Re: I am so lost....

[Guest guest]

Hi

You are doing everything correct

It is totally mistery

There is one more book you should read " Late Talking Children " by

Sowell.

Run to buy it and read it .

Based on your story your baby doing fine Im sure he is very inteligent.

My 3,75 year old son has same story.He can count to ten,sing alphabet.His is

not apraxic

2 month ago he would leave end of the words.But speech therapy totally works.

Teachers in preschool said they can actually understand him now.But in his

story we have reason why he is late talker.At 20 month he started getting

ear.infections none stopAfter 4 month of strugle we put tubes in.his ENT said

before tubes he had hearing problem his ears were stuffed with fluid.That time

was crucial for speech.and it was missed from his life.

Now i thing we are 1,5 years behind on speech.But everything else is

great.Nobody knows

there is problem until he starts talking none stop mixing real words with

baby talk.

he is happy ,never gets frustrated,we are on right path.

good luck

[Guest guest]

I agree. Our son was 3 when the school district assigned him 100 minutes per

month--the common practice in our state is to start with a small amount of

speech therapy on the IEP and then supposedly increase it later when they

allegedly see what the child's needs are--totally arbitrary depending on which

speech path you see and in violation of the law. Our son didn't get lucky;

however, after months of inaction, talking to outside experts, and trying to

work

within the system, we filed a complaint. He then received services 3 times per

week and is now doing well in kindergarten.

First, get a copy together of everything you received from the school

district including a copy of the evaluation which should show the test results

(which

may or may not be reliable). Research the tests that were administered to

your son so you become knowledgeable and read the slaw info on tests--very

good.

Second, read the due process notice that should have been given to you when

your son became eligible for services so you know something about your rights.

Also check your state's Department of Education website for the regulations

for special education. In our state, services are supposed to be based on

empirical evidence not available resources--meaning their recommendations to you

are supposed to be based on scientific research (which always supports early

intervention) not their clinical judgment or past practices or available

resources.

If your son qualified for services, he probably needs more help than 45

minutes per week so be prepared to ask for it and follow through. You are an

equal

member of the IEP team and have the right to ask that services be reviewed if

he is not making appropriate educational progress both relative to himself

and his peers. Focus your requests on getting services necessary to meet

educational goals/outcomes; not just on the amount of services he needs. Make

it

clear to your school speech path that you are not criticizing the services

currently provided (since you will probably work with her) but must advocate for

your child.

Put everything in writing and keep a copy. I found it helpful to send a copy

of important letters to the school board who might push the administration to

be of assistance. If you do this, be very professional in what you write

because you don't want to give your school officials anything to complain about

you except that you are requesting services.

Information from parents advocates can be helpful; however, if the

organization is a recipient of a grant, the grant may be predicated on pursuing

non-conflict based resolution. This is often appropriate; however, be aware

that this

generally requires compromise so you may want to decide what services are

most important to you.

Good luck. It is worth pursuing.

[Guest guest]

Hi Angie,

I am the mother of a 10 year old boy with Apraxia so I remember the frustration

of not knowing where to begin or what to do. My first thought never wait for the

school system to make a diagnoses. You may find later that sometimes the school

can be one of your bigger battles. I would say to find yourself a Developmental

Pediatrician make an appointment and have your son evaluated. Whatever the

outcome may be this website is one of the best resources for information.Good

luck to you and your family and always remember to be your childs advocte. keep

us posted Jenn

Angie <angie_d1@...> wrote:

Hello, I am Angie, mom to Dominic , he is 3.5. I am starting to get

scrared, Dominic's father and I both thought ( along with his

pediatrition) he would talk clearly by now, My husband's father didnt

talk untill he was 3 and his brother was a late talker with other

speech issues. So we tryed to wait it out thinking it might be a

genetic fluke, but now its evident theres a problem, at 3 and a half

he still hasnt been diagnosed with anything yet.

