Re: Questions about Proefa

[Guest guest]

Becky,

What you have described was my son Randy at 2 years everything was da

everything had a d sound chronic ear infections and upper respirtory not

enough for hospital but enough to not eat and not be himself very active high

intelligence school is worried that if he gets much more intelligent he will

lack even further behind bbecause of speech. Where do i begin it was like

readya bout randy We are on our 5th set of pe tubes and had tonsils and

adnoids removed at 3 years when they evaluted him his speech was on a 1 year

9 month level we started a preschool program at our county mrdd summer speech

and speecha t school at 3 years i heard mama for the first time god how

wonderful those words were he has made some improvement with just sppech he

is trying to say sentences but can only pick out maybe 1 or 2 wqords

understandable as randys ear problems continue and now with new dx coming

into play speech is getting worse again buyt there has been improvement he

also only ways 38 pounds and that is a high

I started him on Flax seed oil because didnt have the money to spend on

proefa havent seen much of anything have nioticed some new sounds but about

all and going to try proefa as soona s money comes available also gnc has a

brand that is comparable to proefa

believe the days of wondering if he'll ever talk normal are always there

randy will be five in sept and is only on maybe a 2 yr 4 month level at this

time but is making improvement Keep up the faith let me know you're results

with proefa

Amy Mother of Randy 4 speech apraxia reflux cured allergies chronic ear

infections auto immune defiency

Henges6@...

[Guest guest]

Betsy -

I can only tell you my experience - I've learned from reading and

listening that apraxia affects children at different levels. I'm one

of the lucky ones in that Zach actually talks and has since he was

2.5 or so. When he was 2.5 tho, he had about 10 words - most of

which were approximations or like " moo " for cow or " bo " for bread.

On the other hand, he would say " bo " for bread to eat and to

hear " shornin' bread " a song he loved. I knew he had some complex

thoughts, like your son.

He got frustrated alot and would yell. I started offering him

choices by pointing to one hand or the other and letting him 'answer'

that way. I felt like there was a wall to get over or though or

around... I know that the common belief is not to discuss the

child's speech issue with them when they're young, but I did. I told

him (because I knew he could understand) that he would be able to

talk soon. To tell me what he wanted. Where he wanted to go. He

just sort of looked at me, thinking about it. I told him he was

going to be big soon, drive a car, ride a bike, talk, read books by

himself.... I can't say it was a magic charm, but it was the

difference bw not trying and trying. He used to look at me when I

asked him to repeat something like, " you idiot. I don't talk,

remember? " All the sudden he started trying - talking a bit, adding

words. Therapy (with a good therapist) refined things but Z took the

initiative.

So, I don't know what to say about maintaining a clear level of hope

without over pressuring yourself and your son. There is hope. As

you know, I've just started Zach on the ProEFA - it's made a

difference. Whether or not it's a wonderpill remains to be seen.

Maybe it would be helpful if you went to a group meeting and could

talk to other parents and see other kids. I've never been (it would

be hard for me to do) but I think it might create a broader picture

for you.

One last story that I keep in my head. I used to sing " twinkle

twinkle " to Z when he was little - less than 2 - and end it

with " mommy loves you just the way you are " . I hadn't sung it to him

in months - MONTHS - and we were playing tent in my bed. I started

to sing it and he was finishing the lines for me. When we got to the

end of the song, he finished it with my words. I cried. It was one

of those poignant moments that only come along a few times in your

life. I realized that he HAD been listening even when he looked at

me and didn't respond. Even when he didn't even look at me. I feel

sure there is a moment like this for you.

Hope this helped. Email me when you need to talk!

Marina

> Hi, I had some questions re: proefa in situations where a child is

> pre-verbal. I'm basically trying to manage my expectations.

Wiley, when

> trying to imitate a word will invariably produce da or ba. His

only true

> words are mama, dada, and bye bye, which sounds between a ba ba

and bye

> bye, not even a true i sound. His no is " doo " and he can

say " yeah " but a

> lot of the time it comes out " deah " Every so often (like every 2

months)

> he'll say bubble, but outside of that it is bah-bah. All done is

aw da.

