Re: question...apraxia.....express feelings????

[Guest guest]

HI - I read your email.....I AM SOOO SORRY. I know there is a book on the

market by Shriver Called????HEAVEN...Check and Noble, you read

it to the children IT's very good... it's on the kids level.....I hope this

helps... JOYA111

[Guest guest]

I am not sure what step to take in terms of counseling. I just wanted to

write that I read your message and I am terribly sorry for what has happened

to your husband and your family. I will put you in my prayers. It must be

exhausting to have to stay so strong for your children. I think the fact

your littler ones are speaking about their dad, even if it is just to cry

Daddy to you, is good - they are reaching out to you which means they

haven't shut down. And doing well still in school is a good sign, too. I

don't know how much more you can say except what you have said, and perhaps

reassuring them that their father loves them and hasn't deliberately

abandoned them and the like. It all sounds very bewildering. I do think

you might want to go to a counselor for you who also sees families, and

perhaps after you have spoken with the counselor on a couple of occasions

individually, you could bring your older or all children with you - or he or

she might help you create the way you would like to talk with your children

about their dad's condition. Art therapy actually doesn't sound like a bad

idea for your twins, either. It's a good thought. My heart goes out to you.

Best,

Betsy, mom to Wiley

Besides the fact that the twins are only three (and I feel

>intelligent...LOL) should I expect them to try and communicate their

>feelings...They are whiny and when in trouble and need that time out they

>call for " daddy " .The longer I am writing the less this makes sense.....I

>hope

>someone understands this....thank you for reading this..and no the twins

>are

>not in counseling....but it would have to be a counselor that deals with

>non-speaking kids...art therapy???? The teachers say they are doing great

>in

>school....Kathy

[Guest guest]

My prayers are with you. I am so sorry to hear about your husband,

and I hope that he recovers.

I do have one suggestion. Can the twins draw at all? They are

young, but it still might help them to express what they are feeling.

Good luck!

Suzi

> I felt so bad reading the posts about kids knowing that they

cannot talk like

> others....I have a question for the group since I am sure someone

out there

> must have gone through the same thing....my husband was in an auto

accident

> on 3/13 and to make a long story short has 3rd degree burns on a

third of his

> body, has never regained consciousness, is on life support-trach,

with the

> feeding tube...the whole nine yards....I have 4 boys...8,6, and

the almost 4

> yr old twins with apraxia. The twins were especially close to

him as I

> would leave in the morning and drop the older 2 off at school and

I went to

> work and it was just him and the twins until school at 11:30.

[Guest guest]

Hi Kathy -

First, let me say that I am so sorry you're going through so much and my

prayers are with you and your family. I was thinking about your post and

the thought I came up with for your twins is to just keep on talking about

your husband in the simplest terms you can to them. If they are unable to

verbalize their thoughts, it's kind of up to you to anticipate what they may

be wondering and answer it for them. I remember when my son was non verbal

still and I used to just babble all day long because I always wondered what

he might be wondering so I tried to just talk and talk about anything that

we were seeing or doing so that maybe I could anticipate what he may be

wondering. I'll never know if it worked or not but I guess it couldn't

hurt. This was a topic to the list the other day... all the questions our

curious toddlers should/could be asking but can't. My heart goes out to the

mothers in this situation because I was there too last year and I remember

saying the same exact thing. Just keep on reassuring your kids and I'm sure

your mere presence will be a comfort to them. Best of luck to you -

in NJ

KDR@...

From: Altoonakenton@a...

I felt so bad reading the posts about kids knowing that they cannot talk

like

others....I have a question for the group since I am sure someone out there

must have gone through the same thing....my husband was in an auto accident

on 3/13 and to make a long story short has 3rd degree burns on a third of

his

body, has never regained consciousness, is on life support-trach, with the

feeding tube...the whole nine yards....I have 4 boys...8,6, and the almost 4

yr old twins with apraxia. The twins were especially close to him as I

would leave in the morning and drop the older 2 off at school and I went to

work and it was just him and the twins until school at 11:30. I am

wondering

how to approach them without making them upset....not to talk about death

with them, but just the missing him part.....They all know that he is in the

hosp due to an accident and he breathed in smoke and it hurt his lungs, but

do not know the physical side. My one twin spoke for about 15 minutes

straight the other night about Daddy and the van and honestly I did not

understand most of it.....he was getting more and more frustated and finally

he burst into tears just saying daddy, daddy....I initiated the

converstation

by saying that we all miss Daddy and he is in the hosp with drs. and nurses

giving him med. etc.. They are used to him being in the hosp because he

has

a kidney disease(on dialysis) and is in the hosp frequently, but we can go

and visit him and they talk to him on the phone.....but of course this is

different. They older two go to counseling at school and she has given me

good ideas like keeping pictures around and letting them talk into a tape

recorder and letting Daddy hear them, etc...but I can't read their

minds...I've said that I am not going anywhere as my older ones have gotten

me alone and asked questions about heaven and who would take care of them if

I die, etc.....Besides the fact that the twins are only three (and I feel

intelligent...LOL) should I expect them to try and communicate their

feelings...They are whiny and when in trouble and need that time out they

call for " daddy " .The longer I am writing the less this makes sense.....I

hope

someone understands this....thank you for reading this..and no the twins are

not in counseling....but it would have to be a counselor that deals with

non-speaking kids...art therapy???? The teachers say they are doing great

in

school....Kathy

[Guest guest]

