to Lynn -Need placement and diagnosis help for a 3 year old in South Florida

[Guest guest]

Hi Lynn!

I don't get to read every message posted here and there are around 10

moderators so I'm sorry I missed yours and nobody pointed it out to

me (or that nobody else answered other than me) I have your message

posted below so people can see it again. The truth is that there are

some messages that I never answer but I can honestly say that I try

to answer all that come here (which I prefer) and private.

No offense to any of the pediatric neurologists or developmental

pediatricians in the South Florida area who may be wonderful, but

based on the numbers of misdiagnosed children I've heard about and

going by what they show as autism on the news) it does appear that in

our area there is still much ignorance. Actually add to that your

message!! Please offlist provide me with this neurologist's name so

I can have someone call him. He's so out there in misinformation

that I'm suprised he hasn't fallen in the ocean yet.

My family lived in both NY and NJ when my kids were born and up till our " baby "

Tanner entered kindergarten at 6 so we saw all our neuros there prior

to moving and (thankfully) never had to take either of my boys to one

since moving to South Florida 6 years ago. But if I had to I would

take them to see Kimmie Valin's neuro since she highly recommends him

as does Dr. Renai Jonas who I highly respect. Kim posted a few years

ago (archive below) that neurologist Dr. L Baquero had a heart

attack-but I did find his information online so I do hope that he's

OK as I know he would only be 48 years old now?

L Baquero, MD

Child Neurology Associates

7070 W Palmetto Park Rd

Boca Raton, FL

(561) 451-3481

For sure I'd call Dr. Renai Jonas too and have her evaluate your child in

speech and have her recommend a neuro as she is all of the following

and more -wonderful, kind, knowledgeable, respected, open minded,

innovative. I believe she is the one that recommended Dr. Baquero to

Kim. Kim if you are reading this please let us know.

contact for Dr. Renai Jonas

Jonas Therapy Associates

130 Pine Circle

Boca Raton, FL 33432

561 361 0307

Fax: 561 393 6903

(Renai used to be on Palmetto Park Rd too!)

Quote from Renai when we presented at the SSA meeting in Washington

DC about protecting the rights of the verbal disabled.

" In the area of apraxia, not being able to talk affects ones ability

to practice and learn in the same way as ones peers. Apraxia

creates a developmental delay that lasts longer, however the child

can catch up and can even surpass his peers. "

Dr. Renai Jonas (561) 361 - 0307.

Early Steps Program, Palm Beach County, FL Adjunct Professor,

Florida Atlantic University

Renai will be able to put together a therapy plan. While most of our

children use simple PECS or simple sign -not that is not the therapy

of choice for apraxia and yes most apraxic children end up verbal.

Perhaps this neurologist's experience is that most apraxics don't

talk because he diagnosis them as autistic?

About your child's placement- just say no. I know that Renai will be

able to help you in this area too. One thing I can tell you is that

if your child is not autistic and was just given the " PDD " label

because of a clueless neuro -then your child is not in appropriate

placement. Any apraxic child I know schooled with autistic children

doesn't end up mainstreamed. If you have a positive example that

contradicts this please do let us know. Again -if your child is not

autistic get him out of that placement ASAP!

PS -the latest example of " autism " they just showed on the local news

was a child that had " severe mental retardation and autism " but most

of the time she was just referred to as autistic.

Kim's daughter has been on the fish oils and in appropriate speech

and occupational therapy and last I heard is talking fine and is

mainstreamed in public school. The following is an update from 3

years ago which is around when many of the older members still felt

comfortable posting here -and you can see how well her daughter is

doing even then. Kim and family had to move up to Philly so she no

longer runs the Late Talker support group and nobody took it over -

but she's still a member here. Like most " old timers " however(Kim

you are now an old timer) once your child is more in the norm- many

get busy with " normal " stuff and on top of that many don't understand

the extremes newly diagnosed parents believe they have to do today -

many of the children throughout the years here never had any dietary

changes and ended up in the norm - so they don't relate and don't

post.

Newly diagnosed Dyspraxia in Seattle

kimmiev@...

Mon Dec 19, 2005 9:16 am

Hi Joni:

Welcome to you and Gracie. I love her name! You have found a wonderful

place. When my daughter, Blythe, was dx with oral motor apraxia at 18

months by

her neurologist I felt so alone and lost. Had never ever heard of

apraxia. My

daughter was born via c-section due to her being a large baby (over 9

lbs. 21

inches). She was fine, no problems. We noticed that she slept a lot

and

even slept through the night since the day she was born. She did not

hit her

milestones on time and up until she was 9 months, the pediatrician

just passed

it

off as all babies can hit milestones at different ages -- some early,

some

late. NOW, after reading The Late Talker Book and finding this group,

I know

the signs were there all along and had I known about apraxia I

probably could

have dx my daughter! I think we all feel we should have honorary

degrees in

Speech pathology after traveling down this road.

My daughter will be 5 on January 17. She is also developmental delay

and

functioning at a 3 year old level. It's a tough road to travel, but I

promise

you

there will be rainbows a long the way. My daughter finally talks

(since

August 2004) and talks and talks. Strangers understand her,

grandparents call

her

on the telephone to chat and she loves playing " teacher " to her dolls

and

stuffed animals! She has had lots of therapy since she was 12 months

of age and

she continues to get lots of therapy. All of the therapists, doctors,

teachers have all said Blythe is just " so classic apraxic " . She has

been in

early

intervention since 12 months with all of the st, ot, pt and now in

the preschool

program.