> And as a plea he says something like " i do " At times it is

contextually

> appropriate, at other times not.

> He is 2 1/2. He is receptively normal and scattered higher. He

just

> initiated an emotional conversation about how his Barney doll has

a

> g-button and the one on TV does not and how this made him want to

get rid of

> B's g-button and then he tugged at his own trying to rid himself of

one,

> too. I explained that Barney just covers his with purple crayon on

tv so

> you can't see it but really he has one just like my son's doll -

this

> quieted him and he gathered barney back into his arms and went back

to the

> program. So I know he is thinking pretty deeply about differences

at this

> point. He is constantly sick. 2 weeks well then 2-3 weeks sick

with sinus

> infections / colds /ear infections and the like. Not sick enough

to go off

> to the hospital, but sick enough to stop eating and become very

> distractible, moody, and in large part, sleepless.

> What kills me is how SLOW this is. Even the eating piece is

improving, but

> the speech is such a SNAIL. I don't think it's going to just KICK

in one

> day and he'll be talking - he is sublimely social and expressive

otherwise.

> He wants to talk.

> So I find this listserv and there's just all this super

enthusiastic

> information about ProEFA and I'm wondering if it's just this odd

group

> created by Nordic Naturals to market their fatty acid supplements -

but I

> know that's untrue and there are just too many parents writing in.

So I buy

> it, and stupidly, stupidly somewhere inside me I think I'm going to

say at

> the week's end, " oh! he is saying words!!! " when honestly I don't

see how

> that is possible.

> Does anyone have a child similar to mine who took off with the

supplements

> and does anyone have a child similar to mine who hasn't? I know

fatty acid

> chains were looked at when my son was hospitalized a year ago and

everything

> was normal. Does it help when there isn't even a deficiency?

> I just don't want to get all hopeful. I really don't because it's

hard

> enough. I hate that I underestimate my own son's intelligence on a

daily

> basis without even realizing it, that I probably don't talk as much

with him

> as I would if he was speaking more, ... I dunno. I love him - I

want to

> unequivocably accept him and not be disappointed in him because a

fish oil

> doesn't affect him either way.

> Any experience with this type of situation out there to share

would be

> greatly appreciated.

> Sorry so long winded.

> Thank you,

> Betsy

>

>

>

> >From: " roddyt001 " <roddyt001@h...>

> >Reply- @y...

> > @y...

> >Subject: [ ] Hawaii

> >Date: Tue, 07 May 2002 01:00:13 -0000

> >

> >Anybody from Hawaii here?

> >

> >Traci, Mom to Kennedy 2 GDD, Apraxia, SID

[Guest guest]

--- In @y..., " Burt " His only true

> words are mama, dada, and bye bye, which sounds between a ba ba

and bye

> bye, not even a true i sound. His no is " doo " and he can

say " yeah " but a

> lot of the time it comes out " deah " Every so often (like every 2

months)

> he'll say bubble, but outside of that it is bah-bah> He is 2 1/2.

