What is Global Apraxia

[Guest guest]

I just got off the phone with who will answer this later today -

she's been writing a book (not really but for here) as she's kind of

coming back and didn't know how to jump in and wants her messages to be

perfect. Anyway she has 2 boys who both grew up with apraxia -and

Khalid had global apraxia. I can tell you that it means something

different to everyone in a way. Apraxia in itself even when

it's " just " verbal or oral is rarely just a speech issue. ie Apraxia can

affect breath control. Global apraxia has nothing to do with the co

existing conditions either -most today diagnosed with apraxia have low

tone somewhere for example. Apraxia just means " motor planning

disorder " and if it's global it could be difficulty on command to move

limbs -fingers (for sign) or do anything on command. It could be

blowing your nose -and as Janice said it could be linked to

constipation not because that's a motor planning disorder -but it

appears the constipation may in many cases be secondary to the motor

planning disorder - the child can't " push " on command. Some people

assume global apraxia means a " delay " in all areas including cognitive

but most don't assume that (thank goodness!)

Never heard CAPD and global apraxia are linked -but diagnosis can overlap.

Below are some messages that are archived from both and her now

twenty one year old son Khalid. Both and Khalid share what it's like

to live with global apraxia through the eyes of the parent as well as

from Khalid's own words.

Khalid is still my inspiration for Tanner as I love to hear what he is

up to today as so far Tanner and him appear to share many

similarities. always told me that when Tanner was younger but

now that Tanner is 11 I'm seeing it. The first time I met Khalid he was 13

and Tanner was around 4. Here the two are together!

http://www.cherab.org/information/phototrip2000.html

Here's the archives! I hope after reading this you'll get to know who

is if you don't know. Please let's all welcome her back when she

gets up the nerve to post again -she is VERY shy!!!

Re: Apraxia thru whole body?

Hi Marie,

The web site " Liberating Dyspraxia with Understanding " gives a

detailed description about global apraxia/dyspraxia. It gave me

understanding about my son Khalid regarding global apraxia.

http://www.dyspraxia.org.nz/

Hope this helps,

Mustafa

Re: Older Children with Apraxia

>I know I have asked before, but I didn't get a response, does

>anyone have older apraxic children who have gone through the tough

>high school years and can offer any suggestions academically and/or

>socially?

Dear Joyce,

I relate to where you are with frustration in searching to help your

teenage child. We too found it difficult to get services through

high school for our apraxic son Khalid. It was difficult to know

where to begin, and what to expect, being that high school was a new

chapter in his life. By the time Khalid reached high school, after

years of speech and other therapies, he had become so accomplished

at knowing strategies and how to cope with apraxia, that he was

no longer qualified for Speech and OT services, even though his

speech was limited to simpler phrases that he felt more comfortable

with, around his eighth grade year. It was during that time of middle

school, that complex words used in science, geometry and of that

sort were at times difficult for him to say. Khalid worked on this

as he did anything he was aware that was a challenge. Again over

time, with learned strategies and becoming the composed

conversationalist that he now is, it would take a skill ear to be

aware of what he was like some years ago. In addition, Khalid

continued to progress, advancing to more and more complex words in

his vocabulary, and conversations became broader. Today he speaks

with such eloquence most of the time that he has been complemented

on his articulation from those who do not know his beginnings. You

can hear him (Kal) at age 13.8 on the talking page (long overdue for

his update) http://www.debtsmart.com/talk/index.html Overall we are

fortunate that his speech was no longer the focal point in high

school years, but as with most our children, there were other needs,

Khalid also has global (speech and limb) apraxia.

Khalid was exited from speech services by seventh grade, which we

all approved, but later his eighth grade year, when he felt that he

could use some school support he was then reinstated in speech services

for written language. When Khalid entered his 9th grade year, he was

then denied school speech/OT services altogether. This is why I so

relate to what you are going through today with Meagan. Later we

would regret that we did not pursue this further at that time. We

now know and encourage you if you are in this situation to know that

services are hard to secure again once they are stopped in high

school and I encourage you to do whatever necessary to fight for

what therapy is appropriate for your child, no matter what age, and

even if and when your child/teenage child has learned to " overcome "

may still need help from time to time.

