RE: how to handle halloween? holidays?

[Guest guest]

My son is 3 ½ and until very recently I wasn’t sure if he understood

anything. We now know his comprehension is fantastic. We can ask him to do

almost anything now and he will do it. At three he barely had any words at

all. He now has a few more. He babbles constantly and now tries to say

words. I will say, “Can you say Mama?” and he will say “Mama, I dead did, I

did dit” (I said it, I did it). This has been since he started the preschool

program at the school district for special needs kids. We are also about to

start him on private therapy for speech. It has been a long road but slowly

but surely he is making progress. He even tries to sing now! He sings “uh

dog uh dog uh dog dog dog” along with the Mickey Mouse Hot Dog song. Most

can’t understand a word he says, but slowly I am being able to.

From:

[mailto: ] On Behalf Of wandre_k

Sent: Monday, October 11, 2010 10:43 AM

Subject: [ ] how to handle halloween? holidays?

My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because

he can even mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore

Joe because he can't talk. Most say-i don't know what to get him for

Christmas since he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

Let him go trick or treating if ge wants to go, most little kids don't say it

even if they can. As far as Christmas goes show him pictures and ask him to

point to what he might like for a present, either on the computer or the

circulars that we all get inundated with and make a list. It is a shame that

family is being so mean, stay strong your little guy needs you.

Deb

Sent from my Verizon Wireless BlackBerry

[ ] how to handle halloween? holidays?

My 3 yo son really only has 1-2 words if that. My husband feels since he can't

talk that there is no reason for him to go trick or treating because he can even

mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas

since he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

Don't cry!!! My son at 3 -he was able to imitate in his own way -but trick or

treat if I said one word at a time was " ti... ah... tee " And today at 14 my son

Tanner was in the car having a conversation with me about search and rescue

dogs, what happens when people are lost in the snow and how to stay warm until

help arrives and how can these dogs help in locating people that are lost. He

is literally non stop talking now- and funny, great student with tons of

friends...normal (above?!!) -and no I don't think of him as having any " special

needs " anymore. Clearly if Tanner still wants to be an attorney for special

needs kids- he can do that or whatever he sets his mind to -no doubt. But early

on -OMG professionals did not give my son a bright prognosis...in fact I even

heard from one doctor down the road " I never said anything but I never thought

Tanner would come as far as he did he was so severe in so many areas " But he

did.

So you say NV isn't working as it is for most. PLEASE give details -how long

-any signs at all? (check this list http://pursuitofresearch.org/pursuit.html )

Is your child on fish oils? Any meds? What other supps? Let's see if we can

tweak that to get that going to compliment therapy.

And below a super long archive on how to teach " trick or treat " which I hope

helps -have not read the whole thing -but much in the archives on this and I'm

sure others have more to share!

From: kiddietalk <kiddietalk@...>

Sent: Wednesday, October 22, 2008 6:25:09 PM

Subject: [ ] Re: How do you teach " trick or treat " ?

The following is an archive of fun things to do as well as some

cute " trick or treat " stories where some do offer suggestions on " how

do you teach " trick or treat " And thought I'd post it here because

Sherry one of your messages from Nov 4, 2002 is below when Josh was 4!!!

Happy Halloween!

Here are a few Halloween links with a few cute stories.

Pumpkin Patch Activity

http://www.starfall.com/n/holiday/halloween/play.htm?f

Learn to Read Homepage

http://www.starfall.com/

Fun to Read

http://www.starfall.com/n/level-a/index/load.htm?f

LearningPage.Com

http://www.learningpage.com/free_pages/home/spooky_safe.html

LearningPage.Com Featured Books:

Autumn

http://www.learningpage.com/free_pages/home/autumn_book.html

NASA Halloween Activities

Spooky sounds

http://www.nasa.gov/vision/universe/features/halloween_sounds.html

" galactic ghoul "

http://www.nasa.gov/multimedia/imagegallery/image_feature_halloween.html

Halloween Speech Therapy

http://specialchildren.about.com/b/2006/10/25/site-of-the-day-wednesday-october-\

\

\

25-2006-halloween-speech-therapy-games.htm

Speakingofspeech.com

A list of clues to introduce Halloween

vocabulary (related to PRINT 'N PLAY GAMES Halloween Bingo) and much

more!

http://www.speakingofspeech.com/Thematic_Materials.html#Halloween

Pick a Pumpkin Activity!

http://www.education-world.com/a_lesson/lesson/lesson323.shtml

Halloween Carols

http://www.night.net/halloween/halloween-carols.html-ssi

The Teacher's Corner

Halloween Activities and Lesson Plans

http://www.theteacherscorner.net/seasonal/halloween/

Ben & Jerry Halloween fun

http://www.benjerry.com/halloween/games/

Hershey Halloween fun

http://www.hersheys.com/trickortreats/funstuff/

Kaboose Halloween games

http://holidays.kaboose.com/halloween/halloween-games.html

School Express Fun time Activities

http://www.schoolexpress.com/funtime/index.php

http://www.schoolexpress.com/funtime/girl_doll/index.php

http://www.schoolexpress.com/funtime/boy_doll/index.php

http://www.schoolexpress.com/funtime/mr_potato/index.php

From: " Toni Wells " <mommybizz@>

Date: Tue Oct 28, 2003 12:12 pm

Subject: RE: [childrensapraxiane t] Tips for a nonverbal 'Trick or

Treater'.... .

What we did on Saturday with Hope was went with a bunch of friends

and they

said trick or treat. On a couple of houses where they were grouped

together

and Hope got separated from them I was right with her and I'd prompt

her to

say it and hope she repeated it. She didnt, but the people didnt

care. She

hadn't quite figured out to just hold the bag open for candy either.

She

had it bunched up so it was closed in one hand, and took whatever it

was in

her other hand. I'd have to remind her to put it in the bag. All

people

saw was a little kid trick or treating and just starting to get the

hang of

it. They didnt care she didnt talk. A couple of time she did answer

people

when they asked her who she was dressed as, and I had to translate

for her

since it came out as " da-ra " . But a lot of the people understood she

was

saying Dora and that was great. Mostly she didnt say anything, just

stood

there with her bag and smiled.

Toni

Re: Tips for a nonverbal 'Trick or Treater'.... .

" cagey92 " <see.run@

Tracey,

Last year was the first year really went trick-or-treating.

We went with our neighbors so it was a 4 year old, at

3yrs,3mos, a ten month old and an 11 month old (all pulled in

wagons). Each adult would hold a baby and the two older boys would

race for the doorbell, but once the door was opened, they were both

too shy to say anything so the adults said " Trick or Treat " and then

the 4 y.o. said a very soft thank you and did a sign language

thank you. No explanations necessary except maybe a quick shrug and

a " he's still new at this - maybe next year. " They only lasted for

5 houses, but had fun and no one reacted with anything but remarks

about how cute they were.

