It's been a long time!!!

[Guest guest]

Hi all.... Can you believe that is going to be a senior this fall???

He made it into the vocational program for graphic communications this time! So

we are excited about that. He will be eligible to go post-graduate to the 2nd

year of the class as well. He's doing better this year. His anxiety has

decreased a lot. I attribute that to his case manager, that he's had for the

past two years. He totally understands asperger's (the FIRST person in the

school system that I've met who does!), and has helped advocate for

himself and deal with his anxiety!!! has felt very comfortable with this

case manager and feels he can go to him when necessary and the case manager can

get on his case (so to speak) when he's not doing what he's supposed to in a way

that makes comply! So it's been great! One more year!

However, I've been dealing with some issues with my youngest daughter, ,

whom I believe is possibly on the spectrum. I am leaning more and more towards

asperger's, but cannot put a finger on a definite other than she has some

auditory processing disorder. I think the teacher this year is just oblivious to

what is going on. I don't think she's aware enough (or pays enough attention to

the kids) to see any issues that I've discussed. I had a child study done in

March for her, but nothing came of it except that everything that I was seeing

was in her goals for speech. So, now I have to wait for the line between speech

effecting her daily life vs. it all relating to speech to be crossed. So far,

they don't see it at school. But, it will come, I believe. It took until the end

of 3rd grade for us to persue 's issues. No one at school had a problem

with him. Until I had him diagnosed and evalutated. But, the assistant

principal, who is new this year,

did end the child study with having them re-evaluate her in conjunction with

her IEP in November, so hopefully the new teacher will " see " what is going on

with her and have it noted by the time the child study/IEP takes place in

November. One can hope! It's become overwhelming, to say the least. So, you'll

probably be seeing me back on here asking for help for her in the future.

I do have a question though. Wanting to know what you think of a statement from

people who say that your child can overcome whatever their " issues " are if they

just really try to. Or that they can control their behaviors or thoughts if they

just willed them to. I have met a lot of people over the years who believe that

people with OCD and asperger's can do things they don't want to (really can't)

if they just did it. That " it's life " . No understanding that these kids

sometimes CAN'T do it. What would you say to that? Especially if the person is

not open to any idea saying otherwise. Even if these people struggle with kids

that have issues???

I do no longer try to " convince " them otherwise, but I just wondered how you all

react to such statements.

Thanks.

Melinda

Mom to (almost 17!!!) AS, ADHD, OCD

Casey, 14, NT

, speech delay, CAPD, possible PDD

Zac, SEVERE peanut allergy (wah) and possibly ADHD

[Guest guest]

Hi Melinda! Glad you checked in! No I cannot believe will be a senior. Wow! I am so glad to hear things are going so well for him. It is amazing what having the right people in place can do, isn't it!!

I am kind of going down a similar path with my youngest ds. He isn't AS or HFA. I don't think he is. He is very "aspie on the edges" though. I am sure by some standards, he would fit a dx. He is struggling with reading (dyslexic) but he is smart. So with a lot of effort and work, he can maintain things. For instance, when he was learning to read, he spent 3 hours more per day in some kind of tutoring or practice in order to catch up to his grade level in reading. It was a huge amount of work. Somedays he comes home, slams the door and gets in the bathtub without even saying a thing. (The OT said, "That's a good thing - he knows how to calm down..." instead of "How awful that he has to expel that much frustration when he gets home!" lol but I guess we just see it differently...) Well, anyway, since they aren't having the problems, it isn't a problem. So I know what you mean!! Here at my school, they are big into "RTI" (Response to Intervention) which means they provide help but then it stops as soon as the kid is back on track. They don't have to evaluate or be responsible beyond just keeping the kid at passing levels. In some respects, that is a good thing. But in other ways, it is not a good thing. It's been a stressful year for me in this regard.