The school's case was that Khalid's written language did not impact

his grades/education- therefore the school would not reinstate high

school services. What's normal to most -is not " normal " to a child

who had been in the upper end grade wise up till then? The school's

decision was based on what was common to that of his peers –not to

what was normal for Khalid. All of this we feel did impact Khalid

to some extent. These issues would only become more so visible at

challenging times. In math, Khalid did fairly well throughout mid

school, however, he has struggled with high school Geometry and

Algebra 2. It's peculiar, because in some math courses he excelled

and there are those he has struggled with. I think it could depend

on language in some cases. What has helped the situation, were just

educating the teacher about the needs of students with apraxia,

There were times we provided a handout regarding apraxia to teachers

and his advisor, which made a significant difference that brought

awareness to them. If there were no moving forward, he changed his

class/teacher or if necessary placed him in a smaller private night

class. This approach would always bring a lower grade back up to a

grade A/or B.

As Khalid grew older, he has learned to advocate for himself, and

takes the initiative to speak to his teachers/and or advisor on his

own to find solutions whenever needed. However, also knowing if he

should ever need his father and I, we will always be there for him.

The past two years he is most fortunate to have a well-versed

guidance counselor who advises him on his academic career. Finding a

school advisor that truly cares about your child and their needs is

essential. Khalid's advisor cared enough to become more

knowledgeable about apraxia and is a vital role to helping him meet

his educational goals. Before, going on two years with counselors who

see students/Khalid as just another number, we know the importance of

a qualified mentor. This school advisor has been there for my son in

the most productive and supportive ways! She's made a difference.

Because Khalid's needs at this point were considered quite mild

in comparison to other students who are in much greater need of

speech and language services, he did not fit into the category of

abnormal, nor did the school feel his language skills risk his

success in school. Therefore for support his high school years we

decided to seek assistance for him elsewhere. Out-of-pocket

expenses, Khalid went through some various private accommodations

such as, tutoring, and the Sylvan learning program and as mentioned

above, nighttime courses at a private school that offers a smaller

classroom setting. It was through outside services Khalid found

most accommodating to his needs. It's important that I emphasize

Khalid's strengths are far greater than anything he has struggled

with. Always his personal strengths we point out to him, we look up

to everything he has accomplished- everything that he is. Actually,

he does well/or above average in most subjects, and this has been

without school services. This year his favorite study is anatomy.

Journalism is another favorite course! Khalid loves to interview

athletes, and " write " sports articles. His teacher had submitted

(first of 4 years) to the school district paper a recent article

Khalid had done for his class assignment. Last year he also

excelled in a film critic class, which also involved so much

writing/filming and originality. Khalid has an out of the box

thinking style that brings so much energy to these classes!

Physically he is 6'5 and has become powerfully strong, he no longer

fatigues in daily task. With labored physical training he now has

good hand/eye coordination, which results in being that he is an

outstanding athlete in basketball and passionate about the game!

When it comes to Khalid's social life, today again he is quite

different than years ago. Khalid had a few good friends while he was

growing up, but there was a time he felt left out of the mainstream

and school was quite difficult. I believe as hard as the years were

to go through for all of us that part of life did not bring him

down. Khalid today is very outgoing and has many friendships (both

genders) in and out of school. His cell rings all the time, in fact

my husband and I joke that we need to make an appointment to see him

more these days, he is that out going!

My heart goes out to Meagan and all teens with speech impairments,

there was that period in Khalid's life he dealt with the same

frustrations; especially when it's hard for a teen to say a word at

mid-school or high school age (teens know what they can do) they

tend to not say things that they are not comfortable with or perhaps

embarrassed in front of their peers. Mid school, these are such

critical years for teens to find ways to maintain relationships.

Khalid in younger years also longed to fit in with peers, and how

I had wished that for my son. Today he fits in beautifully with peers

and good friends socially.

Once again, Khalid has learned to rise above. Khalid's perspective

when it comes to high school years, it gets much easier for kids,

the teasing is less, self-acceptance and of others becomes more.

Humor also plays a big role in building a positive self-image.

Finding lasting relationships is easier to come by. Khalid knows

no borders, he is compassionate to all people, and has always been.

Perhaps due to what he has come through. Not all children grow up

seeing life from so many angles as our children do. Mother nature

does not make much in the way of straight lines, both sides of our

bodies are not equal, none of us are perfect even though we are all

beautiful in our own way.