He is receptively normal and scattered higher

I know exactly how you feel. My son Brady is very similar in a couple

of ways. He's 2.5 and only says " bye bye " consistently. Every so

often he'll say " no " , " pop- when he's popping bubbles " , " ba (ball) " ,

and just very recently told me " ny ny (nite nite) " . In the past he

said " tane (thanks), " topit (stop it) " , and " dada " but those words

just sort of faded away after a couple of months. Anything that he

does day though has to be completely on his own terms, if you try to

initiate a word in ANY WAY he will completely shut down and turn

away. He babbles to us, family, and the SLP frequently and sometimes

I wonder if he is saying words but they aren't understandable. He

does get frustrated but it's not very often, he usually keeps himself

happy with physical things/games. He is a very happy/silly little

boy. My husband and I have sort of raised him so that there aren't

many rules, bounderies, and pretty much all communication is done

with silly voices, squealing, and tickling! Brady loves it, he cracks

up all the time. Unfortunatly we're paying for it because he is SO

stubborn, he only does what we say about 50% of the time because the

other 50% he knows he just doesnt' have to and won't if he doesn't

want to. We're working on that. Brady is in speech without much

progress except i think he's now sitting for a whole 2 minutes, all

he wants to do is wrestle with her and run around. He's been assessed

and both verbal apraxia and PDD have been mentioned but from what

I've been told they no longer think it's either of the two, I don't

know why. We really don't have a dx, just that Brady is expressive

delayed and possibly a little receptive delayed (he can follow most

one-step commands, sometimes with visual cues, but cannot follow any

complex instructions) although I wonder if I underestimate him

because of his lack of language. He's advanced motor and fine motor

wise, has excellent balance, walked at 9 months and has been running

ever since.lol. By the way, back to my point, I just ordered the

ProEFA too and gave him his first dose today. I am VERY worried that

I'll get my hopes up! I would LOVE for Brady to make the progress

that i've read in some stories here. If he makes any progress at all

i'll be happy though, but i'll admit if I see no change I'll be

disappointed- i think thats natural. But we know we won't love our

boys any less so in the end it doesn't matter. I hope to see you post

about your sons progress and I'll do the same. Just wanted to let you

know that you are NOT ALONE, I feel the same way. GOOD LUCK!!!!!!

Donna Mommy to Brady 29 months

and Connor 6 weeks

[Guest guest]

Hi Marina!

Thank you so much for sharing that beautiful story!!! " mommy loves

you just the way you are " -I can't imagine how beautiful a moment

that was to finally hear those words from your apraxic son -words

that you had always said to him!

I don't know if the thought is not to talk to your child about their

inability/difficulty to talk -you do at times need to diffuse the

frustration. I kind of stepped around the frustration challenges

with both of my children by explaining that everybody learns to

talk. Dakota was more of a typical late talker though, even though

he didn't start to really talk until three -once he started, it just

came in pretty much all at once. For Tanner, I didn't

discuss his inability to speak with him the way I would with a

doctor, teacher, SLP, or any of you -I simply said (to him at 2, 3 -

and then not so much at 4 because by then he was starting to talk

more) " Everyone learns to talk and I know it's frustrating when you

are still learning " " I remember when I was learning to talk and my

mommy didn't understand me and sometimes I would just get so upset

and frustrated I wanted to cry " (Tanner would shake his head yes in

agreement!) Or " Just remember really hard what you want to say to me

right now that I can't figure out so that when you learn to talk you

can tell me then! OK?! That's what I did! " And I would tap on his

forehead while saying " remember really hard " . And I would just say it

all matter of fact.

When Daddy didn't figure out what Tanner was trying to say -typically

Dakota or I could. Tanner would turn to us to see if we knew what he

was trying to tell us, if we couldn't figure it out either -Tanner

would break down. I remember once Tanner at right before three -

during the one week we took him off Efalex and he regressed -ran to

his room crying when his brother Dakota and I couldn't understand

what he wanted either. It was one of those Brady Bunch moments where

he ran to his room, threw himself on his bed with his head in his

pillow and started crying in big sobs. Even though he broke down -it

typically had been more the stamping feet frustrated kind of

breakdowns -he had never cried like this before, and it was

especially difficult to watch because I felt so guilty since I was

keeping him off Efalex which helped him -because he was going through

the public school testing and I was afraid we wouldn't be able to get

the appropriate therapy for him since he was having such a dramatic

burst on the Efalex.

I sat down on Tanner's bed and just started to talk to him while he

was still crying -empathizing with his frustration -saying everything

I wrote above -including to remember it really hard so that when he

learns to talk... and he stopped crying and turned and looked at me.

