Re: venting

[Guest guest]

Amen - and I would add - that those frustrated about that, must be contacting

their legislators about it.

As often as possible.

That is what will change things, and I know about the time issue, but we must

vent those frustrations to those who are in a position to do something about it.

I hope you sent what you wrote - to the news, and to your legislator, and to

policymakers at DADS.

Mouser wrote:

I am all for exposure and public awareness about Autism, but I am so

fed up

with having to hear the same c%^$ on TV over and over again which is really

nothing enlighting or news-worthy.

Most segments is about how the child was severely autistic and then we did

x therapy and now look at him he is on the debate team or we don't know

whether vaccines implicated or not. Here is a tid-bit of what some people

think and then here is what the CDC/some pediatrician thinks......that's

it...there is no serious investigational reporting about this. I am so

beyond sick and tired of hearing about this.

when will it be reported that:

we know we need early intervention but what parents face is the lack of

enough qualified people; or not enough money; or insurance will not cover

it

when will it be reported that inspite of early intervention and all other

known treatments and still no speech..no recovery (sorry, but that

is the story of the majority of children with Autism). and my definition of

Autism is what I find in my son

(non-verbal, learning disability, sensory issues, stimming, rigidity, no

concept of danger or anything abstract,..etc)

which brings me to the next point:

when will it be reported that there is a problem with the monstrous

umbrella of what we call Autism Spectrum which frustrate the heck out of us

parents

by comparing our children knowing that no two are alike. There are plenty

of times that I feel that I do not belong to any of the Autism lists as I

can not relate

to others experiences.

When will it be reported that lumping everything under Autism will confuse

doctors, parents and will always have the Autism as puzzle unless we give it

serious attention by at least give each condition a separate diagnosis.

When will it be reported and (should be made as taboo) how family and

friends avoid you and exclude from activities when you have a child with

Autism. How public places, doctor offices, hospitals,,etc are not equipped

nor prepared or educated to handle people with Autism.

When will it be reported as an outrage the lack of education, research

funding , enough interest of medical community in this mysterious,

gut-wrenching, debilitating condition. As a matter of fact, some think it

as a life style.

I tell you my opinion if Autism is spread by sexual contact, then it will

get all the attention, research,funding, public awareness, compassion

necessary. Just look at AIDS.

ok... I feel better now.. I am debating whether I should post this or

not...but what the heck. I had a sleepless night followed by poop all over

the bed and an hour of moaning and crying of my son trying to figure out

what is he upset about.

Have a good day,

M. Guppy

My autism journey isn't about waiting for the storm to pass, it's about learning

to dance in the rain.... Texas Autism Advocacy: www.TexasAutismAdvocacy.org

" There are some aspects of a person's life that we have no right to

compromise. We cannot negotiate the size of an institution. No one should live

in one. We cannot debate who should get an inclusive education. Everyone

should. We cannot determine who does and who does not get the right to make

their own choices and forge their own futures. All must. "

[Guest guest]

GLAD YOU DID, I FEEL THE SAME WAY! MY SON IS 7 YEARS OLD ALMOST 8. NO ONE CAN

UNDER STAND EXCEPT SOME ONE GOING THROUGH IT. GOING INTO STORES, HAVING PEOPLE

STARING,[ HE LOOKS NORMAL] SOME EVEN SAY HOW STRANGE THAT LITTLE BOY IS. WELL ,

I'M TIRED OF HAVING TO EXPLAIN THAT HE AUTISTIC, I DON'T EVEN BOTHER NOW , I

JUST GO ON WITH MY BUISNESS.I GUESS THE ONLY GOOD THING ABOUT HAVING IT IN OUR

FACE ALL THE TIME IS , AT LEAST MORE PEOPLE ARE AT LEAST A LITTLE MORE INFORMED?

THANKS AGAIN FOR YOUR THOUGHT, I FEEL BETTER. MEG

Mouser wrote: I am all for exposure and

public awareness about Autism, but I am so fed up

with having to hear the same c%^$ on TV over and over again which is really

nothing enlighting or news-worthy.

Most segments is about how the child was severely autistic and then we did

x therapy and now look at him he is on the debate team or we don't know

whether vaccines implicated or not. Here is a tid-bit of what some people

think and then here is what the CDC/some pediatrician thinks......that's

it...there is no serious investigational reporting about this. I am so

beyond sick and tired of hearing about this.

when will it be reported that:

we know we need early intervention but what parents face is the lack of

enough qualified people; or not enough money; or insurance will not cover

it

when will it be reported that inspite of early intervention and all other

known treatments and still no speech..no recovery (sorry, but that

is the story of the majority of children with Autism). and my definition of

Autism is what I find in my son

(non-verbal, learning disability, sensory issues, stimming, rigidity, no

concept of danger or anything abstract,..etc)

which brings me to the next point:

when will it be reported that there is a problem with the monstrous

umbrella of what we call Autism Spectrum which frustrate the heck out of us

parents

by comparing our children knowing that no two are alike. There are plenty

of times that I feel that I do not belong to any of the Autism lists as I

can not relate

to others experiences.

When will it be reported that lumping everything under Autism will confuse

doctors, parents and will always have the Autism as puzzle unless we give it

serious attention by at least give each condition a separate diagnosis.

When will it be reported and (should be made as taboo) how family and

friends avoid you and exclude from activities when you have a child with

Autism. How public places, doctor offices, hospitals,,etc are not equipped

nor prepared or educated to handle people with Autism.

When will it be reported as an outrage the lack of education, research

funding , enough interest of medical community in this mysterious,

gut-wrenching, debilitating condition. As a matter of fact, some think it

as a life style.

I tell you my opinion if Autism is spread by sexual contact, then it will

get all the attention, research,funding, public awareness, compassion

necessary. Just look at AIDS.

ok... I feel better now.. I am debating whether I should post this or

not...but what the heck. I had a sleepless night followed by poop all over

the bed and an hour of moaning and crying of my son trying to figure out

what is he upset about.

Have a good day,

[Guest guest]

,

Someone sent the email address for Greg Groogan's email(groogan@... ).

You have some good topic suggestions...I think you should email him directly

with your concerns.

a

venting

I am all for exposure and public awareness about Autism, but I am so fed up

with having to hear the same c%^$ on TV over and over again which is really

nothing enlighting or news-worthy.

Most segments is about how the child was severely autistic and then we did

x therapy and now look at him he is on the debate team or we don't know

whether vaccines implicated or not. Here is a tid-bit of what some people

think and then here is what the CDC/some pediatrician thinks......that's

it...there is no serious investigational reporting about this. I am so

beyond sick and tired of hearing about this.

when will it be reported that:

we know we need early intervention but what parents face is the lack of

enough qualified people; or not enough money; or insurance will not cover

it

when will it be reported that inspite of early intervention and all other

known treatments and still no speech..no recovery (sorry, but that

is the story of the majority of children with Autism). and my definition of

Autism is what I find in my son

(non-verbal, learning disability, sensory issues, stimming, rigidity, no

concept of danger or anything abstract,..etc)

which brings me to the next point:

when will it be reported that there is a problem with the monstrous

umbrella of what we call Autism Spectrum which frustrate the heck out of us

parents

by comparing our children knowing that no two are alike. There are plenty

of times that I feel that I do not belong to any of the Autism lists as I

can not relate

to others experiences.

When will it be reported that lumping everything under Autism will confuse

doctors, parents and will always have the Autism as puzzle unless we give it

serious attention by at least give each condition a separate diagnosis.

When will it be reported and (should be made as taboo) how family and

friends avoid you and exclude from activities when you have a child with

Autism. How public places, doctor offices, hospitals,,etc are not equipped

nor prepared or educated to handle people with Autism.

When will it be reported as an outrage the lack of education, research

funding , enough interest of medical community in this mysterious,

gut-wrenching, debilitating condition. As a matter of fact, some think it

as a life style.

I tell you my opinion if Autism is spread by sexual contact, then it will

get all the attention, research,funding, public awareness, compassion

necessary. Just look at AIDS.

ok... I feel better now.. I am debating whether I should post this or

not...but what the heck. I had a sleepless night followed by poop all over

the bed and an hour of moaning and crying of my son trying to figure out

what is he upset about.

Have a good day,

[Guest guest]

gina,    i hope you have a better day.          i used to have poop on walls all

the time.  if you need to vent    you can email me . my friends and i do all the

time.   gina  ft hood tx

venting

I am all for exposure and public awareness about Autism, but I am so fed up

with having to hear the same c%^$ on TV over and over again which is really

nothing enlighting or news-worthy.

Most segments is about how the child was severely autistic and then we did

x therapy and now look at him he is on the debate team or we don't know

whether vaccines implicated or not. Here is a tid-bit of what some people

think and then here is what the CDC/some pediatrician thinks...... that's

it...there is no serious investigational reporting about this. I am so

beyond sick and tired of hearing about this.

when will it be reported that:

we know we need early intervention but what parents face is the lack of

enough qualified people; or not enough money; or insurance will not cover

it

when will it be reported that inspite of early intervention and all other

known treatments and still no speech..no recovery (sorry, but that

is the story of the majority of children with Autism). and my definition of

Autism is what I find in my son

(non-verbal, learning disability, sensory issues, stimming, rigidity, no

concept of danger or anything abstract,..etc)

which brings me to the next point:

when will it be reported that there is a problem with the monstrous

umbrella of what we call Autism Spectrum which frustrate the heck out of us

parents

by comparing our children knowing that no two are alike. There are plenty

of times that I feel that I do not belong to any of the Autism lists as I

can not relate

to others experiences.

