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Hello again! It's been a while since I posted about my 3.3 year old son and his

ongoing and mysterious speech disorder so I thought I'd post an update and see

if anyone has similar experiences or if it seems like we are apraxic or

something totally different.

Elias didn't say a single word until after he turned three, but he has always

been a profuse jargon-er. Recently he started to develop an interest in letter

sounds and he can say the alphabet phonetically from start to finish, so the

sound-making part of his speech is good. Just this week he started saying the

names of letters instead of their sounds and singing along to the alphabet song

but he stil doesn't say WORDS.

He has used the word Turtle and Wolf and makes a few animal sounds but the sound

and words would not be understood by anyone but us. The letters and sounds would

be understood by anyone, they're perfectly clear.

Does this sound familiar to anyone? Does it sound more like Apraxia or a motor

planning issue? We do see a wonderful speech therapist, but I always like to

check in here and see if anyone can offer any personal experience feedback or

ideas.

Thanks, everyone!

-Hillary

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Hi Hillary,

He sounds just like my little boy. He is also 3.3 (Nov. 22) He can say

most sounds in the alphabet and has always been able to do most animal

sounds, just can't say very many words. (Less than 10) In speech we've

been breaking the sounds to make words and are starting to try " blending "

the sounds to make words by giving him cues and prompts for the sounds. I

wouldn't say all of his sounds in the alphabet are perfectly clear, but he

recognizes and knows what they are. Overall, he can say most sounds, but

cannot combine them to make words.

Isn't apraxia and motor planning issue the same thing? I take my son to the

speech department at a nearby university and was told this past week that

his " diagnosis " is going to be moderate DAS or childhood apraxia of speech.

I'm not sure what the " correct " term is. I asked what the difference was

in mild, moderate and severe, and was told with severe, you can't make a lot

of the sounds independently and since he can, he is only moderate.

Anyone have further information on what the difference is with mild,

moderate and severe apraxia?

Are you using any supplements and having success? I notice a big difference

with the fish oils with his language attempts--not accuracy, just attempts.

His dry skin has really cleared up to, so I know his body must have some

deficiency that the oils are helping with. I haven't noticed a big change

with NV but am continuing. I have used both for about 7 months now.

My son attends the university for 1-1 therapy, 50 minute sessions 2x a week

and goes to the preschool 3 times a week. He only receives 10 minutes 1-1

there a day and the rest is group activities. He was just going to the

preschool and I knew it wasn't enough, so I started taking him to the

university. That has been a great experience, even though I have to drive

an hour each way!

I have been told to try to get him to " sing " just making the noise and

attempts to practice getting enough " breath " out to make words to learn how

all the systems work together. We have a few songs we repeat many times

throughout the day, he mostly says " uh-uh-uh " to whatever the tune is.

E-I-E-I-O is a good one for them to be able to say.

About 8 months ago, my son was hardly making any sounds at all. I started

teaching signs with the Signing TIme videos about 4 months ago and can't

believe how he is picking them up. They have really helped to ease his

frustration. I think the signs are helping as a " cue " to say/learn the

words. He has an older brother who will be 5 next month who is a great

talker and a little brother who is 9 months.

I'm curious what you are doing for therapy and what is working? Their

situations sound quite similar.

All the best,

Malinda

On Sat, Feb 19, 2011 at 7:17 AM, hilsandelias <hilarie@...> wrote:

>

>

> Hello again! It's been a while since I posted about my 3.3 year old son and

> his ongoing and mysterious speech disorder so I thought I'd post an update

> and see if anyone has similar experiences or if it seems like we are apraxic

> or something totally different.

>

> Elias didn't say a single word until after he turned three, but he has

> always been a profuse jargon-er. Recently he started to develop an interest

> in letter sounds and he can say the alphabet phonetically from start to

> finish, so the sound-making part of his speech is good. Just this week he

> started saying the names of letters instead of their sounds and singing

> along to the alphabet song but he stil doesn't say WORDS.