Really!!! So I'll never forget how I went on. I then said the same

things you did, " One day when you get big you are going to learn to

talk, and learn to drive a car, and learn to go to school, and you

can do whatever you want because you are such an amazing and

intelligent child " When I added though -And lots of times I talked

in a sing song voice with lots of facial expressions -very theatrical

and animated (maybe because I used to work in animation?) " Just

think -when you learn to talk you will be able to sing all the songs

you love, and say all the words. Won't that be great?!! " Tanner

actually started to smile -like he was picturing it or something -it

was just amazing. So I said " So stop crying now and lets play -I

know it's hard at times but that's why you go to speech therapy -they

are teaching you to talk -and we are all going to help you too! "

Zimet CCC SLP, who is now in Georgia (and still in this group

too!) remembers this because she was Tanner's amazing Early

Intervention therapist and she too saw the regression and how he was

a " different " child. It was the most horrible week ever and I

promised Tanner I would never do that to him again. Tanner's story

is online http://www.drstordy.com/stories.html and in the LCP

Solution book.

And Betsey, you are too funny!! -you should read my old emails to

another list about Efalex -I was reading them the other day and you

would have thought I worked for Efamol then -the company from the UK

that Dr. Stordy was behind that used to manufacture Efalex. I used

to be a cheerleader in HS -and I still am for anything that so

greatly helped my son. Efalex is similar to ProEFA as it's an Omega

3 and Omega 6 formula -however with a not significant amount of EPA

in comparison to ProEFA -and Primrose instead of Borage Oil. Every

formula is different -and just because one doesn't work for a child

doesn't mean another won't. Many people had their child on formula's

other than ProEFA like Flax seed oil, cod liver oil, and not as

often -but even Efalex for months or years with no changes. I know

that Omega 3 alone does work for a few...difference is that the

ProEFA " formula " -not the name brand -works the best so

far for almost all. For whatever reason -the ProEFA formula works the best

overall

at the lowest dosage -one to two capsules a day. Efalex comes in

second -and I've heard great things about Coromega. I don't hear as

much about EyeQ perhaps because it's newer and not yet available all

over the world -but from what I've heard from the one or two that

posted about it here it's a great formula too.

Also -for those of you that give your child ProEFA as well as cod

liver oil -or Coromega -you are again changing the formula and

amounts of DHA and EPA (Omega 3) in relationship to the GLA (Omega

6) -which may be a good or not so good thing to do. It depends on if

you see a good change or no change.

And Betsey -it doesn't happen often that children go into saying

sentences within a week -those of us that know parents in support

groups typically will know one or two who have that happen with their

child -or you will occasionally read about it in this online group or

others. It takes most of the children a month or so to go to

sentences from nonverbal. Most children that are supplemented for

the first time with the correct formula (again -that's important!!)

go into spontaneous words in a week -or two. If your child is

completely nonverbal however -and you have had them in private

therapy for months with no change -or only the ability to say simple

sounds -saying a word within a week is reason enough to cheer about

it for me!!

=====

[Guest guest]

Donna,

Thanks for responding to my too negative email - ridiculous of me to start

whining, but the whole waiting game can make me a little childish at times.

I love that you wrote Brady is a silly little boy. I wonder sometimes if

they capitalize on funny behavior when words are lacking because Wiley is

just a riot. He has just the most charming disposition. Even when he was

literally starving to death in the hospital last year he was totally

magnetic and charismatic. I used to call him Prozac Baby. He's 2 so he

has his tantrums now, but most of the time he has my husband and me cracking

up and sighing about what a kidder he is. Like during his developmental

eval he turned all the toys into a hat or kissed each puzzle piece before

putting it in it's place or turned all the blocks into drinks and so on. He

is supremely goofy and like your son, very independent on his decisions to

either obey or not. I too can be inconsistent about my response to his

disobedience, usually because I don't care a whole lot about whether he puts

his pants in the hamper or not. The one place where I've gotten very

serious with him is with hitting - mostly he just beats me up for attention

and so on, but he's done the same inside of playgroups to a lesser degree

which is somewhat mortifying. So I guess it's about choosing your battles.