I have him in speech 45 minuts a week ( for a few months now) and I

have recently taken him to be evaluted by the school district.( I am

waiting for another appointment with them, although I was told he

would have to be 2 years behind his peers to have speech class with

them, his speech teacher has told me she is sure this is not the case

and he should be able to get help from the distict for his speech.....

( I am not sure what this is or would be? as he has no dignoises? is

it a class or one on one?)

Dominic leaves off the ends of words, and can't say most counsenets.

( he says Nem Et for look it, bebby for his dog bentley) but he would

rather not talk at all.

At playdates he says few words and used hand gestures for

communication, infact he knows a few signs (sign launguage) and uses

them all the time. He useually doesnt get frustrated when he cant

say something, he just goes onto the next thing. So its hard to get

him to try sometimes.

Some days he will tell entire stories with hand gestures and facial

expressions, but I dont even understand any of the words. I am a stay

at home mom , but he is around other kids every day, infact some ask

me why Dominic does'nt talk or what is he saying , and I dont even

understand him. It breaks my heart and I dont know what I can do for

him, other than copy his speech teachers games and stuff with him

over and over.

We have just started giving him fish oil ( thanks to the book, late

talkers) should we be giving him more than that? I have been reading

about Proefa on this site?

I just dont know where to start with other forms of thearpy that I

can do for him? I am not sure its aprixia? I do know hes not

autistic, and all his fine and gross motor skills are on target. He

knows his colors but can barely say them ...

I am sorry for rambling on, I just am so confused right now.

Thank you for listening any advice is appriciated!

Thank you

Angie

[Guest guest]

Hi Angie,

Welcome! This is a great place for support and information. You will be amazed

at the knowledge base- I know I was. I am mom to 3 children, and my youngest

has praxis, hypotonia, and some sensory issues. There are many who have been

doing this a lot longer than I, but I remember that lost, overwhelmed, feeling,

and I'd like to try to help you in any way I can.

First of all, finding this site and reading The Late Talker, by

[Guest guest]

Hi, Angie!

Welcome aboard this long ride! If you have not already done it, the first

step would be to get a diagnosis for your son - not from the school district but

contact your ped. and set up an appointment with a neuro, a SLP, and a

developmental ped. - for starters. Finding out what the situation is actually

gives almost a " calming " effect in that you then have a reason and can start

seeking the avenues to follow to correct the problem - you're no longer running

around trying to find the reason anymore and can focus your energies on the

answers. In the meantime, by contacting a SLP, you will likely have

appointments set up for therapy. Intensive therapy is the way to go for kids

with apraxia, dysarthria, dyspraxia, etc. since consistency and repetition help

immensely. I would think 45 minutes a week is just not enough - we had therapy

2 x's weekly with another group session and we decided that wasn't enough - he

now has individual speech 4 x's weekly and group once a week (through

school), along with three OT sessions weekly (two at school, one private) and

we're doing the Listening Therapy two times daily everyday at home (Josh also

has DSI and hypotonia along with verbal/oral apraxia, dysarthria, and global

dyspraxia). A SLP will be able to suggest types of therapies but we use the

Kaufman Kit, cued speech, pictures, signs, PECS, and just constant repetition of

word games, sounds, silly stuff to make it all fun (for Josh as well as us!)

It sounds, though, like you're on the right track with the supps - ProEFA is

the name of the supp many of us on the line give our kids - its got the DHA,

EPA, and GLA talked about in The Late Talker. We started our son on a store

brand and he did have a huge surge within a few weeks but then, after months on

the store brand, we had a problem with some " icky " tasting supps - thought they

might have been rancid - so we switched to ProEFA and have not had a single

problem.

Can totally relate to break your heart - don't know how many times I was in

the position of having to explain to kids why Josh didn't say his words all the

time or said words they couldn't understand - still have to explain it sometimes

to newer kids. It's so hard for our kids to socialize when communication is the

culprit but your son using signs is pretty cool - maybe there's a way to make a

game for the other kids to learn the signs as well, then they can communicate

with him a little better.

