Re: Which comes first (was: New Member from New Jersey)

Posted September 3, 2003 · September 3, 2003

Oh..no no ..

The board of education has to provide services that provide your child a Free Appropriate Public Education. They must do a comprehensive test to determine what areas your child is "behind" in. Just because your child has a disablity doesnt automatically qualify them for services. They are however protected under section 504 (ada). You should go to www.reedmartin.com to read up on this.

Most of the professionals ive come in contact with dont have a clue what ASpergers is and have this preconceived idea that all children on the spectrum are like rainmain...

My sons dx has been a blessing. I know that my sons interventions are headed in the right direction. Before the school was just grabbing at anything they could find... anything. To my family its been a blessing.

Its not an easy road.. and I had to educate myself and point these things out to my sons doctors and therapists. They had NO CLUE. Autism is really rarely seen (even though its becoming more and more prevalant), and Aspergers is often harder to dx than Autism. Sometimes you will just feel like you are a hamster running on that wheel...but at some point the wheel stops and you get off...

Which comes first (was: New Member from New Jersey)

> I'm fairly new to the group myself, and also in NJ - Bellmawr in Camden> County to be exact. I have a 5 yr old daughter, and we are also having> trouble getting a 'formal' diagnosis.> I'm in Brooklyn -- not too far away. My just-turned-eight year old son has language problems and was seeing a speech path and has also been evaluated by a physiologist who found developmental delays (although he totally messed up the evaluation by trying to force an intimidated child to give answers) but no one has said autistic spectrum yet. That's becuase no one has asked about Autistic Spectrum issues yet. He's got good eye contact with adults. Other than that he fits just about everything on the AS issue list. We only found out about AS a couple of months ago.What I'm wondering is whether it makes sense to go directly for the services, or if we should concentrate on a dx. I understand the the Board of Ed won't provide services without a dx, but I am thinking about getting some services privately. For example, he has all sorts of social problems because he doesn't have any idea how to play with other kids. He is not aggressive at all, but he doesn't attend to what other kids say to him and doesn't 'get' a lot of participatory play. So I am asking myself if there are social skills groups that he can attend just because he lacks social skills, or whether this sort of place would tell me to go away and come back when I have a dx.Any ideas?

Posted September 3, 2003 · September 3, 2003

Oh..no no ..

The board of education has to provide services that provide your child a Free Appropriate Public Education. They must do a comprehensive test to determine what areas your child is "behind" in. Just because your child has a disablity doesnt automatically qualify them for services. They are however protected under section 504 (ada). You should go to www.reedmartin.com to read up on this.

Most of the professionals ive come in contact with dont have a clue what ASpergers is and have this preconceived idea that all children on the spectrum are like rainmain...

My sons dx has been a blessing. I know that my sons interventions are headed in the right direction. Before the school was just grabbing at anything they could find... anything. To my family its been a blessing.

Its not an easy road.. and I had to educate myself and point these things out to my sons doctors and therapists. They had NO CLUE. Autism is really rarely seen (even though its becoming more and more prevalant), and Aspergers is often harder to dx than Autism. Sometimes you will just feel like you are a hamster running on that wheel...but at some point the wheel stops and you get off...

Which comes first (was: New Member from New Jersey)

> I'm fairly new to the group myself, and also in NJ - Bellmawr in Camden> County to be exact. I have a 5 yr old daughter, and we are also having> trouble getting a 'formal' diagnosis.> I'm in Brooklyn -- not too far away. My just-turned-eight year old son has language problems and was seeing a speech path and has also been evaluated by a physiologist who found developmental delays (although he totally messed up the evaluation by trying to force an intimidated child to give answers) but no one has said autistic spectrum yet. That's becuase no one has asked about Autistic Spectrum issues yet. He's got good eye contact with adults. Other than that he fits just about everything on the AS issue list. We only found out about AS a couple of months ago.What I'm wondering is whether it makes sense to go directly for the services, or if we should concentrate on a dx. I understand the the Board of Ed won't provide services without a dx, but I am thinking about getting some services privately. For example, he has all sorts of social problems because he doesn't have any idea how to play with other kids. He is not aggressive at all, but he doesn't attend to what other kids say to him and doesn't 'get' a lot of participatory play. So I am asking myself if there are social skills groups that he can attend just because he lacks social skills, or whether this sort of place would tell me to go away and come back when I have a dx.Any ideas?

