Re: Need advice on what to request for IEP or 504

[Guest guest]

>

> Her first month of school was pure hell for her, and the teacher told me on

the first day that she felt I needed to pull her out and wait a year because she

was too 'immature' for school. Knowing how very smart this child is, I refused

and went on a quest to find out WHY she was crawling under desks, chewing on

everything, making loud noises at inappropriate times, spinning in circles, head

shaking, and invading others' personal space. She has also had a lifelong

problem following directions and can't seem to do things in a step-by-step

order. She also doesn't grasp concepts well at all. Math is a real challenge

for her. She is on the road to being quite a good reader, but I think

comprehension/retention will be an issue.

My first thought is that you need to request more evaluating, because this is

not just Asperger. Something else is going on with the hyperactivity,

comprehension/retention problems. Kids with Asperger often have multiple

diagnosis. My son also has developmental coordination disorder, and he has

executive dysfunction (which is not necessarily part of Asperger). He is also

" emotionally fragile " .

One hump you are going to have to get over is that this small school is going to

have to spend some extra money just for your one child. For starters, the

teachers are going to have to have some training so they can understand how to

work with an autistic child better.

Your daughter's problems are too different from my own AS son's for me to be of

much help with exact school accommodations/interventions, so I will leave that

to others. I can assure you that she needs an IEP though. Is somebody actually

suggesting a 504?

Ruth

[Guest guest]

We live in California and belong to San Bernardino school district my son hasn't been diagnose with anything but we all think he is a little Asperger's. He has and IEP- when he started pre-school he was in a special school he needed speech and was latter ok to go to regular school with speech and RSP then kinder he had the worst teacher ever but because he is so smart I had him tested for the advance learners program and he passed. teacher had 40 years teaching- great teacher helped me get an Aid just for him for kinder, first, and second grade. we are going to try 3rd grade with out the aid- the aid was there to help him keep focus and to take him out of a bad situation before it got worst cause he would get really emotional so they would take a brake and go walk for fresh air or a drink of water-we also did personal stories-like In school i'm a good

boy I pay attention and follow directions stuff like that- we also had a special cushion to help him sit and he sits close to teacher so she can help him stay focus- I know all the kids in classroom and i know who he shouldn't sit next to. These are the same kids from advance kinder and back then when he first came in to the class the teacher had a meeting with them asking for them to be patient with him and to help him out. Right now he started chewing his clothes again so we are trying to have him chew gum in class or a squishy toy to keep him occupied. these are the things that work for us and it was a lot of hard work and I do spend a lot of time in school- some kids think I'm a teacher cause they are so used to seeing me there. I'm still working on getting him tested he hasn't been diagnose with anything - we tested him for autism and he missed it by one point- I live my boy and I'll do my best to help him out I don't worry as much as I used to

cause even if he is behind compare to the rest of the kids he is still growing he is not stuck in one place he improves everyday- I hope this helps.thanks for readingCATFrom: andie <andie6294@...>Subject: ( ) Need advice on what to request for IEP or 504 @...Date: Wednesday, April 15, 2009, 9:04 AM

My almost-6-year- old daughter was recently diagnosed with Asperger's. Our school here on base is about 40 minutes away from town and has less than 80 students, so needless to say, the resources are not readily available. The district has been trying to shut down this school, but the families on base have put up a good fight every year to keep it open.

Her first month of school was pure hell for her, and the teacher told me on the first day that she felt I needed to pull her out and wait a year because she was too 'immature' for school. Knowing how very smart this child is, I refused and went on a quest to find out WHY she was crawling under desks, chewing on everything, making loud noises at inappropriate times, spinning in circles, head shaking, and invading others' personal space. She has also had a lifelong problem following directions and can't seem to do things in a step-by-step order. She also doesn't grasp concepts well at all. Math is a real challenge for her. She is on the road to being quite a good reader, but I think comprehension/ retention will be an issue.

With OT (private) to help with her sensory issues (sensory seeker, auditory sensitivity, and I believe she has a visual processing problem as well) we have managed to curb some of the behaviors. Now my major concern is for the learning issues. She is highly, HIGHLY distracted by sounds, sights, and physical sensations and needs a lot of extra help with organization, time management, and staying on task. She has a lot of anxiety about handwriting and feels like a complete failure when it comes to math. She seems to do fine with someone walking her through it, but what teacher has the time to do that?