>

> He has used the word Turtle and Wolf and makes a few animal sounds but the

> sound and words would not be understood by anyone but us. The letters and

> sounds would be understood by anyone, they're perfectly clear.

>

> Does this sound familiar to anyone? Does it sound more like Apraxia or a

> motor planning issue? We do see a wonderful speech therapist, but I always

> like to check in here and see if anyone can offer any personal experience

> feedback or ideas.

>

> Thanks, everyone!

> -Hillary

>

>

>

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Hi!

How interesting that they are at the same stage at exactly the same age! Elias

takes the Nordic Naturals ProEPA but we're skipping NV for various reasons.

The best therapy tool we've found is the iPad. We play the alphabet games and

Elias loves it. He definitely started reading by learning to spell using the

iPad. He seems to prefer it to reward based therapy like food or toys.

Elias also has an older brother (9 years old) who was an early talker, oddly,

and is extremely literate and has a rather large vocabulary for his age.

However, he was late to crawl and walk!

I forgot to answer 's question about preschool in my last reply! We tried

out the pre-k that offered speech but it wasn't a good fit at all. The kids in

the class had a host of very serious medical conditions that were not speech

related at all. The teachers sent home a note on his SECOND DAY saying he was in

" time-out " for " non-compliance. " So yeah, we had two days of preschool. Elias

was in a co-op before it dissolved and he loved it, we're looking for a new part

time preschool right now. He loves soccer and we just started playing with some

friends so that's some fun motor therapy. :)

It feels like Elias is blossoming right now, a few new words every day, even

though they don't sound like words to anyone but us. haha Attempts are better

than nothing, which is what we had until now!

Best!

Hillary

>

> >

> >

> > Hello again! It's been a while since I posted about my 3.3 year old son and

> > his ongoing and mysterious speech disorder so I thought I'd post an update

> > and see if anyone has similar experiences or if it seems like we are apraxic

> > or something totally different.

> >

> > Elias didn't say a single word until after he turned three, but he has

> > always been a profuse jargon-er. Recently he started to develop an interest

> > in letter sounds and he can say the alphabet phonetically from start to

> > finish, so the sound-making part of his speech is good. Just this week he

> > started saying the names of letters instead of their sounds and singing

> > along to the alphabet song but he stil doesn't say WORDS.

> >

> > He has used the word Turtle and Wolf and makes a few animal sounds but the

> > sound and words would not be understood by anyone but us. The letters and

> > sounds would be understood by anyone, they're perfectly clear.

> >

> > Does this sound familiar to anyone? Does it sound more like Apraxia or a

> > motor planning issue? We do see a wonderful speech therapist, but I always

> > like to check in here and see if anyone can offer any personal experience

> > feedback or ideas.

> >

> > Thanks, everyone!

> > -Hillary

> >

> >

> >

>

>

>

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the iPad has been huge for us too. we are in Texas and my 3 yr old is

in PPCD and both have speech delays.

On 2/20/11, Malinda ph <malinda.joseph@...> wrote:

> Hi Hillary,

>

> He sounds just like my little boy. He is also 3.3 (Nov. 22) He can say

> most sounds in the alphabet and has always been able to do most animal

> sounds, just can't say very many words. (Less than 10) In speech we've

> been breaking the sounds to make words and are starting to try " blending "

> the sounds to make words by giving him cues and prompts for the sounds. I

> wouldn't say all of his sounds in the alphabet are perfectly clear, but he

> recognizes and knows what they are. Overall, he can say most sounds, but

> cannot combine them to make words.

>

> Isn't apraxia and motor planning issue the same thing? I take my son to the

> speech department at a nearby university and was told this past week that

> his " diagnosis " is going to be moderate DAS or childhood apraxia of speech.

> I'm not sure what the " correct " term is. I asked what the difference was

> in mild, moderate and severe, and was told with severe, you can't make a lot

> of the sounds independently and since he can, he is only moderate.

>

> Anyone have further information on what the difference is with mild,

> moderate and severe apraxia?

>

> Are you using any supplements and having success? I notice a big difference

> with the fish oils with his language attempts--not accuracy, just attempts.