When will it be reported that lumping everything under Autism will confuse

doctors, parents and will always have the Autism as puzzle unless we give it

serious attention by at least give each condition a separate diagnosis.

When will it be reported and (should be made as taboo) how family and

friends avoid you and exclude from activities when you have a child with

Autism. How public places, doctor offices, hospitals,,etc are not equipped

nor prepared or educated to handle people with Autism.

When will it be reported as an outrage the lack of education, research

funding , enough interest of medical community in this mysterious,

gut-wrenching, debilitating condition. As a matter of fact, some think it

as a life style.

I tell you my opinion if Autism is spread by sexual contact, then it will

get all the attention, research,funding, public awareness, compassion

necessary. Just look at AIDS.

ok... I feel better now.. I am debating whether I should post this or

not...but what the heck. I had a sleepless night followed by poop all over

the bed and an hour of moaning and crying of my son trying to figure out

what is he upset about.

Have a good day,

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

:

As I posted on the other list you and I are on, my son is not high

functioning, we fight for every inch of ground, not doing something one day

could

cause him a huge backslide. Fox 26 last year did a story where we are mostly

crying throughout the interview about what our school district did to him after

they stop providing ABA, how much debt we were in, how insurance companies

are routinely denying his claims for his other disabilities because the

" autism " diagnosis pops up, etc. It's still on there:

_http://www.myfoxhouston.com/myfox/pages/ContentDetail?contentId=3249002_

(http://www.myfoxhouston.com/myfox/pages/ContentDetail?contentId=3249002)

I think you should sign up to Fox 26 and blog about this in addition to

sending Greg an email. I also blogged about autism and marriage and how our

marriage almost fell apart because of his autism:

_http://community.myfoxhouston.com/blogs/PBMom/2008/04/27/Autism_and_marriage_

(http://community.myfoxhouston.com/blogs/PBMom/2008/04/27/Autism_and_marriage)

I was very honest about what life was like with since he was 2 weeks

old and frankly, if we didn't have some individuals in our life at the time

that we did, one of whom paid for our marriage counseling for two years, and

two individuals who came every Sunday to watch for 2 hours so we

could go to counseling, I don't think we would be married today. We certainly

couldn't afford marriage counseling then.

Hilda

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

,

Wow! I am so glad you posted this! My program held an event and one of the news

stations came to cover it. THE main goal was to provide parents and the

community with information regarding the questions you posed in this post! We

had over 20 vebdors and professionals WANTING to offer help and learn more about

autism in general. While the news station interviewed a WONDERFUL family they

did not even discuss the goal(s) of the event give any info regarding ANY of the

people there-specifically the vendors who came to share their expertise and

learn from the many parents that attended, exacty what they were looking for

specifically. I applaud you for talking about your feelings and concerns!!! I

wish there were more answers, research, evidence-based practices, etc...but most

of all, I wish that we could all come together to do WHATEVER is necessary to

ease the challenges that all parents and professinals encounter when working

with our beautiful children.

Lesli-UTU

Sent via BlackBerry from T-Mobile

venting

I am all for exposure and public awareness about Autism, but I am so fed up

with having to hear the same c%^$ on TV over and over again which is really

nothing enlighting or news-worthy.

Most segments is about how the child was severely autistic and then we did

x therapy and now look at him he is on the debate team or we don't know

whether vaccines implicated or not. Here is a tid-bit of what some people

think and then here is what the CDC/some pediatrician thinks......that's

it...there is no serious investigational reporting about this. I am so

beyond sick and tired of hearing about this.

when will it be reported that:

we know we need early intervention but what parents face is the lack of

enough qualified people; or not enough money; or insurance will not cover

it

when will it be reported that inspite of early intervention and all other

known treatments and still no speech..no recovery (sorry, but that

is the story of the majority of children with Autism). and my definition of

Autism is what I find in my son

(non-verbal, learning disability, sensory issues, stimming, rigidity, no

concept of danger or anything abstract,..etc)

which brings me to the next point:

when will it be reported that there is a problem with the monstrous

umbrella of what we call Autism Spectrum which frustrate the heck out of us

parents

by comparing our children knowing that no two are alike. There are plenty

of times that I feel that I do not belong to any of the Autism lists as I

can not relate

to others experiences.

When will it be reported that lumping everything under Autism will confuse

doctors, parents and will always have the Autism as puzzle unless we give it

serious attention by at least give each condition a separate diagnosis.

When will it be reported and (should be made as taboo) how family and

friends avoid you and exclude from activities when you have a child with

Autism. How public places, doctor offices, hospitals,,etc are not equipped

nor prepared or educated to handle people with Autism.

When will it be reported as an outrage the lack of education, research

funding , enough interest of medical community in this mysterious,

gut-wrenching, debilitating condition. As a matter of fact, some think it

as a life style.

I tell you my opinion if Autism is spread by sexual contact, then it will

get all the attention, research,funding, public awareness, compassion

necessary. Just look at AIDS.

ok... I feel better now.. I am debating whether I should post this or

not...but what the heck. I had a sleepless night followed by poop all over

the bed and an hour of moaning and crying of my son trying to figure out

what is he upset about.

Have a good day,

[Guest guest]

, you are absolutely right. My wife and I have had that same

anguish for the last five years. When it comes to this thing called

an Autism Spectrum Disorder, people tend to focus on the " austism "

part rather than the " spectrum " part.

I think it's easier for most people, including reporters, to relate

to higher functioning children with autism because those kids

are " soooo close to normal " . Successful children were within reach

of those parents, but they missed it by such a slim margin. It's

easier for parents with only traditional kids to empathize with these

families, as they closely resemble their own.

Our kids are at the far opposite end of the spectrum. I refer to our

family as " the circus " because that's exactly what we look like as we

walk through the mall, a restaurant, or church. Our next door

neighbors still tense up when they see our kids, as though their

condition is contageous. I've heard that typical parents can hire

people called " babysitters " to watch their children for an evening.

WOW, where could we find some of those!? Our family doesn't resemble

anyone in the common world.

We have two eight year olds with no speech, are not potty trained,

incapable of dressing themselves, whose only fun is to bounce a ball

all day or sit in the bathtub, and who cry for hours on end. Unless

someone has personally lived with these issues, it is absolutely

impossible for them to understand.

OK, I'm coming out of the closet. I can't relate to most people who

post on autism boards either, and the education issues are a perfect

example. Intellectually I can understand why a parent with a higher-

functioning child would hate their school system because its not

providing a particular type of instruction, or didn't stop some

teasing on the playground. Emotionally, however, the Boatrights love

our school because they willingly open their doors to our low-

functioning children everyday. Yes, it's taken 50 years of parents

fighting for that to occur, but thank God it has. That's why I

support the organizations which helped make that happen.

All that said, here's what I know. God created all of us, and He

doesn't make mistakes (Psalm 139:13-16). God can use all of us,

including people with disabilities, for His purpose ( 9:1-3).

Parents dealing with severe challenges do so in order that their

faith " may proved genuine and may result in praise, glory, and honor

when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

reporters are going to tell that story either.

Thanks for venting. I feel better, too! - Clay

PS: This diatribe was approved by my wife.

[Guest guest]

Clay, your situation is heartbreaking, and I am sure it is

understandably hard for you to relate to those who have

higher-functioning children. But they can probably relate to you much

more than those who have never encountered autism in any form, and

much better than you may think. Our child has even " shed the label "

and been dismissed from Sp Ed altogether, but his autism sounds like

the same autism you describe during the days when the diagnosis came.

There was no leaving our home, no babysitters, no vacations, no trips

to the park, to a restaurant...no hair cuts, no baths, no nail

clipping, no getting dressed, no wearing shoes, or socks, no eating,

so sleeping, no speaking, constant crying...

It is wonderful our schools have provided appropriate services for

your twins. No one would wish differently. But please don't minimize

those with higher-functioning children who have not found appropriate

services or a placement for their children to allow them any progress

as school " haters " who are throwing the equivalent of a temper tantrum

because they didn't get one certain service or their child was

harmlessly " teased. " What you call " teasing " has been children left

bleeding in hallways or being slammed to the floor with police holds.

Our child, the same one who was dismissed from SpEd by kindergarten by

the same district who filed suit on us because they were insistent he

could not be educated satisfactorily in the regular classroom, was

facing institutionalization due to the harmful effects of the

incredibly inappropriate setting he was placed in while the school

took logs of his regression and denied to us anything was happening.

They offered not a single service he required - objectively - as

determined by the Independent Evaluator and multiple private therapists.

I know we are the " lucky ones " for the progress our child has made.

But those circumstances sure didn't make us feel the least bit lucky

at the time. And, unfortunately, we are far from the exception. There

are many more families whose children have faced, are facing, and will

face a similar degree of shameful disregard from their schools as long

as things remain the way they are. I hope we can all relate well

enough to each other to work towards the changes needed to fix that.

>

> , you are absolutely right. My wife and I have had that same

> anguish for the last five years. When it comes to this thing called

> an Autism Spectrum Disorder, people tend to focus on the " austism "

> part rather than the " spectrum " part.