Hi Vera,

I spoke not that long ago with Dr. Pat Lohman who faxed me over some

of her work that she presented at the ASHA convention last year about

an apraxia study. In a study of hundreds of parents they found that

the number one source of information for parents of apraxic children

is the internet. Online

chats, grouplists and websites have leveled the playing field to help

children from all over the world. Some areas of

the world do not have knowledgeable professionals, however the

parents can take the information they learn here and pass it on to

those that work with their child, and learn how to better help their

child at home themselves during the rest of the day. There are also

many situations where the parent and the professional are both

members of this group.

The information shared here from the lay people, which I'm guessing

you are just referring to the parents, typically comes from personal

experience, trial and error, and professional advice which worked -or

didn't work, for that person's child. I consider that type of

sharing valuable for my child, and for awareness for Early

Intervention, speech disorders, etc. for all children. With any

professional advice/diagnosis we know and are told to seek second

opinions - and that would include double checking any information you

learn online too of course. EFAs are a

perfect example. Almost all the parents, and some professionals,

will tell you one after the other to try it -and how it works - and

while this is going on scientists are arguing about why it works, who

receives the grant money - while some other professionals are

waiting until EFAs are FDA approved outside of baby formula before

they tell their patients anything for fear of being sued. Finding

out about EFAs for my son Tanner from others online -priceless.

Most MD's can give you a list of disorders where the children were

considered mentally retarded until the parents -the lay people -came

forward to advocate for their children -which helped all the children

with that particular disorder going ahead. As parents we are of course

passionate for our

child -or our " case study " who we observe, love, protect as best we

can, and work with 24/7. Parents like us may not have knowledge

about every aspect of being an SLP -however we are experts on our own

children and will know if an evaluation is accurate or not. In the

Not Just A Late Talker TV talk show we were interviewed for, Dr. Judy

Flax said that in clinical studies they found that parents reports

were just as accurate in scoring the child's ability as

professional's standardized tests -and went on more in praising the

parents. I'm guessing that you would not be calling Dr. Judy Flax

and the other wonderful professionals from the medical, speech and

other therapies, educational, and scientific fields that also

contribute advise in this group lay people -yet they too make up the

information base that Dani was referring to looking for input to her question.

In addition -some of the professionals that contribute here are also

parents of children with communication impairments so they offer

advice from both sides. Kathy, for example, who posted about some

of the downsides of intelligence testing she found with her own

apraxic child, also happens to be a Kindergarten teacher. Many of us

were fortunate enough to meet Kathy's entire family at the last

CHERAB Holiday party. By the way you answered her last message it appears you

were not aware that she is a professional like you, as well a loving

parent who sadly just lost her husband.

Being part of a grouplist doesn't mean you are disregarding the

professionals in your child's life -you are looking to enhance, and

educate into learning how to help your child more. Or learning how

to help the children you are working with more if you are a

professional. While you are on a grouplist it's OK to offer the

other point of view however you may find you not only walk away with knowledge

-you walk

away with new friends.

I chose to post my message to you with Kathy's message here -because

her message sums up the importance of what our group, and those like it

provides.

Express feelings???? Yes.

=====

[Guest guest]

Good morning ....you write so well, it's always a pleasure reading your

notes.

The purpose and philosophy stated here are forward-looking, humane,

informative...all those good things and more. And yes, the internet opens

the world to us in the most astonishing ways. Thanks for sharing this.

My puzzlement, I repeat, is with the disparagement I hear on the part of

several postings, not with the idea of an informative, sharing, caring

group. Several of your writers appear to follow a pattern of: find a

professional, visit ( & pay, in some cases) the professional, hear the

results, scoff & disparage the results as well as the professional, turn to

the group as the superior source of knowledge & information. Puzzling.

Vera

> Hi Vera,

>

> I spoke not that long ago with Dr. Pat Lohman who faxed me over some

> of her work that she presented at the ASHA convention last year about

> an apraxia study. In a study of hundreds of parents they found that

> the number one source of information for parents of apraxic children

> is the internet. Online

> chats, grouplists and websites have leveled the playing field to help

> children from all over the world. Some areas of

> the world do not have knowledgeable professionals, however the

> parents can take the information they learn here and pass it on to

> those that work with their child, and learn how to better help their

> child at home themselves during the rest of the day. There are also

> many situations where the parent and the professional are both

> members of this group.

