Re: wondering a few things

[Guest guest]

As for the speech therapist, I speak from hard learned experience when I say

follow your gut instinct and either get another therapist or do it yourself

until your regular therapist returns from maternity leave. A mother has a

special connection with her child and if you're feeling this way you should

follow your instincts. Just last week I made that agonizing decision to switch

therapist, so I know the doubts, questions, guilt, etc... you might be feeling.

I had similar experiences and in addition, my 33 month old son cried so

hysterically at some points during the therapy I could barely stand it. He

would want to come to me for a hug or comfort and she'd say the same things

about doing therapy without me in the room if he didn't stop, etc... I was not

comfortable leaving him alone with her. He was not being motivated to talk but

rather forced to talk. It was a negative and emotionally draining experience

and I knew for six weeks leading up to switching that a change needed to be

made. I had doubts and concerns and plus, I wasn't really sure how a therapy

session should go. I did some research on the internet and from networking with

other parents and the more I found out the more assured I was that I was making

the right decision. I know our therapist thought the same things about me- I

was contributing in some way... I was too permissive, over-protective, enabling,

complacent... one mother I met helped me see that my son (at the tender age of

33 months and after only 5 months of therapy) was getting burnt out and had alot

of anxiety in any therapy-type context. Therapy should be fun and motivational

and your child should feel close and safe with their therapist. Good luck with

your decision.

[ ] wondering a few things

It's been a while since I posted. I am wondering a few things.

1. Has anyone has noticed improved surges with a break from ProEFA or

Carnaware. After reading some growth hormone studies I began trying a

regimen of three weeks on and then 3 days off. On day 4 off I typically

notice a little more clumsiness (little enough that I wondered the first

time if it was real). By the second day back on, she's back to where she was

and then for the next week she makes bigger gains, then slow gains, then

plateau for the last week. I've done this pattern 4 times now and see the

same thing every time. She's 21 months has about 15 good words and many

approximations. She can make all the sounds except b, p, m. She still won't

attempt single syllable words.

2. The speech therapist is really annoyed that my 21 month old doesn't

ignore me during the speech sessions. She has her in a chair, so that she

doesn't walk away. We've seen her for 1 month (our regular is on maternity

leave and is really excellent). She now wants to take her alone, so that she

doesn't have to compete with me. is a very huggy child and will

complete a task, come over and hug me and then go back to work. In

development lingo, we call this touchpoints. It's normal and healthy. It

irritates the fire out of the therapist. Today, when she asked if she

was ready to work, I repeated " work " and after showing her the sign, helped

her move her hands for the same. The therapist said, disgusted, " Don't talk

for her!!! " She told me that is far too dependent on me and that she

was welcome to hug her if she wants to during therapy. I responded that

does fine with separation from me and that I didn't see her hugging me as a

negative or disruptive thing. I also said, that I don't think she would make

the choice to hug the therapist as she is not her base of security or

affection. I mean, she's 21 months old! Am I off base or is she out of line

to want therapy without me present to teach me what else to do at home.

Also, was her reaction was to my helping sign was a little over the

top? Right now, I'm thinking of doing the home interventions we do at home

for the next 6 weeks until Lynn is back. I don't want to bite my nose off to

spite my face, if will benefit. Advice is appreciated

Thanks for the vent and the questions.

Judith W. Cameron

Mom to , 21 months -- probably dyspraxia, , 5, , 7 and

, 9

Judy@...

[Guest guest]

Judith-

I've had a similar experience a few times with the ProEFA and ProEPA. When I

stopped my sons (once during a vacation and once during a stomach virus),

they seemed to remain the same for the first week off the supplements. By

about the 10th day off, they started to regress (clumsy, less attentive,

speech not as clear for my younger son). When I restarted, they both had a

big surge. I was waiting for the summer (when things are not as crazy) and I

want to try to figure out how many days on/days off will keep them from

regressing but also keep them peaking.

I thought it was my imagination. I'm glad someone else had a similar

experience.

Lynaugh

[Guest guest]

Been there, too...there are bad apples in every career, eh? My older

son (nearly 5 now) was 2.5 when he started therapy. Between his

initial eval and the start of therapy, he taught himself to talk and

was making wonderful progress. I won't go into all the gory details

as I've posted them here before, but his therapist (at a Children's

Hospital - so no place is perfect) kicked me out of the room after 3

visits (I was able to observe), refused to give him limits (he was

being destructive and grabbing toys - general 2 year old stuff), and

then told me after 2 mos of therapy that all the speech I heard was

obviously just echolelia - he was not capable of speech AND all the

things I'd taught him (letters, colors, etc.) were " flukes " and

perhaps I " thought you saw him pick a letter out once in a while, but

he certainly doesn't know his them, or his colors or numbers " .

