getting services for my bright aspie

[Guest guest]

My DS is 6 yrs old in first grade in public school in Alabama. He was recently

evaluated for spec ed, and did not qualify. The school said that they do not

see the behaviors that I am talking about. The school said he is not having

academic difficulties (which I agree with - three 100's and a 99 on his report

card), and said that he might qualify for gifted in a year or so (funny- gifted

services start at 1st grade in AL!).

We have a private diagnosis, which I presented. He is currently on 5mg ritalin 2

times a day, and just started 12.5 mg zoloft recently for the OCD type

behaviors. The school is indicating that since we have him on meds, and they

aren't seeing the behaviors during the school day, they don't have to provide

anything (OT, social skills training, NOTHING). They didn't offer a 504 to deal

w/ anything either.

Teacher suggested (off the record of course) that maybe I should remove the

medication support, and see what happens. Has anyone else done this? I am

providing it for the school's benefit as much as my son's. We don't get much

benefit- its worn off by the time I pick him up from after school care. We are

left to deal w/ the " hyperactive " kid.

Are there any other parents out there that have had to deal w/ this? Any

parents from AL specifically?

[Guest guest]

I'm not from Alabama, but I am surprised that the school says they see no behaviors during the school day. They're saying he has friends and plays appropriately with them? He doesn't have any trouble in class waiting his turn, speaking appropriately, staying on task himself without extra help? It's kind of hard to believe, even if he is on medication. I'm sure they have to see some signs that he has AS. Even if he is not displaying negative behaviors, you can request that he be included in social skills groups or anything like that which the school provides, based on his diagnosis. I would at least start with that.

