Re: Not sure what to do ... please help!

[Guest guest]

,

I am also a newbie and am not going to be able to offer many words of wisdom.

However, from my own experience I know it is nice to know you aren't alone. Our

son is 38 months old. We too are struggling to find the right fit with the

school therapist. We received a great recommendation from

[Guest guest]

Hi Tracey,

My daughter has been diagnosed with speech apraxia at age 3 by her Developmental

Specialist. After extensive testing by a clinical phsycologist,with input from

me,her spl and the specialist,they determined that she was in fact apraxic. My

daughter,Kailyn, had vigorus speech therapy 3 times a week within the pediatric

dept of the Developmental Specialists' office along within the school

district.(She started early childhood development at age 3) She also had(and

still does) behavioral treatment at home per 7 hours a week.

It sounds to me that is in fact apraxic. I would suggest finding a

Developmental Specialist that will help find a phsycologist for testing. The

sooner that is done,the sooner you can find the right SPL willing to work on

articulation,word formation, and muscle toning within the jaw. Children with

apraxia know what they want to say,it's just difficult to form the words and

sounds. Kailyn is now 10yrs old and can read at a kindergarten level. It doesn't

sound like a big deal,but trust me, when starts to speak,all the hours and

effort being put in to his speech will be well worth it!

You should also check into early intervention if they have it where you live.

Check with your local county government office.

P.S. my daughter is on the ASD spectrum. PPD-NOS

GOOD LUCK!

Dawn

>

> Hi, I really need some advice. I am trying to do my best for my son but am

not sure where to go. I'll try to keep it short but it may get long ...

>

> Brief history: is now 45 months.

>

> He has major speech " delays, " they are calling an expressive disorder,

receptive disorder and articulation disorder. Also other issues, sensory, being

screened for ASD. At 2 1/2 yrs, spoke about 25 words and no sentences, and

was nearly un-intelligible, though he would try to make out words and sentences,

they were just a bunch of babbly jargon coming out of his mouth with the

occasional work that could be understood. We started ISD early special ed

services at that time, 1hour a week for speech. He made some but little

progress and we added on private therapy at 3yrs, 30mins 2xs a week. He started

a early special ed preschool, 3 days a week for 2hours last fall.

>

> In January, his teach and SPL at school called me and told me they were

concerned about apraxia. This was the first i had ever heard of the condition.

Of course, I did some research and it seemed to me that had many of the

symptoms. It is still very difficult to understand much of what he says, he

shows inconsistent errors in his words and speech, he can imitate some but this

does not translate into spontaneous speech, long words are harder for him so

what speech that he does have is very simple, etc.

>

> had just had his private speech therapist changed (due to lack of

communication from other SPL). I brought up the apraxia concerns to his new

thereapist who outright dismissed me. She had only seen 1-2 times and told

me there was no way that he had apraxia. She did not even ask me what behaviors

I may have seen at home that made me think so. Well, I was unimpressed and we

made another therapist switch even moving to another clinic. We really like our

new person, but she says and is true that she needs time to get to know

before making any diagnosis. He has seen her I think 3 times now.

>

> In the meantime, is being screened for ASD and we saw a ped neurologist.

I brought up my questions but he basically just told me that apraxia is very

hard to diagnose, and then dropeed the subject.

>

> Also, his SPL at the school is calling his new private therapist to discuss

her concerns however, she went out on maternity leave early. She is even still

going to call (how nice!) but I am giving her time since she just had a new

baby. School tells me that the ISD cant make medical dx.

>

> Sorry this got so long but I hope I included all the revelant info. Any

thoughts?

>

> I live in MN.

>

> Thank you,

>

>

>

[Guest guest]

I highly recommend that you read the late talker book. My son too was diagnosed

as apraxic around 3 but I found this group and I read that it is better to have

your child evaluated by an slp (I don't know what a spl is?) and a

neurodevelpmental pediatrician or a neurologist rather than a psychologist

because too many children are not diagnosed right. My son has had a wonderful

private speech therapist since day one but made very little progress until we

started fish oils. At Christmas we started NV and my son has just blossomed in

speech and in school! I wish I knew someone in Minnesota to recommend for you!

Kate

> >

> > Hi, I really need some advice. I am trying to do my best for my son but am

not sure where to go. I'll try to keep it short but it may get long ...

> >

> > Brief history: is now 45 months.