Most people realize that young children can be very shy

(communication disorder or not), especially when in awe of the

process of Halloween. If you run into anyone with rude comments,

you'll know which houses to avoid next year. Or which ones to TP -

just kidding! <wink> Hope you have a great time!

G. (mom to , 4.3 yo)

From: " jacksonsmom12000 " <kim.gill@>

Date: Wed Oct 30, 2002 2:41 pm

Subject: Happy Halloween!

I have been debating sending out this message, but I have had 2

really great " improvements " with 's speech lately, that I had

to share with others.

First, I believe halloween can be great " free " speech therapy. I

was SO nervous as to how would approach halloween this year.

He did great last year, but now that I understand his apraxia and

sensory issues...I thought that he would find this event tough to

take.

On the contrary! loved going door to door on Sunday (in our

town, we do trick-treating on the sunday before halloween during

1:00-

4:00). He said " tick o teat " to the neighbors, which we practiced at

length and my daycare provider gets credit for this...and then " a-

you " for thank you when he got his candy. He never said any of this

before. Not ONE person noticed a speech delay or that there was any

issue with him! This also helped him to work with his " shyness " of

strangers... and then he loved to pass out the candy to others at our

house. He said " hi " and " bye " when passing out the candy. And, he

responded to people asking what he was going to be for halloween,

which was " bob " (the builder) which said very clearly. I am

more excited over the fact that he just responded so naturally!

Then, last night...he wanted some of the millions of candy we now

have in our house. could say " candy " before any other word,

so that was very intelligable, but last night, he said/signed, " I

want candy " !

OK, this is our first official phrase! I don't know if I am making

too much out of this...or if it is the beginning of good things to

come and more talking. My fingers are crossed!

That's all for now, and for all of you who will be trick-treating

tomorrow, have fun!

Kim

From: kdr <kdr@>

Date: Fri Nov 1, 2002 6:59 pm

Subject: RE: Happy halloween Story

Hi everyone -

I havn't written in a while but I wanted to share a happy story with

you.

On Halloween last year, my son couldn't say trick-or-treat

and just

kind of stood there with his bag open while his brother said trick-

or-treat

for the two of them. Yesterday, he was the first one yelling out

trick-or-treat as soon as the doors started to open. One person gave

him a

Tootsie-Pop and he took it and then told her really enthusiastically

" Thanks! this is just what I was hoping I would get. " What else was

heartwarming to see was that every person he spoke to that day, all

total

strangers, understood him. He was finally just like every other kid.

It

was amazing to watch and made me pause to think about just how far

he has

come. His biggest issue right now is probably word retrieval but

even that

is going very well. Fortunately he has developed ways to work around

it.

For instance, if he can't remember the word " chocolate chip cookie "

he'll

say " Mommy, can I have the round things that you gave me in a bowl

for snack

yesterday? "

I'm so thrilled with his progress. Holidays are especially amazing

for me

because it's a specific time that I can remember from the year

before how he

was. I thought I'd share for all those mom's who's children couldn't

say

trick-or-treat this year, there's a good chance next year will be a

different story.

in NJ

kdr@

Re: [childrensapraxiane t] Re: Happy halloween Story

since we are sharing halloween stories...

a funny one for this year. my son (3) could care less about candy and

didn't

want to hold his pumpkin, which was o.k. but he did run up to the

houses and

knock or ring the bell. since he's not verbal, he didn't say

anything, but

every house he wanted to go in. and muscled his way into a neighbor

house

right past her and down the hall. so i had to run in for him. it's a

good

thing i know her well. so after being embarrassed, i finally was

laughing.

because what do you do when you knock on the door, you go in!!! i

guess he

thought we were going for playdates. he didn't understand the concept

of

halloween, but what a long way we have come from last year where he

wouldn't

get out of the stroller and wouldn't go to any houses. next year

hopefully

we'll have a " trick or treat " from him.

lori

boomr3@

Tue Jul 22, 2003 10:42 pm

" kiddietalk " kiddietalk (DOT) com

Tanner when he was around 3 and a half with a complete stranger who

happened to be another three year old. We were trick or treating

and we were going from house to house where I would model each word

and Tanner (alias purple Telly Tubby at the time) would attempt to

repeat " trick " = " ti " " or " = " ah " " treat " = " teet " At most houses the

adults would smile and hand Tanner the candy. Then one house a

child answered the door and asked us " Why can't he talk? " and I said

in

as bubbly a voice as I could (while horrified inside) " Oh -he's

learning to talk still and he's doing great " The catch phrase I

highly recommend that works for almost any situation... well except

this one. The child then asked (again as clear as a bell) " How old

is he? " and I answered still smiling (but now wondering where

this child's mother was!!) " He's 'only' three " and

quickly the child said " Well I'm three and I can talk " so I quickly

said " Well you are obviously very advanced for you age aren't you! "

Thankfully the mother then came to the door to shoo her son away just

when the

child started to inform us about all the other three year olds in his

preschool...

[Guest guest]

I have not been reading the posts lately, and this is the first one, but I have

to respond.

My daughter was a lot like this, and I encourage you to include him more than

ever. Show him how to wave, or give a thumbs up, or the sign for thank you

before you go trick or treating. Make a little sign for his bucket that says,

" Trick or Treat! " . Never, ever exclude them because of what they can't do. I

have learned this because my daughter did know what was going on before she

could express herself and I realize that now more than ever.

As for what to get him for Christmas, encourage them to play with him. Ask

them, " If you knew what you wanted to say, but had your mouth taped shut, imaging

how hard that would be. That is what it is like for Joe. He wants to interact,

and he will with words, but for now he can through play. "

Take him to the toy store and see what he loves and pass it on to those who do

not know what to get him.

I know that my cousin's son, who is 25, but only able to communicate at the

level of about a 7 year old, has benefited the most in his life from his parents

teaching him by letting him have all the experiences of a person his age. If it

was hard they would help him, but that has made him very well rounded, and has

given him a great self esteem.

Your son is in there, make sure that when his speech does break free that it is

with a hardy " thank you for all that you have done for me " instead of " I wish I

had done that. " Your mommy alarms are all right and that is why you have posted

this. You know in your heart what the family members are doing is wrong. I

have experienced it myself. And I know that a lot of times it is unintentional.

Unfortunately for our family members, now that my daughter is talking and so

much fun, they want to interact, and she wants nothing to do with them. And I

don't make her. She loves the ones who loved her for who she was before she

found her voice.

You hang in there. I remember crying about that time in her life, wishing so

much I could just hear I love you mommy.

Now I hear it every day, along with songs, and yelling, and laughing, and how I

am annoying. (She is 5). It will come.