Anyway, how do I deal with the people who think a neurological condition is a matter of will? lol. It depends on the person and the situation. For our families, who did not get it for a long long time, we educated. We spent large amounts of time focusing their attention and sending them info and telling them things ("No, he is not hiding under the table because he is pretending to be a cat. He is hiding because he is overwhelmed." and "No, he is not spending two hours counting those pennies because he is going to be a banker someday. He has autism and this is an obsession he has. Most two years olds can't count to 200....") We must have said the "A" word a zillion times before they could face it and start to appreciate it.

At a meeting not long ago, a sped teacher was lecturing my 20 yo on how he has to "take responsiblity" and "follow through" and on and on she went. If she had not stopped soon, I would have had to cut her off and say something. But she didn't go on too long, then she was satisfied that she had cured autism, lol, and went on with the meeting. My 20 yo is not a talker, so he didn't speak up and wouldn't have. I would have eventually if she had kept it up. If my ds was 10, I might have spent more time and effort in educating this person. But he won't see her again. And I won't. So let's just get through it.

I think on the whole, I usually say something snippy to people in passing. If it is someone I have to work with, I won't say something snippy because it will create a problem. But I usually just say something like, "You've cured autism, wow" or "I wish it was a matter of personal will as opposed to a neurological disability. Wouldn't that be nice for us all!" The amount of effort I put in to it depends on how much I will have to work with the person I am dealing with.

If you are asking in reference to having to deal with your dd's issues at school, I want to add that it is so important that we (parents) advocate extra hard for these kinds of kids. So often, it is easy to label these kids as lazy instead of seeing that they are failing and giving up. You may not get everyone to understand, but it's important to try. I am reading a good book on motivation that really helps explain these kinds of kids. I am also reading a book on executive dysfunction that is insightful. I know, don't I live the exciting life here. lol. But the more I understand, the more I can explain to them. So I just keep learning.

Roxanna

Autism Happens

( ) It's been a long time!!!

Hi all.... Can you believe that is going to be a senior this fall???

He made it into the vocational program for graphic communications this time! So we are excited about that. He will be eligible to go post-graduate to the 2nd year of the class as well. He's doing better this year. His anxiety has decreased a lot. I attribute that to his case manager, that he's had for the past two years. He totally understands asperger's (the FIRST person in the school system that I've met who does!), and has helped advocate for himself and deal with his anxiety!!! has felt very comfortable with this case manager and feels he can go to him when necessary and the case manager can get on his case (so to speak) when he's not doing what he's supposed to in a way that makes comply! So it's been great! One more year!

However, I've been dealing with some issues with my youngest daughter, , whom I believe is possibly on the spectrum. I am leaning more and more towards asperger's, but cannot put a finger on a definite other than she has some auditory processing disorder. I think the teacher this year is just oblivious to what is going on. I don't think she's aware enough (or pays enough attention to the kids) to see any issues that I've discussed. I had a child study done in March for her, but nothing came of it except that everything that I was seeing was in her goals for speech. So, now I have to wait for the line between speech effecting her daily life vs. it all relating to speech to be crossed. So far, they don't see it at school. But, it will come, I believe. It took until the end of 3rd grade for us to persue 's issues. No one at school had a problem with him. Until I had him diagnosed and evalutated. But, the assistant principal, who is new this year,

did end the child study with having them re-evaluate her in conjunction with her IEP in November, so hopefully the new teacher will "see" what is going on with her and have it noted by the time the child study/IEP takes place in November. One can hope! It's become overwhelming, to say the least. So, you'll probably be seeing me back on here asking for help for her in the future.

I do have a question though. Wanting to know what you think of a statement from people who say that your child can overcome whatever their "issues" are if they just really try to. Or that they can control their behaviors or thoughts if they just willed them to. I have met a lot of people over the years who believe that people with OCD and asperger's can do things they don't want to (really can't) if they just did it. That "it's life". No understanding that these kids sometimes CAN'T do it. What would you say to that? Especially if the person is not open to any idea saying otherwise. Even if these people struggle with kids that have issues???

I do no longer try to "convince" them otherwise, but I just wondered how you all react to such statements.

Thanks.