> >

> > He has major speech " delays, " they are calling an expressive disorder,

receptive disorder and articulation disorder. Also other issues, sensory, being

screened for ASD. At 2 1/2 yrs, spoke about 25 words and no sentences, and

was nearly un-intelligible, though he would try to make out words and sentences,

they were just a bunch of babbly jargon coming out of his mouth with the

occasional work that could be understood. We started ISD early special ed

services at that time, 1hour a week for speech. He made some but little

progress and we added on private therapy at 3yrs, 30mins 2xs a week. He started

a early special ed preschool, 3 days a week for 2hours last fall.

> >

> > In January, his teach and SPL at school called me and told me they were

concerned about apraxia. This was the first i had ever heard of the condition.

Of course, I did some research and it seemed to me that had many of the

symptoms. It is still very difficult to understand much of what he says, he

shows inconsistent errors in his words and speech, he can imitate some but this

does not translate into spontaneous speech, long words are harder for him so

what speech that he does have is very simple, etc.

> >

> > had just had his private speech therapist changed (due to lack of

communication from other SPL). I brought up the apraxia concerns to his new

thereapist who outright dismissed me. She had only seen 1-2 times and told

me there was no way that he had apraxia. She did not even ask me what behaviors

I may have seen at home that made me think so. Well, I was unimpressed and we

made another therapist switch even moving to another clinic. We really like our

new person, but she says and is true that she needs time to get to know

before making any diagnosis. He has seen her I think 3 times now.

> >

> > In the meantime, is being screened for ASD and we saw a ped

neurologist. I brought up my questions but he basically just told me that

apraxia is very hard to diagnose, and then dropeed the subject.

> >

> > Also, his SPL at the school is calling his new private therapist to discuss

her concerns however, she went out on maternity leave early. She is even still

going to call (how nice!) but I am giving her time since she just had a new

baby. School tells me that the ISD cant make medical dx.

> >

> > Sorry this got so long but I hope I included all the revelant info. Any

thoughts?

> >

> > I live in MN.

> >

> > Thank you,

> >

> >

> >

>

[Guest guest]

Hi !

There are many reasons for a child to have a delay. But the " evaluations " of

speech delay or expressive delay....totally obvious but not a diagnosis. You

want to know 'why' he's not talking -you already knew he had a delay before you

brought him there. Is it due to motor planning, weakness, what? You note he has

sensory issues, they can also affect expressive language. Also while your child

is being screened for autism spectrum disorder, as to me from what you wrote it

sounds like you are dealing with professionals who don't have great knowledge in

apraxia, I'd be VERY careful. If diagnosed with autism and if that is not an

accurate diagnosis and say apraxia is, ABA therapy for apraxia is not

appropriate and has been found in numerous cases in this group to be

detrimental if not needed by the child. For those children that have both

autism and apraxia you want to make sure the ABA therapy is not to address the

motor planning impairments of apraxia –it's highly inappropriate and again can

be detrimental.

We do have one member that I know of in Minnesota who I know from there are few

others around her. I'll introduce the two of you in a private email because

I'm not sure if she wants her email on the web.

So apraxia is a possibility, but good news is that while it's difficult to know

for sure with a child under 3 if it's apraxia unless there is oral apraxia as

well, your child is almost 4 years old! My son was diagnosed with apraxia by

professionals that were able to diagnose him from the first time they met him.

I'm a huge believer in second opinions and I didn't tell each professional what

the other said –I just presented my son and they evaluated him. I find an

" evaluation " of " receptive disorder " to be a waste of money, " receptive

disorder " to be an assault to your child as they are not able to come up with a

true diagnosis for the " expressive disorder " and " articulation disorder " to be a

joke as your child is essentially nonverbal at almost 4 years old! Are they

kidding?!! AND- if it ends up your child is apraxic- articulation therapy you

have to be very careful with as well –too much of that can lead to stuttering

when they do begin to speak. So again it's like you are dealing with people

that read about apraxia in a textbook and not dealing with it in real life.

That's not what I would want! Is it possible to travel to seek an evaluation

from someone from say Wisconsin or Michigan? Are either of those states close

at all to you as I don't know in any other direction around you where you should

turn. I just wrote the other day if you can afford to it's worth even driving

for hours and getting a hotel room or flying to secure an appropriate diagnosis

for appropriate therapy and placement and your story is a perfect example why.

