Re: newbie-intro/questions

August 9, 2007

Dawn,

I was exactly where you are just one year ago and was too dumb to worry

about talking as he was not yet walking. A lot has changed for the

better. Along the way I discovered more than I bargained for and may

still find more but I am happy to tell you my son is healthy, walking,

running, biking and talking at the ripe old age of 2.5. You came to the

right place. Were it not for this board I am not sure we'd ever be where

we are now.

The little I recall of the speech eval of my son was that he played with

the therapist for an hour and she made some observations and asked us a

number of questions. She or he will try to find out if your child is

swallowing properly, moving the mouth, moving the tongue, breathing

well, has a history of infections, understands what is said to him, etc.

Since you have been lurking I do not know what you have and have not

seen but would like to recommend that you consider looking at the

folders Tina has set up, particularly, the ones that discuss fish oil,

malabsorption, vitamin E, and therapy.

Also, there is a post by Janice that sort of outlines a total approach

to doing what you can to help your child. It mentions ears. If I can

find it I'll send it to you. My son always passed the hearing tests yet

peekaboo fluid absent infection, likely due to an allergen, appears to

have been part of his problem. I just think reading her post would help

you realize down the line, once you get a better idea of what you are

dealing with, if you need to keep a watch on the ears.

I wish you all the best benefits of this board. There are a lot of

wonderful people here who have changed our lives.

Liz

sunriseiz wrote:

>Hi all,

>

>I have been lurking here for a month or so and finally decided

>to share our situation. DS is 17 months old and says nothing. He

>used to babble etc when he was 10-12 months, and then stopped. Now

>mostly it's grunting. Obviously, we have been concerned as is our

>ped. We've had his hearing checked and it's fine. His comprehension

>seems fine since he responds and follows " instructions " .

>

>We have a appt next Thurs for a speech development evaluation. Yea!

>My question for you all is what should I expect and are there

>particular questions I should ask?

>

>In the meantime, we have started an omega 3/6/9 supplement, are doing

>some signing and trying to have more verbal on on one time with him (a

>special challenge due to his verbose older sister!).

>

>I have already learned a lot from you guys!

>Any suggestions or comments would be greatly appreciated!

>

>Thanks,

>Dawn

>

August 9, 2007

Hi Liz!

Thanks for the quick reply and encouragement. Yesterday, our little

guy started really walking, so I am excited about that! I am glad to

hear your son is doing well. We have been just 'watching' ds for the

past few months and we both feel like something is just 'not right'.

I guess we'll find out more after the evaluation.

If you could find the link for total approach, I would appreciate it.

I certainly want to consider all the options. Also, I've never heard

that about the ears. DS always wakes up sneezing (like me!) and I

know I can't hear if I am stuffy. Hmm. I will have to keep this in mind.

Also, I think I am really missing something 'cause I can't find the

folders you mentioned Can you point me in the right direction? I

would really like to see what they have to say.

Thanks again for your encouragement and help,

Dawn

>

> Dawn,

>

> I was exactly where you are just one year ago and was too dumb to worry

> about talking as he was not yet walking. A lot has changed for the

> better. Along the way I discovered more than I bargained for and may

> still find more but I am happy to tell you my son is healthy, walking,

> running, biking and talking at the ripe old age of 2.5. You came to the

> right place. Were it not for this board I am not sure we'd ever be

where

> we are now.

>

> The little I recall of the speech eval of my son was that he played

with

> the therapist for an hour and she made some observations and asked us a

> number of questions. She or he will try to find out if your child is

> swallowing properly, moving the mouth, moving the tongue, breathing

> well, has a history of infections, understands what is said to him, etc.

>

> Since you have been lurking I do not know what you have and have not

> seen but would like to recommend that you consider looking at the

> folders Tina has set up, particularly, the ones that discuss fish oil,

> malabsorption, vitamin E, and therapy.

>

> Also, there is a post by Janice that sort of outlines a total approach

> to doing what you can to help your child. It mentions ears. If I can

> find it I'll send it to you. My son always passed the hearing tests yet

> peekaboo fluid absent infection, likely due to an allergen, appears to

> have been part of his problem. I just think reading her post would help

> you realize down the line, once you get a better idea of what you are

> dealing with, if you need to keep a watch on the ears.

>

> I wish you all the best benefits of this board. There are a lot of

> wonderful people here who have changed our lives.