>

> I think it's easier for most people, including reporters, to relate

> to higher functioning children with autism because those kids

> are " soooo close to normal " . Successful children were within reach

> of those parents, but they missed it by such a slim margin. It's

> easier for parents with only traditional kids to empathize with these

> families, as they closely resemble their own.

>

> Our kids are at the far opposite end of the spectrum. I refer to our

> family as " the circus " because that's exactly what we look like as we

> walk through the mall, a restaurant, or church. Our next door

> neighbors still tense up when they see our kids, as though their

> condition is contageous. I've heard that typical parents can hire

> people called " babysitters " to watch their children for an evening.

> WOW, where could we find some of those!? Our family doesn't resemble

> anyone in the common world.

>

> We have two eight year olds with no speech, are not potty trained,

> incapable of dressing themselves, whose only fun is to bounce a ball

> all day or sit in the bathtub, and who cry for hours on end. Unless

> someone has personally lived with these issues, it is absolutely

> impossible for them to understand.

>

> OK, I'm coming out of the closet. I can't relate to most people who

> post on autism boards either, and the education issues are a perfect

> example. Intellectually I can understand why a parent with a higher-

> functioning child would hate their school system because its not

> providing a particular type of instruction, or didn't stop some

> teasing on the playground. Emotionally, however, the Boatrights love

> our school because they willingly open their doors to our low-

> functioning children everyday. Yes, it's taken 50 years of parents

> fighting for that to occur, but thank God it has. That's why I

> support the organizations which helped make that happen.

>

> All that said, here's what I know. God created all of us, and He

> doesn't make mistakes (Psalm 139:13-16). God can use all of us,

> including people with disabilities, for His purpose ( 9:1-3).

> Parents dealing with severe challenges do so in order that their

> faith " may proved genuine and may result in praise, glory, and honor

> when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

> reporters are going to tell that story either.

>

> Thanks for venting. I feel better, too! - Clay

>

> PS: This diatribe was approved by my wife.

>

[Guest guest]

Clay -

 

Let me begin with this, I am thankful that my son is on the high functioning

level of autism (verbal, potty trained, etc).  I commend and God (or insert that

whom you worship - or none at all) bless the parents who have a child or

children that are more adversely affected by the spectrum. 

 

I am not saying that a high functioning child is any more difficult than what

you face every day, and I am not attacking IN ANY WAY, but this area of the

" spectrum " comes with it's own set of challenges. 

 

My son is becoming aware that he is " different " .  He has crushes on girls and

does not understand why they don't want to be his girlfriend (most of the girls

have been kind to him and declined politely).  He wants to go to birthday

parties, overnight parties, the movies, etc. and doesn't understand why he is

never invited.  He wants to and tries soooo hard to " fit in " but he doesn't.  So

that leaves us in a position to try to delicately explain to him why. 

 

But the explanations don't take the hurt out of his eyes, or make him any less

lonely.  I know - and the psychologist have advised us - that someday we may

have to explain to him that he will never live independently from us, he may

never have a girlfriend, much less a wife and children.  How do you explain to

him that it is not because he is un-loveable, when that is exactly what he will

think. 

 

Every day he gets out of the car to go to school - I pray to God that they will

be kind to him today.  I pray that those little creeps that torment him and call

him a " retard " will either get tired of it, be absent, or have wised up.  I pray

that the teachers in his school won't give up on him and will really work with

him to learn something new.  I pray that no one takes advantage of him today. 

 

While these kids may be " sooo close to normal " , they aren't and that is what

makes them more susceptible to teasing and torment.  If the other kids see a low

functioning child - for the most part they will leave the child alone..  If the

child is high functioning and mainstreamed - they are the target of the

bullies.  My son has been pushed, beaten, spit at, tripped, had food thrown on

him, had things taken away from him, verbally tormented and emotionally abused. 

There have been at least 4 kids that have been sent to alternative school

because they would not cease tormenting him.  Unless I demand that the school

provide the tools necessary for him to become more independent - for him to have

the tools necessary to interact with typical people, then this will be how the

rest of his life will be. 

 

People don't sympathize with parents of high functioning children.  When we go

out in public, we still get the stares, we still get judged as to why we don't

discipline our child when they throw a tantrum - because they still throw them. 

We are still judged when they see the child have a meltdown and it appears that

the parent is not doing anything.  They don't know that if I touch him in the

middle of a tantrum - I will escalate it and I can't pick him up and carry him

to the car anymore. ( 6ft and 185).  By all outward appearances, he looks

" normal " - only after a few minutes do people realize that he is a little

different.   

 

I am very fortunate.  I am in a better situation than most of the parents on

this board and I realize that.  I am able to have some time away from the

challenges of my son's disorder.  I have a wonderful husband, we have been

married for 11 months.  He is active in every aspect of my son's care from dr's

appts to meds to school to just hanging out with him and teaching him to be a

man.  I have wonderful in-laws that will watch him and care for him.   (His

granmama spoils him rotten.).  Yes, I am very fortunate.   

Re: venting

, you are absolutely right. My wife and I have had that same

anguish for the last five years. When it comes to this thing called

an Autism Spectrum Disorder, people tend to focus on the " austism "

part rather than the " spectrum " part.

I think it's easier for most people, including reporters, to relate

to higher functioning children with autism because those kids

are " soooo close to normal " . Successful children were within reach

of those parents, but they missed it by such a slim margin. It's

easier for parents with only traditional kids to empathize with these

families, as they closely resemble their own.

Our kids are at the far opposite end of the spectrum. I refer to our

family as " the circus " because that's exactly what we look like as we

walk through the mall, a restaurant, or church. Our next door

neighbors still tense up when they see our kids, as though their

condition is contageous. I've heard that typical parents can hire

people called " babysitters " to watch their children for an evening.

WOW, where could we find some of those!? Our family doesn't resemble

anyone in the common world.

We have two eight year olds with no speech, are not potty trained,

incapable of dressing themselves, whose only fun is to bounce a ball

all day or sit in the bathtub, and who cry for hours on end. Unless

someone has personally lived with these issues, it is absolutely

impossible for them to understand.

OK, I'm coming out of the closet. I can't relate to most people who

post on autism boards either, and the education issues are a perfect

example. Intellectually I can understand why a parent with a higher-

functioning child would hate their school system because its not

providing a particular type of instruction, or didn't stop some

teasing on the playground. Emotionally, however, the Boatrights love

our school because they willingly open their doors to our low-

functioning children everyday.. Yes, it's taken 50 years of parents

fighting for that to occur, but thank God it has. That's why I

support the organizations which helped make that happen.

All that said, here's what I know. God created all of us, and He

doesn't make mistakes (Psalm 139:13-16). God can use all of us,

including people with disabilities, for His purpose ( 9:1-3).

Parents dealing with severe challenges do so in order that their

faith " may proved genuine and may result in praise, glory, and honor

when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

reporters are going to tell that story either.

Thanks for venting. I feel better, too! - Clay

PS: This diatribe was approved by my wife.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

That was beautiful and so true. Even though our six year old has been

" dismissed " , my greatest fear is everything you so eloquently

articulated is happening with your son now. I think the tendency is

for our kids and us to be judged more harshly because our kids appear

" soooooo close to normal. " And perhaps because our expectations are

higher for them due to their potential, we face greater challenges

when dealing with schools whose only pledged obligation is to provide

an open door to services - no guarantee of progress at all. Even some

within the community may buy into the school's attitude that we are

being unreasonable parents who are demanding too much to insist our

children make some progress and not regress or be relentlessly bullied.

Sadly, it is the high-functioning ones who are also most prone to

depression and even suicide. They have the awareness of their

limitations and differences, yet are sometimes powerless to the

disability that causes it.

>

> Clay -

>

> Let me begin with this, I am thankful that my son is on the high

functioning level of autism (verbal, potty trained, etc). I commend

and God (or insert that whom you worship - or none at all) bless the

parents who have a child or children that are more adversely affected

by the spectrum.

>

> I am not saying that a high functioning child is any more difficult

than what you face every day, and I am not attacking IN ANY WAY,

but this area of the " spectrum " comes with it's own set of challenges.

>

> My son is becoming aware that he is " different " . He has crushes on

girls and does not understand why they don't want to be his girlfriend

(most of the girls have been kind to him and declined politely). He

wants to go to birthday parties, overnight parties, the movies, etc.

and doesn't understand why he is never invited. He wants to and

tries soooo hard to " fit in " but he doesn't. So that leaves us in a

position to try to delicately explain to him why.

>

> But the explanations don't take the hurt out of his eyes, or make

him any less lonely. I know - and the psychologist have advised us -

that someday we may have to explain to him that he will never live

independently from us, he may never have a girlfriend, much less a

wife and children. How do you explain to him that it is not because

he is un-loveable, when that is exactly what he will think.

>

> Every day he gets out of the car to go to school - I pray to God

that they will be kind to him today. I pray that those little creeps

that torment him and call him a " retard " will either get tired of it,

be absent, or have wised up. I pray that the teachers in his school

won't give up on him and will really work with him to learn something

new. I pray that no one takes advantage of him today.