I mean how much longer are they going to string this along before they start

really helping your son?

Since you note sensory issues, if there is a speech delay together with " soft

signs " such as sensory integration dysfunction, hypotonia / low tone and/or

motor planning deficits in the body -that all points to the diagnosis of

apraxia. Please share what symptoms of autism your child has as I didn't read

any in this message. Sensory integration dysfunction is found co existing in

autism, but it's also found co existing in apraxia, in those with traumatic

brain injury, and standing alone. And if sensory integration dysfunction wasn't

common Jockey and other companies wouldn't have gone " tag-free " on the t-shirts.

There are therapies for sensory issues just as there are for all the other

symptoms you may be noting.

But again the one " diagnosis " I would refuse to have on my child's record unless

they could prove it would be the receptive disorder. Disorder is different than

delay- I wouldn't even allow receptive delay without proof- they already are

making claims that your child has an impairment of his receptive ability and

he's not even 4 and properly diagnosed yet! Shame on them!!! Please don't let

them shove your child into that box just yet without seeking an evaluation with

professionals who have knowledge in multifaceted communication impairments and

outside of just autism. Some of them once they rule out hearing impairment and

autism figure -oh he'll be fine up to a certain age and then sometime after 3

they start assuming receptive and learning disabilities due to the expressive

delay. For those under the age of 3 that are late talkers, 75% of them are

just that- children with developmental delays in speech which means they will

start talking fine soon –but just a bit later and probably with or without

therapy. But if your child is apraxic and in that other 25% you want to know.

And you want to provide your child with the benefit of the doubt when it comes

to receptive and cognitive ability at this point.

Your child may be dealing with issues beyond others of his age, and he is going

to need you to learn (in your free time in between laundry and all) how to

advocate for him -be his voice. Stand up for him and say " How do you know my son

has a receptive disorder when you can't even tell me why he's almost 4 years old

and not talking?! " " I want to know what testing you used to determine that "

I have found that those professionals that either are knowledgeable about

working with apraxic children, and when that's not possible, those professionals

that are knowledgeable about working with the deaf or hearing impaired

population to be better at evaluating those children with apraxia, or apraxia

and autism. You want to again secure an appropriate diagnosis for appropriate

therapy and placement. Those that work with the hearing impaired population

don't have preconceived negative views on expressive impairments. Just because a

child can't talk doesn't mean they don't think -have feeling -can't listen and

understand others talking about them like they aren't in the room.

It's wise to provide some sort of alternative communication- even simple sign or

simple picture exchange (think of a menu at a restaurant..if you were in another

country and couldn't say " pizza " you would know how to point to that photo of

pizza....but don't take my word for that because when I was in Paris I only

wanted a slice and got a whole pie- but you get the point) I HIGHLY recommend

the iPad if you can afford one –as they have pegged your child with a " receptive

impairment " and the iPad can prove them wrong. Please read this

http://www.facebook.com/topic.php?topic=15792 & post=106478 & uid=115029735601#post1\

06478 which is on our group's public facebook page http://www.apraxia.org

Have you read The Late Talker? http://www.cherabfoundation.org/latetalkerbook/

If not that is highly recommended.

Try to find other parents, again I'll introduce you to one. I plan on putting

together a new support page as there are some awesome parents that want to start

supports groups and I want to get info up on how to get that started. It seems

that you need that in your area!

Just remember -your child is still preschool and even if he was school age there

is so much hope for all children with communication impairments- we read about

" miracles " every single day. The most important things for speech delay is

appropriate evaluation to secure appropriate therapy and if needed for preschool

(in 6 months) placement with an IEP. After that you may want to look as well

into nutritional methods we find that help which would be the essential fatty

acids from fish oils

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

\

autism-and-other-communication-impairments and essential amino acids and

nutrients from NV

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-treatment-of-speech-impairments/

So in summary I would highly recommend the following.