> His dry skin has really cleared up to, so I know his body must have some

> deficiency that the oils are helping with. I haven't noticed a big change

> with NV but am continuing. I have used both for about 7 months now.

>

> My son attends the university for 1-1 therapy, 50 minute sessions 2x a week

> and goes to the preschool 3 times a week. He only receives 10 minutes 1-1

> there a day and the rest is group activities. He was just going to the

> preschool and I knew it wasn't enough, so I started taking him to the

> university. That has been a great experience, even though I have to drive

> an hour each way!

>

> I have been told to try to get him to " sing " just making the noise and

> attempts to practice getting enough " breath " out to make words to learn how

> all the systems work together. We have a few songs we repeat many times

> throughout the day, he mostly says " uh-uh-uh " to whatever the tune is.

> E-I-E-I-O is a good one for them to be able to say.

>

> About 8 months ago, my son was hardly making any sounds at all. I started

> teaching signs with the Signing TIme videos about 4 months ago and can't

> believe how he is picking them up. They have really helped to ease his

> frustration. I think the signs are helping as a " cue " to say/learn the

> words. He has an older brother who will be 5 next month who is a great

> talker and a little brother who is 9 months.

>

> I'm curious what you are doing for therapy and what is working? Their

> situations sound quite similar.

>

> All the best,

>

> Malinda

>

> On Sat, Feb 19, 2011 at 7:17 AM, hilsandelias <hilarie@...> wrote:

>

>>

>>

>> Hello again! It's been a while since I posted about my 3.3 year old son

>> and

>> his ongoing and mysterious speech disorder so I thought I'd post an update

>> and see if anyone has similar experiences or if it seems like we are

>> apraxic

>> or something totally different.

>>

>> Elias didn't say a single word until after he turned three, but he has

>> always been a profuse jargon-er. Recently he started to develop an

>> interest

>> in letter sounds and he can say the alphabet phonetically from start to

>> finish, so the sound-making part of his speech is good. Just this week he

>> started saying the names of letters instead of their sounds and singing

>> along to the alphabet song but he stil doesn't say WORDS.

>>

>> He has used the word Turtle and Wolf and makes a few animal sounds but the

>> sound and words would not be understood by anyone but us. The letters and

>> sounds would be understood by anyone, they're perfectly clear.

>>

>> Does this sound familiar to anyone? Does it sound more like Apraxia or a

>> motor planning issue? We do see a wonderful speech therapist, but I always

>> like to check in here and see if anyone can offer any personal experience

>> feedback or ideas.

>>

>> Thanks, everyone!

>> -Hillary

>>

>>

>>

>

>

>

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The iPad sounds great. I'll look into it and the applications available.

He currently does the " UPSTART " preschool program on our desktop and it is

really helping him with his alphabet, math and science. It is very

interactive, but obviously not very portable!

On Sun, Feb 20, 2011 at 4:28 PM, hilsandelias <hilarie@...> wrote:

>

>

> Hi!

>

> How interesting that they are at the same stage at exactly the same age!

> Elias takes the Nordic Naturals ProEPA but we're skipping NV for various

> reasons.

>

> The best therapy tool we've found is the iPad. We play the alphabet games

> and Elias loves it. He definitely started reading by learning to spell using

> the iPad. He seems to prefer it to reward based therapy like food or toys.

>

> Elias also has an older brother (9 years old) who was an early talker,

> oddly, and is extremely literate and has a rather large vocabulary for his

> age. However, he was late to crawl and walk!

>

> I forgot to answer 's question about preschool in my last reply! We

> tried out the pre-k that offered speech but it wasn't a good fit at all. The

> kids in the class had a host of very serious medical conditions that were

> not speech related at all. The teachers sent home a note on his SECOND DAY

> saying he was in " time-out " for " non-compliance. " So yeah, we had two days

> of preschool. Elias was in a co-op before it dissolved and he loved it,

> we're looking for a new part time preschool right now. He loves soccer and

> we just started playing with some friends so that's some fun motor therapy.