>

> Liz

>

August 9, 2007

Evaluations are frustrating. Most of their conclusions are based on

what YOU say to them, so if you aren't an expert (who among is?) or

are not observant, a lot will go unnoticed. Even if these are not

your concerns, ask about (1.) oral-motor skills (2.) sensory issues

(3.) tone, in the oral area and in the body in general (4.)

physiological/medical issues. My son's first SLP didn't note or

address his oral-motor issues. Neither my son's pediatrician nor any

of his SLP's noticed his low truncal tone and OT issues. I picked

that up, and it was confirmed by an OT evaluation. Working on that

greatly improved my son's speech production.

I was asked if my son was " clumsy " , but all two year olds seem a bit

unsteady. I said " no " , but I now realize the answer was " yes " .

Because I said " no " , some evaluators crossed a number of really

important things off their list. They SHOULD evaluate his clumsiness

themselves instead of relying on parent reporting, but they don't.

It's like that with everything.

Also, one friend told me that her brother's tongue-tie wasn't picked

up and corrected until he was eight years old. It's amazing what

obvious things are overlooked by " experts " .

Reading over this, it all sounds very negative. I actually have been

quite happy with the SLP's we've used. I just wish I had known more

back then. Fish oil was as important as therapy for us, so that is a

great start. Don't be afraid to be aggressive with dosing. Just go

low and slow as you increase.

Good luck! Let us know how it goes.

in NJ

>

> Hi all,

>

> I have been lurking here for a month or so and finally decided

> to share our situation. DS is 17 months old and says nothing. He

> used to babble etc when he was 10-12 months, and then stopped. Now

> mostly it's grunting. Obviously, we have been concerned as is our

> ped. We've had his hearing checked and it's fine. His

comprehension

> seems fine since he responds and follows " instructions " .

>

> We have a appt next Thurs for a speech development evaluation.

Yea!

> My question for you all is what should I expect and are there

> particular questions I should ask?

>

> In the meantime, we have started an omega 3/6/9 supplement, are

doing

> some signing and trying to have more verbal on on one time with him

(a

> special challenge due to his verbose older sister!).

>

> I have already learned a lot from you guys!

> Any suggestions or comments would be greatly appreciated!

>

> Thanks,

> Dawn

>

August 10, 2007

Hi ,

Thank you for your suggestions regarding the evaluation. I was told

the evaluation will take about 3 hrs so I would guess it should be

thorough, but you are right that I should pay careful attention to the

questions. Those seem like really good tips. I have been through

several adult situations requiring " medical speak " , so I get what you

are saying, but this will be new. I should probably do some more

reading before then.... About clumsiness, that would definitely be

tricky. DS may not be clumsy the way I think of it, but he is very

cautious about trying new physical challenges (walking, climbing, etc.).

Thanks for the comments. I will keep you posted!

Dawn

>

> Evaluations are frustrating. Most of their conclusions are based on

> what YOU say to them, so if you aren't an expert (who among is?) or

> are not observant, a lot will go unnoticed. Even if these are not

> your concerns, ask about (1.) oral-motor skills (2.) sensory issues

> (3.) tone, in the oral area and in the body in general (4.)

> physiological/medical issues. My son's first SLP didn't note or

> address his oral-motor issues. Neither my son's pediatrician nor any

> of his SLP's noticed his low truncal tone and OT issues. I picked

> that up, and it was confirmed by an OT evaluation. Working on that

> greatly improved my son's speech production.

>

> I was asked if my son was " clumsy " , but all two year olds seem a bit

> unsteady. I said " no " , but I now realize the answer was " yes " .

> Because I said " no " , some evaluators crossed a number of really

> important things off their list. They SHOULD evaluate his clumsiness

> themselves instead of relying on parent reporting, but they don't.

> It's like that with everything.

>

> Also, one friend told me that her brother's tongue-tie wasn't picked

> up and corrected until he was eight years old. It's amazing what

> obvious things are overlooked by " experts " .

>

> Reading over this, it all sounds very negative. I actually have been

> quite happy with the SLP's we've used. I just wish I had known more

> back then. Fish oil was as important as therapy for us, so that is a

> great start. Don't be afraid to be aggressive with dosing. Just go

> low and slow as you increase.

>

> Good luck! Let us know how it goes.

>

> in NJ

>

August 19, 2007

More thoughts:

My son was cautious as you described. Dyspraxic or not, a good thing for

that is challenging. I highly recommend Little Gym for that. Gymboree

helped too but for some reason my kids were always sick when we went

there and they are not sickly kids.