1. If you have not yet read The Late Talker book -you can start reading it

online- go to Google Books and search. That will be a great resource. If you can

afford the ten dollars it will be worth getting a copy as there are sample

letters etc. in there that will help you advocate and the free online version

has parts cut out. I co authored that book with neurodevelopmental pediatrician

Dr. Marilyn Agin and international journalist Malcolm Nicholl who also co

authored the book The LCP Solution with Dr. Stordy (about fish oils)

2. I put reading the book first because if you do have insurance that book will

help -and I have more to help in this area if you need help in securing therapy

through insurance. I have some here also from our apraxia.org facebook page

http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

3. A private evaluation with the following professionals that have knowledge

about VARIOUS multifaceted communication impairments....not just autism-

preferably those that are recommended by others

A. Speech language pathologist

B. NeuroMD (pediatric neurologist or developmental pediatrician)

C. Occupational therapist if the neuro and/or SLP suspect sensory and tone

issues (you may not be aware of the signs as you are a newbie and they may be

subtle at this age)

4. Find local support either in person or online.

5. Look into essential nutrients from fish oils and NV- here's info to share

with your child's doctor (once you find one!) about NV

http://pursuitofresearch.org/find-a-professional/

At your child's age he should have an IEP. It's good to have a " hero " (SLP,

neuroMD) on the outside of the system to help set and or approve the 3, 6 and

yearly goals in the IEP.

I know this may all sound overwhelming -but you don't have to know everything at

once and it will be OK. Most in our group have children that are mainstreamed

by kindergarten and are good students. I have a few messages here again at our

apraxia.org group for new members.

http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

or

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

The good news is that you are out searching for your child which tells me that

he's going to be just fine. We just have to get you on the right track for what

to do next now- and some of the above will be a start to that! There is SO much

hope for a verbal and mainstreamed future!

Best!

=====

[Guest guest]

Thank you for all the great advice and support. I went running to the bookstore

for The Late Talker and found it very informational. I am going to find a

developmental specialist. If anyone know of one in MN please let me know. We

have been to a ped neurologist but were told that " apraxia is very hard to

diagnose. " Must not be his area of expertise ... Also, we have a appt with the

psychologist this week as a part of his ASD testing, I am not sure that I

mentioned apraxia to her because I did not think it was here area, I will

certainly mention it on Tues.

And thank you for your words of encouragement. This is exactly what I am

worried about. He is starting kindergarten soon and the key is early

intervention.

I noticed after I posted that I mispelled SLP, it was quite late

I will keep you updated, I was also sent information for a clinic in MI, she is

considered an expert in the field. We will travel to find the appropriate

expertise if needed!

>

> Hi !

>

> There are many reasons for a child to have a delay. But the " evaluations " of

speech delay or expressive delay....totally obvious but not a diagnosis. You

want to know 'why' he's not talking -you already knew he had a delay before you

brought him there. Is it due to motor planning, weakness, what? You note he has

sensory issues, they can also affect expressive language. Also while your child

is being screened for autism spectrum disorder, as to me from what you wrote it

sounds like you are dealing with professionals who don't have great knowledge in

apraxia, I'd be VERY careful. If diagnosed with autism and if that is not an

accurate diagnosis and say apraxia is, ABA therapy for apraxia is not

appropriate and has been found in numerous cases in this group to be

> detrimental if not needed by the child. For those children that have both

autism and apraxia you want to make sure the ABA therapy is not to address the

motor planning impairments of apraxia it's highly inappropriate and again can be

detrimental.

>

> We do have one member that I know of in Minnesota who I know from there are

few others around her. I'll introduce the two of you in a private email

because I'm not sure if she wants her email on the web.

>

> So apraxia is a possibility, but good news is that while it's difficult to

know for sure with a child under 3 if it's apraxia unless there is oral apraxia

as well, your child is almost 4 years old! My son was diagnosed with apraxia by

professionals that were able to diagnose him from the first time they met him.

I'm a huge believer in second opinions and I didn't tell each professional what

the other said I just presented my son and they evaluated him. I find an

" evaluation " of " receptive disorder " to be a waste of money, " receptive

disorder " to be an assault to your child as they are not able to come up with a

true diagnosis for the " expressive disorder " and " articulation disorder " to be a

joke as your child is essentially nonverbal at almost 4 years old! Are they

kidding?!! AND- if it ends up your child is apraxic- articulation therapy you

have to be very careful with as well too much of that can lead to stuttering

when they do begin to speak. So again it's like you are dealing with people

that read about apraxia in a textbook and not dealing with it in real life.

That's not what I would want! Is it possible to travel to seek an evaluation

from someone from say Wisconsin or Michigan? Are either of those states close

at all to you as I don't know in any other direction around you where you should

turn. I just wrote the other day if you can afford to it's worth even driving

for hours and getting a hotel room or flying to secure an appropriate diagnosis

for appropriate therapy and placement and your story is a perfect example why.