Melinda

Mom to (almost 17!!!) AS, ADHD, OCD

Casey, 14, NT

, speech delay, CAPD, possible PDD

Zac, SEVERE peanut allergy (wah) and possibly ADHD

Wanna slim down for summer? Go to America Takes it Off to learn how.

[Guest guest]

uh huh, there are some days you just cannot 'win'. there just 'ain't' enough mom

to go around! been there, felt that way, but YOU know all that you do so do not

allow anyone to ever detract from the enormous amount of energy and good work

you put forward for both your family and others globally!! you are a champion!!

: )

>

> >

>

> >

>

> > Hi all.... Can you believe that is going to be a senior this fall???

>

> >

>

> > He made it into the vocational program for graphic communications this time!

So we are excited about that. He will be eligible to go post-graduate to the 2nd

year of the class as well. He's doing better this year. His anxiety has

decreased a lot. I attribute that to his case manager, that he's had for the

past two years. He totally understands asperger's (the FIRST person in the

school system that I've met who does!), and has helped advocate for

himself and deal with his anxiety!!! has felt very comfortable with this

case manager and feels he can go to him when necessary and the case manager can

get on his case (so to speak) when he's not doing what he's supposed to in a way

that makes comply! So it's been great! One more year!

>

> >

>

> > However, I've been dealing with some issues with my youngest daughter, ,

whom I believe is possibly on the spectrum. I am leaning more and more towards

asperger's, but cannot put a finger on a definite other than she has some

auditory processing disorder. I think the teacher this year is just oblivious to

what is going on. I don't think she's aware enough (or pays enough attention to

the kids) to see any issues that I've discussed. I had a child study done in

March for her, but nothing came of it except that everything that I was seeing

was in her goals for speech. So, now I have to wait for the line between speech

effecting her daily life vs. it all relating to speech to be crossed. So far,

they don't see it at school. But, it will come, I believe. It took until the end

of 3rd grade for us to persue 's issues. No one at school had a problem

with him. Until I had him diagnosed and evalutated. But, the assistant

principal, who is new this year,

>

> > did end the child study with having them re-evaluate her in conjunction

with her IEP in November, so hopefully the new teacher will " see " what is going

on with her and have it noted by the time the child study/IEP takes place in

November. One can hope! It's become overwhelming, to say the least. So, you'll

probably be seeing me back on here asking for help for her in the future.

>

> >

>

> > I do have a question though. Wanting to know what you think of a statement

from people who say that your child can overcome whatever their " issues " are if

they just really try to. Or that they can control their behaviors or thoughts if

they just willed them to. I have met a lot of people over the years who believe

that people with OCD and asperger's can do things they don't want to (really

can't) if they just did it. That " it's life " . No understanding that these kids

sometimes CAN'T do it. What would you say to that? Especially if the person is

not open to any idea saying otherwise. Even if these people struggle with kids

that have issues???

>

> >

>

> > I do no longer try to " convince " them otherwise, but I just wondered how you

all react to such statements.

>

> >

>

> > Thanks.

>

> >

>

> > Melinda

>

> >

>

> > Mom to (almost 17!!!) AS, ADHD, OCD

>

> > Casey, 14, NT

>

> > , speech delay, CAPD, possible PDD

>

> > Zac, SEVERE peanut allergy (wah) and possibly ADHD

>

> >

>

[Guest guest]

Roxanna you handled it well. It is amazing how well we go do given

the lack of support from especially the education system. For now

we help our children and our faimiles and when we can

we join together to advocate for all special needs children.

You did fabulous!!!

Pam

>

> I was once discussing my youngest ds with his teacher (he does not have AS or

HFA.)? He couldn't get his work organized or done on time and teacher said he

could if " I " spent time checking his planner each day.? Of course, at the time,

I was knee deep in issues with the two others who have HFA - meeting here,

meeting there, issue to deal with, school work problem...yadda yadda yadda.? And

I commented that while it's not fair to my youngest ds, I can't always take on

another task each day.? It depends on the day.? I said it is hard to describe

what it is like but sometimes I am just too overwhelmed to add another task to

my list!? Well, she replied back how she " knows it is hard to manage when you

have other kids " and I don't know...she made it sound like I was just lazy or

something.? lol. Like I meant it was too hard to watch my kid play soccer while

organizing my daughter's cheerleading costumes.? (Neither will I ever have to

do, lol)?