After that LONG story, my question is: When requesting an IEP or 504 (which would be better?) what specifically should I ask for? I have a feeling that I will have to come to the table with my demands since they probably won't be very willing to help. Her teacher this year has come around and allows for some adjustments (will re-test her one on one if she does poorly, allows her to have fidgets and chewy things, and I think she occasionally gives her physical jobs for sensory input). I'm not sure that her subsequent teachers will be as forgiving if there isn't something demanding these exceptions. There is no resource room or any extra teachers/aids to provide for a special needs student, and I do not want her being swept under the rug and allowed to fall behind because of this!

We will only be here another 2 years (can't wait!!!) and I want something in place before we move back to a larger school where she could likely get lost in the shuffle.

I am very interested to know what you all have in your student's IEPs/504; especially K-3rd grade, so I will be armed with requests.

Thank you all so much. I am so grateful for these boards, and for all of you who share your experiences. Living in a place like this, there is no one else around going through what I am going through - and my husband doesn't believe her problems are severe enough to take drastic actions. I am trying to do a preemptive strike to ensure she will have the coping skills and help to avoid severe problems. I am 100% sure she will suffer immensely if I don't push NOW.

Look out School District #1 - here comes the toughest advocate mommy you'll probably ever have to deal with!!!

Andie

[Guest guest]

Hi Andie,

My suggestion on how to proceed is this:

Go to your state Department of Instruction website (Google {state} DPI) see if

you can find a section on special ed. Our state has a Parent page that has

information. Look for something like a guide to special ed or referrals.

This is a copy of a page from my state guide (WI) as an example:

Referral

Anyone can ask the school to decide if a child needs special

education. You, a teacher, a nurse or a doctor can ask. This is called a

referral. A referral must be written. You can send a referral letter

to the principal or special education director.

A referral letter should:

• Tell the date.

• Say " This is a referral for special education. "

• Tell the child's first and last name, date of birth, and school.

• Tell why you think the child might need special education.

Your school has up to 15 business days from when they get a referral to decide

if

more tests are needed. Your school will ask for your permission if more tests

are

needed. Your school has up to 60 days from when they get your permission to

test your child and decide if your child qualifies. They have up to 30 days

after

your child qualifies to:

• Write an IEP.

• Decide where your child will go to school and tell you in writing.

The school will send you paperwork. Start a file.

You need to understand the papers so you can help the others on the IEP team. If

you don't understand something, call the school. They will explain it. They also

will tell you where you can get more help understanding it.

Assuming that your state laws are similar and that your school is a public

school you can get the process started by sending a written request to the

school. This is a good time to get started on this because you should be able

to get a plan in place before school starts next year. It can be a slow process

(ask Ruth ) so don't delay.

Hope this helps.

Vickie

>

> My almost-6-year-old daughter was recently diagnosed with Asperger's. Our

school here on base is about 40 minutes away from town and has less than 80

students, so needless to say, the resources are not readily available. The

district has been trying to shut down this school, but the families on base have

put up a good fight every year to keep it open.

>

> Her first month of school was pure hell for her, and the teacher told me on

the first day that she felt I needed to pull her out and wait a year because she

was too 'immature' for school. Knowing how very smart this child is, I refused

and went on a quest to find out WHY she was crawling under desks, chewing on

everything, making loud noises at inappropriate times, spinning in circles, head

shaking, and invading others' personal space. She has also had a lifelong

problem following directions and can't seem to do things in a step-by-step

order. She also doesn't grasp concepts well at all. Math is a real challenge

for her. She is on the road to being quite a good reader, but I think

comprehension/retention will be an issue.

>

> With OT (private) to help with her sensory issues (sensory seeker, auditory

sensitivity, and I believe she has a visual processing problem as well) we have

managed to curb some of the behaviors. Now my major concern is for the learning

issues. She is highly, HIGHLY distracted by sounds, sights, and physical

sensations and needs a lot of extra help with organization, time management, and

staying on task. She has a lot of anxiety about handwriting and feels like a

complete failure when it comes to math. She seems to do fine with someone

walking her through it, but what teacher has the time to do that?