Wishing you words,

Meyer

[ ] how to handle halloween? holidays?

My 3 yo son really only has 1-2 words if that. My husband feels since he can't

talk that there is no reason for him to go trick or treating because he can even

mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas since

he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

,

So well written and so true. My son can’t say I love you but he does

occasionally sign it. When he first did it, I bawled for hours! He hugs and

kisses a lot now to show his love. They communicate how they can.

From:

[mailto: ] On Behalf Of D. Meyer

Sent: Monday, October 11, 2010 12:27 PM

Subject: RE: [ ] how to handle halloween? holidays?

I have not been reading the posts lately, and this is the first one, but I

have to respond.

My daughter was a lot like this, and I encourage you to include him more

than ever. Show him how to wave, or give a thumbs up, or the sign for thank

you before you go trick or treating. Make a little sign for his bucket that

says, " Trick or Treat! " . Never, ever exclude them because of what they can't

do. I have learned this because my daughter did know what was going on

before she could express herself and I realize that now more than ever.

As for what to get him for Christmas, encourage them to play with him. Ask

them, " If you knew what you wanted to say, but had your mouth taped shut,

imaging how hard that would be. That is what it is like for Joe. He wants to

interact, and he will with words, but for now he can through play. "

Take him to the toy store and see what he loves and pass it on to those who

do not know what to get him.

I know that my cousin's son, who is 25, but only able to communicate at the

level of about a 7 year old, has benefited the most in his life from his

parents teaching him by letting him have all the experiences of a person his

age. If it was hard they would help him, but that has made him very well

rounded, and has given him a great self esteem.

Your son is in there, make sure that when his speech does break free that it

is with a hardy " thank you for all that you have done for me " instead of " I

wish I had done that. " Your mommy alarms are all right and that is why you

have posted this. You know in your heart what the family members are doing

is wrong. I have experienced it myself. And I know that a lot of times it is

unintentional. Unfortunately for our family members, now that my daughter is

talking and so much fun, they want to interact, and she wants nothing to do

with them. And I don't make her. She loves the ones who loved her for who

she was before she found her voice.

You hang in there. I remember crying about that time in her life, wishing so

much I could just hear I love you mommy.

Now I hear it every day, along with songs, and yelling, and laughing, and

how I am annoying. (She is 5). It will come.

Wishing you words,

Meyer

[ ] how to handle halloween? holidays?

My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because

he can even mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore

Joe because he can't talk. Most say-i don't know what to get him for

Christmas since he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

Absolutely your child should be involved in all the fun of Halloween and trick

or treating! My twin boys have always been dressed up for Halloween and we have

always participated in activities. Last year they were almost 2.5 when Halloween

rolled around. That was the first year we did actual trick or treating with

them, and neither one could say " trick or treat " yet but they had tons of fun.

Barbara, mom of:

Spencer 3 years, 4 months, suspected apraxia and MERLD

Truman 3 years, 4 months, former late talker, now typically developing

bel, 18 months, typically developing

>

> I have not been reading the posts lately, and this is the first one, but I

have to respond.

> My daughter was a lot like this, and I encourage you to include him more than

ever. Show him how to wave, or give a thumbs up, or the sign for thank you

before you go trick or treating. Make a little sign for his bucket that says,

" Trick or Treat! " . Never, ever exclude them because of what they can't do. I

have learned this because my daughter did know what was going on before she

could express herself and I realize that now more than ever.

>

> As for what to get him for Christmas, encourage them to play with him. Ask

them, " If you knew what you wanted to say, but had your mouth taped shut, imaging

how hard that would be. That is what it is like for Joe. He wants to interact,

and he will with words, but for now he can through play. "

> Take him to the toy store and see what he loves and pass it on to those who do

not know what to get him.

>

> I know that my cousin's son, who is 25, but only able to communicate at the

level of about a 7 year old, has benefited the most in his life from his parents

teaching him by letting him have all the experiences of a person his age. If it

was hard they would help him, but that has made him very well rounded, and has

given him a great self esteem.

>

> Your son is in there, make sure that when his speech does break free that it

is with a hardy " thank you for all that you have done for me " instead of " I wish

I had done that. " Your mommy alarms are all right and that is why you have

posted this. You know in your heart what the family members are doing is wrong.

I have experienced it myself. And I know that a lot of times it is

unintentional. Unfortunately for our family members, now that my daughter is

talking and so much fun, they want to interact, and she wants nothing to do with

them. And I don't make her. She loves the ones who loved her for who she was

before she found her voice.

>

> You hang in there. I remember crying about that time in her life, wishing so

much I could just hear I love you mommy.

>

> Now I hear it every day, along with songs, and yelling, and laughing, and how

I am annoying. (She is 5). It will come.

> Wishing you words,

> Meyer

>

>

> [ ] how to handle halloween? holidays?

>

>

>

>

> My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because he

can even mimic the works trick or treat and can't even say thank you.

>

> This is becoming a recurring theme-most family members want to just ignore

Joe because he can't talk. Most say-i don't know what to get him for Christmas

since he can't tell us.

>

> I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

>

> I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

>

> Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

>

>

>

>

>

>

>

>

[Guest guest]

I just want to pass along what our Speech Therapist told me. She says she works

with a little girl with apraxia who is just starting to speak at five. She says

everyone is amazed at how much she knows and understands. She was understanding

and learning much more than they thought she was, all along.

>

> My son is 3 ½ and until very recently I wasn't sure if he understood

> anything. We now know his comprehension is fantastic. We can ask him to do

> almost anything now and he will do it. At three he barely had any words at

> all. He now has a few more. He babbles constantly and now tries to say

> words. I will say, " Can you say Mama? " and he will say " Mama, I dead did, I

> did dit " (I said it, I did it). This has been since he started the preschool

> program at the school district for special needs kids. We are also about to

> start him on private therapy for speech. It has been a long road but slowly

> but surely he is making progress. He even tries to sing now! He sings " uh

> dog uh dog uh dog dog dog " along with the Mickey Mouse Hot Dog song. Most

> can't understand a word he says, but slowly I am being able to.

>

>

>

> From:

> [mailto: ] On Behalf Of wandre_k

> Sent: Monday, October 11, 2010 10:43 AM

>

> Subject: [ ] how to handle halloween? holidays?

>

>

>

>

>

> My 3 yo son really only has 1-2 words if that. My husband feels since he

> can't talk that there is no reason for him to go trick or treating because

> he can even mimic the works trick or treat and can't even say thank you.

>

> This is becoming a recurring theme-most family members want to just ignore

> Joe because he can't talk. Most say-i don't know what to get him for

> Christmas since he can't tell us.

>

> I don't know what is in Joe's head. We haven't ever even heard his little

> voice. I don't know if he realizes what is going on.

