speak louder, or

how not to be shy. Again, I don't recall anyone seeing my shyness as

a problem. As I grew up I stopped being sick all the time and

changed in other ways. I became known as " social butterfly " who can

make friends with a wrong number on the phone. Back when I was

working in animation actually I was asked to be a VJ for MTV (I

worked on lots of the behind the scenes commercials) I did like

behind the scenes work more than being in front of the camera -but I

was not shy anymore -and very social. I just knew what I wanted.

Actually if you ask most people I grew up with about me (except my

friend Debbie who knew me when I was shy as a young child and wishes

I was a bit shier today) -probably the last word anyone would use to

describe me is shy -or that I speak too soft! Tanner too was shy

when he was unable to communicate and preschool age -and today he

too is as far from shy as anyone -that's for sure! Tanner walked up

to his " girlfriend's " mom to introduce himself and ask for Emma's

phone number. (Johanna, Emma's mom said that it took him awhile to

get it out -but she understood every word)

It would be interesting to know from shy adults -how were they as

children, and were they " taught " how to be more social and did it

help them?

Here is some of what I found online:

" special guest Mark Okyansky spoke about how he changed from a shy

stutterer to a confident young adult thanks to the involvement of

his Big Brother and the caring counselors that he met at Camp Max

Straus. "

http://www.jewishjournal.com/home/preview.php?id=11847

" But I learned my mental toughness in college. I was a shy,

introverted kid. I used college to learn how to speak with people

and interact. College is where I became a man. "

http://www.denverpost.com/Stories/0,1413,36~86~1962664,00.html

" ST. PAUL, Minn. - Five years ago, he was a shy, acne-faced teenager

who was living in the basement of a house belonging to a future Hall

of Fame goaltender. Today, Tanguay is carving his own niche as

one of the NHL's brightest stars.

http://www.rockymountainnews.com/drmn/avalanche/article/0,1299,DRMN_39_2636187,0\

\

0.html

My Achy Breaky Heart: Helping the Shy Adolescent

Lorna J. Lacina-Gifford and McFerrin

Northwestern State University

http://www.lmsaonline.org/achybreaky.htm

Don't let the title fool you -lots of great suggestions here just in

case your child doesn't outgrow it. (and again -I wonder why some

don't outgrow being shy...were they pushed? Or is this just normal?)

Re: apraxia and social skills

Hi Traci!

It's no secret -our children even when doing " amazing " are not

always up to speed expressively. Don't let it discourage you about

's amazing progress so far. Amazing for our kids in speech

shouldn't be compared to amazing for those that don't have

impairments. The " slow " stage now is nothing in comparison to years

ago before multisensory therapies and the " right " EFAs. There is

great hope for apraxic children -and together we are breaking new

ground.

We cover the rule of the fourths in The Late Talker book. For

example -it's perfectly normal for your 1 1/2 year old child to be

understood by you 95% of the time and to " strangers " (which would

include the new teacher) 25% of the time. Typically by three -most

children are understandable 75% of the time to strangers -and 100%

of the time to us.

Make sure in your communication book you put down words the way your

child says them. Most of our children tend to break down a bit when

they first go to sentence attempts. They may be able to say a

word " perfect " (even for a stranger to hear it!) when they say it in

isolation -or with a model. Take that same word and try to put it

into a sentence and without a model -and it becomes a blur. Here is

a personal example:

When Tanner was three I would " hear " Tanner say " tiny bit for me? "

and I'm thrilled he's " talking " to me!! Of course he didn't say it

clearly -but since I knew what he meant I praise him for " good

talking Tanner " and then repeat back each word one at a time for him

as a model (change it to " Can - I - have - a - tiny - bit -

please? " ) and this time most words are fairly clear for others to

understand. However in reality -before I broke down the words in

the " sentence " attempt -he actually said something 'only' I or my

husband would understand. " tee tee tee tee me? "

Just like when a child with apraxia goes to a longer word they break

down -when they first go to sentences or longer sentence they break

down again. What I was told is that the " blocking " the syllables -

which is what Tanner was doing -was preparing him for sentence

structure. So his " die die die " while I tried to put a cap on his

head was " this too tight " and " die die die die die die " when

pointing outside was clearly to me saying " I want to go outside " It

got to a point that Tanner would talk -and then look at me and wait

for me to tell everyone what he said. Fortunately I was quite good

at it -but if I didn't know -that's when the tears started. I told

people Tanner reminded me of Harpo Marx -such a great sense of

humor -and the gestures he would use to try to get us to understand,

and he made me have to be a detective. I love the picture of the

child on the cover of The Late Talker book -because to see that face

against a blank wall with no clues to go on with an apraxic child is

tantrum in waiting as many of you know.

How is your child when you take him to a birthday party with other

kids he doesn't know? How is he at the park with children he

doesn't know? How is he with children one on one -or with children

he knows?

It doesn't sound like 's teacher understands apraxia. If our

children could " pick up " language just by being around good role

models -then they would have... from us -like other children do who

never go to a preschool. I just sent a copy of The Late Talker book

over to Candy -one of the producers I worked for in animation. I

wrote in the book " God must have both a plan and a sense of humor or

how else could the same person that had to be bribed with lollipops

to stop talking grow up to have two late talkers who had to be bribed

with lollipops to start " Working in animation... talking all the

time is not unusual " I WANT my MTV!! " " I want MY MTV!! " " I want my

MTV!! " http://www.awn.com/mag/issue2.10/2.10pages/2.10mtv.html (my

name used to be Fernandez)

Why not observe the morning class -don't go so much by communication

skills level as much as academic level. No matter what -the

teachers are talking all day long -as well as the SLPs. Also -why

your son in the " verbal " class? Don't tell me in Hawaii you guys

have a whole morning class of apraxic children! I'm sure some in

there only have simple delays in speech. If she's so strong on

leaving your apraxic child that she " doesn't understand " in the

verbal class (warning -warning - for self esteem issues before they

develop!) then why not one of the many other non apraxic non verbal children

from the morning class? Why ? Don't all the others in

the " nonverbal " morning class need positive role models too if

that's the thought? I'm confused. (Now I'm talking like I'm you at an IEP

meeting!)

Tanner at three years old tended also to shy away from other

children he didn't know. We'll never know for sure if it's due to

lack of self esteem or frustration from not being able to

communicate, or most likely a bit of both. I can tell you that as

the weeks went on -he formed friendships and grew to love his

teachers and classmates. Tanner was also schooled in a hearing

impaired deaf school -and I too was " warned " that he " wouldn't have

positive role models " I laugh at that! What -I live in a bubble now?

My kid is at school a few measly hours a day for five days a week -

and I took him to the park -therapy -play dates -life. When Tanner was at

preschool -it was for therapy first, education second -social skills

were a plus -but not my priority from the preschool for him. If that was my

main goal I wouldn't have fought for appropriate services and would

have just stuck Tanner in a good " normal " preschool. I've written

here before -if your child regresses around other children -he may

do better on one on one -and at times perhaps not with " normal " kids. Our

children

are bright enough to know they are not doing what others are. And

if they could " pick it up " just by being around it -we wouldn't be

here! And the advice would be -put your kid in day care and they

will be fine.

Well once you decide which class is the best (if either of them are)

Try to get the phone numbers of some of the other moms in the class

to set up play dates. If the school won't give phone numbers to

you - have a party and invite all the children and put an RSVP on

the invite. Make it a " get to know each other " party! Also go and

observe the class and see if there is a child or two your child

appears to gravitate more. Don't just take the teacher's word for

it -she may or may not notice -you will always notice -it's your child.

=====

[Guest guest]

Typically by three -most

children are understandable 75% of the time to strangers -and 100%

of the time to us.

Hi ! My son is going to be three later this month.....I am upset hearing that by

three most people can understand kids with apraxia...no one can really

understand him unless it is one

word and its obvious....I understand him but sometimes I dont and it breaks my

heart because he looks sad and frustrated. I wish I could get someone to really

look at my child and tell me exactly what I am dealing with....I am in New York

and the consultations seem very expensive.

Secondly, how am I supposed to make playdates with kids his age if he cant

really talk.He has a friend down the block and now as this kid gets older , he

gravitates to my six year old and not to my little guy anymore. I can get him to

play with kids in his class that are 18-24 months but they dont talk

either.......these kids are younger and a lot of the time are crying and they

dont really talk.His goal on his iep is to start playing more with kids. He is

only shy at school and very anxious (according to his teachers) there .If he is

with kids older than six, they arent wondering why he is talking and they cant

understand. They just think he is younger than he is and they run and play tag

and take care of him as the little guy.Maybe Im just rambling but I am wondering

....play with kids younger that dont talk,his age or older . Thanks  

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: Social skills of verbal apraxia children?

Date: Sunday, February 15, 2009, 6:32 PM

I noticed that some that answered you gave you advice that would not

hold true if you were to join a local support group. My son Tanner

and many of the apraxic children I have known through friends I have

made in this group over the years blend in as " normal " with children

in the neighborhood, their class etc. Not everyone reads every

message and in order to get a better picture you'll have to give this

message a few days for others to answer. Unfortunately most of us

that have children that are for the most part " normal " are not on this

grouplist often (or at all) anymore. I appreciate those who stay around to

continue to help even when they don't have to for their own child.

