, to continue on the conversation from the other day.

[Guest guest]

Ok, so my sons 7th birthday was yesterday, and after all the hoopla was over

last night I hear him say to my husband " I dont talk to anyone anymore " so

my husband not realizing (duh!)that he should continue the conversation

(men?!)changes the subject. So I picked the conversation up later,and I said

" hey

Rob, what do you mean you dont talk to anyone anymore? " He says " Well mommy

I just say thanks because it is too hard to talk " I said what do you mean do

you know what you want to say, but it just doesnt come out right, he said

" yes so I just say thanks " Well I almost fell off the chair because that is the

first time that he was actually able to express to me about his speech in

words, if thats not a child with apraxia i dont know what is......but now im

pissed off because I didnt think his ST at school was doing such a great job

before, and im currently preparing for my meeting at school, although he did

express this, so is she doing a good job? but I think overall he expressed this

to me because Im his mom and I would do anything for him and he knows it, and

he wants help! What do you do for an older kid??? , did you get any

suggestions after your email the other day?His self esteem is pretty intact,

but

then this, this can make it go in a whole other direction !!!This cannot

happen ! He also was able to express to me in words last week about what his

seizures feel like, which I must say was another milestone, I need to really

soup

up his IEP speech goals at the next meeting, so he can take his speech to

the next level, any suggestions or goals for an older child please share

because enough is enough, this child gets ST 4 days per week at school, and I

am

seeing minimal progress, and then all of a sudden BLAM! this happens. Im

preparing for my meeting and I am getting a private thorough eval, to back me

up,

but what will happen if he does ok on the eval, will I even have a leg to

stand on at the meeting...oh man, this really stinks....anyway sorry for

rambling...but any suggestions will be appreciated !!!

Michele

[Guest guest]

Hi Michele!

I had to smile when you asked if I got any suggestions on this -

because I so wish. I'm really swamped today and in a rush - so

please excuse any typos!

If he's talking to you about this now, he's old enough for you to

sit down with him and have a heart to heart. There is no guide book

I can let you know about yet for this, so I hope my suggestions can

help you to help him, and also to help you to appreciate that you've

reached this point!

I believe the heart to hearts keep the self esteem high, teach our

children how to deal with teasing and/or keep from being teased, and

most important teach them to accept themselves for who they are, as

they are. In his 9 years Tanner's been one of the boys with the

same amount of teasing as any other kid. Hardly ever.

The first heart to heart talk I ever had with Tanner was when he was

3 when we stopped the fish oils right after we started them. Why

did we stop? Because he was surging so much and it was one week of

testing by the public school, and a critical week for me to try to

secure him appropriate therapies. I describe that week (from you

know where) as the hardest thing I had to do for Tanner, and Glenn -

I had to hide the fish oils from him because he thought it was nuts

to stop Tanner. But he didn't know what went on in the schools at

that time (now too?) where " inclusive therapy " (group therapy) 15

minutes twice a week was the norm! (at his school anyway) It was

clear that Tanner " had it, and then knew he lost it " Zimet

CCC SLP who now works for EI in Georgia was Tanner's EI therapist at

this time and couldn't believe the difference. if you read

this- please let everyone know what you recall.

Michele stopping them for a week prior to testing did assure he

would not test well at all as an FYI. Besides so many still don't

believe or give credit to them " working " anyway -so why would they

care if you stopped them even if they knew?!

Here's the first heart to heart moment ever at 3:

Tanner had just come out of the bathtub and was at this point

wrapped up in his cute little robe with a towel over his head, and

when I said " OK we have to get dressed now " he pointed to his nose.

I had not a clue why but casually said " What your nose? " he shook

his head no and pointed to his nose again. " You got water up your

nose, you hit it on something? " Ooh daring -a double guess in

one. He stamped his foot no and again pointed to his nose. I said

trying to change the subject " OK well let's forget that for a second

and just get you dressed " For the first time ever, Tanner threw

himself on the ground and started to cry really hard while burrowing

his face into the carpet.