I mean how much longer are they going to string this along before they start

really helping your son?

>

> Since you note sensory issues, if there is a speech delay together with " soft

signs " such as sensory integration dysfunction, hypotonia / low tone and/or

motor planning deficits in the body -that all points to the diagnosis of

apraxia. Please share what symptoms of autism your child has as I didn't read

any in this message. Sensory integration dysfunction is found co existing in

autism, but it's also found co existing in apraxia, in those with traumatic

brain injury, and standing alone. And if sensory integration dysfunction wasn't

common Jockey and other companies wouldn't have gone " tag-free " on the t-shirts.

There are therapies for sensory issues just as there are for all the other

symptoms you may be noting.

>

> But again the one " diagnosis " I would refuse to have on my child's record

unless they could prove it would be the receptive disorder. Disorder is

different than delay- I wouldn't even allow receptive delay without proof- they

already are making claims that your child has an impairment of his receptive

ability and he's not even 4 and properly diagnosed yet! Shame on them!!!

Please don't let them shove your child into that box just yet without seeking an

evaluation with professionals who have knowledge in multifaceted communication

impairments and outside of just autism. Some of them once they rule out hearing

impairment and autism figure -oh he'll be fine up to a certain age and then

sometime after 3 they start assuming receptive and learning disabilities due to

the expressive delay. For those under the age of 3 that are late talkers, 75%

of them are just that- children with developmental delays in speech which means

they will start talking fine soon but just a bit later and probably with or

without therapy. But if your child is apraxic and in that other 25% you want

to know. And you want to provide your child with the benefit of the doubt when

it comes to receptive and cognitive ability at this point.

>

> Your child may be dealing with issues beyond others of his age, and he is

going to need you to learn (in your free time in between laundry and all) how to

advocate for him -be his voice. Stand up for him and say " How do you know my son

has a receptive disorder when you can't even tell me why he's almost 4 years old

and not talking?! " " I want to know what testing you used to determine that "

>

> I have found that those professionals that either are knowledgeable about

working with apraxic children, and when that's not possible, those professionals

that are knowledgeable about working with the deaf or hearing impaired

population to be better at evaluating those children with apraxia, or apraxia

and autism. You want to again secure an appropriate diagnosis for appropriate

therapy and placement. Those that work with the hearing impaired population

don't have preconceived negative views on expressive impairments. Just because a

child can't talk doesn't mean they don't think -have feeling -can't listen and

understand others talking about them like they aren't in the room.

>

> It's wise to provide some sort of alternative communication- even simple sign

or simple picture exchange (think of a menu at a restaurant..if you were in

another country and couldn't say " pizza " you would know how to point to that

photo of pizza....but don't take my word for that because when I was in Paris I

only wanted a slice and got a whole pie- but you get the point) I HIGHLY

recommend the iPad if you can afford one as they have pegged your child with a

" receptive impairment " and the iPad can prove them wrong. Please read this

http://www.facebook.com/topic.php?topic=15792 & post=106478 & uid=115029735601#post1\

06478 which is on our group's public facebook page http://www.apraxia.org

>

> Have you read The Late Talker? http://www.cherabfoundation.org/latetalkerbook/

If not that is highly recommended.

>

> Try to find other parents, again I'll introduce you to one. I plan on putting

together a new support page as there are some awesome parents that want to start

supports groups and I want to get info up on how to get that started. It seems

that you need that in your area!

>

> Just remember -your child is still preschool and even if he was school age

there is so much hope for all children with communication impairments- we read

about " miracles " every single day. The most important things for speech delay is

appropriate evaluation to secure appropriate therapy and if needed for preschool

(in 6 months) placement with an IEP. After that you may want to look as well

into nutritional methods we find that help which would be the essential fatty

acids from fish oils

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

\

> autism-and-other-communication-impairments and essential amino acids and

nutrients from NV

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-treatment-of-speech-impairments/

>

> So in summary I would highly recommend the following.