One thing to note however is that in preschool years the apraxic

children have so much to deal with, so much time spent in therapy. I

know my son didn't have much time to do anything but therapy and back

when he was essentially nonverbal he did much better on one on one

playdates than in group situations.

Apraxia in itself is neither a cognitive nor social disorder. If

there are social aspects as well it is possible that your child is

dealing with more than apraxia. It's not unusual for example to have

a child with both apraxia and autism (etc.) On the other hand I

wouldn't jump to diagnosis. Again apraxia in itself is a tough,

frustrating condition to deal with. It tends to overlap with sensory,

motor planning and or tonal issues.

It's like I've already written -it's hard to enjoy the beauty of the

ocean when you are drowning. Please don't jump to any conclusions

-and that includes coming to the conclusion that apraxia has anything

at all to do with social issues just because a few parents here may

have found that true for their own child. There are other reasons why

some here found social issues -some parents here didn't get

appropriate therapy early and dealt with issues longer than others for

example. Teasing and/or frustration can lead to secondary behavioral

or social issues -but again that is not the norm for those with

apraxia in this group who receive early appropriate placement/therapy. I

again suggest you find a local support group- what state are you in?

Here's some archives that may help (many more)

Re: SOCIAL SKILLS

I agree this is not just a " special needs " problem -this is

something anyone can have ...and it may not even be a problem. So

speaking as one who was quite comfortable being shy when I felt shy

as a young child -and one who grew up and became more inclined to

try to be an apprentice on Trump's new TV show (no I am not

at all shy today!) being shy is not a problem, and is not

necessarily permanent. Perhaps it's part of a developmental stage

and some just

get stuck -and perhaps it just is the way one is. Don't assume

however that shy people feel left out. When I was shy I 'wanted' to

stay out of the spotlight -that's what made me happy.

This is one to follow your gut on and discuss with professionals

that know your child that you respect. I know that when I was asked

to say " hi " to someone when I was in my shy stage as a young child

it terrified me. Do I know why? I remember being scared, sometimes

terrified to the point of tears and hiding -but no, don't know why.

I know my mom never forced me to say " hi " My mom let me be shy.

She didn't push it and let me hide behind couches or her and just

said " it's OK " . Again -I outgrew that stage. Some kids may need help

with social skills, but shyness in a preschool child doesn't mean

shyness forever. I know that for a fact.

As some of you know who are not new members, I was very sick as an

infant from celiac disease which almost killed me, and spent much of

my early childhood in the hospital. I did attend a few days of

preschool. and a few days of kindergarten, but the rest of the time

I was in the hospital or home sick. The only reason I was able to

move up to first grade is because I passed a test they gave me which

I still remember taking.

I was very shy, and I even recall being afraid of certain people at

times -I don't know why. I was friends with two little girls who

lived on either side of my house, one who I'm still friends with

today, and with some children I met in the hospital, but even with

them I was shy and spoke very soft. I spoke so soft people had to

strain to hear me -and as I started to go to school more, I still

spoke soft and wrote soft. Teachers had to write on my papers to

write darker because they couldn't read my work.

I never had any classes on how to say hi, how to speak louder, or

how not to be shy. Again, I don't recall anyone seeing my shyness as

a problem. As I grew up I stopped being sick all the time and

changed in other ways. I became known as " social butterfly " who can

make friends with a wrong number on the phone. Back when I was

working in animation actually I was asked to be a VJ for MTV (I

worked on lots of the behind the scenes commercials) I did like

behind the scenes work more than being in front of the camera -but I

was not shy anymore -and very social. I just knew what I wanted.

Actually if you ask most people I grew up with about me (except my

friend Debbie who knew me when I was shy as a young child and wishes

I was a bit shier today) -probably the last word anyone would use to

describe me is shy -or that I speak too soft! Tanner too was shy

when he was unable to communicate and preschool age -and today he

too is as far from shy as anyone -that's for sure! Tanner walked up

to his " girlfriend' s " mom to introduce himself and ask for Emma's

phone number. (Johanna, Emma's mom said that it took him awhile to

get it out -but she understood every word)

It would be interesting to know from shy adults -how were they as

children, and were they " taught " how to be more social and did it

help them?

Here is some of what I found online:

" special guest Mark Okyansky spoke about how he changed from a shy

stutterer to a confident young adult thanks to the involvement of

his Big Brother and the caring counselors that he met at Camp Max

Straus. "

http://www.jewishjo urnal.com/ home/preview. php?id=11847

" But I learned my mental toughness in college. I was a shy,

introverted kid. I used college to learn how to speak with people

and interact. College is where I became a man. "

http://www.denverpo st.com/Stories/ 0,1413,36~ 86~1962664, 00.html

" ST. PAUL, Minn. - Five years ago, he was a shy, acne-faced teenager

who was living in the basement of a house belonging to a future Hall

of Fame goaltender. Today, Tanguay is carving his own niche as

one of the NHL's brightest stars.

http://www.rockymou ntainnews. com/drmn/ avalanche/ article/0, 1299,DRMN_

39_2636187, 0\

0.html

My Achy Breaky Heart: Helping the Shy Adolescent

Lorna J. Lacina-Gifford and McFerrin

Northwestern State University

http://www.lmsaonli ne.org/achybreak y.htm

Don't let the title fool you -lots of great suggestions here just in

case your child doesn't outgrow it. (and again -I wonder why some

don't outgrow being shy...were they pushed? Or is this just normal?)

Re: apraxia and social skills

Hi Traci!

It's no secret -our children even when doing " amazing " are not

always up to speed expressively. Don't let it discourage you about

's amazing progress so far. Amazing for our kids in speech

shouldn't be compared to amazing for those that don't have

impairments. The " slow " stage now is nothing in comparison to years

ago before multisensory therapies and the " right " EFAs. There is

great hope for apraxic children -and together we are breaking new

ground.

We cover the rule of the fourths in The Late Talker book. For

example -it's perfectly normal for your 1 1/2 year old child to be

understood by you 95% of the time and to " strangers " (which would

include the new teacher) 25% of the time. Typically by three -most

children are understandable 75% of the time to strangers -and 100%

of the time to us.

Make sure in your communication book you put down words the way your

child says them. Most of our children tend to break down a bit when

they first go to sentence attempts. They may be able to say a

word " perfect " (even for a stranger to hear it!) when they say it in

isolation -or with a model. Take that same word and try to put it

into a sentence and without a model -and it becomes a blur. Here is

a personal example:

When Tanner was three I would " hear " Tanner say " tiny bit for me? "

and I'm thrilled he's " talking " to me!! Of course he didn't say it

clearly -but since I knew what he meant I praise him for " good

talking Tanner " and then repeat back each word one at a time for him

as a model (change it to " Can - I - have - a - tiny - bit -

please? " ) and this time most words are fairly clear for others to

understand. However in reality -before I broke down the words in

the " sentence " attempt -he actually said something 'only' I or my

husband would understand. " tee tee tee tee me? "

Just like when a child with apraxia goes to a longer word they break

down -when they first go to sentences or longer sentence they break

down again. What I was told is that the " blocking " the syllables -

which is what Tanner was doing -was preparing him for sentence

structure. So his " die die die " while I tried to put a cap on his

head was " this too tight " and " die die die die die die " when

pointing outside was clearly to me saying " I want to go outside " It

got to a point that Tanner would talk -and then look at me and wait

for me to tell everyone what he said. Fortunately I was quite good

at it -but if I didn't know -that's when the tears started. I told

people Tanner reminded me of Harpo Marx -such a great sense of

humor -and the gestures he would use to try to get us to understand,

and he made me have to be a detective. I love the picture of the

child on the cover of The Late Talker book -because to see that face

against a blank wall with no clues to go on with an apraxic child is

tantrum in waiting as many of you know.

How is your child when you take him to a birthday party with other

kids he doesn't know? How is he at the park with children he

doesn't know? How is he with children one on one -or with children

he knows?

It doesn't sound like 's teacher understands apraxia. If our

children could " pick up " language just by being around good role

models -then they would have... from us -like other children do who

never go to a preschool. I just sent a copy of The Late Talker book

over to Candy -one of the producers I worked for in animation. I

wrote in the book " God must have both a plan and a sense of humor or

how else could the same person that had to be bribed with lollipops

to stop talking grow up to have two late talkers who had to be bribed

with lollipops to start " Working in animation... talking all the

time is not unusual " I WANT my MTV!! " " I want MY MTV!! " " I want my

MTV!! " http://www.awn. com/mag/issue2. 10/2.10pages/ 2.10mtv.html (my

name used to be Fernandez)

Why not observe the morning class -don't go so much by communication

skills level as much as academic level. No matter what -the

teachers are talking all day long -as well as the SLPs. Also -why

your son in the " verbal " class? Don't tell me in Hawaii you guys

have a whole morning class of apraxic children! I'm sure some in

there only have simple delays in speech. If she's so strong on

leaving your apraxic child that she " doesn't understand " in the

verbal class (warning -warning - for self esteem issues before they

develop!) then why not one of the many other non apraxic non verbal children

from the morning class? Why ? Don't all the others in

the " nonverbal " morning class need positive role models too if

that's the thought? I'm confused. (Now I'm talking like I'm you at an IEP

meeting!)