Posted September 3, 2003 · September 3, 2003

Thanks for the response, TK.

Actually I know that the school has to test and provide services,

but my message wasn't very clear. I guess my questions are: Is that

the only way to get services? and Is that the best way to get

services? I'm kind of concerned that, if I got to the school, were

are going to: A) create a lot of stress for our son; spend a lot

of time on the hamster wheel; C) get the wrong dx that results in

our son getting services that are counter productive (such as being

sent to the resource room with rambunctious kids who frighten him);

and D) have a hard time making changes down the road if we think

changes are needed.

I'm not sure that he needs any particular accommodations in class

yet (he is just starting grade three and is very well behaved) and

we don't mind paying for private services if these are faster and

more flexible. In my ideal word I could just stroll down to the to

the nearest Autistic Spectrum Services 'R' Us and get started. I

know that is not going to happen, but I'm wondering if there is any

way to approach getting services other than going to the school.

> Oh..no no ..

>

> The board of education has to provide services that provide your

child a Free Appropriate Public Education. They must do a

comprehensive test to determine what areas your child is " behind "

in. Just because your child has a disablity doesnt automatically

qualify them for services. They are however protected under section

504 (ada). You should go to www.reedmartin.com to read up on this.

>

> Most of the professionals ive come in contact with dont have a

clue what ASpergers is and have this preconceived idea that all

children on the spectrum are like rainmain...

>

> My sons dx has been a blessing. I know that my sons interventions

are headed in the right direction. Before the school was just

grabbing at anything they could find... anything. To my family its

been a blessing.

>

> Its not an easy road.. and I had to educate myself and point

these things out to my sons doctors and therapists. They had NO

CLUE. Autism is really rarely seen (even though its becoming more

and more prevalant), and Aspergers is often harder to dx than

Autism. Sometimes you will just feel like you are a hamster running

on that wheel...but at some point the wheel stops and you get off...

Posted September 4, 2003 · September 4, 2003

Thanks for clarifying Ihave to warn you my brain is not

functioning very well today and its just all over the place..so if

this is confusing, Im sorry.

My son has gotten fairly good services through the school. Its

nothing to turn away from. Sigh.. unfortunately tests suck for

anyone (in my humble opinion). Regardless of private or school

intervention that is something he will have to undergo either place.

My son had private OT and Speech, we went through multiple OT's

before finding one that semi understood what was going on. It was

pretty easy getting services, however in our situation the schools

child find unit had intervened and done testing that recommended OT

services so the doctor used that to get us into OT and Speech. Our

insurance company actually approved visists without fighting (well

for a year, then they started having a cow). She however didnt

really work with " autistic " children but more of the mild DSI

children. So she at times was lost when it came to my child.

The speech therapist was the only one even willing to work with my

son. Often he frightened her, when he would go into a rage. I did

learn alot from the OT and have implemented a lot of things here at

home.

I thought that getting services for " autism " would be easier, but

unfortunately most of the services specifically for autism are

either not available in my area, really expensive, insurance doesnt

cover, or there are waiting lists. I found a listing of services

through our state autism society that made the " hunt " much easier.

A good dx doesnt happen overnight, and it shouldnt.

So..to your a,b,c 's.. ( So i dont ramble on and on..well ill do

that anyway and somewhere there is a point)

A. stress can be avoided if the situation is handled properly. I

know that before the school did their testing both the school and

myself prepared my son for what was to come. The school didnt just

jump in and start..it was also done over an extended period (this

was my choice because I didnt want my son to have lots of stress).

With private services, this isnt always available. I did however

take him to the facility a couple of times before the evaluations.

We went in and took a " tour " to help calm him down. I also took in

relevant documents and tests previously done so we didnt repeat

tests.