>

> The information shared here from the lay people, which I'm guessing

> you are just referring to the parents, typically comes from personal

> experience, trial and error, and professional advice which worked -or

> didn't work, for that person's child. I consider that type of

> sharing valuable for my child, and for awareness for Early

> Intervention, speech disorders, etc. for all children. With any

> professional advice/diagnosis we know and are told to seek second

> opinions - and that would include double checking any information you

> learn online too of course. EFAs are a

> perfect example. Almost all the parents, and some professionals,

> will tell you one after the other to try it -and how it works - and

> while this is going on scientists are arguing about why it works, who

> receives the grant money - while some other professionals are

> waiting until EFAs are FDA approved outside of baby formula before

> they tell their patients anything for fear of being sued. Finding

> out about EFAs for my son Tanner from others online -priceless.

>

> Most MD's can give you a list of disorders where the children were

> considered mentally retarded until the parents -the lay people -came

> forward to advocate for their children -which helped all the children

> with that particular disorder going ahead. As parents we are of course

> passionate for our

> child -or our " case study " who we observe, love, protect as best we

> can, and work with 24/7. Parents like us may not have knowledge

> about every aspect of being an SLP -however we are experts on our own

> children and will know if an evaluation is accurate or not. In the

> Not Just A Late Talker TV talk show we were interviewed for, Dr. Judy

> Flax said that in clinical studies they found that parents reports

> were just as accurate in scoring the child's ability as

> professional's standardized tests -and went on more in praising the

> parents. I'm guessing that you would not be calling Dr. Judy Flax

> and the other wonderful professionals from the medical, speech and

> other therapies, educational, and scientific fields that also

> contribute advise in this group lay people -yet they too make up the

> information base that Dani was referring to looking for input to her question.

>

> In addition -some of the professionals that contribute here are also

> parents of children with communication impairments so they offer

> advice from both sides. Kathy, for example, who posted about some

> of the downsides of intelligence testing she found with her own

> apraxic child, also happens to be a Kindergarten teacher. Many of us

> were fortunate enough to meet Kathy's entire family at the last

> CHERAB Holiday party. By the way you answered her last message it appears you

> were not aware that she is a professional like you, as well a loving

> parent who sadly just lost her husband.

>

> Being part of a grouplist doesn't mean you are disregarding the

> professionals in your child's life -you are looking to enhance, and

> educate into learning how to help your child more. Or learning how

> to help the children you are working with more if you are a

> professional. While you are on a grouplist it's OK to offer the

> other point of view however you may find you not only walk away with

> knowledge -you walk

> away with new friends.

>

> I chose to post my message to you with Kathy's message here -because

> her message sums up the importance of what our group, and those like it

> provides.

>

> Express feelings???? Yes.

>

> =====

>

[Guest guest]

I want to say that I am most impressed with the response from others to " Vera "

on this list. I wish I lived in New Jersey and had a car so that I could attend

your meetings. You do such a great service for the parents ( " lay people "

whatever that means) and give us a voice as well. We are so cowed and rolled,

and yes, helped too by the " professionals; " still, it is nice to have a voice.

Nina

----- Original Message -----

Being part of a grouplist doesn't mean you are disregarding the

professionals in your child's life -you are looking to enhance, and

educate into learning how to help your child more. Or learning how

to help the children you are working with more if you are a

professional. While you are on a grouplist it's OK to offer the

other point of view however you may find you not only walk away with

knowledge -you walk

away with new friends.

[Guest guest]

Hi Nina....The word " layman " means someone not in any trade or profession

under discussion at the time. So if you were speaking of doctors, those not

in that profession, even if in some other profession, would be laymen. But

I'll bet that a dictionary would give me a better definiton than I can come

up with. I used " lay people " so as not to use what some may perceive as a

sexist term.

Vera

> I want to say that I am most impressed with the response from others to " Vera "

> on this list. I wish I lived in New Jersey and had a car so that I could

> attend your meetings. You do such a great service for the parents ( " lay

> people " whatever that means) and give us a voice as well. We are so cowed and

> rolled, and yes, helped too by the " professionals; " still, it is nice to have

> a voice.

> Nina

> ----- Original Message -----

>

> Being part of a grouplist doesn't mean you are disregarding the

> professionals in your child's life -you are looking to enhance, and

> educate into learning how to help your child more. Or learning how

> to help the children you are working with more if you are a

> professional. While you are on a grouplist it's OK to offer the

> other point of view however you may find you not only walk away with

> knowledge -you walk

> away with new friends.

>