>

> After that LONG story, my question is: When requesting an IEP or 504 (which

would be better?) what specifically should I ask for? I have a feeling that I

will have to come to the table with my demands since they probably won't be very

willing to help. Her teacher this year has come around and allows for some

adjustments (will re-test her one on one if she does poorly, allows her to have

fidgets and chewy things, and I think she occasionally gives her physical jobs

for sensory input). I'm not sure that her subsequent teachers will be as

forgiving if there isn't something demanding these exceptions. There is no

resource room or any extra teachers/aids to provide for a special needs student,

and I do not want her being swept under the rug and allowed to fall behind

because of this!

>

> We will only be here another 2 years (can't wait!!!) and I want something in

place before we move back to a larger school where she could likely get lost in

the shuffle.

>

> I am very interested to know what you all have in your student's IEPs/504;

especially K-3rd grade, so I will be armed with requests.

>

> Thank you all so much. I am so grateful for these boards, and for all of you

who share your experiences. Living in a place like this, there is no one else

around going through what I am going through - and my husband doesn't believe

her problems are severe enough to take drastic actions. I am trying to do a

preemptive strike to ensure she will have the coping skills and help to avoid

severe problems. I am 100% sure she will suffer immensely if I don't push NOW.

>

> Look out School District #1 - here comes the toughest advocate mommy you'll

probably ever have to deal with!!!

>

> Andie

>

[Guest guest]

Hi Ruth. Thanks for the reply. What kind of practitioner do you suggest I take

her to for a more comprehensive evaluation? Do you have any idea what types of

tests/screenings, etc they may need to do? I have taken her to a psychiatrist,

who felt she didn't have a psychiatric problem and strongly encouraged me to

take her to a neurologist to rule out neurological pathology vs. Asperger's or

ADHD. The neurologist pretty much just listened to what I've gone through with

her and checked her out briefly and gave the clinical diagnosis of Asperger's

based on that. She's also been going to an occupational therapist who diagnosed

her with sensory processing disorder. I knew that was a part of something

bigger, so I was determined to find out WHY she has the SPD.

Just looking for more info to arm myself with when I go to our primary care dr

asking for MORE referrals!

Thanks again,

Andie

> >

> > Her first month of school was pure hell for her, and the teacher told me on

the first day that she felt I needed to pull her out and wait a year because she

was too 'immature' for school. Knowing how very smart this child is, I refused

and went on a quest to find out WHY she was crawling under desks, chewing on

everything, making loud noises at inappropriate times, spinning in circles, head

shaking, and invading others' personal space. She has also had a lifelong

problem following directions and can't seem to do things in a step-by-step

order. She also doesn't grasp concepts well at all. Math is a real challenge

for her. She is on the road to being quite a good reader, but I think

comprehension/retention will be an issue.

>

> My first thought is that you need to request more evaluating, because this is

not just Asperger. Something else is going on with the hyperactivity,

comprehension/retention problems. Kids with Asperger often have multiple

diagnosis. My son also has developmental coordination disorder, and he has

executive dysfunction (which is not necessarily part of Asperger). He is also

" emotionally fragile " .

>

> One hump you are going to have to get over is that this small school is going

to have to spend some extra money just for your one child. For starters, the

teachers are going to have to have some training so they can understand how to

work with an autistic child better.

>

> Your daughter's problems are too different from my own AS son's for me to be

of much help with exact school accommodations/interventions, so I will leave

that to others. I can assure you that she needs an IEP though. Is somebody

actually suggesting a 504?

>

> Ruth

>

[Guest guest]

If you see a developmental pediatrician chances are the DX would be PDD NOS

pervasive developmental disorder. Does she have any health issues? Short statue?

Some kids with growth issues have pervasive

developmental disoders and NLD. If you see a neuropsycologist (she may be too

young) they could detect a Non Verbal Learning Disoder.

Usually schools want an MD DX.

Math is a challenge for NLD kids, so is following step wise instructions, they

often have obessive compulsive traits,

have problem seeing the big picture. Difficulty with handwriting. Difficulty

with motor skills. Are excellent verbal learners.

They have executive function disoders, poor processing speed,

poor attention, often have high anxiety and sometimes panic. NLD alone is not a

diagnosis it is not too helpful for getting services.

You want an IEP under PDD-NOS as Other Health Impaired.

You will have to get that probably from a neurologist.

As mentioned you request a child study evaluationa and specifiy the

neurological report will be part of the IEP evaulation process.