>

> At the time, I was so overwhelmed and I just wanted to explode because the

more the conversation went on, the more she wasn't getting it and the more she

made me feel like I was a failure as a parent because I can't just manage to

keep my youngest ds organized.? I finally just said, " I am sorry I said that - I

shouldn't try explaining what it's like to have kids with special needs.? Most

people just won't understand it. " ? I told her it was not that I was too " busy "

to check his planner, forget the whole conversation, and I just put " keeping

youngest ds organized " on my list of things to do each day.? All I wanted was

for teacher to go away and not discuss it.? No matter how I tried explaining it,

she was never going to get it.? Ugh.? Yep, sometimes you can't explain what it's

like.? People do not want to understand and they equate your experiences to

their own, which are so different.? I suppose that is a natural thing to do for

all people.? But at some point, you would have to admit you haven't had " all "

experiences to appreciate someone who has vastly different experiences.? It can

make a person crazy to try.

>

> Oh, and the ironic part to my sob story here is that I worked my butt off to

keep my youngest ds organized every single day, even if I was going to fall over

from the stress of the day.? By goodness, I had that folder organized!!?

Homework done!!!? I was very proud of myself.? lol...and then teacher wrote on

his report card that " he " had finally improved his organizational skills. Oh

yeah, right.? You can't win.? lol.?

>

>

>

>

>

> ?Roxanna

>

> Autism Happens

>

>

>

>

>

>

> ( ) Re: It's been a long time!!!

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Melinda you asked how do we deal with people saying our kids

>

> can overcome their issuses if they try hard enough ....(or if

>

> Mom only disciplined them or locked them in a room with just bread

>

> and water etc. etc).

>

>

>

> There is such a harsh judgement in those statements. And such

>

> pain and suffering for any parents with special needs children.

>

>

>

> I think what helped me was all the angel therapists that stepped

>

> in to validate my daughter's special needs. They truely are

>

> angels. I look at it like the world has the sensitive soul

>

> types that do understand a lot of things and then there are

>

> the warrior types that like to compete and like to argue over

>

> everything. I try to associate with the sensitive souls of the

>

> world. So the first thing I think with rude comments is

>

> " this is a warrior type " . I don't try to explain to warrior

>

> types they love to argue too much and win.

>

>

>

> The worse offender of giving me advice has been my daughter's

>

> teachers and principal. I usually say to their advice " I wish it was that

easy " without explaining myself. And if the teacher seems to not understand or

won't change her behavior I ask her to talk to our therapist.

>

>

>

> The only time and place I explain my daughter's issues or how we parent is

here in this group or with our therapist. I try to be very open to feedback only

with therapists or parents from this group

>

> and other LD groups.

>

>

>

> People simply have no idea. I have a friend that is a special

>

> education teacher and she too seems unable to understand

>

> even anxiety let alone sensory issues. I really have come

>

> to understand that the warrior types of the world just do not

>

> understand the inner world.

>

>

>

> Our neuropsychologist really helped stopped trying to explain

>

> things when she said some people " can't ever understand " .

>

> I felt let off the hook.

>

>

>

> I hope your daughter gets the services she needs. We say in this

>

> group often how helpful a neurpsychological test is. They often

>

> cost between $2-$5000, and can be done by 3rd grade.

>

> When we had this test done it was so validating for my daughter's

>

> issues, but the school still could not understand what the

>

> results mean. But we did and so did the therapists, advocates,

>

> lawyers that read it and that is all that was really needed.

>

>

>

> Best of luck,

>

> Pam

>

> f

>

>

>

>

>

> >

>

> >

>

> > Hi all.... Can you believe that is going to be a senior this fall???

>

> >

>

> > He made it into the vocational program for graphic communications this time!