Tanner at three years old tended also to shy away from other

children he didn't know. We'll never know for sure if it's due to

lack of self esteem or frustration from not being able to

communicate, or most likely a bit of both. I can tell you that as

the weeks went on -he formed friendships and grew to love his

teachers and classmates. Tanner was also schooled in a hearing

impaired deaf school -and I too was " warned " that he " wouldn't have

positive role models " I laugh at that! What -I live in a bubble now?

My kid is at school a few measly hours a day for five days a week -

and I took him to the park -therapy -play dates -life. When Tanner was at

preschool -it was for therapy first, education second -social skills

were a plus -but not my priority from the preschool for him. If that was my

main goal I wouldn't have fought for appropriate services and would

have just stuck Tanner in a good " normal " preschool. I've written

here before -if your child regresses around other children -he may

do better on one on one -and at times perhaps not with " normal " kids. Our

children

are bright enough to know they are not doing what others are. And

if they could " pick it up " just by being around it -we wouldn't be

here! And the advice would be -put your kid in day care and they

will be fine.

Well once you decide which class is the best (if either of them are)

Try to get the phone numbers of some of the other moms in the class

to set up play dates. If the school won't give phone numbers to

you - have a party and invite all the children and put an RSVP on

the invite. Make it a " get to know each other " party! Also go and

observe the class and see if there is a child or two your child

appears to gravitate more. Don't just take the teacher's word for

it -she may or may not notice -you will always notice -it's your child.

=====

[Guest guest]

When my son was 2-5 he played very well with his brother and his

brother's friends. His brother is 2 yrs older than him. At 5 he

started playing very well with younger kids as well. At his preschool

his best buddy was a 3 yr old who had anger issues and was a late

talker. He was a hitter, screamer, biter, etc. He acted this way

because of his speech delay (my oldest was similar so as a parent I

understood!) and he also behaved differently becuase his older sister

(age 5) has autism and that was the only role model he had until he

started preschool. My son was the only one who didn't let this kid

push him around and they became friends. His other two friends in

preschool he made when he was age 4. One was a little mother type

girl who would try to teach him new words and would cheer him on when

he said something new, and the other was a boy just two months younger

than him who didn't speak English. They didn't need words to

communicate and they had a great time. The next year when this child

started speaking English he gravitated away from my son.

Ages 4-5 was a very tough time for us because play takes on a very

verbal component. It isn't just digging or crashing toys now, it's

talking about situations and planning complex plots. He could follow

those things, but he couldn't communicate. When a new kid says, " Hi,

what's your name? " and you can't answer with anything it is a real

killer in social situations! My son was essentially non-verbal until

age 4 and at age 5.5 was still three years behind in his speech.

Now he's 7 and thanks to a huge boost right after his 6th birthday he

is mostly intelligible to the familiar and unfamiliar listener. He

has language issues, however, and that decreases his intelligibility

because he says words out of order and drops articles, plurals, etc.

His biggest problem now is he lacks confidence. He's used to being

completely misunderstood so he is often awkward in social situations

that require he talk. He would rather sit back and let the play start

then join in. He still doesn't have a best friend, but he plays with

two girls at dance who have siblings in class when his brother is in

class so they are all stuck together for an hour. One just turned 8

and the other just turned 7 so they are right there at his age (he is

almost 7.5 now.) He also has one friend at church who is a year

younger than him. Unfortunately he is often overshadowed at church by

his big brother. It's just " cool " that big brother accepts the little

ones so they prefer my oldest. They aren't mean, but it just goes

that way. My oldest is an extrovert by nature and my apraxic son is

very much an introvert and he would be even if he didn't have the

speech and language issues. I think my son's biggest struggle with

not having a " best friend " is the fact that there are no kids close to

his age in our neighborhood.

Miche

[Guest guest]

On Sun, Feb 15, 2009 at 5:44 PM, ali mccahey <sweetysource@...> wrote:

> Typically by three -most

> children are understandable 75% of the time to strangers -and 100%

> of the time to us.

> Hi ! My son is going to be three later this month.....I am upset hearing

> that by three most people can understand kids with apraxia...no one can

> really understand him unless it is one

> word and its obvious....I understand him but sometimes I dont and it breaks

> my heart because he looks sad and frustrated.

This was us at age 4! I made a word list and my son had under 100

words. I was being generous and included all animal sounds as well.

By far the majority of his words were nouns. I can't even recall a

single verb. He spoke only in single words and it was a crap shoot if

I understood it. When I made his list for preschool at the time he

said " thank you " at least 6 different ways. Frog was often " fwok " ,

giraffe = fwaf and most of his substitutions were very inconsistent as

well (typical of apraxia) so it wasn't something you could just

memorize the way he said things.

I worked a lot with him at home and cheered and accepted every

approximation he made. We played a lot of memory (he loved memory and

still does - he usually creams me!) and part of the rules were he had

to say each card he turned over. Sometimes he would just make a

sound, hopefully an initial sound, but the encouraging verbal attempts

was HUGE! He was so discouraged and found speaking so hard that he

just gave up for the summer before he turned 4. I believe poor ABA

therapy contributed to that frustration and depression he experienced

at that time.

He turned the corner when he started Prompt therapy. For the first

time he got HELP from his therpist. Help that actually helped!

Therapists in the past had tried, but none actually was able to help

him say words. While being Prompted (full word and full sentence

prompts, not just single sounds as many therapists do) he could

actually speak, even if just in therapy. It was the confidence boost

he needed to keep trying. The more repetition he had the more words

he mastered and the more clear he became.

So don't get discouraged. I've seen lots of kids here who didn't get

appropriate help early on and still struggled a lot at age 3, 4 or

older. At least some, like my son, have really caught up! When he

was 5 I was still quite worried with what his future would hold, but

now I'm feeling very good. He can get his point across and he can

read fabulously and he writes now as well which has opened a new

world. I'm sure he's going to be just fine.

Miche

[Guest guest]

Thank you for your e-mail response. We live in Indiana.

[Guest guest]

hi,  my daughter is 12 and still VERY shy until she gets to know someone well

and then she becomes a different person and very funny.  By 3 she only had a

few words,I thinks that's pretty typical with apraxic children.  She's had a

Friend since she was in pre-k and they use to play together all the time without

words! and it was still appropriate play.They are still friends today. 

I recently had a speech evaluation done since its been several years and she

noticed right away how her social skills need work,so shes going to pair her up

with other kids as much as she can. 

I would get play dates with kids your sons age,there are other quiet kids out

there too,and he will connect with someone i'm sure. I think its important to

keep him with gets around his age. 

We are still dealing with apraxia at 12,but shes open about it.  When shes

talking on the phone,she often ask me to repeat a word or letter for the other

person. She always tries to spell ihe word if the person doesn't understand the

word,if all else fails shes comes to me!  But its not stopping her, shes still

call this boy frequently lol ! and she has several school girls calling here. 

Jennie

[ ] Re: Social skills of verbal apraxia children?

@ groups .com

Date: Sunday, February 15, 2009, 6:32 PM

I noticed that some that answered you gave you advice that would not

hold true if you were to join a local support group. My son Tanner

and many of the apraxic children I have known through friends I have

made in this group over the years blend in as " normal " with children

in the neighborhood, their class etc. Not everyone reads every

message and in order to get a better picture you'll have to give this

message a few days for others to answer. Unfortunately most of us

that have children that are for the most part " normal " are not on this

grouplist often (or at all) anymore. I appreciate those who stay around to

continue to help even when they don't have to for their own child.

One thing to note however is that in preschool years the apraxic

children have so much to deal with, so much time spent in therapy. I

know my son didn't have much time to do anything but therapy and back

when he was essentially nonverbal he did much better on one on one

playdates than in group situations.

Apraxia in itself is neither a cognitive nor social disorder. If

there are social aspects as well it is possible that your child is

dealing with more than apraxia . It's not unusual for example to have

a child with both apraxia and autism (etc.) On the other hand I

wouldn't jump to diagnosis. Again apraxia in itself is a tough,

frustrating condition to deal with. It tends to overlap with sensory,

motor planning and or tonal issues.

It's like I've already written -it's hard to enjoy the beauty of the

ocean when you are drowning. Please don't jump to any conclusions

-and that includes coming to the conclusion that apraxia has anything

at all to do with social issues just because a few parents here may

have found that true for their own child. There are other reasons why

some here found social issues -some parents here didn't get

appropriate therapy early and dealt with issues longer than others for

example. Teasing and/or frustration can lead to secondary behavioral

or social issues -but again that is not the norm for those with

apraxia in this group who receive early appropriate placement/therapy. I

again suggest you find a local support group- what state are you in?

Here's some archives that may help (many more)

Re: SOCIAL SKILLS

I agree this is not just a " special needs " problem -this is

something anyone can have ...and it may not even be a problem. So

speaking as one who was quite comfortable being shy when I felt shy

as a young child -and one who grew up and became more inclined to

try to be an apprentice on Trump's new TV show (no I am not

at all shy today!) being shy is not a problem, and is not

necessarily permanent. Perhaps it's part of a developmental stage

and some just

get stuck -and perhaps it just is the way one is. Don't assume

however that shy people feel left out. When I was shy I 'wanted' to

stay out of the spotlight -that's what made me happy.