Basically, my son was stupid. NOTHING WILL DAMAGE A CHILD MORE THAN

HAVING INCORRECT EXPECTATIONS!!! I lost it and called the head of

the dept and told her everything. I'm thankful that she has a speech

impaired son, herself - he's in college now. While she didn't jump

on board and fire the twit...I mean girl, she did eventually switch

us to someone else. Within a month, he was speaking to the new

therapist the way he spoke with me and has made wonderful progress.

We are quite lucky that the director put us with a seasoned therapist

who didn't have control issues.

Before we got switched, I had my son evaluated by a " brainiac "

therapist for her opinion. She asked me about all the things I did

with him during the day, etc.. When I told her about sitting in

front of the mirror and practicing mouth exercises, teaching him his

letters, numbers and colors, and working on his speech in a variety

of ways, she told me that " perhaps I was being too much of a

therapist and not enough of a mom " . Then she basically told me that

I wasn't trained and should leave it to the professionals!!! We

left, never made the second appt or asked for the eval results, but I

certainly cried alot over it.

So, in (a final, lengthy) response to your questions, I'd say find a

new therapist. Tell the director that you don't think this one is a

good match for you (so as not to alienate the facility). Tell them

that you want to work with someone who works well with younger

children and understands that building a relationship with the child

(and parent) is VERY important. I would also mention that you don't

think this therapist has been terribly respectful to you, and that

you don't think it's appropriate for a session with a not-even-2 year

old to remove a parent from the room, keep the child in a chair for

the entire time or be so drill-focused. They might not know that's

going on. Remember that it's unlikely that they will take your word

over the therapists and you may alienate them, but they will still

want your money! In the end, if you're uncomfortable, your daughter

will pick up on it - you pay these people to offer a service (and

they get ALOT of $$), you should be happy.

Just for reinforcement to what you believe, we saw a FABULOUS

therapist (Ann Clonan - we couldn't have asked for better) here in

Cincinnati who evaluated my younger son (3.4 with speech issues and a

prob dev delay) and she said that she would absolutely want the

therapy with the parent in the room helping the work for such a young

child. The therapist should of course take the lead - that's what

you're paying the big bucks for - but if a hug keeps the session

going, so be it. (I did learn to remain very quiet in the sessions -

it was distracting for my child, but everyone is different.)

Eventually, with the right therapist who offers love and

encouragement, you will be comfortable leaving the room. My vote is

to run. Sorry for the long-windedness - issues like this really get

my goat! I'm QUITE tired of being told how to parent - what greater

insult is there?

Good luck - hope you find someone fabulous -

Marina

> It's been a while since I posted. I am wondering a few things.

>

> 1. Has anyone has noticed improved surges with a break from ProEFA

or

> Carnaware. After reading some growth hormone studies I began trying

a

> regimen of three weeks on and then 3 days off. On day 4 off I

typically

> notice a little more clumsiness (little enough that I wondered the

first

> time if it was real). By the second day back on, she's back to

where she was

> and then for the next week she makes bigger gains, then slow gains,

then

> plateau for the last week. I've done this pattern 4 times now and

see the

> same thing every time. She's 21 months has about 15 good words and

many

> approximations. She can make all the sounds except b, p, m. She

still won't

> attempt single syllable words.

>

> 2. The speech therapist is really annoyed that my 21 month old

doesn't

> ignore me during the speech sessions. She has her in a chair, so

that she

> doesn't walk away. We've seen her for 1 month (our regular is on

maternity

> leave and is really excellent). She now wants to take her alone, so

that she

> doesn't have to compete with me. is a very huggy child and will

> complete a task, come over and hug me and then go back to work. In

> development lingo, we call this touchpoints. It's normal and

healthy. It

> irritates the fire out of the therapist. Today, when she asked

if she

> was ready to work, I repeated " work " and after showing her the

sign, helped

> her move her hands for the same. The therapist said,

disgusted, " Don't talk

> for her!!! " She told me that is far too dependent on me and

that she

> was welcome to hug her if she wants to during therapy. I responded

that

> does fine with separation from me and that I didn't see her hugging

me as a

> negative or disruptive thing. I also said, that I don't think she

would make

> the choice to hug the therapist as she is not her base of security

or

> affection. I mean, she's 21 months old! Am I off base or is she out

of line

> to want therapy without me present to teach me what else to do at

home.