I wish there were 5 or 6 Wileys and Bradys living on my street. What a

laugh that would be.

Thanks for your response,

Betsy

[Guest guest]

Hi, Amy.

Wow, a lot of similarities. Wiley has suffered from reflux, allergies,

chronic uris, ear infections, and what appears to be apraxia too. He had a

nissen fundo a year ago, had some problems with aspiration until the

esophagitis cleared up this last winter. He also suffers from a sensory

based feeding disorder (probably a fall-out of the reflux) and is still

getting some of his calories overnight through a g-tube. The ProEFA is

pricey. I got a couple of bottles from Nordic Naturals and it was about 50

dollars with shipping costs. Visa!! Wiley was just blood tested for immune

deficiency - an immunoglobulin test?? And it came back normal. So I'm

guessing the residual reflux is making it hard for him to recover from run

of the mill colds. Every cold goes to infection. I think maybe he has made

it through one cold in his entire life without antibiotics. The allergies

could play a role too. I was thinking something had to be wrong for him to

be so sick so often, but apparently his immune system is fine so it's got

me. Who knows. 38 pounds at 5 is so small! A friend of mine has a 5 year

old at 38 pounds and he really is so slim - adorable, though. Do you think

it's the illness? Without the g-tube, Wiley would be practically

non-existent. He eats maybe 50 calories a day when he is sick. At 19-20

months of age he weighed maybe 16 pounds if that. He was too weak to walk.

So the nutrition that the augmentative feeds delivered made a huge

difference in his gross motor skills etc.

Yikes - he's up and hollering - thanks so much for the response - I'll

definitely keep updating on Wiley's proefa experience.

Betsy

[Guest guest]

My 2.0 yo daughter has global developmental delays, apraxia, Sensory

integration dysfunction, delayed myelination, and constitutional

growth delay/failure.

My husband and I had the same feelings as you. My husband's words

were " there is no magic pill! " After much research and questioning

parents and doctors, I came to the conclusion that ProEFA could not

hurt my daughter in any way. So, we tried it. (we are on day 10)

After 2 days she started moving her mouth in funny positions and

making funny sounds. (she had always spoke/babbled w/ her mouth in

the smile position) We have a thing around our house where we

say " who wants _______? " My son (4 yo who never stops talking)

always raises his hand and says " me " . The other night (day 7 of Pro

EFA) my husband yelled from the kitchen " who wants a sundae " . Before

anyone said anything my little Kennedy raised her hand and

yelled " meeeee! " My husband thought it was my son and I said no it

was Kennedy! Everyone was jumping up and down! On day 8 she started

answering me w/ a shake of the head (yes or no). Even though she is

not saying yes or no, she is at least answering me. Before ProEFA I

would have to ask her a question and then ask her to nod yes or no.

Sometimes she would and sometimes she would just walk off. Yesterday

she said Ho Ho Ho with her mouth in the correct position. Before she

would only do it in the smile position and it would sound like Ha Ha

Ha.

We did not tell anyone about the ProEFA to see if anyone noticed the

same things we were. Her therapists are writing away on her charts

and making so many comments " boy, she's really taking off...she is

having a developmental spurt...etc. " Her speech therapist rarely

writes anything down while we are there and at the last session I

swear she didn't put her pen down. She just kept writing and

writing. We still haven't mentioned the ProEFA and I don't plan on

it for now.

My daughter also has delayed myelination. While researching ProEFA,

I came across an article that said DHA was necessary for myelin

production. ProEFA contains DHA, so here again I was hoping this was

the " magic pill " for my daughter.

Maybe just coincedence? I don't know, but I can tell you one thing -

we are NOT stopping those pills now!