B. Oh the hamster wheel is the best part, didnt you know that? Of

course im being sarcastic. I have yet to met a parent who didnt

spend time there. Its almost like everything has to come together

just at the right moment. I fought with our insurance company,

doctors, therapists, the school.. you have to be willing to stand up

for your child and what you think is right. Dont EVER be afraid to

tell a doctor to more or less " stuff it " or that you dont agree with

them... it was all worth it in the end.

C. Pretty common to get incorrect dx's. So much of a dx is

subjective..what one perons sees isnt what another person sees.My

son was given a label at 2 of ADHD and partially deaf. Then at 3 it

changed to Sensory Integration Dysfunction and ADHD. Then at 3.5

the school told me he was " normal but odd and eccentric with his

behaviors. " Then from 4-5 ive heard, " typical roudy boy, bipolar,

schizophrenic, massive depression, oppositional defiant disorder,

obsessive compulsive disorder, and General anxiety disorder. "

Then when my son was evaluated by both the local mental health

agency and an autism center and was given the dx of Aspergers the

school didnt like that at all. They didnt want him to have a label

of " autism " because that meant more services for him. So they did

their own tests. During all this outside testsing the school wanted

to label him emotionally disturbed and place him in some class with

children who have severe behavior problems and model anything less

than " good behavior " . What a nightmare!!!! Luckily his local

therapist stepped in and made some good recommendations against

that. The school couldnt just ignore this person who has worked

wtih many asperger children in another very well known school

district in our state (he he..fight fire with fire).

Anyway, when their testing came out as autistic they had to label

him. It took me 1.5 years to get that label for my son through the

school district. He is now mainstream with an aide, gets OT in

class, Speech pull out services, and we have implemented a plan in

which he NEVER leaves the room. If he starts throwing a fit, the

teacher is supposed to move her class to another part of the room or

another room in the builidng. (Removing children from the room for

behavior problems in my opinon creates a postive reinforcement of

the bad behavior. They KNOW if they want to get out of the room or

doing something they just throw a fit). If he gets to far behind,

the school has a tutoring program available to all the children and

he gets placed in that same program (which he is entitled to). The

end point, is that its not easy. If you stick to you guns and dont

let the school intimidate you then you can acheive your end goal.

D. The nice thing about an IEP is that the school cant change

anything without your input. Thats plain and simple and if you dont

agree with them there are other things that can be done to

accomplish what you want. I have found that treating the staff with

respect and everyones opinion counting makes for a totally different

atmosphere (taking an advocate with you really makes a lot of

difference too, he he).

By the way, I love the Autism spectrum services 'R' us.. now thats

funny.

I hope this helps out.. I may add some other things later.. but my

brain is just " off today " ..

TK

> > Oh..no no ..

> >

> > The board of education has to provide services that provide your

> child a Free Appropriate Public Education. They must do a

> comprehensive test to determine what areas your child is " behind "

> in. Just because your child has a disablity doesnt automatically

> qualify them for services. They are however protected under

section

> 504 (ada). You should go to www.reedmartin.com to read up on this.

> >

> > Most of the professionals ive come in contact with dont have a

> clue what ASpergers is and have this preconceived idea that all

> children on the spectrum are like rainmain...

> >

> > My sons dx has been a blessing. I know that my sons

interventions

> are headed in the right direction. Before the school was just

> grabbing at anything they could find... anything. To my family

its

> been a blessing.

> >

> > Its not an easy road.. and I had to educate myself and point

> these things out to my sons doctors and therapists. They had NO

> CLUE. Autism is really rarely seen (even though its becoming

more

> and more prevalant), and Aspergers is often harder to dx than

> Autism. Sometimes you will just feel like you are a hamster

running

> on that wheel...but at some point the wheel stops and you get

off...