This is one to follow your gut on and discuss with professionals

that know your child that you respect. I know that when I was asked

to say " hi " to someone when I was in my shy stage as a young child

it terrified me. Do I know why? I remember being scared, sometimes

terrified to the point of tears and hiding -but no, don't know why.

I know my mom never forced me to say " hi " My mom let me be shy.

She didn't push it and let me hide behind couches or her and just

said " it's OK " . Again -I outgrew that stage. Some kids may need help

with social skills, but shyness in a preschool child doesn't mean

shyness forever. I know that for a fact.

As some of you know who are not new members, I was very sick as an

infant from celiac disease which almost killed me, and spent much of

my early childhood in the hospital. I did attend a few days of

preschool. and a few days of kindergarten, but the rest of the time

I was in the hospital or home sick. The only reason I was able to

move up to first grade is because I passed a test they gave me which

I still remember taking.

I was very shy, and I even recall being afraid of certain people at

times -I don't know why. I was friends with two little girls who

lived on either side of my house, one who I'm still friends with

today, and with some children I met in the hospital, but even with

them I was shy and spoke very soft. I spoke so soft people had to

strain to hear me -and as I started to go to school more, I still

spoke soft and wrote soft. Teachers had to write on my papers to

write darker because they couldn't read my work.

I never had any classes on how to say hi, how to speak louder, or

how not to be shy. Again, I don't recall anyone seeing my shyness as

a problem. As I grew up I stopped being sick all the time and

changed in other ways. I became known as " social butterfly " who can

make friends with a wrong number on the phone. Back when I was

working in animation actually I was asked to be a VJ for MTV (I

worked on lots of the behind the scenes commercials) I did like

behind the scenes work more than being in front of the camera -but I

was not shy anymore -and very social. I just knew what I wanted.

Actually if you ask most people I grew up with about me (except my

friend Debbie who knew me when I was shy as a young child and wishes

I was a bit shier today) -probably the last word anyone would use to

describe me is shy -or that I speak too soft! Tanner too was shy

when he was unable to communicate and preschool age -and today he

too is as far from shy as anyone -that's for sure! Tanner walked up

to his " girlfriend' s " mom to introduce himself and ask for Emma's

phone number. (Johanna, Emma's mom said that it took him awhile to

get it out -but she understood every word)

It would be interesting to know from shy adults -how were they as

children, and were they " taught " how to be more social and did it

help them?

Here is some of what I found online :

" special guest Mark Okyansky spoke about how he changed from a shy

stutterer to a confident young adult thanks to the involvement of

his Big Brother and the caring counselors that he met at Camp Max

Straus . "

http :// www . jewishjo urnal .com/ home/preview. php ?id=11847

" But I learned my mental toughness in college. I was a shy,

introverted kid. I used college to learn how to speak with people

and interact. College is where I became a man. "

http :// www . denverpo st.com/Stories/ 0,1413,36~ 86~1962664, 00. html

" ST. PAUL, Minn. - Five years ago, he was a shy, acne-faced teenager

who was living in the basement of a house belonging to a future Hall

of Fame goaltender. Today, Tanguay is carving his own niche as

one of the NHL's brightest stars.

http :// www . rockymou ntainnews . com/ drmn / avalanche/ article/0, 1299,

DRMN_ 39_2636187, 0\

0. html

My Achy Breaky Heart: Helping the Shy Adolescent

Lorna J. Lacina-Gifford and McFerrin

Northwestern State University

http :// www . lmsaonli ne .org/ achybreak y. htm

Don't let the title fool you -lots of great suggestions here just in

case your child doesn't outgrow it. (and again -I wonder why some

don't outgrow being shy...were they pushed? Or is this just normal?)

Re: apraxia and social skills

Hi Traci!

It's no secret -our children even when doing " amazing " are not

always up to speed expressively. Don't let it discourage you about

's amazing progress so far. Amazing for our kids in speech

shouldn't be compared to amazing for those that don't have

impairments. The " slow " stage now is nothing in comparison to years

ago before multisensory therapies and the " right " EFAs . There is

great hope for apraxic children -and together we are breaking new

ground.

We cover the rule of the fourths in The Late Talker book. For

example -it's perfectly normal for your 1 1/2 year old child to be

understood by you 95% of the time and to " strangers " (which would

include the new teacher) 25% of the time. Typically by three -most

children are understandable 75% of the time to strangers -and 100%

of the time to us.

Make sure in your communication book you put down words the way your

child says them. Most of our children tend to break down a bit when

they first go to sentence attempts. They may be able to say a

word " perfect " (even for a stranger to hear it!) when they say it in

isolation -or with a model. Take that same word and try to put it

into a sentence and without a model -and it becomes a blur. Here is

a personal example:

When Tanner was three I would " hear " Tanner say " tiny bit for me? "

and I'm thrilled he's " talking " to me!! Of course he didn't say it

clearly -but since I knew what he meant I praise him for " good

talking Tanner " and then repeat back each word one at a time for him

as a model (change it to " Can - I - have - a - tiny - bit -

please? " ) and this time most words are fairly clear for others to

understand. However in reality -before I broke down the words in

the " sentence " attempt -he actually said something 'only' I or my

husband would understand. " tee tee tee tee me? "

Just like when a child with apraxia goes to a longer word they break

down -when they first go to sentences or longer sentence they break

down again. What I was told is that the " blocking " the syllables -

which is what Tanner was doing -was preparing him for sentence

structure. So his " die die die " while I tried to put a cap on his

head was " this too tight " and " die die die die die die " when

pointing outside was clearly to me saying " I want to go outside " It

got to a point that Tanner would talk -and then look at me and wait

for me to tell everyone what he said. Fortunately I was quite good

at it -but if I didn't know -that's when the tears started. I told

people Tanner reminded me of Harpo Marx -such a great sense of

humor -and the gestures he would use to try to get us to understand,

and he made me have to be a detective. I love the picture of the

child on the cover of The Late Talker book -because to see that face

against a blank wall with no clues to go on with an apraxic child is

tantrum in waiting as many of you know.

How is your child when you take him to a birthday party with other

kids he doesn't know? How is he at the park with children he

doesn't know? How is he with children one on one -or with children

he knows?

It doesn't sound like 's teacher understands apraxia . If our

children could " pick up " language just by being around good role

models -then they would have... from us -like other children do who

never go to a preschool. I just sent a copy of The Late Talker book

over to Candy -one of the producers I worked for in animation. I

wrote in the book " God must have both a plan and a sense of humor or

how else could the same person that had to be bribed with lollipops

to stop talking grow up to have two late talkers who had to be bribed

with lollipops to start " Working in animation... talking all the

time is not unusual " I WANT my MTV!! " " I want MY MTV!! " " I want my

MTV!! " http :// www .awn. com/mag/issue2. 10/2.10pages/ 2.10mtv. html (my

name used to be Fernandez)

Why not observe the morning class -don't go so much by communication

skills level as much as academic level. No matter what -the

teachers are talking all day long -as well as the SLPs . Also -why

your son in the " verbal " class? Don't tell me in Hawaii you guys

have a whole morning class of apraxic children! I'm sure some in

there only have simple delays in speech. If she's so strong on

leaving your apraxic child that she " doesn't understand " in the

verbal class (warning -warning - for self esteem issues before they

develop!) then why not one of the many other non apraxic non verbal children

from the morning class? Why ? Don't all the others in

the " nonverbal " morning class need positive role models too if

that's the thought? I'm confused. (Now I'm talking like I'm you at an IEP

meeting!)

Tanner at three years old tended also to shy away from other

children he didn't know. We'll never know for sure if it's due to

lack of self esteem or frustration from not being able to

communicate, or most likely a bit of both. I can tell you that as

the weeks went on -he formed friendships and grew to love his

teachers and classmates. Tanner was also schooled in a hearing

impaired deaf school -and I too was " warned " that he " wouldn't have

positive role models " I laugh at that! What -I live in a bubble now?

My kid is at school a few measly hours a day for five days a week -

and I took him to the park -therapy -play dates -life. When Tanner was at

preschool -it was for therapy first, education second -social skills

were a plus -but not my priority from the preschool for him. If that was my

main goal I wouldn't have fought for appropriate services and would

have just stuck Tanner in a good " normal " preschool. I've written

here before -if your child regresses around other children -he may

do better on one on one -and at times perhaps not with " normal " kids. Our

children

are bright enough to know they are not doing what others are. And

if they could " pick it up " just by being around it -we wouldn't be

here! And the advice would be -put your kid in day care and they

will be fine.

Well once you decide which class is the best (if either of them are)

Try to get the phone numbers of some of the other moms in the class

to set up play dates. If the school won't give phone numbers to

you - have a party and invite all the children and put an RSVP on

the invite. Make it a " get to know each other " party! Also go and

observe the class and see if there is a child or two your child

appears to gravitate more. Don't just take the teacher's word for

it -she may or may not notice -you will always notice -it's your child.

=====

[Guest guest]

,

What arguements did you use to get placement in a deaf school for Tanner?

Jen

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: Social skills of verbal apraxia children?

