Re: A research report for apraxia students. Please help me learn more about this.

April 13, 2009

Hi My Trang and welcome! I do hope that many others have answered you already

-but here's my answers to your questions:

1. Please tell me about your personal story or stories that you face with

having or your child has with apraxia. Learning disabilities? Challenges?

My son was born in 1996 and diagnosed with apraxia in 1999. Back then there was

little to no support in person or on the web for apraxia. I started a support

group out of the Children's Specialized Hospital in Mountainside, NJ as

" Children's Apraxia Network " and within a year I realized that not all of the

members had young children, and not all were diagnosed with apraxia. For me the

hardest thing about raising a child with apraxia vs a child that has a condition

that is well documented is the ignorance from everyone. My oldest son Dakota

was also a late talker and needed speech therapy -but his issues went far beyond

speech as he was a traumatic delivery and in intensive care from birth with

severe head and neck injuries and with eating and even breathing problems. His

injuries were life threatening. In some ways even though apraxia is not life

threatening it was much more stressful for me with my apraxic son Tanner because

I didn't have the professionals comforting me and educating me on what I needed

to do to help Dakota -I had to argue and fight the ignorance every step of the

way.

I do believe that part of the ignorance spills into the myth that a speech

impairment means a learning disability. I do appreciate that historically

that's what has been the case. But in my experience " late talkers " have

phenomenal memories which if used to the advantage can make them excel as

students. For sure an apraxic child does not learn like the normal child. But

who am I to say that is a learning disability -I mean -they learn and they can

be top students. Multisensory ways of teaching for learning to talk and

learning in school seem to work. For Tanner I found fun competitions or rewards

made him reach for places academically that many professionals didn't believe

him capable. I have Tanner's story here

http://cherab.org/information/familiesrelate/letter.html

And update to the above is Tanner is still mainstreamed -plays football and

basketball (not special needs -mainstream and a good player) has lots of friends

-and mainly an A and B student. For all purposes he is " normal " Is his speech

100%? Not really- but he's still improving on it. In a recent conversation

Tanner decided he wanted to be an attorney and said " but what if my speech thing

got in my way? " And we talked about various strategies and Tanner decided that

he would represent kids with special needs (and not only for the reason you

think...he is afraid if he puts a murderer in jail they would " come after " him)

2. What solutions were considered and were succesful in helping the person

overcome or adapt to the his or her disability?

For preschool Tanner attended " out of district " placement at the Summit Speech

School for the hearing impaired. I have numerous theories as to why a school

for the hearing impaired may benefit a hearing apraxic child. But while nobody

can know for " sure " why this type of schooling has been working -it's been

working. Look at the Association Method schools as just one example " The DuBard

Association Method is a phonetic, multisensory teaching-learning strategy which

was designed for language-deficient children. It was devised originally by the

late Mildred McGinnis, a teacher at Central Institute for the Deaf in St. Louis.

It has been modified and expanded by Etoile DuBard and the staff of The

University of Southern Mississippi's DuBard School for Language Disorders during

40 years of the school's operation. "

http://www.usm.edu/dubard/practicum.html

Even before I was aware of this school/method my feeling was that if someone can

help Helen Keller to talk...they should be able to help Tanner.

I found intensive appropriate traditional speech therapy to be very beneficial

as well as occupation therapy. There is a huge amount of alternative therapies

I have explored as well with both my boys and can recommend a few of them as

well. For apraxia I highly recommend fish oils -but needs to be a specific

omega 3/6 formula for best results. May want to read this

http://www.cherab.org/information/dietaryeffects/Englemed.html If you read The

Late Talker book we outline quite a few multisensory therapies in there too.

3. What solutions were considered and failed?

For apraxia the one solution I never considered nor approved of was a behavioral

approach which our town preschool tried with Tanner and it was not only

ineffective but cruel. This is probably for me anyway the main reason that I'm

upset about the number of apraxic children being misdiagnosed today as autistic

as ABA is one of the well known methods for that condition. We know both from

this group as well as professionals that quite a few children are being

misdiagnosed as autistic -possibly as high as 30 to 40% of children diagnosed as

autistic. Then there are those that are autistic and apraxic- so in those

situations ABA may be effective if done in a modified way where everyone is

aware of the motor planning impairments and other physical limitations. Here's

one of the worst real life examples of how ineffective and detrimental a

misdiagnosis of autism and ABA therapy can be for an apraxic (if you need to

speak to 's mom Robin let me know)

http://www.cherab.org/news/.html

4. What improvements can you suggest that are offer for students with these

disabilities that can help them enhance their learning experience.