>

> I just cried all last night. He is making progress (he at least is trying to

> say words). Unfortunatly, the NV hasn't worked miracles for him like some of

> your likes.

>

> Any advice? For any of you with older kids, what do they say about when they

> couldn't talk-did they understand what was going on?

>

>

>

>

>

>

[Guest guest]

I have to disagree with your husband!  Just because a child can not talk does

not mean that he should miss out on holiday fun!  Doesn't he miss out on enough

all ready by being nonverbal?  My 8yr old is extreamly shy so he does not say

" trick or treat " or " thank you " and never has, I just say it for him.  In 7

years of trick or treating I have never ran into one person that seemed to care

that my son didn't speak to them, most of them nod or say something when I say

" thank you " for him.  I think people understand that a lot of kids are shy.

Adults on Halloween would most likely assume that if your son doesn't say

anything because he is shy.  Nothing wrong with that in my opinion.

My youngest son is nonverbal and I took him to the toy store last week to find

out what he wanted for Christmas.  I walked down every isle at Toys R Us and he

pointed and made a noise at things that he liked.  There were a few toys that

he saw, screamed in excitement and tried to jump out of the cart to play with

them.  Those toys are on the top of my list,  He DID tell me what he wanted

for Christmas and it wasn't that hard to figure out!!

Sometimes I cry too, I want soooo much to hear what my little guy has to say! 

There is nothing in this whole world that I want more.  By my son's gestures,

actions and sign language that he knows I know that he is very intelligent,

funny, has a great sense of humor, is compassionate, loving, creative and

imaginative.  There is no reason why he should be treated differently than any

other child.  I am sure that your little guy is just as smart and wonderful as

mine is and keeping him from holidays, fun and being a kid is just unfair in my

opinion.  It's like punishing him for having a disability! 

Sorry, I just feel strongly about this, I know my child suffers a little all the

time by not being able to speak so it just makes sense to try to make the rest

of his time enjoyable.

I

From: wandre_k <wandre_k@...>

Subject: [ ] how to handle halloween? holidays?

Date: Monday, October 11, 2010, 11:42 AM

 

My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because he

can even mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas

since he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

Thank you ! I know what you mean... I cried too! It is wonderful, how

with the challenges comes this awesome appreciation of the smaller

accomplishments. My daughter did something called " seat to feet " on the

trampoline in gymnastics class (has been HUGE for her motor problems). She

couldn't even begin to do this when we first started, and when she did it for

the first time, I ran around screaming like a crazy person. I am so proud of

her, and all that she has come through. And even though in this process I have

" sweated " so many small things, I have been exuberent in them as well! And

though in this process I have made mistakes, I know that I have made great

decisions too. I love that there are so many others out there who will do

anything for their little ones!

[ ] how to handle halloween? holidays?

My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because

he can even mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore

Joe because he can't talk. Most say-i don't know what to get him for

Christmas since he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

I have to disagree with your husband!  Just because a child can not talk

does not mean that he should miss out on holiday fun!  Doesn't he miss

out on enough all ready by being nonverbal?  My 8yr old is extreamly shy

so he does not say " trick or treat " or " thank you " and never has, I

just say it for him.  In 7 years of trick or treating I have never ran

into one person that seemed to care that my son didn't speak to them,

most of them nod or say something when I say " thank you " for him.  I

think people understand that a lot of kids are shy. Adults on Halloween would

most likely assume that if your son doesn't say anything because he is shy. 

Nothing wrong with that in my opinion.

My youngest son is nonverbal and I took him to the toy store last week to find

out what he wanted for Christmas. 

I walked down every isle at

Toys R Us and he pointed and made a noise at things that he liked. 

There were a few toys that he saw, screamed in excitement and tried to

jump out of the cart to play with them.  Those toys are on the top of my

list,  He DID tell me what he wanted for Christmas and it wasn't that

hard to figure out!!

Sometimes I cry too, I want soooo much to

hear what my little guy has to say!  There is nothing in this whole

world that I want more.  By my son's gestures, actions and sign language

that he knows I know that he is very intelligent, funny, has a great sense of

humor, is compassionate, loving, creative and imaginative.  There is no reason

why he should be treated differently than any other child.  I am sure

that your little guy is just as smart and wonderful as mine is and

keeping him from holidays, fun and being a kid is just unfair in my

opinion.  It's like punishing him for having a disability! 

Sorry, I just feel strongly about this, I know my child suffers a

little all the time by not being able to speak so it just makes sense to

try to make the rest of his time enjoyable.

I

From: wandre_k <wandre_k@...>

Subject: [ ] how to handle halloween? holidays?

Date: Monday, October 11, 2010, 11:42 AM

 

My 3 yo son really only has 1-2 words if that. My husband

feels since he can't talk that there is no reason for him to go trick or

treating because he can even mimic the works trick or treat and can't

even say thank you.

This is becoming a recurring theme-most family members want to just

ignore Joe because he can't talk. Most say-i don't know what to get him

for Christmas since he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his

little voice. I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is

trying to say words). Unfortunatly, the NV hasn't worked miracles for

him like some of your likes.

Any advice? For any of you with older kids, what do they say about when

they couldn't talk-did they understand what was going on?

__

[Guest guest]

I can so relate, ! My son just completed all of his PT goals and we

are making higher ones for him. This is a child that couldn’t walk on his

own a few months ago and can no do sooo many things. At the last PT appt,

the PT and I were high fiving so much and he was saying “I dead did” so much

that I had to call everyone knew to brag!

From:

[mailto: ] On Behalf Of D. Meyer

Sent: Monday, October 11, 2010 12:59 PM

Subject: RE: [ ] how to handle halloween? holidays?

Thank you ! I know what you mean... I cried too! It is wonderful, how

with the challenges comes this awesome appreciation of the smaller

accomplishments. My daughter did something called " seat to feet " on the

trampoline in gymnastics class (has been HUGE for her motor problems). She

couldn't even begin to do this when we first started, and when she did it

for the first time, I ran around screaming like a crazy person. I am so

proud of her, and all that she has come through. And even though in this

process I have " sweated " so many small things, I have been exuberent in them

as well! And though in this process I have made mistakes, I know that I have

made great decisions too. I love that there are so many others out there who

will do anything for their little ones!

[ ] how to handle halloween? holidays?

My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because

he can even mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore

Joe because he can't talk. Most say-i don't know what to get him for

Christmas since he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

My kids are 12, 9 and 5. It wasnt until they were about 3yo that they get the

idea that, if I knock on a door, I get candy? I've never in all the years of

taking mine trick or treating, seen one house that actaully waited for any kid

to say " Trick or Treat " .So the fact that he cant say it, really doesnt matter!