Date: Sunday, February 15, 2009, 6:32 PM

I noticed that some that answered you gave you advice that would not

hold true if you were to join a local support group. My son Tanner

and many of the apraxic children I have known through friends I have

made in this group over the years blend in as " normal " with children

in the neighborhood, their class etc. Not everyone reads every

message and in order to get a better picture you'll have to give this

message a few days for others to answer. Unfortunately most of us

that have children that are for the most part " normal " are not on this

grouplist often (or at all) anymore. I appreciate those who stay around to

continue to help even when they don't have to for their own child.

One thing to note however is that in preschool years the apraxic

children have so much to deal with, so much time spent in therapy. I

know my son didn't have much time to do anything but therapy and back

when he was essentially nonverbal he did much better on one on one

playdates than in group situations.

Apraxia in itself is neither a cognitive nor social disorder. If

there are social aspects as well it is possible that your child is

dealing with more than apraxia. It's not unusual for example to have

a child with both apraxia and autism (etc.) On the other hand I

wouldn't jump to diagnosis. Again apraxia in itself is a tough,

frustrating condition to deal with. It tends to overlap with sensory,

motor planning and or tonal issues.

It's like I've already written -it's hard to enjoy the beauty of the

ocean when you are drowning. Please don't jump to any conclusions

-and that includes coming to the conclusion that apraxia has anything

at all to do with social issues just because a few parents here may

have found that true for their own child. There are other reasons why

some here found social issues -some parents here didn't get

appropriate therapy early and dealt with issues longer than others for

example. Teasing and/or frustration can lead to secondary behavioral

or social issues -but again that is not the norm for those with

apraxia in this group who receive early appropriate placement/therapy. I

again suggest you find a local support group- what state are you in?

Here's some archives that may help (many more)

Re: SOCIAL SKILLS

I agree this is not just a " special needs " problem -this is

something anyone can have ...and it may not even be a problem. So

speaking as one who was quite comfortable being shy when I felt shy

as a young child -and one who grew up and became more inclined to

try to be an apprentice on Trump's new TV show (no I am not

at all shy today!) being shy is not a problem, and is not

necessarily permanent. Perhaps it's part of a developmental stage

and some just

get stuck -and perhaps it just is the way one is. Don't assume

however that shy people feel left out. When I was shy I 'wanted' to

stay out of the spotlight -that's what made me happy.

This is one to follow your gut on and discuss with professionals

that know your child that you respect. I know that when I was asked

to say " hi " to someone when I was in my shy stage as a young child

it terrified me. Do I know why? I remember being scared, sometimes

terrified to the point of tears and hiding -but no, don't know why.

I know my mom never forced me to say " hi " My mom let me be shy.

She didn't push it and let me hide behind couches or her and just

said " it's OK " . Again -I outgrew that stage. Some kids may need help

with social skills, but shyness in a preschool child doesn't mean

shyness forever. I know that for a fact.

As some of you know who are not new members, I was very sick as an

infant from celiac disease which almost killed me, and spent much of

my early childhood in the hospital. I did attend a few days of

preschool. and a few days of kindergarten, but the rest of the time

I was in the hospital or home sick. The only reason I was able to

move up to first grade is because I passed a test they gave me which

I still remember taking.

I was very shy, and I even recall being afraid of certain people at

times -I don't know why. I was friends with two little girls who

lived on either side of my house, one who I'm still friends with

today, and with some children I met in the hospital, but even with

them I was shy and spoke very soft. I spoke so soft people had to

strain to hear me -and as I started to go to school more, I still

spoke soft and wrote soft. Teachers had to write on my papers to

write darker because they couldn't read my work.

I never had any classes on how to say hi, how to speak louder, or

how not to be shy. Again, I don't recall anyone seeing my shyness as

a problem. As I grew up I stopped being sick all the time and

changed in other ways. I became known as " social butterfly " who can

make friends with a wrong number on the phone. Back when I was

working in animation actually I was asked to be a VJ for MTV (I

worked on lots of the behind the scenes commercials) I did like

behind the scenes work more than being in front of the camera -but I

was not shy anymore -and very social. I just knew what I wanted.

Actually if you ask most people I grew up with about me (except my

friend Debbie who knew me when I was shy as a young child and wishes

I was a bit shier today) -probably the last word anyone would use to

describe me is shy -or that I speak too soft! Tanner too was shy

when he was unable to communicate and preschool age -and today he

too is as far from shy as anyone -that's for sure! Tanner walked up

to his " girlfriend' s " mom to introduce himself and ask for Emma's

phone number. (Johanna, Emma's mom said that it took him awhile to

get it out -but she understood every word)

It would be interesting to know from shy adults -how were they as

children, and were they " taught " how to be more social and did it

help them?

Here is some of what I found online:

" special guest Mark Okyansky spoke about how he changed from a shy

stutterer to a confident young adult thanks to the involvement of

his Big Brother and the caring counselors that he met at Camp Max

Straus. "

http://www.jewishjo urnal.com/ home/preview. php?id=11847

" But I learned my mental toughness in college. I was a shy,

introverted kid. I used college to learn how to speak with people

and interact. College is where I became a man. "

http://www.denverpo st.com/Stories/ 0,1413,36~ 86~1962664, 00.html

" ST. PAUL, Minn. - Five years ago, he was a shy, acne-faced teenager

who was living in the basement of a house belonging to a future Hall

of Fame goaltender. Today, Tanguay is carving his own niche as

one of the NHL's brightest stars.

http://www.rockymou ntainnews. com/drmn/ avalanche/ article/0, 1299,DRMN_

39_2636187, 0\

0.html

My Achy Breaky Heart: Helping the Shy Adolescent

Lorna J. Lacina-Gifford and McFerrin

Northwestern State University

http://www.lmsaonli ne.org/achybreak y.htm

Don't let the title fool you -lots of great suggestions here just in

case your child doesn't outgrow it. (and again -I wonder why some

don't outgrow being shy...were they pushed? Or is this just normal?)

Re: apraxia and social skills

Hi Traci!

It's no secret -our children even when doing " amazing " are not

always up to speed expressively. Don't let it discourage you about

's amazing progress so far. Amazing for our kids in speech

shouldn't be compared to amazing for those that don't have

impairments. The " slow " stage now is nothing in comparison to years

ago before multisensory therapies and the " right " EFAs. There is

great hope for apraxic children -and together we are breaking new

ground.

We cover the rule of the fourths in The Late Talker book. For

example -it's perfectly normal for your 1 1/2 year old child to be

understood by you 95% of the time and to " strangers " (which would

include the new teacher) 25% of the time. Typically by three -most

children are understandable 75% of the time to strangers -and 100%

of the time to us.

Make sure in your communication book you put down words the way your

child says them. Most of our children tend to break down a bit when

they first go to sentence attempts. They may be able to say a

word " perfect " (even for a stranger to hear it!) when they say it in

isolation -or with a model. Take that same word and try to put it

into a sentence and without a model -and it becomes a blur. Here is

a personal example:

When Tanner was three I would " hear " Tanner say " tiny bit for me? "

and I'm thrilled he's " talking " to me!! Of course he didn't say it

clearly -but since I knew what he meant I praise him for " good

talking Tanner " and then repeat back each word one at a time for him

as a model (change it to " Can - I - have - a - tiny - bit -

please? " ) and this time most words are fairly clear for others to

understand. However in reality -before I broke down the words in

the " sentence " attempt -he actually said something 'only' I or my

husband would understand. " tee tee tee tee me? "

Just like when a child with apraxia goes to a longer word they break

down -when they first go to sentences or longer sentence they break

down again. What I was told is that the " blocking " the syllables -

which is what Tanner was doing -was preparing him for sentence

structure. So his " die die die " while I tried to put a cap on his

head was " this too tight " and " die die die die die die " when

pointing outside was clearly to me saying " I want to go outside " It

got to a point that Tanner would talk -and then look at me and wait

for me to tell everyone what he said. Fortunately I was quite good

at it -but if I didn't know -that's when the tears started. I told

people Tanner reminded me of Harpo Marx -such a great sense of

humor -and the gestures he would use to try to get us to understand,

and he made me have to be a detective. I love the picture of the

child on the cover of The Late Talker book -because to see that face

against a blank wall with no clues to go on with an apraxic child is

tantrum in waiting as many of you know.

How is your child when you take him to a birthday party with other

kids he doesn't know? How is he at the park with children he

doesn't know? How is he with children one on one -or with children

he knows?

It doesn't sound like 's teacher understands apraxia. If our

children could " pick up " language just by being around good role

models -then they would have... from us -like other children do who

never go to a preschool. I just sent a copy of The Late Talker book

over to Candy -one of the producers I worked for in animation. I

wrote in the book " God must have both a plan and a sense of humor or

how else could the same person that had to be bribed with lollipops

to stop talking grow up to have two late talkers who had to be bribed

with lollipops to start " Working in animation... talking all the

time is not unusual " I WANT my MTV!! " " I want MY MTV!! " " I want my

MTV!! " http://www.awn. com/mag/issue2. 10/2.10pages/ 2.10mtv.html (my

name used to be Fernandez)

Why not observe the morning class -don't go so much by communication

skills level as much as academic level. No matter what -the

teachers are talking all day long -as well as the SLPs. Also -why

your son in the " verbal " class? Don't tell me in Hawaii you guys

have a whole morning class of apraxic children! I'm sure some in

there only have simple delays in speech. If she's so strong on

leaving your apraxic child that she " doesn't understand " in the

verbal class (warning -warning - for self esteem issues before they

develop!) then why not one of the many other non apraxic non verbal children

from the morning class? Why ? Don't all the others in

the " nonverbal " morning class need positive role models too if

that's the thought? I'm confused. (Now I'm talking like I'm you at an IEP

meeting!)