Traci, mom to Kennedy 2.0 yo

[Guest guest]

Betsy wrote:

" Hi, I had some questions re: proefa in situations where a child is

pre-verbal. I'm basically trying to manage my expectations. Wiley, when

trying to imitate a word will invariably produce da or ba. His only true

words are mama, dada, and bye bye, which sounds between a ba ba and bye

bye, not even a true i sound. "

My son just turned three years on the 30th. He has never said any word of any

kind, his only noises have been an occasionally eeee sound and ah. He has been

diagnosed Oral/limb apraxia, SID and hypotonia. He is in ST 3 times a week and

OT 1 time a week. He is been in OT for about 16 months and his present ST about

9 months the ST before that was very ineffective so I really don't count that.

We started our son on Efalex in early Feb. and within about a week the OT said

he was doing so much better, attention to task better, more assertive, better

with crayons and numerous other tasks. I told her about the Efalex, she was

impressed. I was thinking anytime he would start making sounds. It did not

happen just his usual noises as above. About 2 weeks ago I ordered ProEFA, not

from Nordic Naturals, but one with the same name. I ordered this because I read

so much on the listserv RE: changes with ProEFA. I got it and he has been taking

two capsules a day for about 10 days. He is imitating the " I " sound, he is

using what his therapist and I call a normal voice now and is imitating changes

in pitch. He said " Uh huh " and has imitated it numerous times in the last two

days, he is attempting to make an " e " sound in what I call his normal voice. I

am beyond excited. I do not know if it is the ProEFA, his age or he had his

tongue clipped about a month ago but something is working and I am thrilled. He

is not talking YET but I have faith it is going to happen. This is a slow

process and I have accepted that but things are going great.

Good Luck.

Daphne

Mom to Spencer 5 yrs (epilepsy but " normal " development); Zach 3 yrs SID,

hypotonia, oral/limb apraxia; Noah 5.5months babbling.

[Guest guest]

Dear Barbara,

Thanks so much for the mail. I will continue with the ProEFA definitely and

see how things turn out. I think it will help too that he is starting

preschool next fall and will get speech services 4 times a week, plus his 2

time a week therapy.

I did think the immediate results stories were a little unrealistic for my

son.

I talk really fast, too. People whose speech is just fine are always

telling me to slow down. Poor Wiley!

Thanks so much for the response,

Betsy

[Guest guest]

Thanks so much, Traci, for sharing your story. It certainly makes me feel

good about giving Wiley the supplements. As I wrote to , even if he can

put some consonants together with some vowels I will be thrilled. A " me "

would literally be phenomenal.

Go, Kennedy!!

Betsy

>From: " roddyt001 " <roddyt001@...>

>Reply-

>

>Subject: [ ] Re: Questions about Proefa

>Date: Thu, 09 May 2002 17:06:15 -0000

>

>My 2.0 yo daughter has global developmental delays, apraxia, Sensory

>integration dysfunction, delayed myelination, and constitutional

>growth delay/failure.

>

>My husband and I had the same feelings as you. My husband's words

>were " there is no magic pill! " After much research and questioning

>parents and doctors, I came to the conclusion that ProEFA could not

>hurt my daughter in any way. So, we tried it. (we are on day 10)

>After 2 days she started moving her mouth in funny positions and

>making funny sounds. (she had always spoke/babbled w/ her mouth in

>the smile position) We have a thing around our house where we

>say " who wants _______? " My son (4 yo who never stops talking)

>always raises his hand and says " me " . The other night (day 7 of Pro

>EFA) my husband yelled from the kitchen " who wants a sundae " . Before

>anyone said anything my little Kennedy raised her hand and

>yelled " meeeee! " My husband thought it was my son and I said no it

>was Kennedy! Everyone was jumping up and down! On day 8 she started

>answering me w/ a shake of the head (yes or no). Even though she is

>not saying yes or no, she is at least answering me. Before ProEFA I

>would have to ask her a question and then ask her to nod yes or no.

>Sometimes she would and sometimes she would just walk off. Yesterday

>she said Ho Ho Ho with her mouth in the correct position. Before she

>would only do it in the smile position and it would sound like Ha Ha

>Ha.