My two who could talk were shy enough that they prob wouldnt have said it anyway

at 3yo! At that age, you could take him to five houses and he'd be very happy

with whatever he gets from the experience!Get a cute costume, go early and have

fun.

>

> My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because he

can even mimic the works trick or treat and can't even say thank you.

>

> This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas

since he can't tell us.

>

> I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

>

> I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

>

> Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

>

[Guest guest]

You'd be amazed at how much your son is soaking in - if you could get the word

through to the relatives that the more they speak with your son (with him

communicating by what ever means - pictures, signs, pointing, whatever) the

better it is for him.  Even if they just play with him, wrestle with him, have

some physical contact with him, it's communication that he will learn from,

incorporate, and use as he progresses.  Toys R Us has a catalog for kids with

disabilities of all kinds - I'd suggest going to get a few copies and hand them

out to the relatives - have your son look through it as well and point to things

he may want - then your relatives will have plenty to choose from.  There is

also a fantastic place to get toys for kids - Lakeshore Learning.  They have a

great website, you can get a catalog, and you can even set up a gift list

online.  If you have any questions about what might be good for your son - fun,

educational, therapeutic - you

can call them and talk to someone for advice.  We've had a gift list for quite

some time and my family members have a great time looking through the catalog

online to find things for Josh.  They also have gift cards so that if your

family members don't know, or can't decide, they can get a gift card and you and

your son can choose.

 

As for Halloween - OMG, yes he should go!  Who cares if he doesn't say " trick

or treat " or " thank you. "   I can't tell you how many kids come to my door and

forget, don't, are too shy, whatever.  The fun is dressing up and going out. 

At two, Josh was in his stroller and went as a box of kleenex - it was a bad

year for colds.  At three, Josh didn't say trick or treat, wasn't saying

anything but " ba, "  and wasn't walking so we took him around in his stroller - I

had made a costume that was a Native American outfit on which I painted Lakota

signs - he had a great time and we got to educate some folks on the signs!  At

four, he went as the " Wizard of TaDa! " - we had started on fish oils the summer

before that Halloween and, by Halloween, he was saying trick or treat, thank

you, and was walking on his own - so TaDa!!  (he's gone out every year since

and, at 12yo now, he's talking about what to wear this year - even when he had

the broken femur

last Fall he went in his wheelchair as a JBHunt truck!)

 

Our kiddoes have enough problems to deal with - let them go out and have a blast

on Halloween!

 

Sherry and Josh

From: wandre_k <wandre_k@...>

Subject: [ ] how to handle halloween? holidays?

Date: Monday, October 11, 2010, 10:42 AM

 

My 3 yo son really only has 1-2 words if that. My husband feels since he can't

talk that there is no reason for him to go trick or treating because he can even

mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas since

he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little voice.

I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to say

words). Unfortunatly, the NV hasn't worked miracles for him like some of your

likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

I could not agree more. I recall being so sad when my 3 year old could not tell

me what he wanted to be for Halloween but we dressed with a family theme; went

out on Halloween and had a party at our house. He participated in all even

without being able to talk. Now, at 5, he can tell me what he wants to be and

asks for a pumpkin at every turn. As his language has surged (huge summer for

him), I realize how much he knows and wants to express. I can see him pause,

take a deep breath and try to find the words. We work on language and concepts

but most of all on self-esteem. He needs to feel part of things and understand

that he can do it too. Perhaps your husband is worried - feeling that he will

be exposed. I have those moments but try to remind myself that I have to let

him be a kid and experience everything. Good luck!!

________________________________

From: D. Meyer <mmeyer@...>

Sent: Mon, October 11, 2010 1:26:37 PM

Subject: RE: [ ] how to handle halloween? holidays?

I have not been reading the posts lately, and this is the first one, but I have

to respond.

My daughter was a lot like this, and I encourage you to include him more than

ever. Show him how to wave, or give a thumbs up, or the sign for thank you

before you go trick or treating. Make a little sign for his bucket that says,

" Trick or Treat! " . Never, ever exclude them because of what they can't do. I

have learned this because my daughter did know what was going on before she

could express herself and I realize that now more than ever.

As for what to get him for Christmas, encourage them to play with him. Ask

them, " If you knew what you wanted to say, but had your mouth taped shut, imaging

how hard that would be. That is what it is like for Joe. He wants to interact,

and he will with words, but for now he can through play. "

Take him to the toy store and see what he loves and pass it on to those who do

not know what to get him.

I know that my cousin's son, who is 25, but only able to communicate at the

level of about a 7 year old, has benefited the most in his life from his parents

teaching him by letting him have all the experiences of a person his age. If it

was hard they would help him, but that has made him very well rounded, and has

given him a great self esteem.

Your son is in there, make sure that when his speech does break free that it is

with a hardy " thank you for all that you have done for me " instead of " I wish I

had done that. " Your mommy alarms are all right and that is why you have posted

this. You know in your heart what the family members are doing is wrong. I

have experienced it myself. And I know that a lot of times it is unintentional.

Unfortunately for our family members, now that my daughter is talking and so

much fun, they want to interact, and she wants nothing to do with them. And I

don't make her. She loves the ones who loved her for who she was before she

found her voice.

You hang in there. I remember crying about that time in her life, wishing so

much I could just hear I love you mommy.

Now I hear it every day, along with songs, and yelling, and laughing, and how I

am annoying. (She is 5). It will come.

Wishing you words,

Meyer

[ ] how to handle halloween? holidays?

My 3 yo son really only has 1-2 words if that. My husband feels since he can't

talk that there is no reason for him to go trick or treating because he can even

mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas since

he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little voice.

I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to say

words). Unfortunatly, the NV hasn't worked miracles for him like some of your

likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

I think as long as he is old enough to understand trick or treating, he should

be able to go. You can say " trick or treat " for him, or just make a sign for him

to hold up at each door. If people even notice before turning to the next child,

the sign will be enough to stop them from asking.

As for your family, I'd be banned if I told you what I really thought... When

you talk to them before the holidays, tell them what he pointed to in the

catalog. But more importantly, mention that he's doing well in speech, but that

you/ therapist/ teacher/ etc feels it's so important for his speech that they

talk to him even if he can't answer. Then make sure you bring him around those

people and direct a conversation. If all else fails, make everyone a photo

ornament that says " not being able to talk is not the same as having nothing to

say " . Maybe they'll get the hint.

>

> My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because he

can even mimic the works trick or treat and can't even say thank you.

>

> This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas

since he can't tell us.