You may be able to get them to pay for that. I didn't want to

negotiate with them for that.

There are so many accomadations for NLD. See NLDonline.

There are great books on NLD at school and NLD at home

by Pam Tanguary.

Basically she may need a small setting, less transitions,

resource room for help in math and written expression.

Extra time, reduced or no homework. She will need a

social skill program like the AS ones. She may need a

female buddy to sit next to her. Anxiety control is often

a problem. There are so many needed acoomodations for these

kids. They suffer greatly. My daughter has an AS with NLD.

Recess is lunch is usally a problem.

There are so many accomadations to include it evolves over the

years as there is usually resistance from the schools.

There are good people out there that can help.

What state do you live in?

Good luck,

Pam

[Guest guest]

Oops how did I miss you have a DX. Great!! Fabulous. It sounds like she has AS

with NLD. This is what my daughter has too. You definately qualify for an IEP

under Autism. Great fabulous. This is good news.

See info on NLD as I mentioned and I would guess things will

click for you. Kids with AS alone are usually good in math.

Kids with AS and NLD usually have problems with math facts.

Kids with AS alone are visual learners. Kids with AS and NLD are

verbal learners. Generally there are always exceptions.

Good luck I think things will work out for you getting the

services you need. DX is half the battle.

Pam

[Guest guest]

Great info, Pam - thanks! I'm sure I'll have a hundred questions for you over

the next few weeks - or more. I knew we needed a medical dx which is why I

jumped at this neuro appt since we can't seem to get into a dev ped. We live at

Yuma Proving Ground, AZ, which is in the desert a stone's throw from Mexico to

the south and California to the west. It's the desert, needless to say, and

we're even about 40 min from the 'town' if you can call it that. The resources

are nonexistent as far as I know, so I definitely need to be well-informed when

it's time for me to set my demands. My husband's job is awesome (for him!) and

it keeps him from having to deploy to Iraq for another 2 years. I know Colorado

(where we will be returning) has wonderful opportunities for therapies and

special ed, but going there now would mean my husband would be in Iraq for 7

months out of every year.

I'm really hoping we can get liese the help she needs while we're here. I

don't want to do it, but if I have to put her in a different school in town to

ensure she is understood and taught the way she needs to be taught, I'll do it.

This may mean 2 hours on a bus 5 days a week though, and I'm not sure that would

be at all good for her either.

One thing that is really on my mind... does this ever get better? It sounds

like a slightly more severe case of Asperger's without the NLD would be easier

for the child to live with. She does like to be with other kids and she does

have a couple very patient and accepting friends, but it is still obvious that

if there's ever a 3rd child around, liese is the odd man out. THAT causes a

lot of anxiety for her and when anxious, she just asks like a lunatic. She

doesn't cry or retreat and sulk, she rolls around on the floor meowing or jumps

up in people's faces and makes obnoxious noises, or tries to take away whatever

they are playing with. I'm hoping some of these things will improve with age as

she learns how inappropriately she's acting and how undesirable those behaviors

are to be around.

At first my biggest concern was the social aspect since I thought she was 'smart

enough' to do well in school. However, as the year has progressed and the work

has risen in difficulty, I see that problem solving and conceptual thinking are

going to be a real fight. I can tell when they're working on something that is

beyond her grasp. She will say things about being a stupid girl and that

everyone else in the class works hard except her. She is getting very down on

herself and it breaks my heart, but I don't know how to help her. I don't want

her to hate school and feel stupid. The teacher has even said that liese

has an amazing vocabulary and a more impressive knowledge base than any of the

other kids in class. She's obviously so, so smart, but these certain things

that are challenges seem to block out the positives in her eyes.

How old is your daughter? When was she diagnosed, and what has the journey been

like? Have you seen improvements over the years? What types of therapy is she

in, and is she on any medications?

When things are going well (ie: she isn't being made to do something she doesn't

want to do, she's well-rested, not hungry, hot, cold, etc.) I wonder if there

really is something wrong with her... then we have to do homework, or she starts

to hyperfocus on something (usually having to do with bugs-that's one obsession)

or becomes uncomfortable in any way, or friends are over and one of her switches

gets flipped, or her sister gets within arm's reach - the list goes on- I see

just how different she really is. It is then that I get scared for her future

and question her ability to ever do things on her own. I know she's young, but

my 3 year old has more drive and independence than she has!