I would not take him off the meds, since they are working so well during the school day! You can find a way to work with the school to get some extra help for him without resorting to that.

~~~~~~~~~~~~~~~~~~~~~~

Suzanne

suzmarkwood@...

From: Sandi <dcarters@...>Subject: ( ) getting services for my "bright" aspie Date: Friday, October 23, 2009, 6:51 AM

My DS is 6 yrs old in first grade in public school in Alabama. He was recently evaluated for spec ed, and did not qualify. The school said that they do not see the behaviors that I am talking about. The school said he is not having academic difficulties (which I agree with - three 100's and a 99 on his report card), and said that he might qualify for gifted in a year or so (funny- gifted services start at 1st grade in AL!). We have a private diagnosis, which I presented. He is currently on 5mg ritalin 2 times a day, and just started 12.5 mg zoloft recently for the OCD type behaviors. The school is indicating that since we have him on meds, and they aren't seeing the behaviors during the school day, they don't have to provide anything (OT, social skills training, NOTHING). They didn't offer a 504 to deal w/ anything either. Teacher suggested (off the record of course) that maybe I should remove the medication support, and see what

happens. Has anyone else done this? I am providing it for the school's benefit as much as my son's. We don't get much benefit- its worn off by the time I pick him up from after school care. We are left to deal w/ the "hyperactive" kid.Are there any other parents out there that have had to deal w/ this? Any parents from AL specifically?

[Guest guest]

How frustrating!!!! I have been in your shoes. This stinks

how tough the schools can be. It is like this all over.

You really need the IEP to start the process for services

that may extend into adulthood.

Here is what I recomend:

Step 1) Get a medical diagnosis if you don not have one.

step 2) Get a neuropsychological testing and report done. If you want the list

of tests they should run, let me know. But this is so important for setting the

stage for all further services and for assessing the level of cognitive

impairment. My daughter was 9 when this testing was done.

If you can afford to get a private neuropyschological report

done, I would advise you to do that. Make sure the neuropyschologist

has a Phd. Make sure the neuopyschyiatrist is very familar with Asperger's (I

talked to a few before I decided on one). Pick one that

writes a report and gives school recommendations.

If you can't afford it and you have a Asperger Diagnosis from a doctor write a

letter to the school special services

requesting a neuropyschological evaluation based on the fact your

child has a neuological disorder that affects learning and

socializing.

step 3) request in writing that you want your child evaluated by the

child study team for an IEP based on the DX of Asperger

and that you request that the neuropsych report be accepted for

the pyschological portion. Make sure you ask for an OT and speech evaluation.

step 4) If the school still stubbornly denies there is an issue,

and you have the diagnosis and you have the neuropsycsh report

that says your child needs services the next step is to involve

a lawyer that will talk to your school districts lawyer and remind them of the

laws gently. Hopefully that will be enough to get the classification process

started.

step 5)Hopefully your child will get classified under IEP.

This is a long process of getting the services in place for your child.

Regarding Medication!!!!!!!

When you have the neuropysch tests done I would not use the

stimulant, but ask the nueropysch of course.

write me privately if you want to email about the medication.

Pam

>

>

> From: Sandi <dcarters@...>

> Subject: ( ) getting services for my " bright " aspie

>

> Date: Friday, October 23, 2009, 6:51 AM

>

>

>  

>

>

>

> My DS is 6 yrs old in first grade in public school in Alabama. He was recently

evaluated for spec ed, and did not qualify. The school said that they do not see

the behaviors that I am talking about. The school said he is not having academic

difficulties (which I agree with - three 100's and a 99 on his report card), and

said that he might qualify for gifted in a year or so (funny- gifted services

start at 1st grade in AL!).

>

> We have a private diagnosis, which I presented. He is currently on 5mg ritalin

2 times a day, and just started 12.5 mg zoloft recently for the OCD type

behaviors. The school is indicating that since we have him on meds, and they

aren't seeing the behaviors during the school day, they don't have to provide

anything (OT, social skills training, NOTHING). They didn't offer a 504 to deal

w/ anything either.

>

> Teacher suggested (off the record of course) that maybe I should remove the

medication support, and see what happens. Has anyone else done this? I am

providing it for the school's benefit as much as my son's. We don't get much

benefit- its worn off by the time I pick him up from after school care. We are

left to deal w/ the " hyperactive " kid.

>

> Are there any other parents out there that have had to deal w/ this? Any

parents from AL specifically?

>

[Guest guest]

That is exactly what they are saying...he has friends, he is a leader, he does

his work (most of the time), but the teacher does see a difference off meds (he

goes at lunch to get another dose).

The problem I think is that as long as he is on meds, he is not causing them any

problems (in their minds), so therefore he needs no help. He is a totally

different child off meds.

>

>

> From: Sandi <dcarters@...>

> Subject: ( ) getting services for my " bright " aspie

>

> Date: Friday, October 23, 2009, 6:51 AM

>

>

> �

>

>

>

> My DS is 6 yrs old in first grade in public school in Alabama. He was recently

evaluated for spec ed, and did not qualify. The school said that they do not see

the behaviors that I am talking about. The school said he is not having academic

difficulties (which I agree with - three 100's and a 99 on his report card), and