>

> I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

>

> I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

>

> Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

>

[Guest guest]

Oh my..read your post and remembered back to my in-laws refusal to believe

anything was wrong.  Such a hard time for me and my son.  When I knew they

were

coming to visit, i'd put a sign on the fridge that said " not being able to speak

is not the same as not having something to say " . I'd leave out my medical

binder  so they'd see how thick it is and hope they'd realize it wasn't in my

mind...there really was something wrong.  then came the day I stopped torturing

myself.  I told my husband that I didn't care what his family thought, the next

time we visited they'd better not all be after my son to say this or that.  I

calmly told them that he was working very hard at learning to speak and could

they please stop pressuring him. (I'd had a drink or 2!)

Halloween was just as much fun for him as any other child, we just taught him

sign for that occasion and people thought it was great that he could sign thank

you because most other kids never even said it, never mind sign it!

we also gave him the toys'r'us christmas gift guide to circle things he wanted

from santa...what fun that was! and really, getting gifts for 3 years olds

should be talked about with the parents because unless you want a pony or a drum

set it the house, why leave it up to a 3 year old?

I sympathize with you for what you are going through. Everyone needs to be on

the same page or butt out. Your son deserves to have fun and do things other

kids do and not be penalized for working so hard to do something we all take for

granted....talking.

hope all gets better

sandy

________________________________

From: wandre_k <wandre_k@...>

Sent: Mon, October 11, 2010 11:42:56 AM

Subject: [ ] how to handle halloween? holidays?

 

My 3 yo son really only has 1-2 words if that. My husband feels since he can't

talk that there is no reason for him to go trick or treating because he can even

mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas since

he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little voice.

I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to say

words). Unfortunatly, the NV hasn't worked miracles for him like some of your

likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

My favorite was her first speech therapist who said that she could talk, but was

choosing not to.

Wow I wanted to hit that woman! And I haven't hit a person in my life!

[ ] how to handle halloween? holidays?

My 3 yo son really only has 1-2 words if that. My husband feels since he can't

talk that there is no reason for him to go trick or treating because he can

even

mimic the works trick or treat and can't even say thank you.

This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas

since

he can't tell us.

I don't know what is in Joe's head. We haven't ever even heard his little

voice.

I don't know if he realizes what is going on.

I just cried all last night. He is making progress (he at least is trying to

say

words). Unfortunatly, the NV hasn't worked miracles for him like some of your

likes.

Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

[Guest guest]

You got some tremendous advice Wandre which I hope made you feel better! Having

a special needs child can put a lot of stress on a family, but what helps is

educating and raising awareness...and at times common sense too.

The Halloween topic for trick or treating was a happy topic to answer. The

question about your husband believing that if a child can't talk or say thank

you that there is " no point " in going trick or treating with your 3 year old.

And to read your family ignores him because he can't talk breaks MY heart. So

now that we got so much great advice for trick or treat -honestly I believe you

need to work on this other aspect because while it may hurt you, shock most of

us -it's something that your 3 year old is going to remember the rest of his

life if this continues. I will explain why I say this.

When we were interviewed for Inside Edition -one of the children was a teen now

in graduate school named whose family outside of her mother also ignored

her. spoke to us about how her grandfather in particular shunned her in

front of the other grandchildren, she talked about being teased and she said she

knew her family was " ashamed " of her...point is she brought up deep and very

personal memories from her childhood...in front of a room full of strangers with

Inside Edition cameras rolling as you'll see in the link below. They didn't air

that part -but it resonated in all of us when she said " They thought I was

mentally retarded because I couldn't talk and they were ashamed of me " as again

she repeated that a few times. It was clear that emotional scar was still very

much there years and years later. She went on and said that once she started

doing well in school and learning to talk her grandfather and other family

members tried to embrace her -but she said the only person that was there for

her all along was her mother...who by the way was there the day we filmed. Her

mom became a special ed teacher in NJ during all her work in helping her

daughter. I never shared this or the following stories I'm about the share

before...but honestly I didn't think that would happen today -I mean has

to be almost 30 now...we were filmed for Inside Edition about 10 years ago.

Back then they didn't know appropriate therapy for her apraxia -and she still as

you'll hear her on this video -has a flaccid sound to her voice. All the

stories I know in this area are of " kids " that are now mid twenties to mid

thirties today.

I was asked not to share which child this happened to as we were even thinking

of including this in The Late Talker book but the pain of this was so deep the

parents didn't want to share it happened to their son. But I can share it

without names. Back then a parent of a teen told me that she had to advocate

very hard to keep her son in the mainstream even from kindergarten. This child

was a true success story. Her son today is off at college and living a very

normal life- and his speech is better than 's but he is only in his 20s

now. When he was 13 years old he told his mother and she told me that one day

back when he was in kindergarten two teachers were talking right in front of him

(clearly not realizing he heard and understood every single word they were

saying) and the teacher said " I can't believe they stuck this child in my class.

He's brain dead! " This child like my son had both oral and verbal apraxia so

very little if any facial expressions. At 13 for whatever reason he told his

mother this story and said " At first I couldn't tell you but then when I was

able to tell you I never wanted to tell you because I knew you would be upset "

And one other story was a man who came to our group as an adult who grew up

apraxic. We don't talk about him anymore because unfortunately he ended up a

statistic -in jail, which is what happens when you have awareness of verbal

abuse even from those that are supposed to love you and develop a low self

esteem. I have the original somewhere and Dr. a Tallal uses his letter in

her classes at Rutgers to symbolize as the most powerful example of how

disabling a verbal disability can be without support from anyone...even family

-but needless to say in his own words which he wrote to us which we removed from

everywhere due to what the crime was. This is not an exact quote -but the

actual full letter goes into much worse " First the school gave up on me and then

my family gave up on me and I was teased by all the kids -but I always had my

brother, and I used to go watch him play football. But then he started to

ignore me when I came to watch him and just talk to his friends who would laugh

at me and I was all alone. I was teased at school every day and used to cry

every day " And I can tell you for a fact this young man was extremely bright -

got a job, car, and paid for his own speech therapy as an adult. Kmart by the

way hired him even when he couldn't talk!! I so wish I could share more about

him because it broke my heart when I found out he was sent to jail -because this

young man wrote a book because I said " You should write a book " and he self

published it -he was on the news in his state, the anchor loved him and he was

on the front page of the paper -and he represented the BEST example of why never

to refer to apraxia as " childhood apraxia of speech " because the first time he

called me on the phone searching for help I couldn't make out what he was saying

(which is why I asked him to write the letter and use Word and spell check etc)

but I kind of made out " I have developmental apraxia of speech " He was twenty

something at that time and I said to him " you just told me that you are twenty

something and that you have developmental apraxia of speech. Don't say you have

developmental anything as an adult or people are going to assume you are

mentally retarded " and he got SO angry at me and said in a very impaired voice

" I AM NOT RETARDED " and of course I said " I never said you were, but you are an

adult and you are using the word developmental for your diagnosis -just say you

have apraxia " And we became very close -I was SO proud of him -I had an entire

section on our site called " The one that rose above " ....and you know what hurt

him? His family gave up on him -that hurt him more than anything. All three of

the adults I know speak about moments from their childhood with the pain as if

it just happened yesterday. So if your husband or family assume your 3 year old

doesn't know what they are saying -they better be 100 percent sure he doesn't

because if not I know from what I have seen they not only can ruin their future

relationship with your son -but....your son. Don't let that happen.