>

> While these kids may be " sooo close to normal " , they aren't and that

is what makes them more susceptible to teasing and torment. If the

other kids see a low functioning child - for the most part they will

leave the child alone.. If the child is high functioning and

mainstreamed - they are the target of the bullies. My son has been

pushed, beaten, spit at, tripped, had food thrown on him, had things

taken away from him, verbally tormented and emotionally abused. There

have been at least 4 kids that have been sent to alternative school

because they would not cease tormenting him. Unless I demand that the

school provide the tools necessary for him to become more independent

- for him to have the tools necessary to interact with typical people,

then this will be how the rest of his life will be.

>

> People don't sympathize with parents of high functioning children.

When we go out in public, we still get the stares, we still get judged

as to why we don't discipline our child when they throw a tantrum -

because they still throw them. We are still judged when they see the

child have a meltdown and it appears that the parent is not doing

anything. They don't know that if I touch him in the middle of a

tantrum - I will escalate it and I can't pick him up and carry him to

the car anymore. ( 6ft and 185). By all outward appearances, he looks

" normal " - only after a few minutes do people realize that he is a

little different.

>

> I am very fortunate. I am in a better situation than most of the

parents on this board and I realize that. I am able to have some time

away from the challenges of my son's disorder. I have a wonderful

husband, we have been married for 11 months. He is active in every

aspect of my son's care from dr's appts to meds to school to just

hanging out with him and teaching him to be a man. I have wonderful

in-laws that will watch him and care for him. (His granmama spoils

him rotten.). Yes, I am very fortunate.

>

>

>

> Re: venting

>

>

> , you are absolutely right. My wife and I have had that same

> anguish for the last five years. When it comes to this thing called

> an Autism Spectrum Disorder, people tend to focus on the " austism "

> part rather than the " spectrum " part.

>

> I think it's easier for most people, including reporters, to relate

> to higher functioning children with autism because those kids

> are " soooo close to normal " . Successful children were within reach

> of those parents, but they missed it by such a slim margin. It's

> easier for parents with only traditional kids to empathize with these

> families, as they closely resemble their own.

>

> Our kids are at the far opposite end of the spectrum. I refer to our

> family as " the circus " because that's exactly what we look like as we

> walk through the mall, a restaurant, or church. Our next door

> neighbors still tense up when they see our kids, as though their

> condition is contageous. I've heard that typical parents can hire

> people called " babysitters " to watch their children for an evening.

> WOW, where could we find some of those!? Our family doesn't resemble

> anyone in the common world.

>

> We have two eight year olds with no speech, are not potty trained,

> incapable of dressing themselves, whose only fun is to bounce a ball

> all day or sit in the bathtub, and who cry for hours on end. Unless

> someone has personally lived with these issues, it is absolutely

> impossible for them to understand.

>

> OK, I'm coming out of the closet. I can't relate to most people who

> post on autism boards either, and the education issues are a perfect

> example. Intellectually I can understand why a parent with a higher-

> functioning child would hate their school system because its not

> providing a particular type of instruction, or didn't stop some

> teasing on the playground. Emotionally, however, the Boatrights love

> our school because they willingly open their doors to our low-

> functioning children everyday.. Yes, it's taken 50 years of parents

> fighting for that to occur, but thank God it has. That's why I

> support the organizations which helped make that happen.

>

> All that said, here's what I know. God created all of us, and He

> doesn't make mistakes (Psalm 139:13-16). God can use all of us,

> including people with disabilities, for His purpose ( 9:1-3).

> Parents dealing with severe challenges do so in order that their

> faith " may proved genuine and may result in praise, glory, and honor

> when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

> reporters are going to tell that story either.

>

> Thanks for venting. I feel better, too! - Clay

>

> PS: This diatribe was approved by my wife.

>

>

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

[Guest guest]

While my post did not intend in anyway belittling the challenges of parents

with " high functioning " children, your post really makes my point. We just

have completely different challenges, and lumping everyone under the " lazy "

definition of Autism does not do anyone any service.

That's why I am not keen about the media portraying one type of Autism per

say. You always hear about the success stories or the savants with the

unusual gifts.

I have often been asked what " gift " does my son have, which I often answer

He is the " gift " .

Re: venting

, you are absolutely right. My wife and I have had that same

anguish for the last five years. When it comes to this thing called

an Autism Spectrum Disorder, people tend to focus on the " austism "

part rather than the " spectrum " part.

I think it's easier for most people, including reporters, to relate

to higher functioning children with autism because those kids

are " soooo close to normal " . Successful children were within reach

of those parents, but they missed it by such a slim margin. It's

easier for parents with only traditional kids to empathize with these

families, as they closely resemble their own.

Our kids are at the far opposite end of the spectrum. I refer to our

family as " the circus " because that's exactly what we look like as we

walk through the mall, a restaurant, or church. Our next door

neighbors still tense up when they see our kids, as though their

condition is contageous. I've heard that typical parents can hire

people called " babysitters " to watch their children for an evening.

WOW, where could we find some of those!? Our family doesn't resemble

anyone in the common world.

We have two eight year olds with no speech, are not potty trained,

incapable of dressing themselves, whose only fun is to bounce a ball

all day or sit in the bathtub, and who cry for hours on end. Unless

someone has personally lived with these issues, it is absolutely

impossible for them to understand.

OK, I'm coming out of the closet. I can't relate to most people who

post on autism boards either, and the education issues are a perfect

example. Intellectually I can understand why a parent with a higher-

functioning child would hate their school system because its not

providing a particular type of instruction, or didn't stop some

teasing on the playground. Emotionally, however, the Boatrights love

our school because they willingly open their doors to our low-

functioning children everyday.. Yes, it's taken 50 years of parents

fighting for that to occur, but thank God it has. That's why I

support the organizations which helped make that happen.

All that said, here's what I know. God created all of us, and He

doesn't make mistakes (Psalm 139:13-16). God can use all of us,

including people with disabilities, for His purpose ( 9:1-3).

Parents dealing with severe challenges do so in order that their

faith " may proved genuine and may result in praise, glory, and honor

when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

reporters are going to tell that story either.

Thanks for venting. I feel better, too! - Clay

PS: This diatribe was approved by my wife.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Oh that was beautiful. I will steal that in my next writing I'm sure.....

" He is the gift "

I am not one to get stuck on labels - but sometimes the label " special " irks

me.

My son is not " special " because he has autism. Quite frankly there is nothing

" special " about what autism does to a child medically, physically, or

cognitively.

There is nothing " special " about special education.

There is nothing " special " about " special needs " other than what all of us

need: love, acceptance, tolerance, a helping hand when we need it.

Now spiritually, that is where special applies. He is special because he is

God's beloved. As are we all.

Anyway...

Awesome point - I love that.

Mouser wrote:

While my post did not intend in anyway belittling the challenges of

parents

with " high functioning " children, your post really makes my point. We just

have completely different challenges, and lumping everyone under the " lazy "

definition of Autism does not do anyone any service.

That's why I am not keen about the media portraying one type of Autism per

say. You always hear about the success stories or the savants with the

unusual gifts.

I have often been asked what " gift " does my son have, which I often answer

He is the " gift " .

Re: venting

, you are absolutely right. My wife and I have had that same

anguish for the last five years. When it comes to this thing called

an Autism Spectrum Disorder, people tend to focus on the " austism "

part rather than the " spectrum " part.

I think it's easier for most people, including reporters, to relate

to higher functioning children with autism because those kids

are " soooo close to normal " . Successful children were within reach

of those parents, but they missed it by such a slim margin. It's

easier for parents with only traditional kids to empathize with these

families, as they closely resemble their own.

Our kids are at the far opposite end of the spectrum. I refer to our

family as " the circus " because that's exactly what we look like as we

walk through the mall, a restaurant, or church. Our next door

neighbors still tense up when they see our kids, as though their

condition is contageous. I've heard that typical parents can hire

people called " babysitters " to watch their children for an evening.

WOW, where could we find some of those!? Our family doesn't resemble

anyone in the common world.

We have two eight year olds with no speech, are not potty trained,

incapable of dressing themselves, whose only fun is to bounce a ball

all day or sit in the bathtub, and who cry for hours on end. Unless

someone has personally lived with these issues, it is absolutely

impossible for them to understand.

OK, I'm coming out of the closet. I can't relate to most people who

post on autism boards either, and the education issues are a perfect

example. Intellectually I can understand why a parent with a higher-

functioning child would hate their school system because its not

providing a particular type of instruction, or didn't stop some

teasing on the playground. Emotionally, however, the Boatrights love

our school because they willingly open their doors to our low-

functioning children everyday.. Yes, it's taken 50 years of parents

fighting for that to occur, but thank God it has. That's why I

support the organizations which helped make that happen.

All that said, here's what I know. God created all of us, and He

doesn't make mistakes (Psalm 139:13-16). God can use all of us,

including people with disabilities, for His purpose ( 9:1-3).

Parents dealing with severe challenges do so in order that their

faith " may proved genuine and may result in praise, glory, and honor

when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

reporters are going to tell that story either.

Thanks for venting. I feel better, too! - Clay

PS: This diatribe was approved by my wife.

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

, I also have a son who is high functioning and is experiencing

the same challenges your son is.although he is only 10, he knows he is

different and everyday I have to explain to him the " who, what and why "

of life..It's good to know my son is not the only one.

I Hope you have a Wonderful Day!

~

Re: Re: venting

Clay -

Let me begin with this, I am thankful that my son is on the high

functioning level of autism (verbal, potty trained, etc). I commend and

God (or insert that whom you worship - or none at all) bless the parents

who have a child or children that are more adversely affected by the

spectrum.