>

> 1. If you have not yet read The Late Talker book -you can start reading it

online- go to Google Books and search. That will be a great resource. If you can

afford the ten dollars it will be worth getting a copy as there are sample

letters etc. in there that will help you advocate and the free online version

has parts cut out. I co authored that book with neurodevelopmental pediatrician

Dr. Marilyn Agin and international journalist Malcolm Nicholl who also co

authored the book The LCP Solution with Dr. Stordy (about fish oils)

>

> 2. I put reading the book first because if you do have insurance that book

will help -and I have more to help in this area if you need help in securing

therapy through insurance. I have some here also from our apraxia.org facebook

page http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

>

> 3. A private evaluation with the following professionals that have knowledge

about VARIOUS multifaceted communication impairments....not just autism-

preferably those that are recommended by others

> A. Speech language pathologist

> B. NeuroMD (pediatric neurologist or developmental pediatrician)

> C. Occupational therapist if the neuro and/or SLP suspect sensory and tone

issues (you may not be aware of the signs as you are a newbie and they may be

subtle at this age)

>

> 4. Find local support either in person or online.

>

> 5. Look into essential nutrients from fish oils and NV- here's info to share

with your child's doctor (once you find one!) about NV

http://pursuitofresearch.org/find-a-professional/

>

> At your child's age he should have an IEP. It's good to have a " hero " (SLP,

neuroMD) on the outside of the system to help set and or approve the 3, 6 and

yearly goals in the IEP.

>

>

> I know this may all sound overwhelming -but you don't have to know everything

at once and it will be OK. Most in our group have children that are

mainstreamed by kindergarten and are good students. I have a few messages here

again at our apraxia.org group for new members.

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

>

> or

>

> http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

>

> The good news is that you are out searching for your child which tells me that

he's going to be just fine. We just have to get you on the right track for what

to do next now- and some of the above will be a start to that! There is SO much

hope for a verbal and mainstreamed future!

>

> Best!

>

>

> =====

>

[Guest guest]

it is clear today that my son's diagnosis of apraxia was correct but a few

years ago we were told as well after they ruled out hearing problems that it may

be autism as if there were no other reasons for his speech delay. I do hope

that like and me you have an slp near you that is wonderful. The late

talker book was and still is a huge help for understanding how to help my little

boy. My other advice is don't be like me and wait forever to start fish oils and

NV. Our son's pediatrician approved both, but there is a find a professional

page here http://pursuitofresearch.org/find-a-professional/ My 6 year old DS was

in therapy for months prior with little progress to fish oils and then years

later at Christmas we started him on NV and we are filled with joy that he is

now speaking in sentences and reading books on level for kindergarten! I don't

like the internet much and it was out of my comfort zone to even join an online

group, but I shudder to think where my son would be without all I learned in

this group that I didn't learn anywhere else. Kate

> >

> > Hi !

> >

> > There are many reasons for a child to have a delay. But the " evaluations " of

speech delay or expressive delay....totally obvious but not a diagnosis. You

want to know 'why' he's not talking -you already knew he had a delay before you

brought him there. Is it due to motor planning, weakness, what? You note he has

sensory issues, they can also affect expressive language. Also while your child

is being screened for autism spectrum disorder, as to me from what you wrote it

sounds like you are dealing with professionals who don't have great knowledge in

apraxia, I'd be VERY careful. If diagnosed with autism and if that is not an

accurate diagnosis and say apraxia is, ABA therapy for apraxia is not

appropriate and has been found in numerous cases in this group to be

> > detrimental if not needed by the child. For those children that have both

autism and apraxia you want to make sure the ABA therapy is not to address the

motor planning impairments of apraxia it's highly inappropriate and again can be

detrimental.

> >

> > We do have one member that I know of in Minnesota who I know from there are

few others around her. I'll introduce the two of you in a private email because

I'm not sure if she wants her email on the web.

> >

> > So apraxia is a possibility, but good news is that while it's difficult to

know for sure with a child under 3 if it's apraxia unless there is oral apraxia

as well, your child is almost 4 years old! My son was diagnosed with apraxia by

professionals that were able to diagnose him from the first time they met him.

I'm a huge believer in second opinions and I didn't tell each professional what

the other said I just presented my son and they evaluated him. I find an

" evaluation " of " receptive disorder " to be a waste of money, " receptive

disorder " to be an assault to your child as they are not able to come up with a

true diagnosis for the " expressive disorder " and " articulation disorder " to be a

joke as your child is essentially nonverbal at almost 4 years old! Are they

kidding?!! AND- if it ends up your child is apraxic- articulation therapy you

have to be very careful with as well too much of that can lead to stutterin g

when they do begin to speak. So again it's like you are dealing with people that

read about apraxia in a textbook and not dealing with it in real life. That's

not what I would want! Is it possible to travel to seek an evaluation from

someone from say Wisconsin or Michigan? Are either of those states close at all

to you as I don't know in any other direction around you where you should turn.