I laid down on the ground next to him and softly said to him while

he wasn't paying attention at first because he was crying (from

memory at this point so not exactly unless you can find this in the

archives which it's there somewhere)

" Tanner I know it's hard to learn to talk but everyone has to learn

to talk. " Tanner amazingly stopped crying hard and gradually as I

continued to speak looked at me as I spoke. That had never happened

before and I recall I was shocked. I went on " Me and Daddy and

Dakota and and everyone, we are all going to help you to

learn to talk. And I remember it used to make me cry too when my

Mommy didn't understand me when I was learning to talk. " (made that

up -I spoke non stop from as long as everyone recalls)

Then I said " just remember really, really hard what you want to say

up here (and touched his head) so that when you learn to talk you

can tell everyone. And we'll be there for you the entire time. We

are going to help you and you will learn to talk. It's going to be

OK Tanner it really is. " And this is the part I still don't believe

happened. I then said " OK? " and Tanner nodded his head in

agreement. At 3 I had a " conversation " with him that was deep

beyond his years. That was one of the first. From then on I looked

at moments of breakdown as moments of breakthrough.

The next big one was prior to starting kindergarten just before his

6th birthday. I knew he was going from the amazing out of district

placement Summit Speech School for the Hearing Impaired (yes it was

worth it in the long run to not give Tanner fish oils for that one

week but I swore I'd never do that to him again!)

This heart to heart was not due to frustration on his part, but to

prepare him. I said to him (and this is also word for word in the

archives) " Tanner when you were a little baby you had very high

fevers that gave you a boo boo here " and I touched his

head. " That's the reason it's been a bit harder for you to learn to

talk. But Tanner you are amazing! Most of us talk using a small

amount of our brain, but Tanner somehow you figured out another

pathway to learn to talk and nobody really knows how you did it.

You actually use more of your brain when you talk then the average

person which is amazing Tanner! But sometimes people that only use

a small amount of their brain will hear the way you talk, and may

say something that's not nice about you. But that's because they

only use a teeny bit of their brain so you have to feel sorry for

them. " Then I said in mock serious " But Tanner, just because you

use more of your brain than most people don't go thinking you are

better than anybody else! " Tanner put his head down so I couldn't

see him smile but I could and I mock acted upset and said " Tanner! "

Then we both hugged.

The one time Tanner got teased I said to him " People will say mean

things when they don't like themselves or when they are having a bad

day. Like for example perhaps their dog just died and they are in a

bad mood because of that. They may say something mean to you but

that's because they are sad. So don't be upset with them, feel

sorry for them because maybe their dog just died. "

During the heart to heart talks you can bring up your own " memories "

of similar situations to relate. And there are other ways to help

too. Acting!

Help to get other rouge phrases in his motor memory by acting them

out. Help him by practicing with him and teach him how to practice

on his own. For example when nobody but the two of you are around

pretend practice opening presents. Let him know that most people

don't say much when they open a present other than " thank you "

or " ooooooh " or at most " wow just what I wanted " Figure out rouge

expressions for that situation.

I have in the archives how Tanner used to practice expressions in

the mirror over and over when he thought nobody was around. " You

want to play? Want to play? " You...want to play? " You WANT TO

play? " saying the same thing over and over. He'd also practice

facial expressions in the mirror. Dolan who is working on her

masters in Early Childhood Special Head at the University of Florida

grew up with apraxia. I met her at a book signing for The Late

Talker, and she told me she to this day practices what she is going

to say in new situations and tries to think ahead what will come

up. Have to tell you that it's hard to know is apraxic today -

but her Mother, Father, and Grandmother who were all there with

backed up everything. said she only breaks down if she " goes

off track " and only lets that happen with close family and friends.

Mustafa used to act out situations with Khalid to help get him

prepared. will fill in more on this! The CHERAB Foundation

was invited all expenses paid, and I've chosen her son Khalid who is

now in college and one of our greatest success stories as a group to

attend and perhaps speak on behalf of the CHERAB Foundation at an

International Conference sponsored by a major US magazine. (yes you

read that correctly!)

An apraxic child can grow up to be anything or do anything...even

acting or public speaking. And through CHERAB I know that for a

fact! If you want your son to speak with Tanner let me know.

Tanner's talked to a few other kids (and parents and professionals)

already and loves to help when he can.

=====

[Guest guest]

, this post really touched me. Amber will be 5 in July, but

unlike Tanner she not only has apraxia but she is also globally

developmentally delayed (she did just score in the mild MR range on

her recent IQ test but I am trying not to take that one to heart

since her motor planning issues are so severe). But, I never

considered having a heart to heart with her at such a young age (she

is developmentally more like a 2 1/2 to a 3 year old level). I

honestly don't know if she will understand but I will definitely open

the lines of communication up now so that if/when she is able to

truly understand me I can hopefully offer her some words of

encouragement and let her know it will be ok. Obviously, we all show

her everyday how we are working hard to help her but we never

actually talk about it with her.

Tina and Amber