I am not saying that a high functioning child is any more difficult than

what you face every day, and I am not attacking IN ANY WAY, but this

area of the " spectrum " comes with it's own set of challenges.

My son is becoming aware that he is " different " . He has crushes on

girls and does not understand why they don't want to be his girlfriend

(most of the girls have been kind to him and declined politely). He

wants to go to birthday parties, overnight parties, the movies, etc. and

doesn't understand why he is never invited. He wants to and tries soooo

hard to " fit in " but he doesn't. So that leaves us in a position to try

to delicately explain to him why.

But the explanations don't take the hurt out of his eyes, or make him

any less lonely. I know - and the psychologist have advised us - that

someday we may have to explain to him that he will never live

independently from us, he may never have a girlfriend, much less a wife

and children. How do you explain to him that it is not because he is

un-loveable, when that is exactly what he will think.

Every day he gets out of the car to go to school - I pray to God that

they will be kind to him today. I pray that those little creeps that

torment him and call him a " retard " will either get tired of it, be

absent, or have wised up. I pray that the teachers in his school won't

give up on him and will really work with him to learn something new. I

pray that no one takes advantage of him today.

While these kids may be " sooo close to normal " , they aren't and that is

what makes them more susceptible to teasing and torment. If the other

kids see a low functioning child - for the most part they will leave the

child alone.. If the child is high functioning and mainstreamed - they

are the target of the bullies. My son has been pushed, beaten, spit at,

tripped, had food thrown on him, had things taken away from him,

verbally tormented and emotionally abused. There have been at least 4

kids that have been sent to alternative school because they would not

cease tormenting him. Unless I demand that the school provide the tools

necessary for him to become more independent - for him to have the tools

necessary to interact with typical people, then this will be how the

rest of his life will be.

People don't sympathize with parents of high functioning children. When

we go out in public, we still get the stares, we still get judged as to

why we don't discipline our child when they throw a tantrum - because

they still throw them. We are still judged when they see the child have

a meltdown and it appears that the parent is not doing anything. They

don't know that if I touch him in the middle of a tantrum - I will

escalate it and I can't pick him up and carry him to the car anymore. (

6ft and 185). By all outward appearances, he looks " normal " - only

after a few minutes do people realize that he is a little different.

I am very fortunate. I am in a better situation than most of the

parents on this board and I realize that. I am able to have some time

away from the challenges of my son's disorder. I have a wonderful

husband, we have been married for 11 months. He is active in every

aspect of my son's care from dr's appts to meds to school to just

hanging out with him and teaching him to be a man. I have wonderful

in-laws that will watch him and care for him. (His granmama spoils him

rotten.). Yes, I am very fortunate.

Re: venting

, you are absolutely right. My wife and I have had that same

anguish for the last five years. When it comes to this thing called

an Autism Spectrum Disorder, people tend to focus on the " austism "

part rather than the " spectrum " part.

I think it's easier for most people, including reporters, to relate

to higher functioning children with autism because those kids

are " soooo close to normal " . Successful children were within reach

of those parents, but they missed it by such a slim margin. It's

easier for parents with only traditional kids to empathize with these

families, as they closely resemble their own.

Our kids are at the far opposite end of the spectrum. I refer to our

family as " the circus " because that's exactly what we look like as we

walk through the mall, a restaurant, or church. Our next door

neighbors still tense up when they see our kids, as though their

condition is contageous. I've heard that typical parents can hire

people called " babysitters " to watch their children for an evening.

WOW, where could we find some of those!? Our family doesn't resemble

anyone in the common world.

We have two eight year olds with no speech, are not potty trained,

incapable of dressing themselves, whose only fun is to bounce a ball

all day or sit in the bathtub, and who cry for hours on end. Unless

someone has personally lived with these issues, it is absolutely

impossible for them to understand.

OK, I'm coming out of the closet. I can't relate to most people who

post on autism boards either, and the education issues are a perfect

example. Intellectually I can understand why a parent with a higher-

functioning child would hate their school system because its not

providing a particular type of instruction, or didn't stop some

teasing on the playground. Emotionally, however, the Boatrights love

our school because they willingly open their doors to our low-

functioning children everyday.. Yes, it's taken 50 years of parents

fighting for that to occur, but thank God it has. That's why I

support the organizations which helped make that happen.

All that said, here's what I know. God created all of us, and He

doesn't make mistakes (Psalm 139:13-16). God can use all of us,

including people with disabilities, for His purpose ( 9:1-3).

Parents dealing with severe challenges do so in order that their

faith " may proved genuine and may result in praise, glory, and honor

when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

reporters are going to tell that story either.

Thanks for venting. I feel better, too! - Clay

PS: This diatribe was approved by my wife.

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now. http://mobile.

<http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ>

yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I agree, I thought that line was beautiful too...I actually went " aahhh " while

reading it.

a

Re: venting

, you are absolutely right. My wife and I have had that same

anguish for the last five years. When it comes to this thing called

an Autism Spectrum Disorder, people tend to focus on the " austism "

part rather than the " spectrum " part.

I think it's easier for most people, including reporters, to relate

to higher functioning children with autism because those kids

are " soooo close to normal " . Successful children were within reach

of those parents, but they missed it by such a slim margin. It's

easier for parents with only traditional kids to empathize with these

families, as they closely resemble their own.

Our kids are at the far opposite end of the spectrum. I refer to our

family as " the circus " because that's exactly what we look like as we

walk through the mall, a restaurant, or church. Our next door

neighbors still tense up when they see our kids, as though their

condition is contageous. I've heard that typical parents can hire

people called " babysitters " to watch their children for an evening.

WOW, where could we find some of those!? Our family doesn't resemble

anyone in the common world.

We have two eight year olds with no speech, are not potty trained,

incapable of dressing themselves, whose only fun is to bounce a ball

all day or sit in the bathtub, and who cry for hours on end. Unless

someone has personally lived with these issues, it is absolutely

impossible for them to understand.

OK, I'm coming out of the closet. I can't relate to most people who

post on autism boards either, and the education issues are a perfect

example. Intellectually I can understand why a parent with a higher-

functioning child would hate their school system because its not

providing a particular type of instruction, or didn't stop some

teasing on the playground. Emotionally, however, the Boatrights love

our school because they willingly open their doors to our low-

functioning children everyday.. Yes, it's taken 50 years of parents

fighting for that to occur, but thank God it has. That's why I

support the organizations which helped make that happen.

All that said, here's what I know. God created all of us, and He

doesn't make mistakes (Psalm 139:13-16). God can use all of us,

including people with disabilities, for His purpose ( 9:1-3).

Parents dealing with severe challenges do so in order that their

faith " may proved genuine and may result in praise, glory, and honor

when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

reporters are going to tell that story either.

Thanks for venting. I feel better, too! - Clay

PS: This diatribe was approved by my wife.

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

> OK, I'm coming out of the closet. I can't relate to most people who

> post on autism boards either, and the education issues are a perfect

> example. Intellectually I can understand why a parent with a higher-

> functioning child would hate their school system because its not

> providing a particular type of instruction, or didn't stop some

> teasing on the playground. ...

I don't know if you meant this the way it is coming off to me, but it

is attitudes like this that make the lives of our upper spectrum ASD

kids difficult. Many people say, in one way or another, that since

our kids seem almost normal they don't have serious problems. They

trivialize these kids' needs just like you did. As is often the case,

since they haven't experienced it, they don't realize how deep the

differences and difficulties run.

If you want people to support your family's differences and want to

support an attitude of tolerance in general, perhaps you could start

by supporting ALL of your listmates, not just the ones in situations

most like your own.

Ruth

[Guest guest]

My point is being proven over and over again. It is very obvious that your

children and Clay's as well as mine present completely different challenges,

skills, weaknesses ...etc then why the heck we are on the same list. I tell

you why ....because the medical community/schools have decided that anyone

that present any " out of the norm " behaviors should be embraced under the

" SPECTRUM " . Of all I know, each of our children has completely different

medical reasons for their " AUTISM " and yet they all are looked at as one

group treated with the same drugs, teaching methodologies, diets,

therapies....etc.

How else then can we explain why some children " recover " because of a

certain therapy but others don't.

That is the kind of coverage and investigational that needs to be reported

and investigated by the media and the medical community, and I find it is

the least paid attention to.

Re: venting

>

>> OK, I'm coming out of the closet. I can't relate to most people who

>> post on autism boards either, and the education issues are a perfect

>> example. Intellectually I can understand why a parent with a higher-

>> functioning child would hate their school system because its not

>> providing a particular type of instruction, or didn't stop some

>> teasing on the playground. ...

>

> I don't know if you meant this the way it is coming off to me, but it

> is attitudes like this that make the lives of our upper spectrum ASD

> kids difficult. Many people say, in one way or another, that since

> our kids seem almost normal they don't have serious problems. They

> trivialize these kids' needs just like you did. As is often the case,

> since they haven't experienced it, they don't realize how deep the

> differences and difficulties run.

>

> If you want people to support your family's differences and want to

> support an attitude of tolerance in general, perhaps you could start

> by supporting ALL of your listmates, not just the ones in situations

> most like your own.