Lastly, in another message we talked about if anyone saw him swallow. I

asked many times about this (ENT, ST and OT). All said no issues in him

and that no need for barium swallow test. I believe they are right, I

believe he had nothing warranting the test but I do know this: the kid

choked on thin liquid A LOT. We only served him milk and water and he

always choked on water, in the bath and when drinking it. I believe the

water fluoridation thing was part of it but not the only part. My son

had weak throat muscles, not severe enough to register with anyone

except for the ST to say " Swallowing is not an issue but sounds from the

back of the throat are: specifically G and K. "

No one can explain why he woke up motorplanning wise after tossing the

milk and special fluoridated water.

No one can explain why that and GF produced more hair, more planning

skills and improved disposition, less shyness (fancy word for sensory

issue), and less cautios behavior.

No one can explain why fish oil got us back of the throat sounds G and K

and the stuff we did before resolved the choking. The kid got socked

with a wave at the beach yesterday and while he cried because of the

sand and stuff he did not choke!

This went on too long. Not sure where I started other than to say, write

it all out, everything you see and are concerned about. Take it

seriously, do what you think is right. Be honest about whether it is

working or not and keep moving forward. I have by no means cured my

child of a diagnosis we do not even have yet. I have begun to help make

things better. It is all a bandaid in the end if I don't find the cause

and the solution to manage it.

Best Wishes!

Liz

sunriseiz wrote:

>Hi ,

>

>Thank you for your suggestions regarding the evaluation. I was told

>the evaluation will take about 3 hrs so I would guess it should be

>thorough, but you are right that I should pay careful attention to the

>questions. Those seem like really good tips. I have been through

>several adult situations requiring " medical speak " , so I get what you

>are saying, but this will be new. I should probably do some more

>reading before then.... About clumsiness, that would definitely be

>tricky. DS may not be clumsy the way I think of it, but he is very

>cautious about trying new physical challenges (walking, climbing, etc.).

>

>Thanks for the comments. I will keep you posted!

>

>Dawn

>

>>Evaluations are frustrating. Most of their conclusions are based on

>>what YOU say to them, so if you aren't an expert (who among is?) or

>>are not observant, a lot will go unnoticed. Even if these are not

>>your concerns, ask about (1.) oral-motor skills (2.) sensory issues

>>(3.) tone, in the oral area and in the body in general (4.)

>>physiological/medical issues. My son's first SLP didn't note or

>>address his oral-motor issues. Neither my son's pediatrician nor any

>>of his SLP's noticed his low truncal tone and OT issues. I picked

>>that up, and it was confirmed by an OT evaluation. Working on that

>>greatly improved my son's speech production.

>>

>>I was asked if my son was " clumsy " , but all two year olds seem a bit

>>unsteady. I said " no " , but I now realize the answer was " yes " .

>>Because I said " no " , some evaluators crossed a number of really

>>important things off their list. They SHOULD evaluate his clumsiness

>>themselves instead of relying on parent reporting, but they don't.

>>It's like that with everything.

>>

>>Also, one friend told me that her brother's tongue-tie wasn't picked

>>up and corrected until he was eight years old. It's amazing what

>>obvious things are overlooked by " experts " .

>>

>>Reading over this, it all sounds very negative. I actually have been

>>quite happy with the SLP's we've used. I just wish I had known more

>>back then. Fish oil was as important as therapy for us, so that is a

>>great start. Don't be afraid to be aggressive with dosing. Just go

>>low and slow as you increase.

>>

>>Good luck! Let us know how it goes.

>>

>> in NJ

>>

>

August 20, 2007

Keep the thoughts coming! I have thought about the Little Gym or

something like it. However cautious he is, he is definitely a

climber! I will have to look into it...I am sure he would enjoy it

and would probably benefit too.

We have not had any swallowing issues, thankfully. I am glad you have

found some things that are working for your son. It does seem like a

lot of the why's aren't known yet. I am going to be interested in

hearing how your son continues to develop, especially since he seems a

lot like mine. I'm willing to try just about anything to help him, so

I hope I can learn from your experience. Thanks again for sharing. I

have a lot to learn!

> >

> >>Evaluations are frustrating. Most of their conclusions are based on

> >>what YOU say to them, so if you aren't an expert (who among is?) or

> >>are not observant, a lot will go unnoticed. Even if these are not

> >>your concerns, ask about (1.) oral-motor skills (2.) sensory issues

> >>(3.) tone, in the oral area and in the body in general (4.)