said that he might qualify for gifted in a year or so (funny- gifted services

start at 1st grade in AL!).

>

> We have a private diagnosis, which I presented. He is currently on 5mg ritalin

2 times a day, and just started 12.5 mg zoloft recently for the OCD type

behaviors. The school is indicating that since we have him on meds, and they

aren't seeing the behaviors during the school day, they don't have to provide

anything (OT, social skills training, NOTHING). They didn't offer a 504 to deal

w/ anything either.

>

> Teacher suggested (off the record of course) that maybe I should remove the

medication support, and see what happens. Has anyone else done this? I am

providing it for the school's benefit as much as my son's. We don't get much

benefit- its worn off by the time I pick him up from after school care. We are

left to deal w/ the " hyperactive " kid.

>

> Are there any other parents out there that have had to deal w/ this? Any

parents from AL specifically?

>

[Guest guest]

We have done everything listed below, except contact a lawyer! Two diagnoses

(phd and md provided), school has tested. I have contacted our state advocacy

group for help. I have an appt. All tests every time ON MEDICATION. First time

was with nueropsychologist, no one told us not to give it to him. He would have

preferred that we hadn't. School told us to medicate for testing, since that's

the way they have him at school. He also had speech and OT, and they said he

didn't qualify educationally.

> >

> >

> > From: Sandi <dcarters@>

> > Subject: ( ) getting services for my " bright " aspie

> >

> > Date: Friday, October 23, 2009, 6:51 AM

> >

> >

> > �

> >

> >

> >

> > My DS is 6 yrs old in first grade in public school in Alabama. He was

recently evaluated for spec ed, and did not qualify. The school said that they

do not see the behaviors that I am talking about. The school said he is not

having academic difficulties (which I agree with - three 100's and a 99 on his

report card), and said that he might qualify for gifted in a year or so (funny-

gifted services start at 1st grade in AL!).

> >

> > We have a private diagnosis, which I presented. He is currently on 5mg

ritalin 2 times a day, and just started 12.5 mg zoloft recently for the OCD type

behaviors. The school is indicating that since we have him on meds, and they

aren't seeing the behaviors during the school day, they don't have to provide

anything (OT, social skills training, NOTHING). They didn't offer a 504 to deal

w/ anything either.

> >

> > Teacher suggested (off the record of course) that maybe I should remove the

medication support, and see what happens. Has anyone else done this? I am

providing it for the school's benefit as much as my son's. We don't get much

benefit- its worn off by the time I pick him up from after school care. We are

left to deal w/ the " hyperactive " kid.

> >

> > Are there any other parents out there that have had to deal w/ this? Any

parents from AL specifically?

> >

>

[Guest guest]

OK That is great that you have all this in place. Don't get discouraged this is

typically the way it goes for parents of

Asperger kids. It is a real struggle to get services early.

Your child's speech must be pretty good. Your childs's motor skills must be

pretty good too. Or is it that the school is inept and glossed over your child's

issues?

You have a school district like mine. It is blind to the needs of

children. Kids with Asperger Syndrome need so many services

as they get older. So you have to pursue this without

burning yourself out financially and emotionally.

It took us to 4th grade to get our daughter classified and I knew

there were problems in preschool. We have a BAD BAD district.

I regret not moving into an apartment in another town. My husband and our lawyer

kept saying lets be patient and work it out.

We made the best of a bad situation but it is still a very bad

situation. Our school district still is blind to her very severe

issues. How can this be? Our daughter has Asperger and a genetic issue, She

panics in school. How can they say they do not see a problem??????? Yet they

send her to a private special needs school. My point is some school districts

seem like they just can't

understand this syndrome. Yet they have provided services

with reluctance.

Your child is so young and already on medication. He must be suffering a lot.

Asperger kids are very sensitive to the side effects of medication. I am not

sure if you wanted to increase the dose at some point that you will be able to.

Rispedal is not given to boys as they get older because it sometimes prevents

puberty and some

boys have breast issues and weight gain on rispedal. So his issues will become

more obvious as he is older.

You should talk to a lawyer or advocate.

I would at least right a letter to the school and document

that your son has these diagnosis and that he needs

special services and that you are trying to be reasonable. Request a 504 to get

started and document some services you want and see what they will agree too. If

they agree to a 504 and they have to

do this. Document that this is not sufficent but that you

are trying to be reasonable and work with the school.

Over and over you want to be the reasonable one that wants

to work together to met the needs of a child with a

disability. We started with a 504 in first grade thru fourth.

It took that long to advocate.

504 accomodations: you can ask for extra time on tests,

you can ask for reduced homework, you can ask for reduced

noise settings, extra set of books this sort of things.

You can request he be included in social skill groups,

lunch bunch type social skills. This is a process. A 504

is just a first step when the school is not reasonable.

Look into the state laws and if you qualify for a behaviorist

thru the state. If you have your son classifed by the

state of AL as having a disability you may get some very

small services but at least it is a classification. I didn't do this

since we got our daughter classified by the school and I am

not sure it is worth your time and effort.

Best of luck with all this. You are on the right track.