> Also, was her reaction was to my helping sign was a little

over the

> top? Right now, I'm thinking of doing the home interventions we do

at home

> for the next 6 weeks until Lynn is back. I don't want to bite my

nose off to

> spite my face, if will benefit. Advice is appreciated

>

> Thanks for the vent and the questions.

>

> Judith W. Cameron

> Mom to , 21 months -- probably dyspraxia, , 5, , 7

and

> , 9

> Judy@C...

[Guest guest]

When my son started speech therapy at age 25 mos, he sat on my lap in our

basement floor and " played " with the therapist. So we were physically close,

which kept him feeling secure, and also of course i could observe and learn

what I should do at home. My therapist encouraged this. It was no

disruption since he was sitting on my lap so had to need to run over and hug

me. Worked well for us. He was quite a bit older when he started sitting on

the floor with me on the floor next to him (3-4 years old), and only recently

did he start working with the therapist without me in the room (6 years old).

Just our experience.

Sandy, Illinois

[Guest guest]

Judy

In response to your second comment, I think 6 weeks with that

particular therapist will be unlikely to be beneficial; if you can't

get someone else then you can probably do more good at home for that

short period of time. I know you want to try, though, because noone

wants to miss 6 weeks of therapy. What a bummer. I wouldn't hug

that therapist either, although it sounds like she could use a hug.

Regarding your observations with Pro EFA and carnosine breaks, I'm

amazed. What a brilliant idea! I think I will try it myself.

Kim

[Guest guest]

That's fascinating! Keep us posted as to what you are observing.

I'm going to give it a try too.

Kim

-- In , lynaughBoyz@a... wrote:

> Judith-

>

> I've had a similar experience a few times with the ProEFA and

ProEPA. When I

> stopped my sons (once during a vacation and once during a stomach

virus),

> they seemed to remain the same for the first week off the

supplements. By

> about the 10th day off, they started to regress (clumsy, less

attentive,

> speech not as clear for my younger son). When I restarted, they

both had a

> big surge. I was waiting for the summer (when things are not as

crazy) and I

> want to try to figure out how many days on/days off will keep them

from

> regressing but also keep them peaking.

>

> I thought it was my imagination. I'm glad someone else had a

similar

> experience.

>

> Lynaugh

>

>

>

[Guest guest]

What is the relationship with growth hormone studies?

> It's been a while since I posted. I am wondering a few things.

>

> 1. Has anyone has noticed improved surges with a break from ProEFA

or

> Carnaware. After reading some growth hormone studies I began trying

a

> regimen of three weeks on and then 3 days off.

[Guest guest]

" . Has anyone has noticed improved surges with a break from ProEFA or

Carnaware. After reading some growth hormone studies I began trying a

regimen of three weeks on and then 3 days off. On day 4 off I typically

notice a little more clumsiness (little enough that I wondered the first

time if it was real). By the second day back on, she's back to where she was

and then for the next week she makes bigger gains, then slow gains, then

plateau for the last week. I've done this pattern 4 times now and see the

same thing every time. "

We have had the same experience. My theory is that the CNS becomes used to

the supplement and does not benefit as greatly. When you take breaks, the

body then sees the supplement as new (more stimulating) and reacts as so. We

also do the same for her sensory integration therapies. Swinging works much

better if we take swinging breaks and then go back to it. Brushing therapy

also works better when we take breaks. I just rotate the therapies and

supplements. I have no certain time frame. When it seems a supplement or

therapy is not working (or we've plateaued) we move on to a different one

and then come back when that one is not working anymore. BTW, increasing the

supplement or therapy did not help......more is not always better!

Traci, Hawaii

[Guest guest]

Hi Judith!

There is an ongoing debate about the on and off for the EFAs. Dr.

Stordy http://www.drstordy.com author with Malcolm Nicholl of The

LCP Solution book says that she believes the " surge " you see when

you put your child back on is really just your child getting back to

where he was before the EFA stores depleted -I kind of agree with

that. I don't myself see any benefit from stopping the EFAs -it's

not like I see a surge when I take Tanner off -in fact it's been a

nightmare anytime we have -and I promised Tanner I know longer would

try. Robin's daughter Mel who is now 18 'asks' for them everyday -

and what's interesting about this is that Robin told me that

typically Mel doesn't like to take anything -so why this? Mel says

it's helping her!