>

> Oops how did I miss you have a DX. Great!! Fabulous. It sounds like she has AS

with NLD. This is what my daughter has too. You definately qualify for an IEP

under Autism. Great fabulous. This is good news.

>

> See info on NLD as I mentioned and I would guess things will

> click for you. Kids with AS alone are usually good in math.

> Kids with AS and NLD usually have problems with math facts.

> Kids with AS alone are visual learners. Kids with AS and NLD are

> verbal learners. Generally there are always exceptions.

>

> Good luck I think things will work out for you getting the

> services you need. DX is half the battle.

>

> Pam

>

[Guest guest]

>

> Hi Ruth. Thanks for the reply. What kind of practitioner do you suggest I

take her to for a more comprehensive evaluation?

You can get a detailed diagnosis from either a neuropsychological evaluation or

an autism evaluation. The neuropsychololgical eval will focus more on executive

dysfunction and other neurocognitive issues, and the autism eval will focus more

on communication dysfunction. To a point, a speech eval with someone who is

familiar with Asperger and pragmatic communication issues can substitute for an

autism eval. At some point, for informational purposes, you will probably want

to get both a neuropsych eval and an autism eval., but you only need one to

simply get a dependable dx. I suppose it depends on your child's symptoms. My

son has clinical level executive dysfunction and weak working memory, along with

subtle, to the uninitiated, but serious, pragmatic language problems, so we

needed all of it. And we have speech evals too because the therapy centers we

went to insisted on doing their own--they did it for free since we were signing

up for sessions for sure.

Ruth

[Guest guest]

Hi! I am glad we connected because our daughter's issues are

very similar. I can't write much now (we are at the library) but I will later

tonight about the school issues and therapies.

I will say that you can have an amazing and very close

relationship with your daughter. She can be the love of your

life and you will be hers for sure.

You will understand better than even she does what she needs

and that will make her very dependent on you and deeply greatful.

And then the journey is to find people that understand her like

you do.

The main issue about school is that she wants to go. That she

likes it and isn't getting anxious.

I'll write back later, and answer your questions.

Pam

>

> Great info, Pam - thanks! I'm sure I'll have a hundred questions for you over

the next few weeks - or more. I knew we needed a medical dx which is why I

jumped at this neuro appt since we can't seem to get into a dev ped. We live at

Yuma Proving Ground, AZ, which is in the desert a stone's throw from Mexico to

the south and California to the west. It's the desert, needless to say, and

we're even about 40 min from the 'town' if you can call it that. The resources

are nonexistent as far as I know, so I definitely need to be well-informed when

it's time for me to set my demands. My husband's job is awesome (for him!) and

it keeps him from having to deploy to Iraq for another 2 years. I know Colorado

(where we will be returning) has wonderful opportunities for therapies and

special ed, but going there now would mean my husband would be in Iraq for 7

months out of every year.

>

> I'm really hoping we can get liese the help she needs while we're here. I

don't want to do it, but if I have to put her in a different school in town to

ensure she is understood and taught the way she needs to be taught, I'll do it.

This may mean 2 hours on a bus 5 days a week though, and I'm not sure that would

be at all good for her either.

>

> One thing that is really on my mind... does this ever get better? It sounds

like a slightly more severe case of Asperger's without the NLD would be easier

for the child to live with. She does like to be with other kids and she does

have a couple very patient and accepting friends, but it is still obvious that

if there's ever a 3rd child around, liese is the odd man out. THAT causes a

lot of anxiety for her and when anxious, she just asks like a lunatic. She

doesn't cry or retreat and sulk, she rolls around on the floor meowing or jumps

up in people's faces and makes obnoxious noises, or tries to take away whatever

they are playing with. I'm hoping some of these things will improve with age as

she learns how inappropriately she's acting and how undesirable those behaviors

are to be around.

>

> At first my biggest concern was the social aspect since I thought she was

'smart enough' to do well in school. However, as the year has progressed and

the work has risen in difficulty, I see that problem solving and conceptual

thinking are going to be a real fight. I can tell when they're working on

something that is beyond her grasp. She will say things about being a stupid

girl and that everyone else in the class works hard except her. She is getting

very down on herself and it breaks my heart, but I don't know how to help her.