Parents have asked is apraxia something that our kids will ever get

past. I believe this holds true for Khalid, in many aspects of his

life he has overcome Global Apraxia. Meaning his apraxia does not

hold him back from living life as usual, its part of which he is,

and what made him stronger. His days are typical that of all teens,

he is self-reliant, drives his own car, has an enjoyable job, and

loves to plays sports, good relationships with family and friends.

Even has that special someone, first love, met her while we lived

in Oregon. Khalid recently went to his school's homecoming and had a

blast! He is looking forward to his prom and graduation this coming

May. Thereafter, he is planning for a promising future, his college

years, and a good career and someday wants to have a family of his

own!

What might be helpful to Meagan, Khalid was asked to write for the

Late Talker book on how he learned to overcome apraxia. Some of his

successful strategies/stories there are from mid-school years that

can be found in a few Chapters, but much on pages 136,158-159.

http://www.speechville.com/late.talker.html

I also as always highly recommend the book chicken soup for the

teenage soul. http://www.chickensoup.com/books/teen_3.html

The stories of triumph show that difficulties are placed

there for our children to rise above. We are there to help,

to support, and to cheer them on. In addition are some resources

listed below that are related to teens with disabilities. When I

look at Khalid today, I realize it was not that long ago how I

dreamed he would flourish to where he is today. He has arrived at a

place where he can very well make it on his own. Joyce, you'll be the

beacon of light, the hope that guides Meagan through her high school

years. Though it is a time for growth and challenges for teens with

apraxia, it's our prayer that Meagan will recognize and build on her

unique strengths that make her the beautiful person that she already

is, and come to realize that she is a winner by any standards!

Parents in closing, know how much I hold your heart whenever I tell of

Khalid's story- it is with his blessing I share his life's experiences

of rewards and challenges.

Mustafa

Mom to Khalid 18, Jadd 10.7, Danya 13

Selecting A School

http://www.schwablearning.org/articles.asp?r=294

All kinds of Minds

Student success program

http://www.allkindsofminds.org/ssc/index.aspx

Self-Advocacy: A Valuable Skill for Your Teenager

http://www.schwablearning.org/articles.asp?r=522

" Self-advocacy is understanding your strengths and needs,

identifying your personal goals, knowing your legal rights and

responsibilities, and communicating these to others. Because your

child lives with his learning struggles on a daily basis, he must

learn how to maneuver through life's challenges and obstacles to

make sure his needs are met. "

Kids As Self Advocates website

http://www.fvkasa.org/

For Teens, your future, education choices, Building skills, finding

support.

http://www.ld.org/livingwithld/teens_building_getorg.cfm

For teaching and facilitating transition and self-advocacy skills

http://www.ode.state.or.us/gradelevel/hs/transition/selfdetermination.pdf

Transition and Self-Advocacy

http://www.ldonline.org/ld_indepth/transition/transition_self_advocacy.html

Rick Lavoie

http://www.ricklavoie.com/

A Teacher's Formula to Build Self-Esteem in Kids with LD

http://www.schwablearning.org/articles.asp?r=519

Dr. Hallowell Talks to Teens: Do You Feel Worried or Sad?

http://www.schwablearning.org/articles.asp?r=514

Top Tips For Dads Getting Involved

http://www.schwablearning.org/articles.asp?r=72

Dr. on Self-Esteem and Resilience Priscilla Vail

Explains how Emotional Issues Change as Kids Grow

http://www.schwablearning.org/articles.asp?r=372

Raising Resilient Children Foundation

ing Strength, Hope, and Optimism in Your Child

By , Ph.D., and Sam Goldstein, Ph.D.

http://www.raisingresilientkids.com/

Ability OnLine Support NetworkAbility OnLine is a free Internet

community where children/youth with disabilities/illness and their

parents can meet others like them, make friends from all over the

world, share their hopes and fears, find role-models and mentors,

and feel like they belong.

http://www.ablelink.org/public/default.htm

Language Strategies for Older Students (2001)

http://www.asha.org/about/publications/leader-

online/reviews/strategies.htm

FW: Experiences that work together

Khalid has requested that I forward this message for him. His message

did not

show up the other day. Must be again.

mom to Khalid

-------------- Forwarded Message: --------------

From: khalid236@...

khalidsvision@...