Yes, there does seem to be lots of boys - more than girls - all boys

in her

class.

You are in good hands. helped me tremendously one day when I

finally

found her group. Please get the book, The Late Talker, she co-

authored. It is

truly a must have book!!!

Best of luck to you and Gracie and please feel free to email me off

line if

you wish.

Kim Vallin

Sad News

Tue Nov 11, 2003 5:31 pm

kimmiev@...

Just wanted to let the group know that Dr. Baquero, pediatric

neurologist in south Florida, age 43, suffered a heart attack on

Saturday

morning. He

is in the intensive care unit at Delray Medical Center. Things are

not going

well. He is unable to receive visitors or phone calls. His office is

closed

until January. Cards and get well wishes can be sent to belle at

his

office. Please keep him in your thoughts and prayers. I will keep the

group

posted.

Kim Vallin

Late Talkers Network

Message I sent to Laimi about how schools for the hearing impaired

are wonderful for apraxic children.

(Laimi's in Miami?)

Re: schools for hearing impaired and children who hear

Laimi -it's cool that this mom has this program but an apraxia

program in a hearing impaired school? It's kind of like having an

Association Method school near you. That's like a dream that is a

reality to all but a few -we all wish we had one near us. Many of

the hearing impaired schools are funded in part by donations for the

hearing impaired and deaf -apraxia can get in there because there is

a percentage of hearing impaired children with apraxia. Here's two

lists of hearing impaired schools. (Both methods) For sure call the

school in your area and see if they have an " apraxia program " but

just because they don't doesn't mean they can't help your child.

Most of our kids have done fine in many types of schools.

http://www.deafconnect.com/deaf/school.html

http://www.oraldeafed.org/schools/index-list.html

You are aware in Florida of the McKay Scholarship right?

http://www.floridaschoolchoice.org/information/mckay/ Unlike other

states I found a number of private schools you may want to check out

as with Mc Kay as a parent it's your choice where your child receives

his or her education -public or participating private. Since I

didn't see any schools specifically for the hearing impaired close to

you I looked to see what there was in the way of schools that accept

hearing impaired kids. Don't know any of them -but here's a few

possibly near you.

http://www.atlantisacademy.com/

http://www.highpointacademy.com/

http://www.mariancenterschool.org

http://www.allisonacademy.com/

If you go to Mc Kay you'll find a TON of private schools to check

out -way more than the few above! (but again just listed them because

all of the above I believe accept hearing impaired children in your

area)

Did you call Dr. Renai Jonas? 561 361 0307 She may have some

recommendations for you even though she's a consultant to the Palm

Beach County school system. I know for sure this school is one she

supports http://www.weissschool.com/

~~~~~~~~~~~and here's your last message

Re: I need Info

---

Hi ,

Since you are in South Florida, as we are, do you know of a good dev

pediatrician or pediatric neuro. in this area that are knowledgable

about apraxia and speech impairments ?

we went to the Dan marino center in miami last year and the

neurologist there said " you don't want apraxia because kids like that

don't wind up talking " !!! do you believe that nonsense?!? That leads

me to agree with other posts here that neurologists know squat about

speech disorders! When I told our SLPs about this they said he could

not be more wrong!!! So when i asked the neuro, what's the diagnosis,

he said " speech disorder " and PDD-NOS (for lack of what else to say!)

but couldn't say what kind. He just told us to concentrate on speech

therapy that emphasized PECS. ly, I don't think my son needs

that , he has some words and close word approximations---they have

the communication boards at his preschool. He had an MRI and EEG and

blood/urine tests which were normal, he wanted us to come back this

month, but frankly, i don't see the point! I made the mistake of

showing him the school eval results which of course showed some low-

normal scores,so he seemed to think borderline MR!!! do you believe

that!!! I told him the school has underestimated his abilities and he

finally said that's possible and let's see him in a couple of months.

He is starting his 2nd year in ESE. He is in the autism class

because when he had his eval last Dec, school psych thought he'd be

best served there because of his eval results and it's a smaller

class size. I have issues with those stupid evals! Early steps girls

said he'd get more attention in the autism class--they said the VE

classes are crowded and kids in there have cognitive problems. He has

speech services there but as a small group. He had his regular

teacher over the summer as well, and even she said he's come a along

way! But now for fall, they changed the teacher and SLP on us, new

one seems nice so I'll have to monitor the situation. and maybe the

new teacher will be even better than the other.... Don't understand

why he wouldn't stay with the same teacher, they told me the

assigments are random....

We started the ProEFA in April and over the past months, he really

has made progress---he gets excited and points and labels things out

to us, on the Disney channel, out shopping, and he loves the leap

frog DVD Letter factory--he sounds out all the letters. SLP is

working with the Kaufman cards with him and he says the words, or

close approx. on command---SLp says he wants to talk and communicate,

he's very motivated! He leaves the sound off the end of words,

like " boa " for boat but he can say the letter " t " on its own, and I

have heard him say " eat " . He also loves his music CDS and repeats the

sounds/words to those as well.

I could go on and on talking here but will stop for now

I have learned alot here, and am grateful for this group!

Any advice, ?

Thanks, Lynne and , age 3.5

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