Posted September 4, 2003 · September 4, 2003

,

Actually, the school is the last place I went for

services. There are many other organizations and services that are much better

than the ones I have found in the local schools. My son is also very

cooperative and good in school. He didn’t need anything from them until he was

in 5th grade. Then, he needed some adjustments (i.e. seat placement

for better concentration, friendship/social skills groups, protection from the

bullying that starts getting bad at that age, etc) Prior to that, we had

outside social skills groups, occupational therapy (worth its weight in

gold!!!), and a physical coordination activity group. These activities did more

to help my son than anything he has gotten through the school. He was able to

process emotions and social situations better better, was able to figure out

how people were feeling, was able to deal with spatial issues, was able to

learn how to deal with lagging motor skills, became less tactily sensitive, and

his self esteem went way up as he was praised by each adult that was working

with him at every accomplishment he made! We have only gone to the school for

services that were necessary for his continued learning or protection (though I

know others have needed/received more than this) Anyway, I just wanted to let

you know there is more out there!!!

Rabecca

<< I guess my questions are: Is that

the only way to

get services? and Is that the best way to get

services? >>

<<I'm not sure that he needs any particular accommodations in class

yet (he is just starting

grade three and is very well behaved) and

we don't mind

paying for private services if these are faster and

more flexible. >>

Posted September 5, 2003 · September 5, 2003

Wow, TK. Thanks for the detailed answer. I really appreciate the

information.

Do the kind of services provided by the schools depend a lot on

where you live. I keep hearing unpleasant things about the NYC Board

of Ed. but there may be nothing to it.

Our

> The speech therapist was the only one even willing to work with my

> son. Often he frightened her, when he would go into a rage. I

did

> learn alot from the OT and have implemented a lot of things here

at

> home.

I'm surprised that people who are trained to work with kids who have

problems don't want to work with kids that have problem. Go figure,

huh?

> A. stress can be avoided if the situation is handled properly. I

> know that before the school did their testing both the school and

> myself prepared my son for what was to come. The school didnt

just

> jump in and start..it was also done over an extended period (this

> was my choice because I didnt want my son to have lots of stress).

>

> With private services, this isnt always available. I did however

> take him to the facility a couple of times before the

evaluations.

> We went in and took a " tour " to help calm him down. I also took

in

> relevant documents and tests previously done so we didnt repeat

> tests.

That makes a lot of sense. Thanks.

> Dont EVER be afraid to

> tell a doctor to more or less " stuff it " or that you dont agree

with

> them...

That's not a problem I'm likely to face. I'm pretty good with

the " stuff it " part ;-)

>

> C. Pretty common to get incorrect dx's. So much of a dx is

> subjective..what one perons sees isnt what another person sees.

That's what makes me wonder about the whole dx thing. It's not like

they can shake up a urine sample in a test tube and say, " Yup,

that's Asperger's. "

It sounds like you had to fight long and hard to get where you are

now, but it sounds like it was worth it. It's nice to hear that it

is possible to get results. Thanks.

Posted September 5, 2003 · September 5, 2003

> Actually, the school is the last place I went for services. There

are many

> other organizations and services that are much better than the

ones I have

> found in the local schools. ...

Prior to that, we had outside social skills

> groups, occupational therapy (worth its weight in gold!!!), and a

physical

> coordination activity group.

Thanks for letting me know that. Can I ask how you got these

services? Did you approach the service providers individually, or

was it a follow-on from a diagnosis you got. If you started with a

dx, how did you go about getting that?

Social skills and a physical coordination group would be so useful

for my son. It's not like school is not a challenge for him. It is,

because he tends to zone out or miss the point that the teacher is

trying to make. But this we can address at home, with a little

cooperation for the teacher. But what he really needs to learn are

not typical school things -- things like how to listen to other kids

as if the things that they say have meaning, how to respond to

success and failure in social situations, how not to upset his

playmates by saying thing like, " I think I'm finished playing with

you now. " . etc.

Posted September 5, 2003 · September 5, 2003

Re: Which comes first (was: New Member from New Jersey)

> Can I ask how you got these services? Did you approach the service providers individually, or was it a follow-on from a diagnosis you got. If you started with a dx, how did you go about getting that?

Heres my big old mouth again. You can get services many different ways.. like I did or by seeking them out yourself (if you have no insurance its easier to get the services, insurance companies will want you to take a certain route to get the services). The facility may require referrals from certain places before they will take the child or referrals may not be necessary.