>

> Ruth

>

>

> ------------------------------------

>

> Texas Autism Advocacy

> www.TexasAutismAdvocacy.org

>

> Texas Disability Network

> Calendar of Events

> www.TexasAutismAdvocacy.org

[Guest guest]

>

> My point is being proven over and over again. It is very obvious

that your

> children and Clay's as well as mine present completely different

challenges,

> skills, weaknesses ...etc then why the heck we are on the same list.

Well, I'll tell you why I'm on the same list. Because we do have some

similar problems, for example, we all have IDEA, Section 504, and TEA

and local Texas school districts to deal with.

I am also on some more specialized lists just for parents of AS kids,

gifted kids, and kids who are both gifted and AS. But none of them

are just Texas, so that piece is lacking.

I tell

> you why ....because the medical community/schools have decided that

anyone

> that present any " out of the norm " behaviors should be embraced

under the

> " SPECTRUM " .

I really don't see this myself. The different " types " of autism have

different diagnostic criteria, different interventions, and I've never

had anybody medical or school-wise suggest my currently inclusion AS

child be, say, put a self-contained SPED classroom.

And I don't have any problems separating out which posts are

appropriate to me, so that is not a problem. For example, I see " ABA "

and I may skip that post since that doesn't apply to AS kids. When I

see " vaccines " , I may skip that since AS is more hereditary.

I do think it would be helpful for people to incorporate their child's

age and dx into their posts to avoid confusing newbies.

> That is the kind of coverage and investigational that needs to be

reported

> and investigated by the media and the medical community, and I find

it is

> the least paid attention to.

I agree with everything you say about the coverage in " the media " , but

I think they are annoying this way in all subjects. The popular media

is not where one goes for in-depth research coverage. Not that there

is anything wrong with trying to get your voice heard and trying to

change things, but IMHO you need to keep it in perspective.

I try to get people to read better stuff.

Ruth

[Guest guest]

" I have often been asked what " gift " does my son have "

I met some parents who respond to this question by saying (somewhat

sarcastically), " He does our taxes. "

It's great when you can keep your sense of humor.

>

> While my post did not intend in anyway belittling the challenges of

parents

> with " high functioning " children, your post really makes my point.

We just

> have completely different challenges, and lumping everyone under

the " lazy "

> definition of Autism does not do anyone any service.

>

> That's why I am not keen about the media portraying one type of

Autism per

> say. You always hear about the success stories or the savants with

the

> unusual gifts.

>

> I have often been asked what " gift " does my son have, which I often

answer

> He is the " gift " .

>

>

> Re: venting

>

>

> , you are absolutely right. My wife and I have had that same

> anguish for the last five years. When it comes to this thing called

> an Autism Spectrum Disorder, people tend to focus on the " austism "

> part rather than the " spectrum " part.

>

> I think it's easier for most people, including reporters, to relate

> to higher functioning children with autism because those kids

> are " soooo close to normal " . Successful children were within reach

> of those parents, but they missed it by such a slim margin. It's

> easier for parents with only traditional kids to empathize with

these

> families, as they closely resemble their own.

>

> Our kids are at the far opposite end of the spectrum. I refer to our

> family as " the circus " because that's exactly what we look like as

we

> walk through the mall, a restaurant, or church. Our next door

> neighbors still tense up when they see our kids, as though their

> condition is contageous. I've heard that typical parents can hire

> people called " babysitters " to watch their children for an evening.

> WOW, where could we find some of those!? Our family doesn't resemble

> anyone in the common world.

>

> We have two eight year olds with no speech, are not potty trained,

> incapable of dressing themselves, whose only fun is to bounce a ball

> all day or sit in the bathtub, and who cry for hours on end. Unless

> someone has personally lived with these issues, it is absolutely

> impossible for them to understand.

>

> OK, I'm coming out of the closet. I can't relate to most people who

> post on autism boards either, and the education issues are a perfect

> example. Intellectually I can understand why a parent with a higher-

> functioning child would hate their school system because its not

> providing a particular type of instruction, or didn't stop some

> teasing on the playground. Emotionally, however, the Boatrights love

> our school because they willingly open their doors to our low-

> functioning children everyday.. Yes, it's taken 50 years of parents

> fighting for that to occur, but thank God it has. That's why I

> support the organizations which helped make that happen.

>

> All that said, here's what I know. God created all of us, and He

> doesn't make mistakes (Psalm 139:13-16). God can use all of us,

> including people with disabilities, for His purpose ( 9:1-3).

> Parents dealing with severe challenges do so in order that their

> faith " may proved genuine and may result in praise, glory, and honor

> when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

> reporters are going to tell that story either.

>

> Thanks for venting. I feel better, too! - Clay

>

> PS: This diatribe was approved by my wife.

>

>

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

[Guest guest]

, I think you are exactly right, especially when it comes to research. I

think we are

talking about several different 'strains' of autism, and several different

causes. My dd

never had sleep issues, gut issues, or seizures, but she has sensory challenges.

If you

walk by her with a crying child, don't be surprised if she tries to run up and

kick you(!)

Autism should be regarded as no different than cancer when it comes to research.

Cancer

research takes place in so many avenues because we know that causes vary -

genetic,

smoking, etc. I wish that same breakdown would take place for autism.

Kim

PS. I am sorry your ds bears such terrible treatment in school. My dd's

classmates have

pretty much embraced her, although obviously there are differences socially. She

gets

invited to parties, asked to play and no one makes fun of her. I think schools

have to

demonstrate a positive, accepting attitude and zero tolerance for bullies. Hope

things get

better.

> >> OK, I'm coming out of the closet. I can't relate to most people who

> >> post on autism boards either, and the education issues are a perfect

> >> example. Intellectually I can understand why a parent with a higher-

> >> functioning child would hate their school system because its not

> >> providing a particular type of instruction, or didn't stop some

> >> teasing on the playground. ...

> >

> > I don't know if you meant this the way it is coming off to me, but it

> > is attitudes like this that make the lives of our upper spectrum ASD

> > kids difficult. Many people say, in one way or another, that since

> > our kids seem almost normal they don't have serious problems. They

> > trivialize these kids' needs just like you did. As is often the case,

> > since they haven't experienced it, they don't realize how deep the

> > differences and difficulties run.

> >

> > If you want people to support your family's differences and want to

> > support an attitude of tolerance in general, perhaps you could start

> > by supporting ALL of your listmates, not just the ones in situations

> > most like your own.

> >

> > Ruth

> >

> >

> > ------------------------------------

> >

> > Texas Autism Advocacy

> > www.TexasAutismAdvocacy.org

> >

> > Texas Disability Network

> > Calendar of Events

> > www.TexasAutismAdvocacy.org

[Guest guest]

Thank you for sharing about high functioning kids. I feel so alone right now

because son has regressed and is having frequent meltdowns. They have put him

in ISS and it has become worse. They KNOW it all and it is so frustrating.

Each one of our kids would have some similarities but would still look very

different and I can't seem to get our KNOW it alls to understand this...has any

one had any success with schools who throw at you... " well I have worked with

many students with AU before... " They think they know it all and it is

frustrating. They want to write an FBA w/o my input! Well, I guess I am

venting...

Re: venting

, you are absolutely right. My wife and I have had that same

anguish for the last five years. When it comes to this thing called

an Autism Spectrum Disorder, people tend to focus on the " austism "

part rather than the " spectrum " part.

I think it's easier for most people, including reporters, to relate

to higher functioning children with autism because those kids

are " soooo close to normal " . Successful children were within reach

of those parents, but they missed it by such a slim margin. It's

easier for parents with only traditional kids to empathize with these

families, as they closely resemble their own.

Our kids are at the far opposite end of the spectrum. I refer to our

family as " the circus " because that's exactly what we look like as we

walk through the mall, a restaurant, or church. Our next door

neighbors still tense up when they see our kids, as though their

condition is contageous. I've heard that typical parents can hire

people called " babysitters " to watch their children for an evening.

WOW, where could we find some of those!? Our family doesn't resemble

anyone in the common world.

We have two eight year olds with no speech, are not potty trained,

incapable of dressing themselves, whose only fun is to bounce a ball

all day or sit in the bathtub, and who cry for hours on end. Unless

someone has personally lived with these issues, it is absolutely

impossible for them to understand.

OK, I'm coming out of the closet. I can't relate to most people who

post on autism boards either, and the education issues are a perfect

example. Intellectually I can understand why a parent with a higher-

functioning child would hate their school system because its not

providing a particular type of instruction, or didn't stop some

teasing on the playground. Emotionally, however, the Boatrights love

our school because they willingly open their doors to our low-

functioning children everyday.. Yes, it's taken 50 years of parents

fighting for that to occur, but thank God it has. That's why I

support the organizations which helped make that happen.

All that said, here's what I know. God created all of us, and He

doesn't make mistakes (Psalm 139:13-16). God can use all of us,

including people with disabilities, for His purpose ( 9:1-3).

Parents dealing with severe challenges do so in order that their

faith " may proved genuine and may result in praise, glory, and honor

when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

reporters are going to tell that story either.

Thanks for venting. I feel better, too! - Clay

PS: This diatribe was approved by my wife.

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now. http://mobile.

<http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ>

yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

>

> ...has any one had any success with schools who throw at you... " well

I have worked with many students with AU before... " They think they

know it all and it is frustrating. They want to write an FBA w/o my

input!