> >>physiological/medical issues. My son's first SLP didn't note or

> >>address his oral-motor issues. Neither my son's pediatrician nor any

> >>of his SLP's noticed his low truncal tone and OT issues. I picked

> >>that up, and it was confirmed by an OT evaluation. Working on that

> >>greatly improved my son's speech production.

> >>

> >>I was asked if my son was " clumsy " , but all two year olds seem a bit

> >>unsteady. I said " no " , but I now realize the answer was " yes " .

> >>Because I said " no " , some evaluators crossed a number of really

> >>important things off their list. They SHOULD evaluate his clumsiness

> >>themselves instead of relying on parent reporting, but they don't.

> >>It's like that with everything.

> >>

> >>Also, one friend told me that her brother's tongue-tie wasn't picked

> >>up and corrected until he was eight years old. It's amazing what

> >>obvious things are overlooked by " experts " .

> >>

> >>Reading over this, it all sounds very negative. I actually have been

> >>quite happy with the SLP's we've used. I just wish I had known more

> >>back then. Fish oil was as important as therapy for us, so that is a

> >>great start. Don't be afraid to be aggressive with dosing. Just go

> >>low and slow as you increase.

> >>

> >>Good luck! Let us know how it goes.

> >>

> >> in NJ

> >>

> >

August 20, 2007

I swear this thing may put me in an ansylum in the end but so long as my

son can call and talk to me so be it. I've settled on a few things

today: we will continue with diet, modest fish oil and *maybe* a multi

and calcium as needed. It seems to me a daily multi and calcium is too

much and irritates the gut we are trying to heal. We'll follow up on

genetic celiac testing and a trip to the hematologist for me to rule in

or out that iron in the liver disorder. In Oct we see Dr. Agin for

speech and The new GI in Philly who Nadine saw for folow up. Beyond that

I am testing water, hair, poop, urine and generally decreasing the toxic

load. I am also going on vacation somewhere (see other post for that

nightmare) and returning to my part-time job.

This is nuts! But, my son and daughter are happy and doing pretty well

and even seem healthy so thank God for that!

sunriseiz wrote:

>Keep the thoughts coming! I have thought about the Little Gym or

>something like it. However cautious he is, he is definitely a

>climber! I will have to look into it...I am sure he would enjoy it

>and would probably benefit too.

>

>We have not had any swallowing issues, thankfully. I am glad you have

>found some things that are working for your son. It does seem like a

>lot of the why's aren't known yet. I am going to be interested in

>hearing how your son continues to develop, especially since he seems a

>lot like mine. I'm willing to try just about anything to help him, so

>I hope I can learn from your experience. Thanks again for sharing. I

>have a lot to learn!

>

>>>

>>>>Evaluations are frustrating. Most of their conclusions are based on

>>>>what YOU say to them, so if you aren't an expert (who among is?) or

>>>>are not observant, a lot will go unnoticed. Even if these are not

>>>>your concerns, ask about (1.) oral-motor skills (2.) sensory issues

>>>>(3.) tone, in the oral area and in the body in general (4.)

>>>>physiological/medical issues. My son's first SLP didn't note or

>>>>address his oral-motor issues. Neither my son's pediatrician nor any

>>>>of his SLP's noticed his low truncal tone and OT issues. I picked

>>>>that up, and it was confirmed by an OT evaluation. Working on that

>>>>greatly improved my son's speech production.

>>>>

>>>>I was asked if my son was " clumsy " , but all two year olds seem a bit

>>>>unsteady. I said " no " , but I now realize the answer was " yes " .

>>>>Because I said " no " , some evaluators crossed a number of really

>>>>important things off their list. They SHOULD evaluate his clumsiness

>>>>themselves instead of relying on parent reporting, but they don't.

>>>>It's like that with everything.

>>>>

>>>>Also, one friend told me that her brother's tongue-tie wasn't picked

>>>>up and corrected until he was eight years old. It's amazing what

>>>>obvious things are overlooked by " experts " .

>>>>

>>>>Reading over this, it all sounds very negative. I actually have been

>>>>quite happy with the SLP's we've used. I just wish I had known more

>>>>back then. Fish oil was as important as therapy for us, so that is a

>>>>great start. Don't be afraid to be aggressive with dosing. Just go

>>>>low and slow as you increase.

>>>>

>>>>Good luck! Let us know how it goes.

>>>>

>>>> in NJ

>>>>

>>>

August 20, 2007

That is funny you say that about your son. Both my kids are climbers,

even my cautious guy. He sort of had that eyes are bigger than ability

thing but the ability has caught up. Fun to watch that.