Likewise there are different routes to getting a dx. A psychologist can dx, a developmental pediatrician can dx, a neurologist can dx, there are comprehensive teams that dx... Is there a support group in your area for parents of autistic children? If there is I would contact them and ask the other parents what they did and who they saw in relationship to you area. But what he really needs to learn are not typical school things -- things like how to listen to other kids as if the things that they say have meaning, how to respond to success and failure in social situations, how not to upset his playmates by saying thing like, "I think I'm finished playing with you now.". etc.

My son attends play therapy where we address his social skills. The therapist is teaching him how to correctly interact with other people. The school also has implemented a social skill plan around him. I live in a fairly small city, so we dont have a lot here. However, in the metropolitan area they have multiple social skills classes, autism centers, etc that deal with the above issues you mentioned.

Is there an autism center near you? That would be another good starting point.

TK

Posted September 6, 2003 · September 6, 2003

Check out your local Children's hospital. I'd imagine they'd want to

do their own evaluation, but they offer many services. Ours has PT,

OT, Speech, and Social Skills. Good Luck, a

PS Some colleges have discounted speech through graduate students.

> > Oh..no no ..

> >

> > The board of education has to provide services that provide your

> child a Free Appropriate Public Education. They must do a

> comprehensive test to determine what areas your child is " behind "

> in. Just because your child has a disablity doesnt automatically

> qualify them for services. They are however protected under

section

> 504 (ada). You should go to www.reedmartin.com to read up on this.

> >

> > Most of the professionals ive come in contact with dont have a

> clue what ASpergers is and have this preconceived idea that all

> children on the spectrum are like rainmain...

> >

> > My sons dx has been a blessing. I know that my sons

interventions

> are headed in the right direction. Before the school was just

> grabbing at anything they could find... anything. To my family

its

> been a blessing.

> >

> > Its not an easy road.. and I had to educate myself and point

> these things out to my sons doctors and therapists. They had NO

> CLUE. Autism is really rarely seen (even though its becoming more

> and more prevalant), and Aspergers is often harder to dx than

> Autism. Sometimes you will just feel like you are a hamster running

> on that wheel...but at some point the wheel stops and you get off...

Posted September 7, 2003 · September 7, 2003

,

What we

did for Tyler started really simple. After his teacher complained yet again

that he wasn’t either keeping up, had messier work than others, or became so

focused on one assignment that he neglected all others (all of which she put

off to being lazy or ADD due to his high intelligence), I decided it was time

to go ask his doctor. Because in the past, we had always been told not to

worry, that he was smart and good looking, I was worried about the doctor not

listening. Because of this, I asked anyone who was regularly around him to

write me a one paged letter that contained everything “odd” or “challenging”

that they had observed. This included his school teacher, his Sunday school

teacher, us as his parents, a neighbor, and a friend. Armed with very

thoughtful letters (most of them bulleted with the different oddities

observed), I went to his pediatrician (this first appointment without Tyler,

because I didn’t want him feeling like he was being picked on or wasn’t good

enough… I wanted to talk freely!).

The

pediatrician was really good. He read through all the letters, asked relevant

questions, and then referred us on to a place called Providence Children’s

Neurodevelopmental Center for evaluation. PCNC was great. They did an initial

evaluation, which showed that Tyler definitely qualified for occupational

therapy (one-on-one) and he began to go to weekly appointments with homework to

work on every day between appointments. Tyler thought it was really fun, even

though it was incredibly challenging. The specialist that was helping us really

bonded quickly with Tyler and knew exactly how far or what direction to push.

There were so many simple activities that made a huge difference. At this time,

we still didn’t have a diagnosis. Even though PCNC specialized in

Neurodevelopment, they didn’t feel qualified to make Tyler’s diagnosis. They referred

us on to a Neurodevelopmental Psychologist, who ran

even more tests (over two days worth) before diagnosing him as having

Aspergers. The good doctor not only diagnosed, but gave us numerous numbers,

names, and locations where we could access additional resources.