Tanner at three years old tended also to shy away from other

children he didn't know. We'll never know for sure if it's due to

lack of self esteem or frustration from not being able to

communicate, or most likely a bit of both. I can tell you that as

the weeks went on -he formed friendships and grew to love his

teachers and classmates. Tanner was also schooled in a hearing

impaired deaf school -and I too was " warned " that he " wouldn't have

positive role models " I laugh at that! What -I live in a bubble now?

My kid is at school a few measly hours a day for five days a week -

and I took him to the park -therapy -play dates -life. When Tanner was at

preschool -it was for therapy first, education second -social skills

were a plus -but not my priority from the preschool for him. If that was my

main goal I wouldn't have fought for appropriate services and would

have just stuck Tanner in a good " normal " preschool. I've written

here before -if your child regresses around other children -he may

do better on one on one -and at times perhaps not with " normal " kids. Our

children

are bright enough to know they are not doing what others are. And

if they could " pick it up " just by being around it -we wouldn't be

here! And the advice would be -put your kid in day care and they

will be fine.

Well once you decide which class is the best (if either of them are)

Try to get the phone numbers of some of the other moms in the class

to set up play dates. If the school won't give phone numbers to

you - have a party and invite all the children and put an RSVP on

the invite. Make it a " get to know each other " party! Also go and

observe the class and see if there is a child or two your child

appears to gravitate more. Don't just take the teacher's word for

it -she may or may not notice -you will always notice -it's your child.

=====

[Guest guest]

Hi !

I have below the rule of the fourths which is used by SLPs as written

in The Late Talker. This is for all children as a way to determine if

a child may need some extra help in speech -if there are delays.

Clearly apraxia is a speech impairment and children with apraxia are

not up to normal by 3. If they are -perhaps it was a misdiagnosis?

As far as how do you make a playdate if your child is essentially

nonverbal? Same way you would if your child was deaf and essentially

nonverbal -you call up parents that you know will be compassionate to

your child's condition who has a child around your child's age. A

second way is to find parents who have children with your child's

condition (speech delay or disorder) via your therapist (ask your

therapist if she can give your name and number to other clients who

have children that may want to get together for playdates), preschool

(if you didn't start yet you will soon), word of mouth etc.

My son never had trouble playing with children even when he was

nonverbal. Some two and three year old children talk all the time

(but don't really seem to notice if anyone is listening) and others

don't say a word- but they can play together fine. I also recommend

activities that don't need speech -such as Gameboy, Playstation for

boys for example. Find activities that your child can thrive in

regardless of his or her ability to verbally communicate.

You may also want to expose yourself to deaf culture -no verbal

communication and they live perfectly normal lives- get married etc.

They would be highly offended by the belief that just because a child

can't talk -they can't have friends. If you are finding that children

are not accepting of your child- it's probably a group situation

-again try one on one and first talk to the parents. With the child

just say " ____ is still learning to talk and since you do such a good

job of it maybe you can help her. She'd love to play with you " Kids

love helping others when asked I found! In fact I found kids to be

better, more understanding, more compassionate than some adults!!!

(who said when he was little " what's wrong with him? " right in front

of him!)

From The Late Talker book 2003 -again this is for 'all' children to

know there is a sign of a delay -not a sign of apraxia!!! (did you

read the book?)

THE " RULE OF FOURTHS "

The overall clarity of the child's speech—speech pathologists call it

" intelligibility " —also improves with age. The " Rule of Fourths " gives

a framework for the development of phonology, the rules for combining

speech sounds to form words and phrases:

• By one and a half years of age, the average toddler's speech is

understandable to strangers one-fourth (25 percent) of the time, but

clear to his mother 95 percent of the time. For example, the child,

with tears running down his face as his mother leaves the house, may

ask the new babysitter: " Mama hoe me? " for " Mama come home to me? "

• By the time the average child is four-years-old, her speech is

completely understandable all of the time to all listeners. However,

she may say, " I got a new toy, but I breaked it. "

~~~~~~~~~~~~~~~~~~~~

=====

[Guest guest]

Jen I think the answer is below -I have to run out so didn't have time

to read it all. If it's not in here let me know and I'll find it. In

short however I proved that the in district placement was not

appropriate, and that the Summit Speech School would offer both

appropriate placement as well as therapy.

~~~~~~~~~~~~~~~~~start of archives

Re: Summit Speech School

Hi ,

I personally weighed the pros and the cons -much like you are doing -

and without a doubt in my mind I chose Summit Speech School for

Tanner. The misconception is that a child that attends a school for

the hearing impaired must also have some type of hearing impairment -

nope.

Almost all the 'apraxic' children that attended the Summit Speech

School in New Providence, NJ -a state of the art facility -had

normal hearing. There were a handful of hearing impaired apraxic

children there too. My nephew also attended SSS -he has a mild

hearing loss from frequent ear infections and a speech impairment -

and he too is doing amazing.

Talk to the director of the Summit Speech School - Kanter

about Rotheweiler's son - a true success story. is

still a member here -however like most of the parents who's children

are doing so well -they don't post as often. In fact most of the

children I know that put their kids on the right EFAs and in the

right therapy/programs are doing amazing and mainstreamed today -

's son being one of them. Why do I bring up 's son?

Because he too had behavioral problems (head banging for example) -

not from PDD or autism -but from frustration. The EFAs were the

first to stop the behavioral problems -and then he got the right

therapy - (like many parents in our group) is an awesome

advocate -and like Tanner -her son attended the Summit Speech School

until he was six.

Most of the children I know that were given and taught to use a

complex augmentative device were much older than your child -even if

they were nonverbal. I don't know your child -however I know that

will not hesitate to give you her opinion once she knows the

situation and your child -and off the cuff I'd say the answer is to

wait with the complex augmentative for now and take the Summit

Speech School.

When on an old apraxia list when Tanner was first diagnosed (another

rebel thing I brought up back then) I brought up the question about

teaching hearing apraxic children in schools for the hearing

impaired because " if they teach deaf children to communicate -then

maybe they can help Tanner " I figured that like our kids -deaf

children need a multisensory way to learn to speak since our kids

don't just " pick it up " from other children -or from anyone. I was

told by that list owner it was not a good idea because Tanner

wouldn't be getting sign language in the class, and he wouldn't have

good role models.

-since you saw the Summit Speech School -I don't have to tell

you what the classes are like -it's like a state of the art much

more beautiful than any you could imagine " normal " school - and yes

the children are talking. About two years after I brought up my off

the wall thought, and after Tanner was thriving there and more and

more children through the CHERAB group attended either Summit Speech

School or Lakedrive school (another school for the hearing impaired -

but not an oral based one) and also thrived -Dr. Joan Sheppard from

Columbia and others did a presentation at the ASHA conference about

teaching hearing apraxic children at schools for the hearing

impaired -deaf. Unfortunately for some unknown reason -ASHA only

allows members to view their articles -so not to worry ASHA -any

important information like this will be kept secret from the world

(and the point of that is?...)

told me the reason that they don't allow sign in the school

is that a child who is deaf that does not communicate verbally by

five will most likely never talk -where they can learn to sign at

any age. And as says - " It's a verbal world " On the other

hand -the school day is not all day -you can still sign with your

child the rest of the time -and it's not like the

teachers/therapists will not acknowledge sign -they just don't

encourage it.

Whatever they did -it worked and it's the best school Tanner ever

went to -and all the parents I know who have a child that went there

say the same. I wish they had a K-12 program. There were so many

children that attended the Summit Speech School with apraxia -that I

joked to they should rename the school to Summit Speech

School for Hearing Impaired and (hearing) Apraxic Children. Of

course the funding for the SSS is for the hearing impaired and deaf -

so " ssshhhh " -we have to be a bit quiet about that fact. As always -

apraxics get the short end of the stick.

Below are some archived messages to hopefully answer a bit more -

and I hope others answer as well!

From: " kiddietalk " <kiddietalk@...>

Date: Thu Sep 26, 2002 11:34 pm

Subject: difference between two types of hearing impaired schools

" And also in what ways the programs at the 2 schools for the hearing

impaired differed "

Sorry -just going to close my computer down and found I forgot to

add this to my last email!

Summit Speech School is an oral based school for the hearing

impaired and Lake Drive is a traditional school for the hearing

impaired.

Lori Deforest and other parents that have hearing impaired apraxic

children can fill us in on the crazy strong politics of " deaf

culture " against oral based schools like SSS. Here's what my

understanding is the difference.