So we are excited about that. He will be eligible to go post-graduate to the 2nd

year of the class as well. He's doing better this year. His anxiety has

decreased a lot. I attribute that to his case manager, that he's had for the

past two years. He totally understands asperger's (the FIRST person in the

school system that I've met who does!), and has helped advocate for

himself and deal with his anxiety!!! has felt very comfortable with this

case manager and feels he can go to him when necessary and the case manager can

get on his case (so to speak) when he's not doing what he's supposed to in a way

that makes comply! So it's been great! One more year!

>

> >

>

> > However, I've been dealing with some issues with my youngest daughter, ,

whom I believe is possibly on the spectrum. I am leaning more and more towards

asperger's, but cannot put a finger on a definite other than she has some

auditory processing disorder. I think the teacher this year is just oblivious to

what is going on. I don't think she's aware enough (or pays enough attention to

the kids) to see any issues that I've discussed. I had a child study done in

March for her, but nothing came of it except that everything that I was seeing

was in her goals for speech. So, now I have to wait for the line between speech

effecting her daily life vs. it all relating to speech to be crossed. So far,

they don't see it at school. But, it will come, I believe. It took until the end

of 3rd grade for us to persue 's issues. No one at school had a problem

with him. Until I had him diagnosed and evalutated. But, the assistant

principal, who is new this year,

>

> > did end the child study with having them re-evaluate her in conjunction

with her IEP in November, so hopefully the new teacher will " see " what is going

on with her and have it noted by the time the child study/IEP takes place in

November. One can hope! It's become overwhelming, to say the least. So, you'll

probably be seeing me back on here asking for help for her in the future.

>

> >

>

> > I do have a question though. Wanting to know what you think of a statement

from people who say that your child can overcome whatever their " issues " are if

they just really try to. Or that they can control their behaviors or thoughts if

they just willed them to. I have met a lot of people over the years who believe

that people with OCD and asperger's can do things they don't want to (really

can't) if they just did it. That " it's life " . No understanding that these kids

sometimes CAN'T do it. What would you say to that? Especially if the person is

not open to any idea saying otherwise. Even if these people struggle with kids

that have issues???

>

> >

>

> > I do no longer try to " convince " them otherwise, but I just wondered how you

all react to such statements.

>

> >

>

> > Thanks.

>

> >

>

> > Melinda

>

> >

>

> > Mom to (almost 17!!!) AS, ADHD, OCD

>

> > Casey, 14, NT

>

> > , speech delay, CAPD, possible PDD

>

> > Zac, SEVERE peanut allergy (wah) and possibly ADHD

>

> >

>

[Guest guest]

I definitely share this frustration. I'm totally disabled with fibromyalgia.

I'm the stay at home parent, so to speak, since I'm disabled. People, if they

don't outright think I'm making it up, think I'm just tired. Maybe I could just

try harder with my son? My younger son was diagnosed as ADD about a year and a

half ago. Just a few weeks ago, he was diagnosed with AS.

He's extremely disorganized and often I'm very limited in how much I can help

him. At least he had better teachers this year. Last year, he had one that

complained almost every day, verbally and in writing, about his poor

organization. Even after meetings, his diagnosis, and his educational plan, she

wouldn't budge.

Bronwyn

>

>

> I was once discussing my youngest ds with his teacher (he does not have AS or

HFA.)? He couldn't get his work organized or done on time and teacher said he

could if " I " spent time checking his planner each day.? Of course, at the time,

I was knee deep in issues with the two others who have HFA - meeting here,

meeting there, issue to deal with, school work problem...yadda yadda yadda.? And

I commented that while it's not fair to my youngest ds, I can't always take on

another task each day.? It depends on the day.? I said it is hard to describe

what it is like but sometimes I am just too overwhelmed to add another task to

my list!? Well, she replied back how she " knows it is hard to manage when you

have other kids " and I don't know...she made it sound like I was just lazy or

something.? lol. Like I meant it was too hard to watch my kid play soccer while

organizing my daughter's cheerleading costumes.? (Neither will I ever have to

do, lol)?