> :)

>

> It feels like Elias is blossoming right now, a few new words every day,

> even though they don't sound like words to anyone but us. haha Attempts are

> better than nothing, which is what we had until now!

>

> Best!

> Hillary

>

>

>

> >

> > >

> > >

> > > Hello again! It's been a while since I posted about my 3.3 year old son

> and

> > > his ongoing and mysterious speech disorder so I thought I'd post an

> update

> > > and see if anyone has similar experiences or if it seems like we are

> apraxic

> > > or something totally different.

> > >

> > > Elias didn't say a single word until after he turned three, but he has

> > > always been a profuse jargon-er. Recently he started to develop an

> interest

> > > in letter sounds and he can say the alphabet phonetically from start to

> > > finish, so the sound-making part of his speech is good. Just this week

> he

> > > started saying the names of letters instead of their sounds and singing

> > > along to the alphabet song but he stil doesn't say WORDS.

> > >

> > > He has used the word Turtle and Wolf and makes a few animal sounds but

> the

> > > sound and words would not be understood by anyone but us. The letters

> and

> > > sounds would be understood by anyone, they're perfectly clear.

> > >

> > > Does this sound familiar to anyone? Does it sound more like Apraxia or

> a

> > > motor planning issue? We do see a wonderful speech therapist, but I

> always

> > > like to check in here and see if anyone can offer any personal

> experience

> > > feedback or ideas.

> > >

> > > Thanks, everyone!

> > > -Hillary

> > >

> > >

> > >

> >

> >

> >

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Hi,

I love the iPad! I'm still getting new apps..the latest one is sentence

builder, love it.

An app that my son adores is talking Tom. It's really amazing as the Tom cat

will repeat everything you say. I've found that my son tries to be really clear

when speaking (more than he's ever done with our slp's!). It also purrs when you

pet it and gets upset when you touch it's tail. It also throws pies and

scratches glass. We also got Larry the taking bird. These are the best apps

ever for my son as he can spend quite a lot of time playing with it. This is

the most fun working on speech he's ever had!

Sandy

> > >

> > > >

> > > >

> > > > Hello again! It's been a while since I posted about my 3.3 year old son

> > and

> > > > his ongoing and mysterious speech disorder so I thought I'd post an

> > update

> > > > and see if anyone has similar experiences or if it seems like we are

> > apraxic

> > > > or something totally different.

> > > >

> > > > Elias didn't say a single word until after he turned three, but he has

> > > > always been a profuse jargon-er. Recently he started to develop an

> > interest

> > > > in letter sounds and he can say the alphabet phonetically from start to

> > > > finish, so the sound-making part of his speech is good. Just this week

> > he

> > > > started saying the names of letters instead of their sounds and singing

> > > > along to the alphabet song but he stil doesn't say WORDS.

> > > >

> > > > He has used the word Turtle and Wolf and makes a few animal sounds but

> > the

> > > > sound and words would not be understood by anyone but us. The letters

> > and

> > > > sounds would be understood by anyone, they're perfectly clear.

> > > >

> > > > Does this sound familiar to anyone? Does it sound more like Apraxia or

> > a

> > > > motor planning issue? We do see a wonderful speech therapist, but I

> > always

> > > > like to check in here and see if anyone can offer any personal

> > experience

> > > > feedback or ideas.

> > > >

> > > > Thanks, everyone!

> > > > -Hillary

> > > >

> > > >

> > > >

> > >

> > >

> > >

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There is an entire chapter in The Late Talker book to help you advocate for

appropriate placement. Each child in the US is entitled by Federal Law to a

Free and Appropriate Public Education in the Least Restrictive Environment (FAPE

LRE) If the program that he was in was inappropriate you advocate for a change

-including what I secured for my son Tanner for preschool which was out of

district placement. But other options would be that the school brings in a

therapist specifically to work with your child who has knowledge about your

child's specific impairment that can either work alone with your son or work

with the school's current SLP and train him or her. Paying for you to take your

child to a therapist outside of the school is another option that can be written

up in an IEP. You'd be shocked how much people secure in services when they

advocate.