Tyler has

been able to receive exceptional occupational therapy. We were also referred to

a martial arts instructor who had a degree in both martial arts and in child

psychology. Tyler now has been attending martial classes for 3 ½ years under the

positive guidance of an instructor that knew and accepted his weaknesses/spatial

difficulties/oddities and now has gained considerable control over the

placement and use of his body. (it helped both large and small motor

coordination as well as spatial and social issues) Because the atmosphere is positive and noncompetitive, Tyler

has been able to feel successful without having to keep up with those

progressing around him. It is expected that he test for his black belt in

December. I would have never dreamed this could even be a possibility for a

child who started there not being able to stand on one foot, able to do jumping

jacks, able to close his eyes and touch his nose with a finger, able to walk

backwards, able to bridge, able to do a sit-up or pushup, etc… With both

occupational therapy and martial arts combined, Tyler was able to progress at

an astounding rate, much faster than the other students working with one or the

other. Tyler also had an opportunity (that he wasn’t able to take advantage of

due to scheduling) where he would learn to lead horses around for children that

had greater disabilities. By volunteering to help with the other classes, he

would then get riding lessons, which would also have helped with his balance

and physical development. By working with the horses, he would have learned

facial expressions and how to read animals, which would later translate into

reading people.

When Tyler’s

diagnosis and progress became a more prevalent part of our lives, it seemed

like resources started popping out of the woodwork. Tyler was invited to join a

“friendship group” that was meeting at his grade school. This group was limited

to those children who had symptoms of high functioning autism, Asperger’s,

ADHD, ADD, PDD, or PTSS. They worked on reading facial expressions, emotions, eye

contact, and dealing with conflict through playing games and group activities.

Tyler loved this group because it was a safe place to learn things that he

really had a hard time understanding or conceptualizing.

During

this time, Tyler’s OT gave him various props to try at school to see which

would help him most with concentration, staying focused, and transitioning.

Though some of the props seemed unusual, some that I would never have thought

of worked pretty well! Once we realized that Tyler was starting to need some

school support (around 4th grade), I set up a meeting with the

school principle, teachers, resource specialists, and psychologist. I came

armed with letters from the Neurodevelopmental Psychologist, his occupational

therapist, as well as my own list of observations and conclusions. The school

of course wanted to run their own tests, which of course came back

inconclusive. They didn’t understand how a child could be talented and gifted

and still need special support in other areas. Anyway, we brought in a load of

information and asked to meet with the district’s Autism Specialist. Since

their AS didn’t have time to meet with us right then, the school compromised

with a 504 Plan that was based upon his medical diagnosis and his OT’s

recommendations. Within a year, with a supportive teacher standing by our side,

we had the 504 Plan fine tuned so that it exceeded his needs and he was able to

excel within the school environment. Because of the teacher’s noticing the

difference it made, they demanded that the 504 Plan follow him to junior high

as written. The junior high has taken many steps to ensure a smooth transition,

including numerous phone calls last year to really get to know Tyler’s needs

and to better understand parts of the plan, planned visits to the school at the

end of the year last year and before school started this year, a meeting

between me and his new guidance counselor that they set up for his second day

of school so that we could discuss how his first day went and anything we may

need to watch for etc.

Though the

school is beginning to take a more active role, it is definitely secondary. What

they are doing is ensuring his ability to learn in their environment, not

helping him overcome the limitations that can be linked to Asperger’s. We have

taken it on ourselves to continue the outside support services to help him with

that. Within the past year, we have added a couple things. Tyler now attends

Game Club once a month. It is a special game night for kiddos with Asperger’s.

My son LOVES going and it has allowed him to feel not quite so alone in all of

this. Plus, he gets to socialize with others that accept him as he is… which is

really nice for all of us… The parents all stay and watch, which means that we

share ideas, support, and solutions as well… It is just a really great concept!

This post

is turning into a book, so I’ll stop it now… If you have any questions, I will

be happy to answer… but it may take me a couple days due to going to school

full time, working full time, and being a hands-on parent!!!

Rabecca

-----Original

Message-----

From:

Sent: Thursday, September 04, 2003

9:57 PM

To:

autism-aspergers

Subject: Re: