Re: i need help with diagnosis/treatment/etc

[Guest guest]

Any chance you can locate a BCBA familiar with a verbal behavior approach?

That's what I would do.

>

> Please help! My son has been in speech therapy since he was 18 mths old. He

didn't walk until he was 19 mths old. He started saying a few words around a

year old. He could say " mama " , " dada " , " light " , " flair " (our dog), " hot, hot,

hot " (for the heater), " bye-bye " and a few more random things. He seemed to be

picking up words fairly well. When he didn't walk for so long, we had him

evaluated for PT (the late walking was my initial concern!). A few months

before, and right after he started walking, he started losing the words he had

aquired. His therapists all assurred me that working on a gross motor skill like

walking would take over for a while, but that he would get the words back, plus

some. However, he is now 34 mths old and can only say " dada " (for daddy, pop,

pawpaw, and most other men), " uh-oh " , " uh-uh " (like no..), and he makes

approximations of a few more words. He says " ou " for out, " own " for down, " a-a "

for mama (and granny and nana, and most other women). His word for yes is " oww " .

He is extremely bright and social. He communicates well with other means. He has

several signs, and can get his point across rather nicely...With all of that

said, when I started researching apraxia, I felt like someone hit me in the

chest with a brick! This is my ! I was excited (I know that sounds crazy,

but when you don't know what you're facing, any information is exciting!) and

took all of my new found knowledge to his very young, very inexperienced speech

therapist. I told her I thought he has apraxia. She didn't agree and said that

apraxia is hard to diagnosis if the child isn't talking yet. She says that

apraxia is more about HOW speech sounds rather than whether there is speech or

not...She said that what does say comes out sounding correct (even though

at the time all he was saying was dada and uh-oh). He now has more vowel only

word approximations. Soooo, my question is, how to I approach the therapist

again, and how do I get the help I need, living in a very small rural community

with not a lot of offered services. It is very frustrating knowing that there is

something wrong, but the " professionals " don't really agree. Also, does this

sound like it is even apraxia to anyone? Am I on the right track? I have put in

for an appt with a developmental peditrician, but it takes months to get the

appt. I feel like I'm losing precious time!

> Thanks for any input in this matter.

> Jill Chaney

>

[Guest guest]

Thanks for the reply, but I'm sorry, what is a BCBA?

> >

> > Please help! My son has been in speech therapy since he was 18 mths old. He

didn't walk until he was 19 mths old. He started saying a few words around a

year old. He could say " mama " , " dada " , " light " , " flair " (our dog), " hot, hot,

hot " (for the heater), " bye-bye " and a few more random things. He seemed to be

picking up words fairly well. When he didn't walk for so long, we had him

evaluated for PT (the late walking was my initial concern!). A few months

before, and right after he started walking, he started losing the words he had

aquired. His therapists all assurred me that working on a gross motor skill like

walking would take over for a while, but that he would get the words back, plus

some. However, he is now 34 mths old and can only say " dada " (for daddy, pop,

pawpaw, and most other men), " uh-oh " , " uh-uh " (like no..), and he makes

approximations of a few more words. He says " ou " for out, " own " for down, " a-a "

for mama (and granny and nana, and most other women). His word for yes is " oww " .

He is extremely bright and social. He communicates well with other means. He has

several signs, and can get his point across rather nicely...With all of that

said, when I started researching apraxia, I felt like someone hit me in the

chest with a brick! This is my ! I was excited (I know that sounds crazy,

but when you don't know what you're facing, any information is exciting!) and

took all of my new found knowledge to his very young, very inexperienced speech

therapist. I told her I thought he has apraxia. She didn't agree and said that

apraxia is hard to diagnosis if the child isn't talking yet. She says that

apraxia is more about HOW speech sounds rather than whether there is speech or

not...She said that what does say comes out sounding correct (even though

at the time all he was saying was dada and uh-oh). He now has more vowel only

word approximations. Soooo, my question is, how to I approach the therapist

again, and how do I get the help I need, living in a very small rural community

with not a lot of offered services. It is very frustrating knowing that there is

something wrong, but the " professionals " don't really agree. Also, does this

sound like it is even apraxia to anyone? Am I on the right track? I have put in

for an appt with a developmental peditrician, but it takes months to get the

appt. I feel like I'm losing precious time!

> > Thanks for any input in this matter.

> > Jill Chaney

> >

>

[Guest guest]

Jill,

I know that feeling, and you are the best person to know what is going on with

! I had the same problem with my son, no one want to lable a child that

younf with apraxia but lable mean nothing the right treatment is what is needed

I went thru 4 therapist before I found the one who care and helped me and my

son. You have to fight and keep pushing until you get what u need for your son.

Try the local school system and get an IEP team and have him evaled. If that

does not work call any and every SLP and tell them what you belive is the case

and you will hopefull get a listening ear.

Good luck

Zoey

Sent on the Now Network™ from my Sprint® BlackBerry

[ ] i need help with diagnosis/treatment/etc

Please help! My son has been in speech therapy since he was 18 mths old. He

didn't walk until he was 19 mths old. He started saying a few words around a

year old. He could say " mama " , " dada " , " light " , " flair " (our dog), " hot, hot,

hot " (for the heater), " bye-bye " and a few more random things. He seemed to be

picking up words fairly well. When he didn't walk for so long, we had him

evaluated for PT (the late walking was my initial concern!). A few months

before, and right after he started walking, he started losing the words he had

aquired. His therapists all assurred me that working on a gross motor skill like

walking would take over for a while, but that he would get the words back, plus

some. However, he is now 34 mths old and can only say " dada " (for daddy, pop,

pawpaw, and most other men), " uh-oh " , " uh-uh " (like no..), and he makes

approximations of a few more words. He says " ou " for out, " own " for down, " a-a "

for mama (and granny and nana, and most other women). His word for yes is " oww " .

He is extremely bright and social. He communicates well with other means. He has

several signs, and can get his point across rather nicely...With all of that

said, when I started researching apraxia, I felt like someone hit me in the

chest with a brick! This is my ! I was excited (I know that sounds crazy,

but when you don't know what you're facing, any information is exciting!) and

took all of my new found knowledge to his very young, very inexperienced speech

therapist. I told her I thought he has apraxia. She didn't agree and said that

apraxia is hard to diagnosis if the child isn't talking yet. She says that

apraxia is more about HOW speech sounds rather than whether there is speech or

not...She said that what does say comes out sounding correct (even though

at the time all he was saying was dada and uh-oh). He now has more vowel only

word approximations. Soooo, my question is, how to I approach the therapist

again, and how do I get the help I need, living in a very small rural community

with not a lot of offered services. It is very frustrating knowing that there is

something wrong, but the " professionals " don't really agree. Also, does this

sound like it is even apraxia to anyone? Am I on the right track? I have put in

for an appt with a developmental peditrician, but it takes months to get the

appt. I feel like I'm losing precious time!

Thanks for any input in this matter.

Jill Chaney

[Guest guest]

It's a Board Certified Behavior Analyst. You can see who is in your area by

going here: www.bacb.com

> > >

> > > Please help! My son has been in speech therapy since he was 18 mths old.

He didn't walk until he was 19 mths old. He started saying a few words around a

year old. He could say " mama " , " dada " , " light " , " flair " (our dog), " hot, hot,

hot " (for the heater), " bye-bye " and a few more random things. He seemed to be

picking up words fairly well. When he didn't walk for so long, we had him

evaluated for PT (the late walking was my initial concern!). A few months

before, and right after he started walking, he started losing the words he had

aquired. His therapists all assurred me that working on a gross motor skill like

walking would take over for a while, but that he would get the words back, plus

some. However, he is now 34 mths old and can only say " dada " (for daddy, pop,

pawpaw, and most other men), " uh-oh " , " uh-uh " (like no..), and he makes

approximations of a few more words. He says " ou " for out, " own " for down, " a-a "

for mama (and granny and nana, and most other women). His word for yes is " oww " .

He is extremely bright and social. He communicates well with other means. He has

several signs, and can get his point across rather nicely...With all of that

said, when I started researching apraxia, I felt like someone hit me in the

chest with a brick! This is my ! I was excited (I know that sounds crazy,

but when you don't know what you're facing, any information is exciting!) and

took all of my new found knowledge to his very young, very inexperienced speech

therapist. I told her I thought he has apraxia. She didn't agree and said that

apraxia is hard to diagnosis if the child isn't talking yet. She says that

apraxia is more about HOW speech sounds rather than whether there is speech or

not...She said that what does say comes out sounding correct (even though

at the time all he was saying was dada and uh-oh). He now has more vowel only

word approximations. Soooo, my question is, how to I approach the therapist

again, and how do I get the help I need, living in a very small rural community

with not a lot of offered services. It is very frustrating knowing that there is

something wrong, but the " professionals " don't really agree. Also, does this

sound like it is even apraxia to anyone? Am I on the right track? I have put in

for an appt with a developmental peditrician, but it takes months to get the

appt. I feel like I'm losing precious time!

> > > Thanks for any input in this matter.

> > > Jill Chaney

> > >

> >

>

[Guest guest]

Thanks Zoey! You're right. I need to be more assertive and let these people know

that I know my son better than anyone. I've always been very quiet and one to go

along with what the " professional " thinks. But since having , I have had to

step outside of that comfort zone many times. It's amazing how much the

" professionals " (some of them) really don't know anything about what is going on

with . He doesn't fit in a neat little box, so it's just " well, we don't

know " or " lets wait and see " ....I know we've all probably heard that one! When

turns 3 he will be referred to the local school district and will get a

new speech therapist. I just really want to be prepared to tell her specifically

what to look for and what to work on....I did find out today that his appt with

the developmental ped/testing center is July 21st, so I'm excited about that!

Again, thanks for the feedback and to all for the great group!

________________________________

From: " zoeyar8@... " <zoeyar8@...>

Sent: Tuesday, May 19, 2009 12:20:51 PM

Subject: Re: [ ] i need help with diagnosis/treatment/etc

Jill,

I know that feeling, and you are the best person to know what is going on with

! I had the same problem with my son, no one want to lable a child that

younf with apraxia but lable mean nothing the right treatment is what is needed

I went thru 4 therapist before I found the one who care and helped me and my

son. You have to fight and keep pushing until you get what u need for your son.

Try the local school system and get an IEP team and have him evaled. If that

does not work call any and every SLP and tell them what you belive is the case

and you will hopefull get a listening ear.

Good luck

Zoey

Sent on the Now Network™ from my Sprint® BlackBerry

[childrensapraxiane t] i need help with diagnosis/treatment /etc

Please help! My son has been in speech therapy since he was 18 mths old. He

didn't walk until he was 19 mths old. He started saying a few words around a

year old.. He could say " mama " , " dada " , " light " , " flair " (our dog), " hot, hot,

hot " (for the heater), " bye-bye " and a few more random things. He seemed to be

picking up words fairly well. When he didn't walk for so long, we had him

evaluated for PT (the late walking was my initial concern!). A few months

before, and right after he started walking, he started losing the words he had

aquired. His therapists all assurred me that working on a gross motor skill like

walking would take over for a while, but that he would get the words back, plus

some. However, he is now 34 mths old and can only say " dada " (for daddy, pop,

pawpaw, and most other men), " uh-oh " , " uh-uh " (like no..), and he makes

approximations of a few more words. He says " ou " for out, " own " for down, " a-a "

for mama (and granny and nana, and most

other women). His word for yes is " oww " . He is extremely bright and social.. He

communicates well with other means. He has several signs, and can get his point

across rather nicely...With all of that said, when I started researching

apraxia, I felt like someone hit me in the chest with a brick! This is my !

I was excited (I know that sounds crazy, but when you don't know what you're

facing, any information is exciting!) and took all of my new found knowledge to

his very young, very inexperienced speech therapist. I told her I thought he has

apraxia. She didn't agree and said that apraxia is hard to diagnosis if the

child isn't talking yet. She says that apraxia is more about HOW speech sounds

rather than whether there is speech or not....She said that what does say

comes out sounding correct (even though at the time all he was saying was dada

and uh-oh). He now has more vowel only word approximations. Soooo, my question

is, how to I approach

the therapist again, and how do I get the help I need, living in a very small

rural community with not a lot of offered services. It is very frustrating

knowing that there is something wrong, but the " professionals " don't really

agree. Also, does this sound like it is even apraxia to anyone? Am I on the

right track? I have put in for an appt with a developmental peditrician, but it

takes months to get the appt. I feel like I'm losing precious time!

Thanks for any input in this matter.

Jill Chaney

[Guest guest]

thank you, i'll check that out.

________________________________

From: Soliday <elizabethsoliday@...>

Sent: Tuesday, May 19, 2009 4:01:58 PM

Subject: [ ] Re: i need help with diagnosis/treatment/etc

It's a Board Certified Behavior Analyst. You can see who is in your area by

going here: www.bacb.com

> > >

> > > Please help! My son has been in speech therapy since he was 18 mths old.

He didn't walk until he was 19 mths old. He started saying a few words around a

year old. He could say " mama " , " dada " , " light " , " flair " (our dog), " hot, hot,

hot " (for the heater), " bye-bye " and a few more random things. He seemed to be

picking up words fairly well. When he didn't walk for so long, we had him

evaluated for PT (the late walking was my initial concern!). A few months

before, and right after he started walking, he started losing the words he had

aquired. His therapists all assurred me that working on a gross motor skill like

walking would take over for a while, but that he would get the words back, plus

some. However, he is now 34 mths old and can only say " dada " (for daddy, pop,

pawpaw, and most other men), " uh-oh " , " uh-uh " (like no..), and he makes

approximations of a few more words. He says " ou " for out, " own " for down, " a-a "

for mama (and granny and nana, and

most other women). His word for yes is " oww " . He is extremely bright and

social. He communicates well with other means. He has several signs, and can get

his point across rather nicely...With all of that said, when I started

researching apraxia, I felt like someone hit me in the chest with a brick! This

is my ! I was excited (I know that sounds crazy, but when you don't know

what you're facing, any information is exciting!) and took all of my new found

knowledge to his very young, very inexperienced speech therapist. I told her I

thought he has apraxia. She didn't agree and said that apraxia is hard to

diagnosis if the child isn't talking yet. She says that apraxia is more about

HOW speech sounds rather than whether there is speech or not...She said that

what does say comes out sounding correct (even though at the time all he

was saying was dada and uh-oh). He now has more vowel only word approximations.

Soooo, my question is, how to I

approach the therapist again, and how do I get the help I need, living in a

very small rural community with not a lot of offered services. It is very

frustrating knowing that there is something wrong, but the " professionals " don't

really agree. Also, does this sound like it is even apraxia to anyone? Am I on

the right track? I have put in for an appt with a developmental peditrician, but

it takes months to get the appt. I feel like I'm losing precious time!

> > > Thanks for any input in this matter.

> > > Jill Chaney

> > >

> >

>

[Guest guest]

Hi, I’m new to the list, and I wanted to introduce myself as a parent with a

child who has apraxia. My name is a, and I’m a stay at home and writer.

My son Al is 3 years old, and was diagnosed with 1) Congenital Encephalopathy

manifesting as developmental delays, 2) Aphasia manifesting as a moderate

language delay and apraxia, 3) Developmental Coordination Disorder manifesting

as delayed fine motor.

My son has been receiving speech therapy since June of 2008, and at first, the

ECI speech therapist thought he was a stubborn child/late talker. I honestly

thought the same. We had no progress with her, and she left ECI after only

seeing him twice. Alastair’s new speech therapist thought said he wasn’t a

stubborn child and noticed groping around his mouth and wanted her boss to see

him and see if he had apraxia. Both thought he had apraxia, and proceeded with

his therapy on that assumption. In February, the developmental pediatrician

confirmed the diagnosis, and in April he took a neurological/developmental test

to make sure that he didn’t have other problems. It turns out that he does

have some fine motor issues and may be at risk for dysgraphia, dyslexia, and

AD/HD. He is currently in the PPCD program in our school district, and he has

group therapy with three other kids twice a week and attends class for two hours

a day, five days a week.

I wanted to let Jill know that she should take to a developmental

pediatrician, and make sure that that doctor has a good grasp of what apraxia

is. My son has some very clear pop outs as well, and he has gained and lost

words. The past two months he has picked up a lot more sounds, but his groping

has become more obvious because he is trying hard to make himself understood.

He speaks in sentences with proper grammar, and while a lot of the words are

garbled, I can understand him. My point is, trust your instincts and find a

doctor or speech pathologist with experience with apraxia and get him tested for

other neurological problems. With late walking, he could have fine or gross

motor problems, and you should get a head start on those problems as soon as

possible (assuming they are, but they could be and it is better to check).

At any rate, I looked forward to any hints anyone can give with at home

therapies as well. We will have to go to private therapy this summer, so that

he doesn’t lose any progress since he doesn’t qualify for summer extension.

I’m working on some cards to use with my son to help him with words.

Sincerely,

a P. Broussard

[Guest guest]

Thanks a! He has an appt with a developmental ped. at Arkansas Children's

Hospital on July 21st.

That day honestly can't get here quick enough! Someone mentioned in an earlier

post that a diagnosis is not as important to me as getting him the proper

therapy. I totally agree with that. I don't care if she doesn't agree with the

term, I just want her (the SLP) to try different approaches because obviously

what she's doing isn't working! I'm also looking forward to switching

therapists. We will switch at his 3rd birthday, July 13. He is getting much

better with his signing. Just this morning I was in the kitchen, and from the

living room he initiated a conversation by signing eat and drink to me. He was

ready for breakfast! It was precious! He has also started groping a lot more,

because he has so much more to say! Thanks for your help!

________________________________

From: a P. Broussard <spooky@...>

Sent: Wednesday, May 20, 2009 11:17:29 AM

Subject: RE: [ ] i need help with diagnosis/treatment/etc

Hi, I’m new to the list, and I wanted to introduce myself as a parent with a

child who has apraxia. My name is a, and I’m a stay at home and writer.

My son Al is 3 years old, and was diagnosed with 1) Congenital Encephalopathy

manifesting as developmental delays, 2) Aphasia manifesting as a moderate

language delay and apraxia, 3) Developmental Coordination Disorder manifesting

as delayed fine motor.

My son has been receiving speech therapy since June of 2008, and at first, the

ECI speech therapist thought he was a stubborn child/late talker. I honestly

thought the same. We had no progress with her, and she left ECI after only

seeing him twice. Alastair’s new speech therapist thought said he wasn’t a

stubborn child and noticed groping around his mouth and wanted her boss to see

him and see if he had apraxia. Both thought he had apraxia, and proceeded with

his therapy on that assumption. In February, the developmental pediatrician

confirmed the diagnosis, and in April he took a neurological/ developmental test

to make sure that he didn’t have other problems. It turns out that he does

have some fine motor issues and may be at risk for dysgraphia, dyslexia, and

AD/HD. He is currently in the PPCD program in our school district, and he has

group therapy with three other kids twice a week and attends class for two hours

a day, five days a week.

I wanted to let Jill know that she should take to a developmental

pediatrician, and make sure that that doctor has a good grasp of what apraxia

is. My son has some very clear pop outs as well, and he has gained and lost

words. The past two months he has picked up a lot more sounds, but his groping

has become more obvious because he is trying hard to make himself understood. He

speaks in sentences with proper grammar, and while a lot of the words are

garbled, I can understand him. My point is, trust your instincts and find a

doctor or speech pathologist with experience with apraxia and get him tested for

other neurological problems. With late walking, he could have fine or gross

motor problems, and you should get a head start on those problems as soon as

possible (assuming they are, but they could be and it is better to check).

At any rate, I looked forward to any hints anyone can give with at home

therapies as well. We will have to go to private therapy this summer, so that he

doesn’t lose any progress since he doesn’t qualify for summer extension.

I’m working on some cards to use with my son to help him with words.

Sincerely,

a P. Broussard

[Guest guest]

Jill,

Just thought I should mention that the diagnosis can be very important as to

whether your insurance company will pay for the therapy. If the doctor just

diagnoses speech delay and developmental delays without specifying a cause, then

the insurance may not pay for it.

Knowing what needs to be done makes it easier, too.

a

[Guest guest]

Hi a, 

I'm sure you've seen it, but this site has been really helpful for

us: www.apraxia-kids.org

There is alot of info to sort through, but well worth it. If you look under The

Apraxia Library, you will find TONS of info, including some recommendations on

things you can do at home.

HTH! 