I know from our VP of Cherab who is an award winning teacher said many times the

school professional's hands are tied in that if they stick up too much for the

child they fear for their own job...and that they love parents that have big

mouths!

If a child is qualified for Early Intervention services for preschool you work

with the IEP team to write up an IEP that the school professionals and you and

your husband and your child's private professionals all agree is appropriate.

It doesn't sound like the program was...but if parents don't advocate the school

won't argue with anyone that wants to pay out of pocket for private. Not that

I've seen!

BTW I read you aren't going to use NV for a few reasons and read your child is a

vegan. I know that NV is not vegan -but it is being used by many vegetarian

families that I know of -including my one son Tanner's former head of school.

It's also recommended by my son's therapist Dr. Renai Jonas who is a vegan.

It's one thing as adults if we decide to be vegan- but you may want to just

consider an exception -even for a week or so to just try it. I know there are

vegans who ended up putting their child on fish oils because we don't see the

same surges with flax as it's only about a ten percent transition from using the

DHA and EPA from fish. Also there are some that after using NV 6 months to a

year there were such great surges that the child was no longer qualifying for

services -and the younger the better is what we learned long ago with fish oils.

http://pursuitofresearch.org/2011/01/19/one-year-later-a-possible-cure-through-e\

ssential-nutrition-for-autism-apraxia-etc/

I just asked another parent () if I can share his update here that he

just sent me which was a letter from his out of control excited kindergarten

teacher after just 9 days on NV- the child is now " much more outgoing, much more

in tune with what it going on in the classroom, and very talkative. " " much more

self-directed when we do classwork. " and " he came into class, took out his ABC

book and without any prompting from anyone, read the entire book for the rest of

the kids in the group! This is all great!! "

Anyway back to preschool -if your child is qualified which I'm guessing he is

because without fish oils or NV if apraxic -it's years of therapy -the IEP

should cover appropriate placement. And yes even without essential nutrients

there is always hope -but again it's just a much much longer road.

=====

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My son just the weekend in the hospital for an EEG and the iPad got him through

it. the nurses were giggling at Talking Tom. firstWords deluxe is also

fantastic. he started saying letters and words from that app.

Sent from my iPad

On Feb 20, 2011, at 9:25 PM, " sandy " <mommie2chris@...> wrote:

> Hi,

>

> I love the iPad! I'm still getting new apps..the latest one is sentence

builder, love it.

> An app that my son adores is talking Tom. It's really amazing as the Tom cat

will repeat everything you say. I've found that my son tries to be really clear

when speaking (more than he's ever done with our slp's!). It also purrs when you

pet it and gets upset when you touch it's tail. It also throws pies and

scratches glass. We also got Larry the taking bird. These are the best apps ever

for my son as he can spend quite a lot of time playing with it. This is the most

fun working on speech he's ever had!

>

> Sandy

>

> >

> > The iPad sounds great. I'll look into it and the applications available.

> > He currently does the " UPSTART " preschool program on our desktop and it is

> > really helping him with his alphabet, math and science. It is very

> > interactive, but obviously not very portable!

> >

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I'm not the op, but when we tried fish oil (Nordic Naturals Ultimate Omega and

another one, I forget, that we tried earlier), he smelled fishy all over.

Indeed it did better for his speech than the flax (though marginally, not

dramatically). We just didn't feel we could continue that till we figured out

what the problem is. So until I have a safe option, we're doing the flax. With

it he definitely has gains. The nutritionist wants him to eat fish in small

amounts as an alternative to the oil, but with the tone in his mouth he's still

not the most keen on chewing meat like that. It's much easier just to use oil.

I was trying to notice whether the last time he ate fish he smelled fishy, or

whether that was my imagination. In any case, what are the options to look at

for reasons the fish oil would make him smell fishy? Dose? Digestion?

Something else? I read something in the archives about a genetic problem, but

that would be with ALL meat, right?

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