I highly suggest all professionals that work with verbal disabled students study

the work of Dr. Rosenthal to try to help them from falling into the trap

of assuming that a communication impairment goes hand in hand with a learning

disability. For preschool years for sure a multisensory approach is probably

going to be the most effective. Another great aspect is utilizing the FM

systems in the classroom which I believe have been proven effective for various

types of learning styles and abilities. Encouraging parents to turn on the

closed caption for the TVs their child will be watching because research has

shown that the hearing siblings of deaf children are learning to read earlier

because of it. And it's free!

For older students I have a list of things I'm seeing myself for my own son -but

if I have to keep it short -remember that one's ability to communicate verbally

should not reflect upon their ability to think, learn, and feel. Students know

when they are not viewed in a positive light. Older students know when they are

" messing up " what they are trying to communicate. So always providing that

student with the time or method needed to enable them to express themselves. if

it helps -have the teachers treat them as they would a deaf student because that

today is a condition that no longer carries the negative stereotype that other

verbal disabilities carry.

5. Could you suggest anything else that I should consider or any comments about

your experience(s).

I believe we should feature more positive examples to teachers of how students

can have a verbal disability and be a top student. I'll never forget how

Tanner's one teacher once said to me in shock " I can't believe how Tanner just

goes up to people and starts talking to them and he's not at all self conscious

about his speech " And I said " why should he be? We raised him to have a high

self esteem and he is fully aware that he has an impairment in speech

-understands what it is -and knows that it's something he is working on "

And of course I believe that everyone that works with " late talker " children

should read The Late Talker book..and not just because I'm one of the co authors

-but because experts in every field including education agree:

" Full of terrifically practical and encouraging information . . . Everyone on

the team helping your late-talking child will benefit from reading this book. "

--Martha R. Herbert, M.D., Ph.D., Pediatric Neurologist, Massachusetts General

Hospital and Harvard Medical School

" Oral language—the ability to communicate needs, feelings and opinions via

verbal speech—is the coin-of-the-realm in today's society. One must be able to

interact verbally with others and an inability to do so, can greatly hamper a

child's development and independence.

For most children, oral language develops quite naturally. As the child's

vocabulary and syntax emerges, he becomes better able to communicate with others

and gains control of his environment. A child's failure to develop normal verbal

language can create great angst for his parents and caregivers.

When a parent has concerns about the child's language development, she often

turns to family members or neighbors for `expert' advice. The counsel that is

provided generally ranges from unwarranted panic to laissez-faire advice that

the child `will grow out of it.' Neither of these reactions is particularly

helpful or effective.

However, The Late Talker by Agin, Geng and Nicholl provides useful, field tested

advice for parents who are concerned about their child's language development.

This gem of a book provides an immensely readable overview of normal language

development and a thorough review of the cause of language delays and

disabilities. The material offers comfort and counsel for the anxious parents.

The great strength of The Late Talker is its transdisciplinary approach to the

topic. Dr. Agin offers a thoughtful medical perspective on the problem and

translates the related research into understandable and useful terms. Co-author

April 13, 2009

, Whats the website where you can buy the fish oils?

-------------- Original message from " kiddietalk " <kiddietalk@...>:

--------------

Hi My Trang and welcome! I do hope that many others have answered you already

-but here's my answers to your questions:

1. Please tell me about your personal story or stories that you face with having

or your child has with apraxia. Learning disabilities? Challenges?

My son was born in 1996 and diagnosed with apraxia in 1999. Back then there was

little to no support in person or on the web for apraxia. I started a support

group out of the Children's Specialized Hospital in Mountainside, NJ as

" Children's Apraxia Network " and within a year I realized that not all of the

members had young children, and not all were diagnosed with apraxia. For me the

hardest thing about raising a child with apraxia vs a child that has a condition

that is well documented is the ignorance from everyone. My oldest son Dakota was

also a late talker and needed speech therapy -but his issues went far beyond

speech as he was a traumatic delivery and in intensive care from birth with

severe head and neck injuries and with eating and even breathing problems. His

injuries were life threatening. In some ways even though apraxia is not life

threatening it was much more stressful for me with my apraxic son Tanner because

I didn't have the professionals comforting me and educating me on what I needed

to do to help Dakota -I had to argue and fight the ignorance every step of the

way.

I do believe that part of the ignorance spills into the myth that a speech

impairment means a learning disability. I do appreciate that historically that's

what has been the case. But in my experience " late talkers " have phenomenal

memories which if used to the advantage can make them excel as students. For

sure an apraxic child does not learn like the normal child. But who am I to say

that is a learning disability -I mean -they learn and they can be top students.

Multisensory ways of teaching for learning to talk and learning in school seem

to work. For Tanner I found fun competitions or rewards made him reach for

places academically that many professionals didn't believe him capable. I have

Tanner's story here