You're in the right place, Angie. There's a lot of advice and knowledge

here, and some pretty broad shoulders to lean on. Welcome.

Sherry

Angie <angie_d1@...> wrote:

Hello, I am Angie, mom to Dominic , he is 3.5. I am starting to get

scrared, Dominic's father and I both thought ( along with his

pediatrition) he would talk clearly by now, My husband's father didnt

talk untill he was 3 and his brother was a late talker with other

speech issues. So we tryed to wait it out thinking it might be a

genetic fluke, but now its evident theres a problem, at 3 and a half

he still hasnt been diagnosed with anything yet.

I have him in speech 45 minuts a week ( for a few months now) and I

have recently taken him to be evaluted by the school district.( I am

waiting for another appointment with them, although I was told he

would have to be 2 years behind his peers to have speech class with

them, his speech teacher has told me she is sure this is not the case

and he should be able to get help from the distict for his speech.....

( I am not sure what this is or would be? as he has no dignoises? is

it a class or one on one?)

Dominic leaves off the ends of words, and can't say most counsenets.

( he says Nem Et for look it, bebby for his dog bentley) but he would

rather not talk at all.

At playdates he says few words and used hand gestures for

communication, infact he knows a few signs (sign launguage) and uses

them all the time. He useually doesnt get frustrated when he cant

say something, he just goes onto the next thing. So its hard to get

him to try sometimes.

Some days he will tell entire stories with hand gestures and facial

expressions, but I dont even understand any of the words. I am a stay

at home mom , but he is around other kids every day, infact some ask

me why Dominic does'nt talk or what is he saying , and I dont even

understand him. It breaks my heart and I dont know what I can do for

him, other than copy his speech teachers games and stuff with him

over and over.

We have just started giving him fish oil ( thanks to the book, late

talkers) should we be giving him more than that? I have been reading

about Proefa on this site?

I just dont know where to start with other forms of thearpy that I

can do for him? I am not sure its aprixia? I do know hes not

autistic, and all his fine and gross motor skills are on target. He

knows his colors but can barely say them ...

I am sorry for rambling on, I just am so confused right now.

Thank you for listening any advice is appriciated!

Thank you

Angie

[Guest guest]

hi angie,

My says only the beginning of words and leaves the ending of words off. I

know the frustration. he rather go on too if you don't understand him. one

thing I used to do was let him give up but now I don't. I don't let go until I

get a part of it. he gets mad sometimes when I do that but so happy when I do

finally understand him. he's 4 1/2 now and doing better but still has a long

way to go.

I was where you were and it does get better but it takes time. its hard to be

patient sometimes but boy I'll tell ya his apraxia really tests my patience. I

feel so bad and know he is so much more than his apraxia that I lose patience.

I pray god just let him talk please. then I say he does talk but it is hard to

understand him. I try to look on the brighter side.

we are all here to help and listen.... so keep on writing we are here

chris

Angie <angie_d1@...> wrote:

Hello, I am Angie, mom to Dominic , he is 3.5. I am starting to get

scrared, Dominic's father and I both thought ( along with his

pediatrition) he would talk clearly by now, My husband's father didnt

talk untill he was 3 and his brother was a late talker with other

speech issues. So we tryed to wait it out thinking it might be a

genetic fluke, but now its evident theres a problem, at 3 and a half

he still hasnt been diagnosed with anything yet.

I have him in speech 45 minuts a week ( for a few months now) and I

have recently taken him to be evaluted by the school district.( I am

waiting for another appointment with them, although I was told he

would have to be 2 years behind his peers to have speech class with

them, his speech teacher has told me she is sure this is not the case

and he should be able to get help from the distict for his speech.....

( I am not sure what this is or would be? as he has no dignoises? is

it a class or one on one?)

Dominic leaves off the ends of words, and can't say most counsenets.

( he says Nem Et for look it, bebby for his dog bentley) but he would

rather not talk at all.

At playdates he says few words and used hand gestures for

communication, infact he knows a few signs (sign launguage) and uses

them all the time. He useually doesnt get frustrated when he cant

say something, he just goes onto the next thing. So its hard to get

him to try sometimes.