I just wrote the other day if you can afford to it's worth even driving for

hours and getting a hotel room or flying to secure an appropriate diagnosis for

appropriate therapy and placement and your story is a perfect example why. I

mean how much longer are they going to string this along before they start

really helping your son?

> >

> > Since you note sensory issues, if there is a speech delay together with

" soft signs " such as sensory integration dysfunction, hypotonia / low tone

and/or motor planning deficits in the body -that all points to the diagnosis of

apraxia. Please share what symptoms of autism your child has as I didn't read

any in this message. Sensory integration dysfunction is found co existing in

autism, but it's also found co existing in apraxia, in those with traumatic

brain injury, and standing alone. And if sensory integration dysfunction wasn't

common Jockey and other companies wouldn't have gone " tag-free " on the t-shirts.

There are therapies for sensory issues just as there are for all the other

symptoms you may be noting.

> >

> > But again the one " diagnosis " I would refuse to have on my child's record

unless they could prove it would be the receptive disorder. Disorder is

different than delay- I wouldn't even allow receptive delay without proof- they

already are making claims that your child has an impairment of his receptive

ability and he's not even 4 and properly diagnosed yet! Shame on them!!! Please

don't let them shove your child into that box just yet without seeking an

evaluation with professionals who have knowledge in multifaceted communication

impairments and outside of just autism. Some of them once they rule out hearing

impairment and autism figure -oh he'll be fine up to a certain age and then

sometime after 3 they start assuming receptive and learning disabilities due to

the expressive delay. For those under the age of 3 that are late talkers, 75% of

them are just that- children with developmental delays in speech which means

they will start talking fine soon but just a bit later and probably with or

without therapy. But if your child is apraxic and in that other 25% you want to

know. And you want to provide your child with the benefit of the doubt when it

comes to receptive and cognitive ability at this point.

> >

> > Your child may be dealing with issues beyond others of his age, and he is

going to need you to learn (in your free time in between laundry and all) how to

advocate for him -be his voice. Stand up for him and say " How do you know my son

has a receptive disorder when you can't even tell me why he's almost 4 years old

and not talking?! " " I want to know what testing you used to determine that "

> >

> > I have found that those professionals that either are knowledgeable about

working with apraxic children, and when that's not possible, those professionals

that are knowledgeable about working with the deaf or hearing impaired

population to be better at evaluating those children with apraxia, or apraxia

and autism. You want to again secure an appropriate diagnosis for appropriate

therapy and placement. Those that work with the hearing impaired population

don't have preconceived negative views on expressive impairments. Just because a

child can't talk doesn't mean they don't think -have feeling -can't listen and

understand others talking about them like they aren't in the room.

> >

> > It's wise to provide some sort of alternative communication- even simple

sign or simple picture exchange (think of a menu at a restaurant..if you were in

another country and couldn't say " pizza " you would know how to point to that

photo of pizza....but don't take my word for that because when I was in Paris I

only wanted a slice and got a whole pie- but you get the point) I HIGHLY

recommend the iPad if you can afford one as they have pegged your child with a

" receptive impairment " and the iPad can prove them wrong. Please read this

http://www.facebook.com/topic.php?topic=15792 & post=106478 & uid=115029735601#post1\

06478 which is on our group's public facebook page http://www.apraxia.org

> >

> > Have you read The Late Talker?

http://www.cherabfoundation.org/latetalkerbook/ If not that is highly

recommended.

> >

> > Try to find other parents, again I'll introduce you to one. I plan on

putting together a new support page as there are some awesome parents that want

to start supports groups and I want to get info up on how to get that started.

It seems that you need that in your area!

> >

> > Just remember -your child is still preschool and even if he was school age

there is so much hope for all children with communication impairments- we read

about " miracles " every single day. The most important things for speech delay is

appropriate evaluation to secure appropriate therapy and if needed for preschool

(in 6 months) placement with an IEP. After that you may want to look as well

into nutritional methods we find that help which would be the essential fatty

acids from fish oils

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments and essential amino acids and

nutrients from NV

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-treatment-of-speech-impairments/

> >

> > So in summary I would highly recommend the following.