Hi . I have a 13yo with AS in public schools. I had to go out

and get a bunch of private evaluations, in each of his problem areas,

on my own initiative and on my own dime. They were quite telling and

the school has been listening to them. Things are changing and he has

gotten a lot more accommodations; and we aren't done yet.

But I know what you mean. There are a lot of things on the eval

reports that I've been trying to tell them, but they wouldn't listen

to it coming from me.

I also do a lot of networking up and down the ladder from the state

level on down. Even if you don't file a complaint (I never have),

whoever you are talking to immediately contacts your child's school or

school district to let them know you have concerns and discuss it.

That usually brings in some different heads to work on the problem,

which usually helps. So, I think another one of the keys is to go

above the head of whoever is stone-walling you. I always start with

the principal or some administrator, then the school district SPED

office, and that usually gets things moving right there.

I hope this helps!

Ruth

[Guest guest]

I have heard that from several families who have two kids. One seems to do

well with the treatments, and the other child doesn’t respond as well to the

same treatments—even though they are in the same family!!!!! And the

families I’m think of both had the YOUNGER kid not respond. I know of

another family with two kids in the spectrum where the younger one responded

very well and by 3 was completely out of it. I hope those on the list who

do have two kids will respond.

You know, I feel guilty too that my son still needs an aide in school. . . .

..should we have found a better ABA provider earlier??? I have to

consistently remind myself that this is his journey. He has come on to this

earth to sing his particular song. I just have to have remember that it’s

my job to have faith in that. One of the lessons that I’m still learning

about all of this is that they most any parent can truly hope for their

child is that they are happy.

S.

" Most people say that is it is the intellect which makes a great scientist.

They are wrong: it is character. "

Albert Einstein

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of maryebe

Sent: Thursday, May 01, 2008 9:41 AM

To: Texas-Autism-Advocacy

Subject: [sPAM]Re: [sPAM] venting

I have 2 kids who were diagnosed. My youngest is recovered. I cannot

explain why my daughter recovered and my son has not. She certainly

seemed more severe than my son when she was diagnosed,

No virus found in this outgoing message.

Checked by AVG.

Version: 7.5.524 / Virus Database: 269.23.7/1409 - Release Date: 5/1/2008

8:39 AM

[Guest guest]

! Clay! Oh my - you must've heard me! I am so glad someone

besides me " sees " this. It is indeed wonderful that this remarkable

thing is happening to other's children, but what about those like

mine or shall I say ours. That's why I wanted to get an eMail to

Greg Groogan at Fox 26 news. (Someone forwarded it to him for me.

Thank you- whoever did that). He informed me that he would have a

segment about " older folks with autism " on tonight. And said that it

really moved him how these young men were living a productive and

dignified life in at this ranch in Arizona. Even though I missed it:(

I felt it still wouldn't have any relation to young adults like

mine. My son is 18 with no effective means of communication and

totally dependant on us. I have to do a lot of guessing, I know what

it feels like to not have family support. Hell my family wouldn't

have the slightest clue. They have never seen him outside of being

within my reigns. Of his 18 years none of them have ever bothered to

give him the time of day; never baby sat for me even when he was a

baby. Going places can be very trying especially if hubby isn't

around. I cannot let him go into the men's rr alone, but he is too

big to go into the women's rr. So I have to sneak him in and hurry

and watch out in case someone catches us and then explain. We got

caught one day and scared the crap out of a lady and I tried to

explain and I was just in severe tears because I just - what do you

do? Tell him to hold it? Let him have an accident?(After I told her

she was very sweet about it; even told me to stop apologizing for

it). I don't know what to do, but I can say he is very well

adjusted. Boy we try so hard. I have to bathe my 18 year old like he

is 18 months, tie his shoes, make sure his shirt or shoes aren't on

backwards- every little thing. It is hard and not to mention,

unfortunately, I'm not getting any younger. But this is something

that in light of all of the " exposure " nobody is talking about this.

Did they think there was only one kind? What about bringing light to

these children and the way the schools try their best not to help or

give you what you need at all costs. My son has been in school

almost all his life and what has he learned??? Absolutely nothing.

He has been matching stupid a** colors since he was in 5th grade and

mastered it over and over again and is BORED to pieces. Just tonight

we were in Walgreens and my son was looking in the mirror and you

know, walking away and going back. Well the security guard charged

over to him and just then my boy walked away. And a girl that was

with him burst out laughing (I guess they had a little jokey-joke).

But I shut both of them up - and quick. I told my son to go back and

do what he was doing bc he wasn't doing anything wrong. He wasn't

bothering anyone or stuffing sunglasses in his pocket, he was just

standing there looking in the mirror. At first I didn't even tell

them he was Autistic because in my mind he was a person looking in

the mirror. I asked did they have a problem with him looking in the

mirror and they both got quiet. I just told them that he wasn't

bothering anything and they better not bother him. Then I decided to

tell them he was autistic and they both looked stupid. Their

ignorance was really an insult. Enough! I could go on and on and on.

But do you feel me? People need to know that it is not always a

happy story. Everyone doesn't recover or have the means to afford

all the latest recovery methods and even so, everyone doesn't

recover. In the case of my son, look at his age-- half the therapies

that are out now that are helping children weren't even out when he

was of the age or maybe I was just looking in the wrong places to

the wrong people. No one could give me answewrs. We went everywhere

I could find. There was no internet then i had to go with what I

had. Doctors, dentist so many of them have no experience handling

our young adults. Once they are out of the pediatric scope what do

you do? UT just wants to completely sedate them just to look at

them. I am outraged and very frustrated and very lost. Okay- Enough.

thanks for letting me partially vent. Trust me I have way more to

go.~~Keisha W.

>

> , you are absolutely right. My wife and I have had that same

> anguish for the last five years. When it comes to this thing

called

> an Autism Spectrum Disorder, people tend to focus on the " austism "

> part rather than the " spectrum " part.

>

> I think it's easier for most people, including reporters, to

relate

> to higher functioning children with autism because those kids

> are " soooo close to normal " . Successful children were within

reach

> of those parents, but they missed it by such a slim margin. It's

> easier for parents with only traditional kids to empathize with

these

> families, as they closely resemble their own.

>

> Our kids are at the far opposite end of the spectrum. I refer to

our

> family as " the circus " because that's exactly what we look like as

we

> walk through the mall, a restaurant, or church. Our next door

> neighbors still tense up when they see our kids, as though their

> condition is contageous. I've heard that typical parents can hire

> people called " babysitters " to watch their children for an

evening.

> WOW, where could we find some of those!? Our family doesn't

resemble

> anyone in the common world.

>

> We have two eight year olds with no speech, are not potty trained,

> incapable of dressing themselves, whose only fun is to bounce a

ball

> all day or sit in the bathtub, and who cry for hours on end.

Unless

> someone has personally lived with these issues, it is absolutely

> impossible for them to understand.

>

> OK, I'm coming out of the closet. I can't relate to most people

who

> post on autism boards either, and the education issues are a

perfect

> example. Intellectually I can understand why a parent with a

higher-

> functioning child would hate their school system because its not

> providing a particular type of instruction, or didn't stop some

> teasing on the playground. Emotionally, however, the Boatrights

love

> our school because they willingly open their doors to our low-

> functioning children everyday. Yes, it's taken 50 years of parents

> fighting for that to occur, but thank God it has. That's why I

> support the organizations which helped make that happen.

>

> All that said, here's what I know. God created all of us, and He

> doesn't make mistakes (Psalm 139:13-16). God can use all of us,

> including people with disabilities, for His purpose ( 9:1-3).

> Parents dealing with severe challenges do so in order that their

> faith " may proved genuine and may result in praise, glory, and

honor

> when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

> reporters are going to tell that story either.

>

> Thanks for venting. I feel better, too! - Clay

>

> PS: This diatribe was approved by my wife.

>

[Guest guest]

Hi Keisha -

Your note is actually a great inspiration for me. You have been

dealing with severe issues on a magnitude which most people can not

imagine, and you've been playing this game for 10 years longer than I

have. I am encouraged to know that if my kids don't improve

significantly over the next 10 years, that's OK. You demonstrate

daily that, though it is incredibly difficult, life still continues

and can be managed.

I can't help but wonder how you and your son have influenced others

in ways you may not even know. You encountered a couple of stupid

people at Walgreens tonight. Hopefully, because of your

conversation, they are no longer stupid. Perhaps that will manifest

itself positively the next time they meet someone different from

themselves.

I'm sure you've experienced the glares of strangers in public; I know

we have. We were at Macaroni Grill on Mother's Day last year when

our twins decided to get upset. People stared, but that's not

unusual. What stuck out was the elderly woman at the table next to

ours, celebrating Mother's Day with her family full of typical kids.

When their meal was over and they started to leave, this grandmother

walked over to my wife, placed her hand on Carole's shoulder, and

gently said " you're doing a great job " . Then she walked away.

Tucked away among the stares of the stupid are people like that

grandmother. They may not have the chance to come up and offer

comfort, but they see you working with your son, and are truly

impressed. So am I.

Thanks for sharing. - Clay

> >

> > , you are absolutely right. My wife and I have had that same

> > anguish for the last five years. When it comes to this thing

> called

> > an Autism Spectrum Disorder, people tend to focus on

the " austism "

> > part rather than the " spectrum " part.