>

> At the time, I was so overwhelmed and I just wanted to explode because the

more the conversation went on, the more she wasn't getting it and the more she

made me feel like I was a failure as a parent because I can't just manage to

keep my youngest ds organized.? I finally just said, " I am sorry I said that - I

shouldn't try explaining what it's like to have kids with special needs.? Most

people just won't understand it. " ? I told her it was not that I was too " busy "

to check his planner, forget the whole conversation, and I just put " keeping

youngest ds organized " on my list of things to do each day.? All I wanted was

for teacher to go away and not discuss it.? No matter how I tried explaining it,

she was never going to get it.? Ugh.? Yep, sometimes you can't explain what it's

like.? People do not want to understand and they equate your experiences to

their own, which are so different.? I suppose that is a natural thing to do for

all people.? But at some point, you would have to admit you haven't had " all "

experiences to appreciate someone who has vastly different experiences.? It can

make a person crazy to try.

[Guest guest]

I'm glad others understand how overwhelming the journey with special needs kids

can be. Even my own brothers don't understand. Incidentally, I have fibro too,

and how in the world do I keep up with a child with ADHD, a child with AS, ADHD,

and bipolar, and a child with PDD & /or OCD? And they all have asthma/allergies!

Ginger

> >

> >

> > I was once discussing my youngest ds with his teacher (he does not have AS

or HFA.)? He couldn't get his work organized or done on time and teacher said he

could if " I " spent time checking his planner each day.? Of course, at the time,

I was knee deep in issues with the two others who have HFA - meeting here,

meeting there, issue to deal with, school work problem...yadda yadda yadda.? And

I commented that while it's not fair to my youngest ds, I can't always take on

another task each day.? It depends on the day.? I said it is hard to describe

what it is like but sometimes I am just too overwhelmed to add another task to

my list!? Well, she replied back how she " knows it is hard to manage when you

have other kids " and I don't know...she made it sound like I was just lazy or

something.? lol. Like I meant it was too hard to watch my kid play soccer while

organizing my daughter's cheerleading costumes.? (Neither will I ever have to

do, lol)?

> >

> > At the time, I was so overwhelmed and I just wanted to explode because the

more the conversation went on, the more she wasn't getting it and the more she

made me feel like I was a failure as a parent because I can't just manage to

keep my youngest ds organized.? I finally just said, " I am sorry I said that - I

shouldn't try explaining what it's like to have kids with special needs.? Most

people just won't understand it. " ? I told her it was not that I was too " busy "

to check his planner, forget the whole conversation, and I just put " keeping

youngest ds organized " on my list of things to do each day.? All I wanted was

for teacher to go away and not discuss it.? No matter how I tried explaining it,

she was never going to get it.? Ugh.? Yep, sometimes you can't explain what it's

like.? People do not want to understand and they equate your experiences to

their own, which are so different.? I suppose that is a natural thing to do for

all people.? But at some point, you would have to admit you haven't had " all "

experiences to appreciate someone who has vastly different experiences.? It can

make a person crazy to try.

>

[Guest guest]

Yes, I agree. You'd hope that sped teachers would already "get" that it isn't that simple. But they don't. This one kept talking about how her own ds had "anxiety" and apparently he overcame his issues (therefore, we all can, lol)

Roxanna

Autism Happens

Re: ( ) It's been a long time!!!

At a meeting not long ago, a sped teacher was lecturing my 20 yo on how he has to "take responsiblity" and "follow through" and on and on she went. If she had not stopped soon, I would have had to cut her off and say something. But she didn't go on too long, then she was satisfied that she had cured autism, lol, and went on with the meeting.

That passage says much towards how some people perceive 'ASD' folks. As if everything wrong will all dissolve like magic if they say it can; all the person must do is just try hard enough (to satisfy others)! Pffffffffff! Absolutely no understanding of Autism whatsoever. And, this coming from a special ed. teacher makes it all the more worse.

Wanna slim down for summer? Go to America Takes it Off to learn how.