> >

> > 1. If you have not yet read The Late Talker book -you can start reading it

online- go to Google Books and search. That will be a great resource. If you can

afford the ten dollars it will be worth getting a copy as there are sample

letters etc. in there that will help you advocate and the free online version

has parts cut out. I co authored that book with neurodevelopmental pediatrician

Dr. Marilyn Agin and international journalist Malcolm Nicholl who also co

authored the book The LCP Solution with Dr. Stordy (about fish oils)

> >

> > 2. I put reading the book first because if you do have insurance that book

will help -and I have more to help in this area if you need help in securing

therapy through insurance. I have some here also from our apraxia.org facebook

page http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

> >

> > 3. A private evaluation with the following professionals that have knowledge

about VARIOUS multifaceted communication impairments....not just autism-

preferably those that are recommended by others

> > A. Speech language pathologist

> > B. NeuroMD (pediatric neurologist or developmental pediatrician)

> > C. Occupational therapist if the neuro and/or SLP suspect sensory and tone

issues (you may not be aware of the signs as you are a newbie and they may be

subtle at this age)

> >

> > 4. Find local support either in person or online.

> >

> > 5. Look into essential nutrients from fish oils and NV- here's info to share

with your child's doctor (once you find one!) about NV

http://pursuitofresearch.org/find-a-professional/

> >

> > At your child's age he should have an IEP. It's good to have a " hero " (SLP,

neuroMD) on the outside of the system to help set and or approve the 3, 6 and

yearly goals in the IEP.

> >

> >

> > I know this may all sound overwhelming -but you don't have to know

everything at once and it will be OK. Most in our group have children that are

mainstreamed by kindergarten and are good students. I have a few messages here

again at our apraxia.org group for new members.

> >

> > http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

> >

> > or

> >

> > http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

> >

> > The good news is that you are out searching for your child which tells me

that he's going to be just fine. We just have to get you on the right track for

what to do next now- and some of the above will be a start to that! There is SO

much hope for a verbal and mainstreamed future!

> >

> > Best!

> >

> >

> > =====

> >

[Guest guest]

Hi !

Both and another parent I put her in touch with in her state are not in

the same situation as you and I where we have knowledgeable help that is local.

The other parent homeschooled for awhile and is now having a nightmare in the

public school. Like you the other parent has a medical background and her son

is now 8 years old -so she's been searching for awhile -just not the same

knowledge level locally there unfortunately.

For I highly recommended she travel to find support that can help her

advocate for her child and she's not far from Wisconsin -a bit further from

Michigan but willing to travel anywhere for help.

If there are parents from Wisconsin please share names of SLPs MDs and or

support groups either here or email me at lisa@... so I can pass them on.

I've already shared with her support sources in Michigan but if you'd like to

share more that would be great.

I know one of your goals is to help raise awareness about apraxia -I'm so

sure that would love to speak in private with you as well! I've already

told and the other parent I would help them start a support group in

Minnesota.

Right now we have 2 parents in this state with the same problem due to such

extreme lack of awareness there- the good news is that they are now talking.

That's a start to awareness. So if you are from Minnesota and can share (or you

are a!) knowledgeable SLPs and MDs- PLEASE do share! And if you are from there

and need help -email me lisa@... and I will put you together with these

other parents.

=====

[Guest guest]

you can also search through http://www.aappspa.org

>

> it is clear today that my son's diagnosis of apraxia was correct but a

few years ago we were told as well after they ruled out hearing problems that it

may be autism as if there were no other reasons for his speech delay. I do hope

that like and me you have an slp near you that is wonderful. The late

talker book was and still is a huge help for understanding how to help my little

boy. My other advice is don't be like me and wait forever to start fish oils and

NV. Our son's pediatrician approved both, but there is a find a professional

page here http://pursuitofresearch.org/find-a-professional/ My 6 year old DS was

in therapy for months prior with little progress to fish oils and then years

later at Christmas we started him on NV and we are filled with joy that he is

now speaking in sentences and reading books on level for kindergarten! I don't

like the internet much and it was out of my comfort zone to even join an online

group, but I shudder to think where my son would be without all I learned in

this group that I didn't learn anywhere else. Kate

>