> >

> > I think it's easier for most people, including reporters, to

> relate

> > to higher functioning children with autism because those kids

> > are " soooo close to normal " . Successful children were within

> reach

> > of those parents, but they missed it by such a slim margin. It's

> > easier for parents with only traditional kids to empathize with

> these

> > families, as they closely resemble their own.

> >

> > Our kids are at the far opposite end of the spectrum. I refer to

> our

> > family as " the circus " because that's exactly what we look like

as

> we

> > walk through the mall, a restaurant, or church. Our next door

> > neighbors still tense up when they see our kids, as though their

> > condition is contageous. I've heard that typical parents can

hire

> > people called " babysitters " to watch their children for an

> evening.

> > WOW, where could we find some of those!? Our family doesn't

> resemble

> > anyone in the common world.

> >

> > We have two eight year olds with no speech, are not potty

trained,

> > incapable of dressing themselves, whose only fun is to bounce a

> ball

> > all day or sit in the bathtub, and who cry for hours on end.

> Unless

> > someone has personally lived with these issues, it is absolutely

> > impossible for them to understand.

> >

> > OK, I'm coming out of the closet. I can't relate to most people

> who

> > post on autism boards either, and the education issues are a

> perfect

> > example. Intellectually I can understand why a parent with a

> higher-

> > functioning child would hate their school system because its not

> > providing a particular type of instruction, or didn't stop some

> > teasing on the playground. Emotionally, however, the Boatrights

> love

> > our school because they willingly open their doors to our low-

> > functioning children everyday. Yes, it's taken 50 years of

parents

> > fighting for that to occur, but thank God it has. That's why I

> > support the organizations which helped make that happen.

> >

> > All that said, here's what I know. God created all of us, and He

> > doesn't make mistakes (Psalm 139:13-16). God can use all of us,

> > including people with disabilities, for His purpose ( 9:1-

3).

> > Parents dealing with severe challenges do so in order that their

> > faith " may proved genuine and may result in praise, glory, and

> honor

> > when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

> > reporters are going to tell that story either.

> >

> > Thanks for venting. I feel better, too! - Clay

> >

> > PS: This diatribe was approved by my wife.

> >

>

[Guest guest]

I saw someone mention not having the treatments and therapy when

their child was young. I'm grateful for progress in treatment,

understanding, and technology. I know several people claim to

have 'invented' the internet. But..whoever did, I love them;). I

can't imagine being on this journey without it.

We come to this forum and type out thoughts that those with NT kids

could never understand. Reading some of your thoughts put my feelings

and thoughts into perspective often. I felt pretty hopeless last night

(this morning your words inspire me)...as I watched my brilliant

little child become enraged because I attempted to curb his stimming

session. He looked at me and said 'play'(the same way he did when he

finished eating fries @ Chuck E. Cheese's and wanted to leave the

table last weekend). I thought..he really thinks he's 'playing'. Of

coarse stimming is nothing new, but..

Anyway, we can all attest to the fact that dealing with people who

have no compassion or undetstanding in public and private is

maddening. When kids 'look normal' often people are even more

confused and sometimes even less compassionate. If I have one more

person say '..but he's so cute or he's precious though..' after I

explain an inappropriate behavior or ASD to them...I'll lose it. As

if 'cute' and autism can't coexist.. maybe they are at a loss for

anything intelligent to say.

My favorite is when a child makes a derogatory remark about my

son/stares endlessly/laughs at him and the parent does nothing to

correct the child. One day, I was bent over picking up something that

I dropped in the middle of a minor public meltdown. The little girl

next to us in line loudly said 'he's...crazy'. As I raised up, her

mother and I made eye contact and she stood there with her arms

crossed/stoned faced. Her look told me she was thinking the same

thing, but her 6 year old was the one who actually thought out loud.

> >

> > Clay -

> >

> > Let me begin with this, I am thankful that my son is on the high

> functioning level of autism (verbal, potty trained, etc). I commend

> and God (or insert that whom you worship - or none at all) bless the

> parents who have a child or children that are more adversely

affected

> by the spectrum.

> >

> > I am not saying that a high functioning child is any more

difficult

> than what you face every day, and I am not attacking IN ANY WAY,

> but this area of the " spectrum " comes with it's own set of

challenges.

> >

> > My son is becoming aware that he is " different " . He has crushes

on

> girls and does not understand why they don't want to be his

girlfriend

> (most of the girls have been kind to him and declined politely). He

> wants to go to birthday parties, overnight parties, the movies, etc.

> and doesn't understand why he is never invited. He wants to and

> tries soooo hard to " fit in " but he doesn't. So that leaves us in a

> position to try to delicately explain to him why.

> >

> > But the explanations don't take the hurt out of his eyes, or make

> him any less lonely. I know - and the psychologist have advised

us -

> that someday we may have to explain to him that he will never live

> independently from us, he may never have a girlfriend, much less a

> wife and children. How do you explain to him that it is not because

> he is un-loveable, when that is exactly what he will think.

> >

> > Every day he gets out of the car to go to school - I pray to God

> that they will be kind to him today. I pray that those little

creeps

> that torment him and call him a " retard " will either get tired of

it,

> be absent, or have wised up. I pray that the teachers in his school

> won't give up on him and will really work with him to learn

something

> new. I pray that no one takes advantage of him today.

> >

> > While these kids may be " sooo close to normal " , they aren't and

that

> is what makes them more susceptible to teasing and torment. If the

> other kids see a low functioning child - for the most part they will

> leave the child alone.. If the child is high functioning and

> mainstreamed - they are the target of the bullies. My son has been

> pushed, beaten, spit at, tripped, had food thrown on him, had things

> taken away from him, verbally tormented and emotionally abused.

There

> have been at least 4 kids that have been sent to alternative school

> because they would not cease tormenting him. Unless I demand that

the

> school provide the tools necessary for him to become more

independent

> - for him to have the tools necessary to interact with typical

people,

> then this will be how the rest of his life will be.

> >

> > People don't sympathize with parents of high functioning

children.

> When we go out in public, we still get the stares, we still get

judged

> as to why we don't discipline our child when they throw a tantrum -

> because they still throw them. We are still judged when they see

the

> child have a meltdown and it appears that the parent is not doing

> anything. They don't know that if I touch him in the middle of a

> tantrum - I will escalate it and I can't pick him up and carry him

to

> the car anymore. ( 6ft and 185). By all outward appearances, he

looks

> " normal " - only after a few minutes do people realize that he is a

> little different.

> >

> > I am very fortunate. I am in a better situation than most of the

> parents on this board and I realize that. I am able to have some

time

> away from the challenges of my son's disorder. I have a wonderful

> husband, we have been married for 11 months. He is active in every

> aspect of my son's care from dr's appts to meds to school to just

> hanging out with him and teaching him to be a man. I have wonderful

> in-laws that will watch him and care for him. (His granmama spoils

> him rotten.). Yes, I am very fortunate.

> >

> >

> >

> > Re: venting

> >

> >

> > , you are absolutely right. My wife and I have had that same

> > anguish for the last five years. When it comes to this thing

called

> > an Autism Spectrum Disorder, people tend to focus on

the " austism "

> > part rather than the " spectrum " part.

> >

> > I think it's easier for most people, including reporters, to

relate

> > to higher functioning children with autism because those kids

> > are " soooo close to normal " . Successful children were within

reach

> > of those parents, but they missed it by such a slim margin. It's

> > easier for parents with only traditional kids to empathize with

these

> > families, as they closely resemble their own.

> >

> > Our kids are at the far opposite end of the spectrum. I refer to

our

> > family as " the circus " because that's exactly what we look like

as we

> > walk through the mall, a restaurant, or church. Our next door

> > neighbors still tense up when they see our kids, as though their

> > condition is contageous. I've heard that typical parents can hire

> > people called " babysitters " to watch their children for an

evening.

> > WOW, where could we find some of those!? Our family doesn't

resemble

> > anyone in the common world.

> >

> > We have two eight year olds with no speech, are not potty

trained,

> > incapable of dressing themselves, whose only fun is to bounce a

ball

> > all day or sit in the bathtub, and who cry for hours on end.

Unless

> > someone has personally lived with these issues, it is absolutely

> > impossible for them to understand.

> >

> > OK, I'm coming out of the closet. I can't relate to most people

who

> > post on autism boards either, and the education issues are a

perfect

> > example. Intellectually I can understand why a parent with a

higher-

> > functioning child would hate their school system because its not

> > providing a particular type of instruction, or didn't stop some

> > teasing on the playground. Emotionally, however, the Boatrights

love

> > our school because they willingly open their doors to our low-

> > functioning children everyday.. Yes, it's taken 50 years of

parents

> > fighting for that to occur, but thank God it has. That's why I

> > support the organizations which helped make that happen.

> >

> > All that said, here's what I know. God created all of us, and He

> > doesn't make mistakes (Psalm 139:13-16). God can use all of us,

> > including people with disabilities, for His purpose ( 9:1-3).

> > Parents dealing with severe challenges do so in order that their

> > faith " may proved genuine and may result in praise, glory, and

honor

> > when Jesus Christ is revealed. " (1 1:6-7). Sadly, not many

> > reporters are going to tell that story either.

> >

> > Thanks for venting. I feel better, too! - Clay

> >

> > PS: This diatribe was approved by my wife.

> >

> >

> >

> >

> >

>

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> >

> >