Some days he will tell entire stories with hand gestures and facial

expressions, but I dont even understand any of the words. I am a stay

at home mom , but he is around other kids every day, infact some ask

me why Dominic does'nt talk or what is he saying , and I dont even

understand him. It breaks my heart and I dont know what I can do for

him, other than copy his speech teachers games and stuff with him

over and over.

We have just started giving him fish oil ( thanks to the book, late

talkers) should we be giving him more than that? I have been reading

about Proefa on this site?

I just dont know where to start with other forms of thearpy that I

can do for him? I am not sure its aprixia? I do know hes not

autistic, and all his fine and gross motor skills are on target. He

knows his colors but can barely say them ...

I am sorry for rambling on, I just am so confused right now.

Thank you for listening any advice is appriciated!

Thank you

Angie

[Guest guest]

Hi, -

This is probably the umpteenth time I've said this to you but our kids

really need to meet. Reading your email to angie just sounds so much like me

and Josh - Youngstown, Ohio, is about half way between New York and Ottawa, IL -

we should plan to meet and have a little vacation! Let the kids play!

Sherry

Rome <christinerome@...> wrote:

hi angie,

My says only the beginning of words and leaves the ending of words off. I

know the frustration. he rather go on too if you don't understand him. one

thing I used to do was let him give up but now I don't. I don't let go until I

get a part of it. he gets mad sometimes when I do that but so happy when I do

finally understand him. he's 4 1/2 now and doing better but still has a long

way to go.

I was where you were and it does get better but it takes time. its hard to be

patient sometimes but boy I'll tell ya his apraxia really tests my patience. I

feel so bad and know he is so much more than his apraxia that I lose patience.

I pray god just let him talk please. then I say he does talk but it is hard to

understand him. I try to look on the brighter side.

we are all here to help and listen.... so keep on writing we are here

chris

Angie <angie_d1@...> wrote:

Hello, I am Angie, mom to Dominic , he is 3.5. I am starting to get

scrared, Dominic's father and I both thought ( along with his

pediatrition) he would talk clearly by now, My husband's father didnt

talk untill he was 3 and his brother was a late talker with other

speech issues. So we tryed to wait it out thinking it might be a

genetic fluke, but now its evident theres a problem, at 3 and a half

he still hasnt been diagnosed with anything yet.

I have him in speech 45 minuts a week ( for a few months now) and I

have recently taken him to be evaluted by the school district.( I am

waiting for another appointment with them, although I was told he

would have to be 2 years behind his peers to have speech class with

them, his speech teacher has told me she is sure this is not the case

and he should be able to get help from the distict for his speech.....

( I am not sure what this is or would be? as he has no dignoises? is

it a class or one on one?)

Dominic leaves off the ends of words, and can't say most counsenets.

( he says Nem Et for look it, bebby for his dog bentley) but he would

rather not talk at all.

At playdates he says few words and used hand gestures for

communication, infact he knows a few signs (sign launguage) and uses

them all the time. He useually doesnt get frustrated when he cant

say something, he just goes onto the next thing. So its hard to get

him to try sometimes.

Some days he will tell entire stories with hand gestures and facial

expressions, but I dont even understand any of the words. I am a stay

at home mom , but he is around other kids every day, infact some ask

me why Dominic does'nt talk or what is he saying , and I dont even

understand him. It breaks my heart and I dont know what I can do for

him, other than copy his speech teachers games and stuff with him

over and over.

We have just started giving him fish oil ( thanks to the book, late

talkers) should we be giving him more than that? I have been reading

about Proefa on this site?

I just dont know where to start with other forms of thearpy that I

can do for him? I am not sure its aprixia? I do know hes not

autistic, and all his fine and gross motor skills are on target. He

knows his colors but can barely say them ...

I am sorry for rambling on, I just am so confused right now.

Thank you for listening any advice is appriciated!

Thank you

Angie