Oral based schools do not use sign language -not that that's great

for our kids that are hearing apraxics, but didn't appear to hurt

them. The philosophy is not for apraxics that are hearing -it's for

the deaf - a child that is deaf that doesn't learn to talk by five

will most likely never talk where a person can learn sign at any

age. Summit Speech School has an amazing track record with teaching

deaf children to talk -and even before I heard about schools for the

deaf from anyone -I thought " If they can teach deaf children to talk

and people like Helen Keller they have to be able to teach Tanner

somehow. Maybe his brain will learn it different but there's got to

be a way to teach him. " At that time Tanner was one of the only

children with apraxia being schooled with hearing impaired

children. At SSS other than the rising amounts of apraxic children -

the deaf children mostly have had implants of cochlear implants from

a very young age -so they hear and are taught to understand what

they hear and to talk!

The deaf community -which is a world in itself and a whole culture -

considers cochlear implants mutilating the deaf children. I'll

never forget the answer to a " signed " attack (which I hear is not

uncommon) from a deaf person against this one Dad's son's cochlear

implant.

(most of the kids know sign too -and the parents -they are just

taught not to depend on this since the rest of the world doesn't

know it) This dad defended what they did by signing back " so if your

child had a problem with his heart you would just let him die or

would you get surgery to correct it? It's our choice and right to

correct our child's deafness - this is a hearing world "

The Lake Drive school follows principals of in teaching language in

blocks " Links to Language " -and they do sign language. I don't know

as much about this school except out of the children I know that

attended there -they were more severe -and in two cases the school

systems considered the children cognitively impaired even though

that was debated by the parents. Most of the parents that I know

had children at SSS. At SSS if you were to observe the classrooms

you wouldn't know the difference between what they did during the

day and any other awesome preschool was doing.

From: " kiddietalk " <kiddietalk@...>

Date: Fri Sep 27, 2002 8:09 am

Subject: Re: Speech IEP/what to look for

Hi Kim!

You know before I answer your question there is one thing I left out

about oral based schools for the deaf that may be another very

important reason that apraxic children do so well in these

classrooms. In Tanner's school -the Summit Speech School -they used

an FM system in the classrooms -which amplifies the teacher's voice

throughout the room. I've read that this system may also be useful

for those children with auditory processing disorders.

http://www.judithpaton.com/

I don't believe there is any research on apraxic children learning

to speak in a classroom that utilizes an FM system vs. one that

doesn't ...I of course write this very tongue in cheek since there

isn't much of any research, talk, or awareness about apraxia (even

though it's more common than autism because it can be found in many

with autism -but is in addition found in a large number of other

disorders and also stands alone -or with mild " soft signs " -then

typically viewed as the child that ranges from " just a late talker "

to PDD)

A language based preschool is in a nutshell where the learning is

through the activities. For example -if the child is painting -the

teacher or aide or SLP or OT etc. could be sitting right by the

child saying " blue! you chose blue! can you say blue? bluuuue? "

The teacher then may ask the child which color they want to paint

with next, and give them a choice between yellow or red. However

of course if the child is nonverbal the aide accepts nonverbal ways

of communication -or verbal attempts -praises the child and then

will repeat the word that was attempted back correctly.

In a language based preschool they will work on certain themes

-and

all activities will revolve around core words of that theme. Those

words (and the pictures that go with them) will be sent home with

the child so that they can be reinforced by the family. For

example -in October almost all over the place in preschools the

theme is Halloween -so the activities may be making masks -or

ghosts, or bats, etc. and the books they read and the snacks -well

you get the point.

http://www.atozteacherstuff.com/themes/Halloween.shtml

http://www.123child.com/fall/hall.html

Here is some information on the web on language based preschools.:

http://www.iub.edu/~s110/preschool.htm

" The Indiana University Speech and Hearing Center conducts a special

program for preschool-aged children. In general, the program

focuses on development of language skills as a key to learning.

Thus, the program is designed to enhance the language learning of

preschool children, whether they are typically developing, learning

English as a second language or exhibiting communication delays.

Philosophy

We believe that children are active learners. When given a language-

rich learning environment, children will actively construct language

from their experiences. All children are viewed as candidates for

language enhancement. Language teaching is most effective when it

focuses on the interests of individual children during natural

interactions in the classroom setting. Since language crosses all

areas of development, we believe in an integrated approach where

cognitive, social-emotional, motor and other learning occurs

throughout the day and in the context of meaningful activities.... "

(this whole page is about language based preschool programs so a

good one to look at)

http://www.iub.edu/~s110/preschool.htm

" What is the distinction between the TCOE preschool programs and

VUSD preschool programs?

The child who will benefit the most from VUSD preschool programs

will be within the average range in two or more developmental areas

(social, cognitive, receptive/ expressive language, self & #8209;help

skills

and fine/gross motor skills.) Often, but not always, the child's

primary handicapping condition will be in the area of speech and

language. Typically, these children have a communication system

indicating the need to express themselves. These are also children

who are able to learn classroom structure and organization. In other

words, these are children who are ready to progress and learn. The

classrooms are language & #8209;based but rely on a structured,

organized

curriculum that children can developmentally " navigate. " Although

experiential play is a part of the curriculum, there are more

demands made upon the child to express knowledge and learning in an

organized, sequential manner. This does not preclude children with

other handicapping conditions. We have made substantial gains in

children diagnosed with a variety of disabilities. All referrals and

placements are given consideration on an individual basis and

placement is determined by the IEP process. "

http://www2.visalia.k12.ca.us/health/pre-school.htm

" The Language-Learning Early-Advantage Program (LEAP) is an

individualized communication enrichment preschool program. It

features a strong language-based curriculum and a very small teacher-

child ratio designed to maximize each child's speech and language

development. This program is open to children between the ages of

three and five years, and especially welcomes those with speech

and/or language delays only or children who are learning English as

a second language. "

http://www.bsos.umd.edu/hesp/kidbroch.html

" Kyrene Preschool offers a developmental curriculum consistent with

the philosophy. The program is language based with a strong emphasis

on language acquisition and development.

The goals are to provide many experiences for enhancing

communication skills, guidance and support in the development of

self-control and independence, and a positive preschool experience;

to encourage development of a positive self-concept and an accepting

and caring attitude toward others; and opportunities for development

of appropriate interactive skills between peers, creative

expression, making choices, developing problem-solving skills,

growing intellectually, and developing fine and gross motor skills. "

http://www.kyrene.org/resource/preschool/preschool_program.htm

=====

[Guest guest]

Hello everyone!!!

It has been quite a while since I have posted, although I have been

on this list lurking. I am old timer here and have some great

friends that I have met on this list. My son was diagnosed at the

age of 2 1/2 with severe verbal dyspraxia, oral apraxia/hypotonia,

senosry issues, high anxiety, etc. etc. He is now 11 and doing

incredible!!! Making All A's (okay, 1 in middle school in

advanced classes. He has many friends - most who don't even know

that he had major " issues " when he was younger.

The only social issues my son has ever had has been that he is too

nice and used to give the other kids anything they wanted, even if it

was a toy he was playing with at the time. I think when these

children are younger, because they don't have the words or the speech

to say how they are feeling, or to communicate with the children

their own age - they either avoid, give in, or fight. I think this

is the same in all children, just more apparent in ours because they

don't have the words to tell us why they did something.

I think that for any child maturity comes at different times. I also

think that because we are so much more " tuned into " our children we

see and dissect and feel more of everything they are going through -

and of course this makes us question everything...

I think you child is perfectly okay socially. When he is around the

older children, he follows what they are doing. He blends in because

he just does what they are doing and does what they tell him. When

he is around kids his own age, he wants to be more of a leader but

gets frustrated because he can't verbalize this to his friends. He

probably doesn't want to follow them, but be their equal. A give and

take relationship is hard when you cannot verbalize. So, he reacts

the best way he knows how...He gets mad and comes to you. As he

grows, becomes more verbal, and matures - socializing with kids his

own age will become easier.

This is just an opinion of a mom of 11 year old and 9 year boys. I

hope it helps!!

Carnell

>

> Our 28 month old was recently diagnosed with moderate to severe

verbal

> apraxia. Currently our son doesn't deal well playing with other

> children his age. I am a stay-at-home mom, but we are involved in

a

> playgroup, library story time, and church groups so he is exposed

to

> other children. He has an older sister, age 5, they get along

well.

> When playing with older children, he does fine. Examples: Today I

> helped at my daughter's preschool & my son came along. The

children

> played duck-duck goose and he got right in there and got along

great

> with these 5-year-old kids. A couple days ago at playgroup, it was

> complete opposite. He was fine playing on the floor with toys, but

if

> a child around his age got in his space (not even taking away his

toy,

> just getting near him), he gets upset. He doesn't hit, he just

gets

> flustered and comes running to me. I know part of his frustration

is

> he can't vocalize, but we are trying to work with him on getting

past

> this point.

>

> Has anyone else had this similar social behavior with their child

> diagnosed with apraxia? I'm just trying to get a grasp if this has

> anything to do with apraxia or if it's just a terrible 2 phase.

Thanks

> for taking the time to read.