: ) Marie  

[Guest guest]

That is a good point a. Fortunately so far I haven't had any problems with

my insurance paying anything. His speech and PT have all been paid for through

an EI voucher, based on his qualifications. We are now in the process of

applying for a medicaid program offered in AR called TEFRA. If he is approved

for this, (which he should based on his history) it will cover any needed

therapy as well. Also, our insurance has been very good to pay for testing, etc.

But down the road, that may become a factor. Hopefully once we see the dev. ped.

we will have a more concrete answer.

Thanks again!

________________________________

From: a P. Broussard <spooky@...>

Sent: Thursday, May 21, 2009 4:24:04 PM

Subject: RE: [ ] i need help with diagnosis/treatment/etc

Jill,

Just thought I should mention that the diagnosis can be very important as to

whether your insurance company will pay for the therapy. If the doctor just

diagnoses speech delay and developmental delays without specifying a cause, then

the insurance may not pay for it.

Knowing what needs to be done makes it easier, too.

a

[Guest guest]

Marie,

Yes, I have the apraxiakids site bookmarked on my computer. *grin*

a

[Guest guest]

Jill--you mentioned your son is 34mos? than you should be in the process of

transitioning to the school district program? that comes at 36mos. EI is like a

big comfortable blanket--at least it was when I was in it with my dd. They come

to your house for all therapy, everything my dd needed was covered including

orthotics, swim therapy, EI playgroups--we had it all in NY! Maybe what a

meant is that in EI a diagnosis is not as important as it is once you transsiton

into the SD program for preschool. My 7dd did not have an Apraxia dx until after

4yrs old. She has severe low muscle tone--so when we transitioned into PS--the

Physiatrist gave us a diagnosis of CP--pretty much to make sure that all her

therapies in the school district would not be questioned. No one asked for a

cause--no one will ask for that. But you need a script to cover all services

that the new SD will provide once he transitions out of EI. So a diagnosis from

a Ped Neurologist or Dev. Ped of Apraxia or Global Delays will ensure that he

gets all the services he needs.

We also have wonderful insurance that has covered everything outside of school

-but it wasnt until we transitioned that I even knew that Orthotics are covered

under DME (Durable Medical Equipment) for any insurance company. Under EI--I

never even had to ask insurance about coverage for anything.

>

> His speech and PT have all been paid for through an EI voucher, based on his

qualifications.

[Guest guest]

We are in the transition process right now to the school district. This does

worry me some. He also wears orthotics. They actually just ordered him a new

pair through EI since they knew he would be leaving soon. He wears the sure step

shoe inserts. You're right, I never thought about the cost of those, or how they

would be covered the next go around! The school district so far has given me the

impression that everything that is " recommended " by the therapists will be

covered by the district. We will wait and see. That is one reason I really want

to see the dev. ped. (he goes on 7/21), just so we can have something in

writing. You are right though, I've gotten very comfortable with EI and don't

know what to expect once we transition out into the wider world!!

Thanks!

________________________________

From: Maureen <mosense@...>

@...

Sent: Saturday, May 23, 2009 6:19:11 AM

Subject: [ ] Re: i need help with diagnosis/treatment/etc

Jill--you mentioned your son is 34mos? than you should be in the process of

transitioning to the school district program? that comes at 36mos. EI is like a

big comfortable blanket--at least it was when I was in it with my dd. They come

to your house for all therapy, everything my dd needed was covered including

orthotics, swim therapy, EI playgroups-- we had it all in NY! Maybe what a

meant is that in EI a diagnosis is not as important as it is once you transsiton

into the SD program for preschool. My 7dd did not have an Apraxia dx until after

4yrs old. She has severe low muscle tone--so when we transitioned into PS--the

Physiatrist gave us a diagnosis of CP--pretty much to make sure that all her

therapies in the school district would not be questioned. No one asked for a

cause--no one will ask for that. But you need a script to cover all services

that the new SD will provide once he transitions out of EI. So a diagnosis from

a Ped Neurologist or

Dev. Ped of Apraxia or Global Delays will ensure that he gets all the services

he needs.

We also have wonderful insurance that has covered everything outside of school

-but it wasnt until we transitioned that I even knew that Orthotics are covered

under DME (Durable Medical Equipment) for any insurance company. Under EI--I

never even had to ask insurance about coverage for anything.

>

> His speech and PT have all been paid for through an EI voucher, based on his

qualifications.