I don't want her to hate school and feel stupid. The teacher has even said that

liese has an amazing vocabulary and a more impressive knowledge base than

any of the other kids in class. She's obviously so, so smart, but these certain

things that are challenges seem to block out the positives in her eyes.

>

> How old is your daughter? When was she diagnosed, and what has the journey

been like? Have you seen improvements over the years? What types of therapy is

she in, and is she on any medications?

>

> When things are going well (ie: she isn't being made to do something she

doesn't want to do, she's well-rested, not hungry, hot, cold, etc.) I wonder if

there really is something wrong with her... then we have to do homework, or she

starts to hyperfocus on something (usually having to do with bugs-that's one

obsession) or becomes uncomfortable in any way, or friends are over and one of

her switches gets flipped, or her sister gets within arm's reach - the list goes

on- I see just how different she really is. It is then that I get scared for her

future and question her ability to ever do things on her own. I know she's

young, but my 3 year old has more drive and independence than she has!

>

>

>

> >

> > Oops how did I miss you have a DX. Great!! Fabulous. It sounds like she has

AS with NLD. This is what my daughter has too. You definately qualify for an IEP

under Autism. Great fabulous. This is good news.

> >

> > See info on NLD as I mentioned and I would guess things will

> > click for you. Kids with AS alone are usually good in math.

> > Kids with AS and NLD usually have problems with math facts.

> > Kids with AS alone are visual learners. Kids with AS and NLD are

> > verbal learners. Generally there are always exceptions.

> >

> > Good luck I think things will work out for you getting the

> > services you need. DX is half the battle.

> >

> > Pam

> >

>

[Guest guest]

In terms of things getting better...they can. My son will be 13 in July and his progress over the past few years has been amazing. I never expected us to be where we are today. He used to be like a walking nerve. It didn't take much for him to meltdown and I felt so bad for him b/c you could tell he wanted to please, he wanted to do the right thing, after he got himself together. I used to have to help him get himself together but over the years, he's learned to do this himself. I NEVER thought that would be a possibility when he was 5-8 years old. So things can get better.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: susanonderko <susanonderko@...> Sent: Thursday, April 16, 2009 3:15:12 PMSubject: ( ) Re: Need advice on what to request for IEP or 504

Hi! I am glad we connected because our daughter's issues arevery similar. I can't write much now (we are at the library) but I will later tonight about the school issues and therapies. I will say that you can have an amazing and very closerelationship with your daughter. She can be the love of your life and you will be hers for sure. You will understand better than even she does what she needsand that will make her very dependent on you and deeply greatful.And then the journey is to find people that understand her like you do. The main issue about school is that she wants to go. That she likes it and isn't getting anxious. I'll write back later, and answer your questions.Pam >> Great info, Pam - thanks! I'm sure I'll have a hundred questions for you over the next few weeks - or more. I knew we needed a medical dx which is why I jumped at this neuro appt since we can't seem to get into a dev ped. We live at Yuma Proving Ground, AZ, which is in the desert a stone's throw from Mexico to the south and California to the west. It's the desert, needless to say, and we're even about 40 min from the 'town' if you can call it that. The resources are nonexistent as far as I know, so I definitely need to be well-informed when it's time for me to set my demands. My husband's job is awesome (for him!) and it keeps him from having to deploy to Iraq for another 2 years. I know Colorado (where we will be returning) has wonderful opportunities for therapies and special ed, but going there now would mean my husband would be in Iraq for 7 months out of every year. > > I'm really hoping we can get

liese the help she needs while we're here. I don't want to do it, but if I have to put her in a different school in town to ensure she is understood and taught the way she needs to be taught, I'll do it. This may mean 2 hours on a bus 5 days a week though, and I'm not sure that would be at all good for her either.> > One thing that is really on my mind... does this ever get better? It sounds like a slightly more severe case of Asperger's without the NLD would be easier for the child to live with. She does like to be with other kids and she does have a couple very patient and accepting friends, but it is still obvious that if there's ever a 3rd child around, liese is the odd man out. THAT causes a lot of anxiety for her and when anxious, she just asks like a lunatic. She doesn't cry or retreat and sulk, she rolls around on the floor meowing or jumps up in people's faces and makes obnoxious noises, or tries to take away whatever they