Now with the carnosine -I did notice an improvement in taking Tanner

off after 3 months on. However within a few weeks -I noticed a bit

of a regression -so I put him back on. I am thinking and on and off

approach for carnosine is going to work well! Thanks for the

suggestion of doing it on a schedule.

As far as your child's SLP -follow your gut and get a different

therapist. Tanner was clingy too -so I know from personal

experience. I loved all of Tanner's therapists and there is nothing

more beautiful than a professional that respects you as a parent and

forms a warm bond with you and your child. You don't have that -and

she doesn't seem to want it either. If your child starts to like a

therapist -and look forward to the sessions -and develops a trust

for the professional -she will not need you there. Your daughter

I'm sure hears the disgust in the therapists voice towards your

offer of help to her (which I'm sure loves) -and you are after

all her Mommy. I wouldn't want to work with someone who snapped at

my Mom either -and I'm a big person now! So again -don't drop

therapy -there are wonderful ones out there -just drop that one.

She may be fine for another -just not yours.

=====

[Guest guest]

Judy,

In response to your first question regarding surges from ProEFA-My son

was taking one a day for a few months, then I upped it to 2. When he

plateued, I stopped giving it to him altogether, just to see what would

happen. He didn¡¯t regress, but he also didn¡¯t progress as quickly as

when he was taking it. We¡¯ve since started up, again, with one a day

and he is doing GREAT!!!

Ilene, mom to , age 4 ¨ö ,apraxia

[ ] wondering a few things

It's been a while since I posted. I am wondering a few things.

1. Has anyone has noticed improved surges with a break from ProEFA or

Carnaware. After reading some growth hormone studies I began trying a

regimen of three weeks on and then 3 days off. On day 4 off I typically

notice a little more clumsiness (little enough that I wondered the first

time if it was real). By the second day back on, she's back to where

she was and then for the next week she makes bigger gains, then slow gains, then

plateau for the last week.

[Guest guest]

Hi Judy,

I'll just add I agree with others who have said this therapist is probably not

right for your daughter.

A break from this kind of therapy sounds like a good idea to me.

I see many children this age and prefer the parent to be actively involved,

including being as close as needed to make the child comfortable.. I don't feel

it is appropriate to confine a young child in a chair and tell them it's time to

" work. " (A child's work is play, after all.) Doing therapy in as natural an

environment as possible, in my opinion, helps the child to make sense of the

input. The younger the child, the more therapy ought to be " in context. "

As for helping a parent realize when it might not be best to talk for the child,

well, sometimes it is necessary to have that discussion. However it needs to be

a discussion, not a scolding! Parents need information, and I haven't yet met

one who doesn't want more information about how to help their child. Some of it

just needs to be delivered with more sensitivity. I often assure parents " you

did the best you possibly could, given what you knew, " when I need to counsel

them to change how they interact with their child.

Deborah Van den Beemt, MS CCC-SLP

in NH/VT

> Date: Tue, 22 Apr 2003 22:50:57 -0400

> From: " Judy Cameron " <judy@...>

> Subject: wondering a few things

>

> 2. The speech therapist is really annoyed that my 21 month old doesn't

> ignore me during the speech sessions. She has her in a chair, so that she

> doesn't walk away. We've seen her for 1 month (our regular is on maternity

> leave and is really excellent). She now wants to take her alone, so that she

> doesn't have to compete with me. is a very huggy child and will

> complete a task, come over and hug me and then go back to work. In

> development lingo, we call this touchpoints. It's normal and healthy. It

> irritates the fire out of the therapist. Today, when she asked if she

> was ready to work, I repeated " work " and after showing her the sign, helped

> her move her hands for the same. The therapist said, disgusted, " Don't talk

> for her!!! " She told me that is far too dependent on me and that she

> was welcome to hug her if she wants to during therapy. I responded that

> does fine with separation from me and that I didn't see her hugging me as a

> negative or disruptive thing. I also said, that I don't think she would make

> the choice to hug the therapist as she is not her base of security or

> affection. I mean, she's 21 months old! Am I off base or is she out of line

> to want therapy without me present to teach me what else to do at home.

> Also, was her reaction was to my helping sign was a little over the

> top? Right now, I'm thinking of doing the home interventions we do at home

> for the next 6 weeks until Lynn is back. I don't want to bite my nose off to

> spite my face, if will benefit. Advice is appreciated

>

> Thanks for the vent and the questions.

>

> Judith W. Cameron