People just don't get Asperger Syndrome. They hear

and judge them by there great verbal skills.

The impairment does get more obvious unfortunately.

Pam

> > >

> > >

> > > From: Sandi <dcarters@>

> > > Subject: ( ) getting services for my " bright " aspie

> > >

> > > Date: Friday, October 23, 2009, 6:51 AM

> > >

> > >

> > > �

> > >

> > >

> > >

> > > My DS is 6 yrs old in first grade in public school in Alabama. He was

recently evaluated for spec ed, and did not qualify. The school said that they

do not see the behaviors that I am talking about. The school said he is not

having academic difficulties (which I agree with - three 100's and a 99 on his

report card), and said that he might qualify for gifted in a year or so (funny-

gifted services start at 1st grade in AL!).

> > >

> > > We have a private diagnosis, which I presented. He is currently on 5mg

ritalin 2 times a day, and just started 12.5 mg zoloft recently for the OCD type

behaviors. The school is indicating that since we have him on meds, and they

aren't seeing the behaviors during the school day, they don't have to provide

anything (OT, social skills training, NOTHING). They didn't offer a 504 to deal

w/ anything either.

> > >

> > > Teacher suggested (off the record of course) that maybe I should remove

the medication support, and see what happens. Has anyone else done this? I am

providing it for the school's benefit as much as my son's. We don't get much

benefit- its worn off by the time I pick him up from after school care. We are

left to deal w/ the " hyperactive " kid.

> > >

> > > Are there any other parents out there that have had to deal w/ this? Any

parents from AL specifically?

> > >

> >

>

[Guest guest]

Sounds like we are going through the exact same ordeal. I have a 6 year old 1st

grade daughter. She is on 5 mg Adderall. The teacher definitely notices a

difference when she is not given the meds (I've forgotten to give them to her a

couple times when we were in a rush), but also does not notice that there is

anything going on that is setting her back. My little Aspie, as forthcoming as

she is, has told me (when asked why she can get her school work done but we go

through hours of fits trying to get homework done) that the girl that sits next

to her in class gives her the answers. I was fumed that the teacher wasn't able

to pay close enough attention to catch a couple of 6 year olds cheating! And

it's not like liese is subtle about ANYTHING, so I can't imagine she knew

she was doing something bad... when she told me about it, she sounded proud of

herself that she had completed the work. I've also been informed by my daughter

that when she doesn't get work done and is supposed to sit out on recess, there

are a couple other girls who will write her words for her or do her math

problems. So I informed the teacher that liese's grades may not be the

product of HER understanding and ability to do the work.

Just like you said, it's a different child all together that we're dealing with

once they're home. Although liese is smart, and she can usually make up

sentences for spelling words very quickly and spell the words to me, getting all

that down on paper is a real challenge!! She takes FOREVER to do her work, and

will try to avoid any type of educational activity - be it homework, reading, or

even activity books.

She goes to a very, VERY small school on the military base where we live.

Everyone knows everyone on a personal level here (her teacher is even the wife

of a soldier stationed here that lives on base) and the school has absolutely no

services. We are the red-headed stepchild of the school district. They've been

wanting to shut this school down every year for the past I don't know how many,

but there's always an uprising because our kids would have to be bussed 40

minutes into town if we didn't have our little school. That being said, the

faculty (the 4 teachers and 1 secretary) isn't fond of drawing attention to the

school.

Enough of that.... I have recently taken her for neuropsych testing (3.5 hours

away!), but since they couldn't possibly shove any more testing down my poor

child's throat after a day and a half of nothing but testing, the academic tests

didn't get done. We are now awaiting insurance approval of more hours to

complete the academic tests. The school has refused 3 requests to do an

evaluation themselves because she's not falling behind - but how far behind can

she be in 1st grade??? So I've done it through our insurance. Her diagnosis of

Asperger's came from a neurologist we saw (also 3.5 hours away) in April - and

we just got the initial neuropsych testing done the 1st and 2nd of October! They

can't give any preliminary findings for me to give to the school to get the ball

rolling because they want to wait until all the testing is complete. They don't

want to give a dx and recommendations, and then have the academic portion

contradict or add more to the story.

So, yes, although we have LOTS of problems at home (which the school

psychologist, who observed her for 45 min when she was in K, suggested was

likely caused by my lack of structure in the home setting), witness LOTS of

social awkwardness, hear our child speak of how she thinks she's stupid because

the other kids in class can turn in their work on time and she always takes way

longer, witness her stress EVERY DAY, ... as long as she sits at her seat and

doesn't cause any problems, they will continue to overlook her need for

assistance.

[Guest guest]

From:

[mailto: ] On

Behalf Of andie

.... as long as she sits at her seat and doesn't

cause any problems, they will continue to overlook her need for assistance.

It’s so sad and true, Andie. As a matter of fact, this is partly

why I’m glad that my son is so OUTWARD with his issues. Despite the fact that

it creates INCREASED amounts of stress at times, when he’s OUTWARDLY

struggling, they can’t ignore it. There’s pros and cons to both sides, for

sure.

Keep at it. You’re a great advocate for your daughter and I have

no doubt you won’t give up until she has what she needs

=)