are playing with. I'm hoping some of these things will improve with age as she learns how inappropriately she's acting and how undesirable those behaviors are to be around. > > At first my biggest concern was the social aspect since I thought she was 'smart enough' to do well in school. However, as the year has progressed and the work has risen in difficulty, I see that problem solving and conceptual thinking are going to be a real fight. I can tell when they're working on something that is beyond her grasp. She will say things about being a stupid girl and that everyone else in the class works hard except her. She is getting very down on herself and it breaks my heart, but I don't know how to help her. I don't want her to hate school and feel stupid. The teacher has even said that liese has an amazing vocabulary and a more impressive knowledge base than any of the other kids in class. She's obviously so, so smart, but these certain

things that are challenges seem to block out the positives in her eyes. > > How old is your daughter? When was she diagnosed, and what has the journey been like? Have you seen improvements over the years? What types of therapy is she in, and is she on any medications?> > When things are going well (ie: she isn't being made to do something she doesn't want to do, she's well-rested, not hungry, hot, cold, etc.) I wonder if there really is something wrong with her... then we have to do homework, or she starts to hyperfocus on something (usually having to do with bugs-that's one obsession) or becomes uncomfortable in any way, or friends are over and one of her switches gets flipped, or her sister gets within arm's reach - the list goes on- I see just how different she really is. It is then that I get scared for her future and question her ability to ever do things on her own. I know she's young, but my 3 year old has more drive

and independence than she has! > > > > >> > Oops how did I miss you have a DX. Great!! Fabulous. It sounds like she has AS with NLD. This is what my daughter has too. You definately qualify for an IEP under Autism. Great fabulous. This is good news.> > > > See info on NLD as I mentioned and I would guess things will > > click for you. Kids with AS alone are usually good in math.> > Kids with AS and NLD usually have problems with math facts.> > Kids with AS alone are visual learners. Kids with AS and NLD are> > verbal learners. Generally there are always exceptions. > > > > Good luck I think things will work out for you getting the > > services you need. DX is half the battle.> > > > Pam> >>

[Guest guest]

Andie, I don't know that your daughter has AS/NLD. But you said Math was

difficult. NLD kids have difficulty with math. Another sign of NLD is a verbal

learner. Another is motor clumsiness. Another is a great debator. Your daughter

may not have NLD. I read about half of AS kids do not have NLD.

This made me think of AS/NLD too. Often folks with NLD complain about fatigue.

My daughter can not cope with car rides and tires easily.

> This may mean 2 hours on a bus 5 days a week though, and I'm not sure that

would be at all good for her either.

>

Often people with AS and AS/something else do very well. On another group called

NLD on line, some of those adults are lawyers,

careers, married etc

> One thing that is really on my mind... does this ever get better? It sounds

like a slightly more severe case of Asperger's without the NLD would be easier

for the child to live with.

Yes, I notice that too. I think 1:1 the pace of interaction will slow down to

match our daughters. But if it is 3 the pace has to match the group.

>She does like to be with other kids and she does have a couple very patient and

accepting friends, but it is still obvious that if there's ever a 3rd child

around, liese is the odd man out.

My daughter is 11 1:1 is still best for her. My daughter is more aware that 1:1

is better and seeks that. 4th and 5th grade

have gotten harder because the girls want to play in groups at

recess. Many shy people prefer 1:1 too, the trick is to teach them

to retreat when it is 3 rather than get bossy or intrusive.

This is still something my daughter needs to learn.

> THAT causes a lot of anxiety for her and when anxious, she just asks like a

lunatic. She doesn't cry or retreat and sulk, she rolls around on the floor

meowing or jumps up in people's faces and makes obnoxious noises, or tries to

take away whatever they are playing with. I'm hoping some of these things will

improve with age as she learns how inappropriately she's acting and how

undesirable those behaviors are to be around.

>

Yes, this low self esteem is not good. My daughter has this too.

Ruminating on their weaknesses and not seeing there strengths.

We have my daughter in classes with in class support which is a second special

ed teacher, she is in a small math class, lots of

help organizing herself. It is not enough to stop this thinking.

> At first my biggest concern was the social aspect since I thought she was

'smart enough' to do well in school. However, as the year has progressed and

the work has risen in difficulty, I see that problem solving and conceptual

thinking are going to be a real fight. I can tell when they're working on

something that is beyond her grasp. She will say things about being a stupid

girl and that everyone else in the class works hard except her. She is getting

very down on herself and it breaks my heart, but I don't know how to help her.