Subject: Experiences that work together

Monday, July 17, 2006 1:38:58 PM

Hi Dawn my answers are taken from my own experiences. My mom

is usually the one that responds to parent's questions on the net

and she understands more about the mechanics of speech. Don't want

to confuse anyone but will try my best to explain what I know in

therapies.

I do take fish oil on and off and was more consistent in my

junior years. The standard of fish oil was not popular when I was a

boy so the main course of therapy was oral motor. Fish oil is a good

thing for everyone to stay on.

I think the best approach to therapy is having that solid

relationship with the therapist and support system. Parents and

therapist working together with your child is the way to go. I don't

remember much with group setting. Constant one on one is what worked

best for me. There are therapists where I had no connection making

therapy a routine task. my school therapist stood out from the

rest. I feel lucky that he was frank but sincere. His honesty gave

direct answers dealing with apraxia. I use to talk like a robot and

was told straight that I did. My voice was monotone and I realized I

needed rhythm and patterns to sound natural. I responded well to

's candor. I needed to hear the hard stuff that came with

apraxia and how I can get the better edge.

Told that the traditional articulation therapy alone was not

useful in younger years. My progress was so slow up to the point

that I met . That is what decided there's more going on with my

speech problems that led to my diagnosis at age 8. Then basic

apraxia techniques were used, like cued speech, oral motor and

sensory exercises, drills and repetition in sounds. The voice tape

recordings reviewed my speech and I knew what was happening as I

advanced in speech.

I also had my personal touch thats sucking on things like

candies, ice or through a straw in a thick shake or smoothie. I

can't say exactly why a strong suction worked but I think this

helped positioned my mouth for clarity. Speech strategies is a great

tip, like using abbreviated words helped me out in conversations.

Therapy was often used in activities. To make it interesting we

played games for therapeutic purposes. Basketball was a cool way to

motivate sounds and help with coordination. Learning the techniques

of basketball was not easy for my hands and a body that did not want

to cooperate. It was like learning to talk, there was lots of

repetition and drills to practice to get the skill down. It was work

but I came a way from therapy feeling accomplished. Thanks to

I had mastered words, confidence and a game that became my passion.

Another helpful approach are therapies outside of school. My

parent's method was used in ways that were not obvious to me. I did

not think of this as speech homework. What was put in practice was

part of our daily lives. My family and I spent loads of time at

parks, and places that had play climbing structures. It worked those

muscles for speech and coordination. I saw messages that parents are

doing this approach with their kids at amusement parks. Riding

therapy and how this stimulates speech like Tanner is something what

I'm talking about. Tanner and I had a conversation just the other

day and he sounds fantastic. I'll be having some ride therapy of

my own at Six Flags and canoeing in Colorado with 3 of my friends.

Tanner I'll let you know when I'm back how the ride therapy went

for me!

Nearly 20 and have to say its evident the changes in apraxia.

I'm comfortable with my speech. From time to time I slip-up on a

word, and know this can happen to everyone. To prevent bloopers I

still practice multifaceted words, specially for school

presentations. My written language has improved, but for papers I

use spell check to catch some errors or typos, this is handy.

Appreciate the luck this coming school year. College life is

good so far and I'm staying on course. I wish good fortune to

your daughter and all the kids in this group. Don't question hope

its always there when people are on your side. Keep up the faith and

the praise coming, your kids believe in you.

Take care, Khalid

>

> Khalid,

> I'm curious as to what the best approch or therapy was for you.

> Prompt, kauffman, etc. Did you take EFA'S, do you still? Sorry my

> questions seem more like an interrogation.

>

> Your brief description of what you have accomplished is very

> inspiring, and gives me hope for my daughter who was diagnosed

> shortly before her 3rd birthday. She is now 5. Good luck in your

2nd

> year of college. And all that you inspire to be and do.

>

> Dawn in NJ

Re: Will my child be a normal adult?

Holly we all wonder that when we find out our child may

have " apraxia " -well that is after learning what that words

means! The answer to " will my child be a normal adult " in almost

all cases today -at least in this group -is yes. Of course it

matters if there are other factors outside of the apraxia -such as

receptive/cognitive ones. At times some suspect that there are

....and it's just that the child is being judged against children

that are verbal with perfect motor skills. When given time and help

to blossom however most apraxic children prove they have at

least " normal " abilities. The average person has average abilities -

and apraxia does not affect one's cognitive ability.