These family members of your 3 year old have no idea that the success rate in

our group is incredible...and they are setting a stage for the future with a

child who has an impairment. If your child's self esteem remains high these

situations won't affect your child's success -but they can and from what I've

seen will affect your child's relationship with his other family members who

don't see him as an individual as you do. Be very careful of what you or anyone

says in front of a young child even if " assumed " to be " slow " because goodness

knows that in our society as your husband so strongly pointed out -ability to

speak is linked to ability to think and have feelings.

I'm sharing all this now and never have before -because again the above two

situations were in children that were at least a decade older than my son -and I

don't recall this coming up in recent times.

My nephew has a hearing and speech impairment. My son Tanner went to an

oral based preschool for the deaf with him even though Tanner had normal

hearing. I have worked with children and adults that were both deaf and blind.

And you know how you can show a deaf/blind/mute individual that you are happy

with them? You take their hand and put it to your face when you are smiling.

The people that work with these individuals through the Helen Keller schools

don't baby them -they let them fall -they let them do things for themselves

-they help them get jobs too. And it doesn't take rocket science to know what

most 3 year olds like -just watch them for a bit and see what they like to play

with.

Everyone has a right to a chance in life. I wish you could come to my house for

Halloween -and I'm sure we all wish that!

Oh and here is the Inside Edition video - Now you have more of the inside

edition when you see in front of all of us at the support group meeting.

I know it to this day brings tears to my eyes

Again walked away from this topic before -but kept reading it over and over and

over...and just felt like this was it -I was meant to use this as a reason to

finally share 3 stories that have always been behind the scenes. So when anyone

hears me go off about the stupid name childhood apraxia of speech or anything

-you know a bit more as to why.

And to end on a happy note as I know this topic was deep -I got a call from a

mom of an 18 year old over the weekend who had put her son on NV but didn't

expect it to work. She promised me she's going to share her son's update which

I will add here http://pursuitofresearch.org/testimonials.html We need to hear

more updates from the teens and adults because we know apraxia and autism -or

any of these conditions are not just " childhood " conditions.

=====

[Guest guest]

I had my husband read this because I don't think he understood either. Thank

you for sharing these stories, I had seen the inside edition before but this

time I cried hearing say she so glad she can help so many people. She

did and you just did too. Kate

>

> You got some tremendous advice Wandre which I hope made you feel better!

Having a special needs child can put a lot of stress on a family, but what helps

is educating and raising awareness...and at times common sense too.

>

> The Halloween topic for trick or treating was a happy topic to answer. The

question about your husband believing that if a child can't talk or say thank

you that there is " no point " in going trick or treating with your 3 year old.

And to read your family ignores him because he can't talk breaks MY heart. So

now that we got so much great advice for trick or treat -honestly I believe you

need to work on this other aspect because while it may hurt you, shock most of

us -it's something that your 3 year old is going to remember the rest of his

life if this continues. I will explain why I say this.

>

> When we were interviewed for Inside Edition -one of the children was a teen

now in graduate school named whose family outside of her mother also

ignored her. spoke to us about how her grandfather in particular shunned

her in front of the other grandchildren, she talked about being teased and she

said she knew her family was " ashamed " of her...point is she brought up deep and

very personal memories from her childhood...in front of a room full of strangers

with Inside Edition cameras rolling as you'll see in the link below. They

didn't air that part -but it resonated in all of us when she said " They thought

I was mentally retarded because I couldn't talk and they were ashamed of me " as

again she repeated that a few times. It was clear that emotional scar was still

very much there years and years later. She went on and said that once she

started doing well in school and learning to talk her grandfather and other

family members tried to embrace her -but she said the only person that was there

for her all along was her mother...who by the way was there the day we filmed.

Her mom became a special ed teacher in NJ during all her work in helping her

daughter. I never shared this or the following stories I'm about the share

before...but honestly I didn't think that would happen today -I mean has

to be almost 30 now...we were filmed for Inside Edition about 10 years ago.

Back then they didn't know appropriate therapy for her apraxia -and she still as

you'll hear her on this video -has a flaccid sound to her voice. All the

stories I know in this area are of " kids " that are now mid twenties to mid

thirties today.

>

> I was asked not to share which child this happened to as we were even thinking

of including this in The Late Talker book but the pain of this was so deep the

parents didn't want to share it happened to their son. But I can share it

without names. Back then a parent of a teen told me that she had to advocate

very hard to keep her son in the mainstream even from kindergarten. This child

was a true success story. Her son today is off at college and living a very

normal life- and his speech is better than 's but he is only in his 20s

now. When he was 13 years old he told his mother and she told me that one day

back when he was in kindergarten two teachers were talking right in front of him

(clearly not realizing he heard and understood every single word they were

saying) and the teacher said " I can't believe they stuck this child in my class.

He's brain dead! " This child like my son had both oral and verbal apraxia so

very little if any facial expressions. At 13 for whatever reason he told his

mother this story and said " At first I couldn't tell you but then when I was

able to tell you I never wanted to tell you because I knew you would be upset "

>

> And one other story was a man who came to our group as an adult who grew up

apraxic. We don't talk about him anymore because unfortunately he ended up a

statistic -in jail, which is what happens when you have awareness of verbal

abuse even from those that are supposed to love you and develop a low self

esteem. I have the original somewhere and Dr. a Tallal uses his letter in

her classes at Rutgers to symbolize as the most powerful example of how

disabling a verbal disability can be without support from anyone...even family

-but needless to say in his own words which he wrote to us which we removed from

everywhere due to what the crime was. This is not an exact quote -but the

actual full letter goes into much worse " First the school gave up on me and then

my family gave up on me and I was teased by all the kids -but I always had my

brother, and I used to go watch him play football. But then he started to

ignore me when I came to watch him and just talk to his friends who would laugh

at me and I was all alone. I was teased at school every day and used to cry

every day " And I can tell you for a fact this young man was extremely bright -

got a job, car, and paid for his own speech therapy as an adult. Kmart by the

way hired him even when he couldn't talk!! I so wish I could share more about

him because it broke my heart when I found out he was sent to jail -because this

young man wrote a book because I said " You should write a book " and he self

published it -he was on the news in his state, the anchor loved him and he was

on the front page of the paper -and he represented the BEST example of why never

to refer to apraxia as " childhood apraxia of speech " because the first time he

called me on the phone searching for help I couldn't make out what he was saying

(which is why I asked him to write the letter and use Word and spell check etc)