I don't want her to hate school and feel stupid. The teacher has even said that

liese has an amazing vocabulary and a more impressive knowledge base than

any of the other kids in class. She's obviously so, so smart, but these certain

things that are challenges seem to block out the positives in her eyes.

>

My daughter is 11. She was DX with anxiety first in preschool, then OCD in first

grade, then sensory integration disorder, then AS/NLD in third grade. School has

been the biggest difficulty because they are pushing her to fully fit in and

keep up. She can't sustain it and then she has an emotional breakdown and gets

sick or refuses to go to school. Luckily I have had access to therapists. And I

have tried

alot of different parent counseling techniques, floortime, social stories, ocd

stuff, cognitive therapy, sensory skills. I seem to always go back to reducing

her stimulation as a way to regulate her better and also rehearsing the plan for

the day as a way to help her cope. The biggest improvement I have seen is that

she " wants " me to join in on her interests. She asks me to come and sit with her

and look at her animals and she is seeking out my opinion. I see a young girl

that would be a very good friend to another girl.

My daughter's self esteem is too low to really do much good in cognitive

therapy. She meets a few times a month with a very very

supportive and caring counselor. The counselor tries to build her

up, they play games. And this counselor advocates at the school too. If your

daughter has the motor clumsiness getting her on a bike eventually (my daughter

didn't learn until 10) helps with bilateral coordination. My daughter goes to

dance and swimming but she is

not happy in lessons as she compares herself to others. No medication yet. But I

may be too slow about this. I think I am.

> How old is your daughter? When was she diagnosed, and what has the journey

been like? Have you seen improvements over the years? What types of therapy is

she in, and is she on any medications?

>

Yes, I see this too and think this too. When she is focused on an interest I

think how typical she seems and I forget all that we have been though. I

actually think wow I quess this is over now. I do this over and over. The

problem with this is I keep reverting back to not planning transitions and the

day and then we have a bad scene again.

> When things are going well (ie: she isn't being made to do something she

doesn't want to do, she's well-rested, not hungry, hot, cold, etc.) I wonder if

there really is something wrong with her... then we have to do homework, or she

starts to hyperfocus on something (usually having to do with bugs-that's one

obsession) or becomes uncomfortable in any way, or friends are over and one of

her switches gets flipped, or her sister gets within arm's reach - the list goes

on- I see just how different she really is. It is then that I get scared for her

future and question her ability to ever do things on her own. I know she's

young, but my 3 year old has more drive and independence than she has!

>

For your daughter's school setting she needs very supportive teachers. Does

criticism upset her? It causes my daughter great anxiety. If anxiety about

school starts to increase I would

not ignore it. Some people try medication at that point. Others home school.

Some manage to get their dstrict to pay for another

school. Ususally kids with AS or AS/NLD need a small setting with few teachers,

very supportive, supportive social setting faciliated. I live in NJ and we don't

have what she needs close by. We would have to drive 50 miles to a school that

could help her. Too far.

We were talking in this group about social skill curriculums and

I had said I like Michele Winner. I think for girls she is espcially

helpful. In her book she writes about how to teach how others think.

And girls do a lot of thinking about others so it is a good skill for our girls

to develop. I would recommend you order her book on social skill curriculum and

she has a DVD you can order and she

shows you how she is teaching social cognition. There are alot of others out

there too.

If our daughters can only manage 1:1 that is OK. This is the best

most introverts can do.

School is the challenge especially once they get to middle school.

There are many accomodations that can make her feel more comfortable in school

now. A kind teacher, limit movements and tasks, have a

fixed seating next to a quiet sensitive girl. Reduce work.

No peer picking in PE or other times.

You may have to network thru a Asperger group

when you move to really find out what is what. What you really

need for her is a supportive setting.

Look at the web page for New Hope Academy in Niles IL as a model

of ideally what an AS/NLD kid needs. This school is in the Chicago area and only

has 10 middle school age kids. Only 10 in the Chicago

land suburbs. I think this is because the tuition is $38,000 and

most AS kids can do well in their district.

You can email me at my name @verizon.net if you want help with

proposing an IEP.

Best of luck,

Pam