>

>We did not tell anyone about the ProEFA to see if anyone noticed the

>same things we were. Her therapists are writing away on her charts

>and making so many comments " boy, she's really taking off...she is

>having a developmental spurt...etc. " Her speech therapist rarely

>writes anything down while we are there and at the last session I

>swear she didn't put her pen down. She just kept writing and

>writing. We still haven't mentioned the ProEFA and I don't plan on

>it for now.

>

>My daughter also has delayed myelination. While researching ProEFA,

>I came across an article that said DHA was necessary for myelin

>production. ProEFA contains DHA, so here again I was hoping this was

>the " magic pill " for my daughter.

>

>Maybe just coincedence? I don't know, but I can tell you one thing -

>we are NOT stopping those pills now!

>

>Traci, mom to Kennedy 2.0 yo

>

>

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

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[Guest guest]

Marina,

That really is wonderful that your son is communicating with you so much

now. I am so happy the ProEFA is making such a difference for you and he!!

Thanks too for sharing his history with speech with me.

I'm more worried about the things Wiley is overhearing that have nothing to

do with love and flowers - I find myself reminding my husband often that

Wiley does understand what occasionally slips out - although even a !!**%%#

would probably excite me at this point. I'd have him tell Grandma over the

phone and everything.

That's great advice about talking to him directly about what's going on and

putting a positive spin on it. Thanks so much for the insight.

Hope things keep progressing so well on your end! I'll write in any changes

I see with Wiley -

Thanks,

Betsy

>From: " marina3029 " <philipmary@...>

>Reply-

>

>Subject: [ ] Re: Questions about Proefa

>Date: Thu, 09 May 2002 12:08:29 -0000

>

>Betsy -

>

>I can only tell you my experience - I've learned from reading and

>listening that apraxia affects children at different levels. I'm one

>of the lucky ones in that Zach actually talks and has since he was

>2.5 or so. When he was 2.5 tho, he had about 10 words - most of

>which were approximations or like " moo " for cow or " bo " for bread.

>On the other hand, he would say " bo " for bread to eat and to

>hear " shornin' bread " a song he loved. I knew he had some complex

>thoughts, like your son.

>

>He got frustrated alot and would yell. I started offering him

>choices by pointing to one hand or the other and letting him 'answer'

>that way. I felt like there was a wall to get over or though or

>around... I know that the common belief is not to discuss the

>child's speech issue with them when they're young, but I did. I told

>him (because I knew he could understand) that he would be able to

>talk soon. To tell me what he wanted. Where he wanted to go. He

>just sort of looked at me, thinking about it. I told him he was

>going to be big soon, drive a car, ride a bike, talk, read books by

>himself.... I can't say it was a magic charm, but it was the

>difference bw not trying and trying. He used to look at me when I

>asked him to repeat something like, " you idiot. I don't talk,

>remember? " All the sudden he started trying - talking a bit, adding

>words. Therapy (with a good therapist) refined things but Z took the

>initiative.

>

>So, I don't know what to say about maintaining a clear level of hope

>without over pressuring yourself and your son. There is hope. As

>you know, I've just started Zach on the ProEFA - it's made a

>difference. Whether or not it's a wonderpill remains to be seen.

>Maybe it would be helpful if you went to a group meeting and could

>talk to other parents and see other kids. I've never been (it would

>be hard for me to do) but I think it might create a broader picture

>for you.

>

>One last story that I keep in my head. I used to sing " twinkle

>twinkle " to Z when he was little - less than 2 - and end it

>with " mommy loves you just the way you are " . I hadn't sung it to him

>in months - MONTHS - and we were playing tent in my bed. I started

>to sing it and he was finishing the lines for me. When we got to the

>end of the song, he finished it with my words. I cried. It was one

>of those poignant moments that only come along a few times in your

>life. I realized that he HAD been listening even when he looked at

>me and didn't respond. Even when he didn't even look at me. I feel

>sure there is a moment like this for you.

>

>Hope this helped. Email me when you need to talk!

>

>Marina