>

[Guest guest]

I could not find out which post it was, but I have to disagree with

the poster who says that social issues and behavior issues are not

related to apraxia. Quite the opposite is true. Children with true

apraxia are more prone to have social and behavioral issues because

they have apraxia. Apraxia in itself does not have the characteristic

traits of social skill problems and behavior problems, but due to the

frustration of not being able to express oneself, these things

unfortunately can occur and often do. It is not a separate condition

(though it can be); you just have to look at the circumstances and

become an outsider to your child in order to look at the situation

objectively. Children with verbal apraxia do get very frustrated

sometimes becau they are unable to express themselves effectively and

if not when they are younger,then when they get older due to

misperceptions in thought.

>

> Our 28 month old was recently diagnosed with moderate to severe

verbal

> apraxia. Currently our son doesn't deal well playing with other

> children his age. I am a stay-at-home mom, but we are involved in

a

> playgroup, library story time, and church groups so he is exposed

to

> other children. He has an older sister, age 5, they get along

well.

> When playing with older children, he does fine. Examples: Today I

> helped at my daughter's preschool & my son came along. The

children

> played duck-duck goose and he got right in there and got along

great

> with these 5-year-old kids. A couple days ago at playgroup, it was

> complete opposite. He was fine playing on the floor with toys, but

if

> a child around his age got in his space (not even taking away his

toy,

> just getting near him), he gets upset. He doesn't hit, he just

gets

> flustered and comes running to me. I know part of his frustration

is

> he can't vocalize, but we are trying to work with him on getting

past

> this point.

>

> Has anyone else had this similar social behavior with their child

> diagnosed with apraxia? I'm just trying to get a grasp if this has

> anything to do with apraxia or if it's just a terrible 2 phase.

Thanks

> for taking the time to read.

>

[Guest guest]

it may not be true for your child but it is true for apraxia.

In itself apraxia is not a social nor a behavioral disorder. Any

social or behavioral issues that are found in a child with apraxia are

not due primary to apraxia -they would be secondary to the apraxia

due to frustration/inappropriate placement or therapy etc. Also it is

possible that a child with apraxia can have a duel diagnosis of

apraxia and autism or some other disorder.

I know that some don't appreciate how delicate self esteem is, how

damaging frustrations can be for preschool apraxic children. I worked

hard to avoid and reduce frustrations for my apraxic child; by

learning all I could about his condition and how I could best help

him. By advocating for appropriate therapies and placements and

finding alternative ways of communication (such as sign and simple

picture exchange). By providing multisensory therapies for him that

were both effective as well as fun. By trying to give him time to be

a kid while trying to get hours of therapy in a day. It wasn't easy

for him and it wasn't easy for me and my husband either. In fact it

wasn't easy for his brother -but we made it through the frustration

(which in spite of trying to reduce were still there of course- just

not to the extreme) and Tanner, as well as many others here in this

group never had social nor behavioral issues. Unless you want to

count him being shy in groups of children in his early years. But as

I and others posted -our children who were shy in early years are far

from shy today.

This is not to say that your child is apraxic and doesn't have social

or behavioral issues, but there are simple ways to avoid or overcome

them if they are due to frustration (and not a co diagnosis such as

autism). The moral is to do what you can to protect your child's self

esteem, to reduce frustration, and to make sure your child has

appropriate diagnosis, therapy and placement. Make sure you provide

alternative ways to communicate until they can communicate verbally too.

I don't know what you mean by

" then when they get older due to misperceptions in thought "

Can you explain that?

Apraxia is also not a cognitive nor receptive disorder.

Most in this group over the years are mainstreamed in school/life.

Of course there are the exceptions -there are always exceptions.

Hope this helps

=====

[Guest guest]

Very interesting, Janice. All the way to Utah! That doc's prices

are very reasonable. The DAN doc in our state, Oregon, charges $500

for the first visit. I sure wish I had a lot of money! There is

definately something to the new science on all of this. Dr. Yasko

says she used to see ASD kids based on more severe mutations, but now

that our planet is much more polluted lesser mutations are causing

the ASD problems. I've never been a big believer in the

psychological side of things; a person would have to be really

traumatized to exhibit even a few of our symptoms, impossible to

exhibit all of them without biological deficiencies. Thank you for

so generously sharing your information. I will look into those tests

and look for other DAN docs.

All the best,

[Guest guest]

I totally agree.   I see so many kids really try with out daughter but get

frustrated and give up.   She wants to socialize but has had so many limited

opportunities that all she really does is hug and kiss on other kids. 

 

We startes something similar to floortime playproject with easter seals.   It

has made tremendous strides in her social skills , that and her aac device.     

 

Here is the link to our center.    This is a home program and based on Stanley

Greenfield's studies.    It is open to all kids not just those with an autism

dx.

 

 

They use the child's interests to help motivate the learning process i.e. turn

taking, better eye contact etc..

 

northgeorgia.easterseals.com/site/PageServer?pagename=GADR01_PLAY - Cached 

The information transmitted is intended only for the person or entity to which

it is addressed and may contain confidential, proprietary, and/or privileged

material. Any review, retransmission, dissemination or other use of, or taking

of any action in reliance upon, this information by persons or entities other

than the intended recipient is prohibited. If you receive this in error, please

contact the sender and delete the material from all computers.

Sharon Lang

[Guest guest]

our dan is $500 for the first visit also, which includes the nutritional

testing.

 

The information transmitted is intended only for the person or entity to which

it is addressed and may contain confidential, proprietary, and/or privileged

material. Any review, retransmission, dissemination or other use of, or taking

of any action in reliance upon, this information by persons or entities other

than the intended recipient is prohibited. If you receive this in error, please

contact the sender and delete the material from all computers.

Sharon Lang

[Guest guest]

Hi,

My daughter is 3 and 1/2 and has apraxia along with hypotonia. I

would say from my past experiences that your 28 month old is not

acting anything unusual for his age. My daughter and her typical twin

attended a center based early intervention group once a week and

interacted with other same age peers 2 days a week in a preschool

program. She played well with her older siblings and she loved

playing with her baby cousin, giving him toys and cuddling him. WIth

her same age peers, it is common for this age group to play along side

each other, not necessarily interacting with each other in full

engaged play like a tea party. This is a skill that comes with

experience and time. Most kids who are playing with something will

get upset if someone comes over and try to take the toy away or want

to sit in and crowd their space. SOme kids react by hitting, some

react by crying, and others react by running to their parent(s) to

help solve the problem. My daughter would do the same as your son,

come up to me and sign that the child took their toy or wants her toy.

I would go over and explain the child thought her toy was cool and

wanted to sit with her and we can take turns sharing the toy and then

monitor the situation, giving each child enough time to play with the

toy/game or whatever it was at the time. Even now at 3 1/2, the

typical preschoolers still have to work on sharing, turn taking, being

kind, learning how to ask nicely and to voice their answers (sure, no

thank you, etc).

Personally, I think its all part of being a 2 year old and learning

how to interact with other children. Older children and adults tend to

indulge young kids (letting them win, letting them have the toy etc)

and younger kids such as babies tend to adore the attention our kids

are giving them, and then theres the reality of same age peers....we

as parents have to constantly model appropriate behavior and how to

react to situations, even if the other kid(s) aren't acting

appropriately.

I don't believe that apraxia in of itself is a social skills issue,

but rather at times it is a communication issue, when our child cannot

communicate successfully via voice, sign language, acc etc and gets

upset, or if s/he tries to communicate, the other child does not

understand.

Lori

>

> Our 28 month old was recently diagnosed with moderate to severe verbal

> apraxia. Currently our son doesn't deal well playing with other

> children his age. I am a stay-at-home mom, but we are involved in a

> playgroup, library story time, and church groups so he is exposed to

> other children. He has an older sister, age 5, they get along well.

> When playing with older children, he does fine. Examples: Today I

> helped at my daughter's preschool & my son came along. The children

> played duck-duck goose and he got right in there and got along great

> with these 5-year-old kids. A couple days ago at playgroup, it was

> complete opposite. He was fine playing on the floor with toys, but if

> a child around his age got in his space (not even taking away his toy,

> just getting near him), he gets upset. He doesn't hit, he just gets

> flustered and comes running to me. I know part of his frustration is

> he can't vocalize, but we are trying to work with him on getting past

> this point.

>

> Has anyone else had this similar social behavior with their child

> diagnosed with apraxia? I'm just trying to get a grasp if this has

> anything to do with apraxia or if it's just a terrible 2 phase. Thanks

> for taking the time to read.

>

[Guest guest]

I hope this does not post twice, as I had to sign in again for

some weird rean (?)

Sharo,

Do all patients have to pay $500 for the first visit, or are these

tests all covered by insurance, if you have it? My son has

Medicaid...do you know if Medicaid covers these tests?

If not, no sense me coming that way because we cannot afford $500 out-

of-pocket.

I would much rather come there than to try and convince his local

pediatrician to get all the nutritional testing he needs.

P.S. Sharon, are you feeling better? I got busy and was unable to e-

mail, or download IM, to see how you were feeling.

>

> our dan is $500 for the first visit also, which includes the

nutritional testing.

>  

>

>

> The information transmitted is intended only for the person or

entity to which it is addressed and may contain confidential,

proprietary, and/or privileged material. Any review, retransmission,

dissemination or other use of, or taking of any action in reliance

upon, this information by persons or entities other than the intended

recipient is prohibited. If you receive this in error, please contact

the sender and delete the material from all computers.

>

> Sharon Lang

>