And in ways you'll learn -most apraxic children are above average!

(Incredible recall memory! A sign of a gifted child in school)

(this message is too long but I go into it in others)

The falling you speak of sounds like it's all part of the

apraxia/dyspraxia. Funny thing is that dyspraxia in the UK used to

be referred to as the " clumsy child syndrome " can you believe it?!

Anyway -I'm sure others are going to answer...and I hope Dr.

shares her secret to her success with her now 3 son ph (or I'll

archive it) because he 'used' to be like your son at 2...and now

he's already " normal " due to her scientific out of the box mind -and

it's just amazing for her son and all of our children!

One of the children I know that grew up with apraxia and is today an

adult is Meghan Dolan -who is right now working on her masters at

University of Florida in special education. In speaking with Meghan

today she sounds just fine to me...but she will tell you that she

knows which words she can or can't say -and will avoid those that

are not in her motor memory when she is with new people. She also

practices what she will be speaking about if she is going to be in a

new situation -or public speaking etc. In front of her friends and

family she will break down here and there....and I have to say that

if I didn't meet her parents and grandmother myself it would have

been hard to believe any of the above it true she spoke so well. I

met Meghan at a book signing for The Late Talker book.

Thing that is funny about that is Tanner since four years old (?)

has been practicing to talk in the bathroom mirror with the door

closed. I have to find it in the archives -he would practice saying

sounds, words, and even facial expressions (I used to peek in -BAD

Mommy!) As he grew I heard him saying sentences like " want to

play? " over and over. Meghan and Tanner bonded on this point -

because neither of them had been taught to practice in the mirror

since little -they both just did. (I don't believe Tanner does it

anymore -but today he is understood when he talks -his issue is more

that he sounds immature when he talks. He's around 2 deviations

below on expressive -but he is 10)

Below is a message about the CHERAB groups ambassador Khalid Mustafa

who like Meghan grew up with apraxia and is now a " normal " adult.

Without speaking to Meghan or Tanner -Khalid writes " to prevent

bloopers I still practice multifaceted words, specially for school

presentations " Most with impairments of speech will break down when

tired or stressed or expected to say something new that is complex.

So again below is a message about and then from Khalid to bring you

hope -and below that is a new member archive to get you started with

info that's ammo!:

Experiences that work together/Khalid you can fly!

Khalid you are my inspiration for Tanner. Through the years in

speaking with your mom she's shared with me various stages

you've gone through. And no matter what fears she has had you've

always managed to overcome. The last time I met you was when we had

you fly in for Inside Edition when you were 13 years old...can you

believe it was that long ago?!

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

I'll never forget how mature and kind you were to Tanner and Dakota

and Evan (even when Evan was trying to stick everyone that sat near

him with a fork at Mars 2112 you sat near him anyway -remember

that?!) http://www.cherab.org/information/phototrip2000.html

I am so very sorry I didn't get to travel with you and your mom to

the conference in Qatar that was in association with Newsweek

magazine that CHERAB was invited to -but again I couldn't think of a

better " spokesperson " than you! We'll share more with stories and

photos once the page is up at CHERAB -and you can share here your

personal experience from that exciting trip!

And speaking of another type of exciting trip...Your mom told me

either your brother or sister said that when you first went on the

roller coasters you didn't scream -like Tanner. You said " cool " and

stuff like that -but didn't scream. We had to teach Tanner how to

scream and when he first did, it was like he was saying " ahhhh " at

the doctor's office with a tongue depressor in his mouth! Not sure

if you recall that. Tanner goes on every ride today...and we don't

see the surges that day -but the next day. I wish we lived even

closer to Orlando because I'd take him to the parks just about every

day if I could.

I am so proud of you Khalid! Please continue to share because you

bring us hope as the " Ambassador to the CHERAB Foundation "

Hope you are having a safe and incredible adventure with your

friends on your road trip to Colorado you are now on! (too funny

because one of the archives here was when you mom was worried with

your motor apraxia if you'd ever be " able to drive well " YES!!)

Yes...I believe you can not only drive...but fly if you wanted to!!

" Sometimes silence can seem so loud

There are miracles in life I must achieve

But first I know it starts inside of me,

Oh if I can see it, then I can be it

If I just believe it, there's nothing to it "

http://www.ladynwavs.com/icanfly.html

=====