but I kind of made out " I have developmental apraxia of speech " He was twenty

something at that time and I said to him " you just told me that you are twenty

something and that you have developmental apraxia of speech. Don't say you have

developmental anything as an adult or people are going to assume you are

mentally retarded " and he got SO angry at me and said in a very impaired voice

" I AM NOT RETARDED " and of course I said " I never said you were, but you are an

adult and you are using the word developmental for your diagnosis -just say you

have apraxia " And we became very close -I was SO proud of him -I had an entire

section on our site called " The one that rose above " ....and you know what hurt

him? His family gave up on him -that hurt him more than anything. All three of

the adults I know speak about moments from their childhood with the pain as if

it just happened yesterday. So if your husband or family assume your 3 year old

doesn't know what they are saying -they better be 100 percent sure he doesn't

because if not I know from what I have seen they not only can ruin their future

relationship with your son -but....your son. Don't let that happen.

>

> These family members of your 3 year old have no idea that the success rate in

our group is incredible...and they are setting a stage for the future with a

child who has an impairment. If your child's self esteem remains high these

situations won't affect your child's success -but they can and from what I've

seen will affect your child's relationship with his other family members who

don't see him as an individual as you do. Be very careful of what you or anyone

says in front of a young child even if " assumed " to be " slow " because goodness

knows that in our society as your husband so strongly pointed out -ability to

speak is linked to ability to think and have feelings.

>

> I'm sharing all this now and never have before -because again the above two

situations were in children that were at least a decade older than my son -and I

don't recall this coming up in recent times.

>

> My nephew has a hearing and speech impairment. My son Tanner went to

an oral based preschool for the deaf with him even though Tanner had normal

hearing. I have worked with children and adults that were both deaf and blind.

And you know how you can show a deaf/blind/mute individual that you are happy

with them? You take their hand and put it to your face when you are smiling.

The people that work with these individuals through the Helen Keller schools

don't baby them -they let them fall -they let them do things for themselves

-they help them get jobs too. And it doesn't take rocket science to know what

most 3 year olds like -just watch them for a bit and see what they like to play

with.

>

> Everyone has a right to a chance in life. I wish you could come to my house

for Halloween -and I'm sure we all wish that!

>

> Oh and here is the Inside Edition video - Now you have more of the inside

edition when you see in front of all of us at the support group meeting.

I know it to this day brings tears to my eyes

>

>

> Again walked away from this topic before -but kept reading it over and over

and over...and just felt like this was it -I was meant to use this as a reason

to finally share 3 stories that have always been behind the scenes. So when

anyone hears me go off about the stupid name childhood apraxia of speech or

anything -you know a bit more as to why.

>

> And to end on a happy note as I know this topic was deep -I got a call from a

mom of an 18 year old over the weekend who had put her son on NV but didn't

expect it to work. She promised me she's going to share her son's update which

I will add here http://pursuitofresearch.org/testimonials.html We need to hear

more updates from the teens and adults because we know apraxia and autism -or

any of these conditions are not just " childhood " conditions.

>

> =====

>

[Guest guest]

Helo,

My son was 3 and he only had about 3 words. We taught him " BOO! " and he had a

blast trick or treating that year. He is 5 now and talks up a storm however he

still has articulation problems. I told him your story and he said " that is sad

mommy, all kids want to trick or treat! " Based on experience do not ever

underestimate your son! My son is fantastic at math and science and for some

reason he has a very visual mind. If he has a problem learning a sight word for

school I have him look at the word and say it 5 times..... then it seems to be

locked in his brain,,, motor planning at its best. do not miss out on these

years with your son just becuase he lacks the speech to interact, we interact in

many ways, a smile, laugh, a hug! look for the other ways he communicates and

build on it!!

As for anyone that ignores a child with any disability, well, they are not fit

to be around him. YOUR child comes first, YOUR child is priority and the rest of

those folks would be out of my childs life in a hearbeat... do not mess with

mama bear, start advocating now so that when school comes around you can stick

up for what he needs!

>

>

> >

> > My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because he

can even mimic the works trick or treat and can't even say thank you.

> >

> > This is becoming a recurring theme-most family members want to just ignore

Joe because he can't talk. Most say-i don't know what to get him for Christmas

since he can't tell us.

> >

> > I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

> >

> > I just cried all last night. He is making progress (he at least is trying

to say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

> >

> > Any advice? For any of you with older kids, what do they say about when

they couldn't talk-did they understand what was going on?

> >

>

[Guest guest]

Sometimes, it's hard for parents during holidays because they see what all the

" typical " kids are doing and are reminded of what their own child can't do. Your

husband might feel depressed and this is his way to avoid the holiday.

But just because a child is deaf, or blind or can't talk, doesn't mean he should

miss out on all the fun that other kids have. Take him out and have a good time.

Here are some links on learning how to trick or treat: http://bit.ly/akpDZB

Because he is 3, make sure you are aware of Halloween anxieties about scary

costumes. This is common for preschoolers who have trouble distinguishing

fantasy from reality. If that might be an issue you might want to stick to park

district Halloween activities or other daytime holiday events.

>

> My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because he

can even mimic the works trick or treat and can't even say thank you.

>

> This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas

since he can't tell us.

>

> I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

>

> I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

>

> Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

>

[Guest guest]

Have you been introducing sign language to your son? It is a great way for your

child to communicate expressively his thoughts, wants and desires while working

on his verbal speech. My daughter participated in all of the holiday

celebration, she definitely understood what was going on, even if she couldn't

say the words. We went trick n treating with a few kids in the neighborhood

alogn with her twin and I would say now " say thank you " and sign it and the

twins would sign thank you. A lot of the neighbors really enjoyed learning the

sign for " you're welcome " in response. For presents, definitely show the

flyer for toysrus that comes in the sunday papers, or go to the store and have

him point to what he likes when you ask him which is his favorite etc.

Lori

>

> My 3 yo son really only has 1-2 words if that. My husband feels since he

can't talk that there is no reason for him to go trick or treating because he

can even mimic the works trick or treat and can't even say thank you.

>

> This is becoming a recurring theme-most family members want to just ignore Joe

because he can't talk. Most say-i don't know what to get him for Christmas

since he can't tell us.

>

> I don't know what is in Joe's head. We haven't ever even heard his little

voice. I don't know if he realizes what is going on.

>

> I just cried all last night. He is making progress (he at least is trying to

say words). Unfortunatly, the NV hasn't worked miracles for him like some of

your likes.

>

> Any advice? For any of you with older kids, what do they say about when they

couldn't talk-did they understand what was going on?

>